Tuesday 7 June 2016
[Andrew Percy in the Chair]
Support for Life-shortening Conditions
I beg to move,
That this House has considered support for children and young people with life-shortening conditions.
Mr Percy, may I say what a pleasure it is to serve under your chairmanship for the first time? [Hon. Members: “Hear, hear.”]
Prior to entering Parliament, I spent most of my working life in the hospice movement, with both adults and children. I worked in hospices, including Hope House in Oswestry; East Lancashire hospice, which cares for adults in the east Lancashire area; and Martin House children’s hospice, which cares for children in the Yorkshire area. During that time, I saw children and their families at their most vulnerable, looking for any kind of solace in what are probably the most challenging circumstances that any of us could possibly imagine.
In my 14 years working in the sector, I saw the hospice movement adapt and grow to meet the needs of children and young people as medical technology and provision developed. That growth was achieved by listening and putting the patients first at all times. However, unfortunately, there are still cases across the broader palliative care sector where that does not always happen, and that is why this debate is so important. There are currently 49,000 children and young people—and the number is rising—living in the UK with life-shortening conditions.
It is a pleasure to serve under your chairmanship, Mr Percy. I congratulate the hon. Member for Pudsey (Stuart Andrew) on securing such an important debate. He just quoted a statistic. Does he agree that data collection is one of the most important factors? Robust data collection is needed so that we do not underestimate the number of children who are suffering from life-shortening conditions.
The hon. Gentleman makes an important point, which I will come to later.
Some 49,000 children and young people are living with conditions that are life shortening, by which we mean conditions for which there is no reasonable hope of a cure and from which most of those young people are expected to die. The conditions can include conditions for which curative treatment may be feasible but can fail, as is often the case with cancers or congenital heart diseases; conditions for which premature death is inevitable but where there may be prolonged periods during which the child is well, such as Duchenne muscular dystrophy; progressive conditions such as Batten disease, without any curative treatment; and irreversible, but non-progressive, conditions that cause severe disability, leading to susceptibility to health complications and premature death, such as severe brain injuries.
The number of young people affected by one of those four categories of condition is equivalent to one child in every single school, and 50% of the 5,000 children who die in the UK each year will have one of those conditions. Of course, the number of people affected in other ways is much higher. Parents, siblings and other family members and friends can bring the number close to 400,000 people, which equates to more people than the population of the city of Leicester.
The 49,000 children and young people need palliative care from the point at which their condition is diagnosed or recognised—often at birth—until the end of their lives. There is an entire package of outcomes that good palliative care should achieve, which is quite different from that which adults receive given that children often need care throughout their entire life. Good care should meet children’s physical, social and emotional needs, enhancing their quality of life to ensure that the child and their family can come to terms with such life-altering issues.
I congratulate the hon. Gentleman on obtaining this important debate. I am sure that many people here will have come into contact with children with such difficulties. Does he agree—he touched on this point—that more psychological help is needed for the parents, especially when the children are approaching the time of death? It is a very difficult time. There need to be very quick results. Help is needed for the parents as well.
I absolutely agree. During the time I spent in the hospice movement, I learnt that those final few weeks are incredibly distressing. None of us can possibly imagine what it is like unless we have been through it. The support for the parents and the wider family is what makes much of what happens in the children’s hospice movement such a success.
The care must be age appropriate—suitable for a child’s particular stage of development—and administered by people who have the exact skills needed to get the person through their care pathway. A comprehensive local children’s palliative care service spans health, social care and education. Joint commissioning is vital and should be accessible 24/7, 365 days a year, from diagnosis to bereavement. As a result of the complexity and severity of patients’ needs, the transition from children or youth services to adult services can be particularly daunting.
I am grateful to my hon. Friend for securing the debate and for the well-informed points he makes. Is it not the case that improvements in medical technology mean that more children with life-limiting conditions are transitioning into adulthood? Therefore, we have a real duty of care to ensure—as Acorns Children’s Hospice in my constituency is doing—that we find the best pathways to support those people into adulthood and to give them the best chance of living a quality life with the time that they have.
My hon. Friend is right. I saw great advances throughout my time in the hospice movement. When I first joined Hope House, the life expectancy of the children who suffered from Duchenne muscular dystrophy was usually no longer than 18 or 19. By the time I had finished my career in the hospice movement, some were living into their late 20s and possible even their early 30s. Transition is incredibly important for them, because often the style of care provided is geared more towards the older generation than to young people.
Transition is incredibly important and centres such as Martin House, which I worked for, understand that. It built Whitby Lodge, a dedicated unit for teenagers and young people, which has state-of-the-art equipment designed to enable social interaction through things such as a mini nightclub—something that we all take for granted. As well as caring for children and young people in the hospices, members of the care team supported the family in their home. Even after a child has died, help is provided in the form of bereavement care for family members.
Transitioning to other services can sometimes present real difficulties. From dealing with new agencies and professionals, to transitioning to a completely different plan, the result can create quite severe gaps in service provision. The impact is, frankly, quite shocking, with 36% of families breaking down, 64% of mothers and 24% of fathers having to give up work entirely, and nearly 70% of siblings being bullied or feeling isolated at school.
All that can create a cocktail of problems that leads families into poverty. Therefore, at all times, it is vital that locally available, community-led children’s palliative care is at the heart of the service provision. These kinds of services are, thankfully, easier to find than they once were due to local offers and organisations such as Together for Short Lives, which provide directories of available services. That is just one example of how provision has changed since I began working in the hospice movement.
I will never forget seeing families, drained and exhausted, arriving straight from work or school on a Friday, the colour drained from their faces with no fight in them, dragging bulky equipment around in their car, when all they wanted to do was what we all like to do—go out for a simple meal on a Friday night. Great palliative care allows those families to have short respite breaks, the importance of which really cannot be overstated, because it provides support to everyone in the family. With the number of children and young people with life-shortening conditions increasing, it is becoming harder for the Government, the NHS and local councils to budget enough to meet those families’ needs, given that the number of people with such conditions is not being monitored, as the hon. Member for Torfaen (Nick Thomas-Symonds) mentioned. The complex care that such families need from multiple agencies and professionals is not joined up enough, and families have to fight with their last ounce of strength to get the services they need. I therefore ask my right hon. Friend the Minister what can be done to ensure that the number and needs of children and young people with life-shortening conditions are more accurately monitored.
Funding for voluntary sector providers of children’s palliative care is not being provided fairly or sustainably. It is limited to medical elements of care and does not include crucial non-clinical elements such as short breaks and bereavement support. Together for Short Lives expects to publish soon the results of a series of freedom of information requests it has made to clinical commissioning groups and local authorities. Those results will show the extent to which different elements of care are being commissioned, and I hope that colleagues from across the country will use those data to see how their own constituents’ care is performing.
Before that, I ask the Minister whether he can set long-term plans for funding children’s palliative care fairly, sustainably and in a way that reflects the growing demand for such services. Additionally, will he work with his colleagues to write to CCGs and local authorities to make it clear what their responsibilities are in commissioning palliative care? Local authorities have a duty to provide short breaks for disabled children. However, they are cutting funding for short breaks at a time when demand from seriously ill children is increasing. The Government and local authorities, of course, face a difficult situation in balancing budgets, and I fully understand the need for that to happen, but at the spending review the Government gave councils the ability to raise more money for adult social care through council tax. Children’s social care was left out and I struggle to understand why, so I would appreciate it if he expanded on that. Additionally, will he hold local authorities to greater account for the money they spend on short breaks for disabled children and ask them what action they are taking to secure access to such breaks?
As I have mentioned, without access to specialist adapted vehicles, which many families need and many of which I saw, families are unable to transport their seriously ill babies and young children to and from hospital. That often traps those babies and young children at home or in a hospital bed, preventing them from enjoying the things that we all take for granted. Children under three with life-shortening conditions are not currently eligible for the mobility component of disability living allowance, so will the Minister work with his colleagues in the Department for Work and Pensions to change the eligibility criteria so that nought to three-year-old children with life-shortening conditions, whose lives will end without heavy and bulky medical equipment, can have access to such important vehicles?
I certainly agree. As I mentioned earlier, it was staggering to see the smallest child come with so much equipment to keep them alive. Larger vehicles enable such families to do the things that every family likes to do, for example to go out for the day. The lack of such a vehicle often creates more isolation for the siblings I mentioned a moment ago.
Further to that point, does the hon. Gentleman agree that, given the sensitivity of the issue, as he has laid out so well, it is terrible that the basic message to those families who have a child with a life-shortening illness is that the reason they cannot get that support is that the child is not old enough? That is a perverse message for those families.
I take that point entirely. In this debate I want the issue to be considered carefully, because it seems perverse for a child to be too young to get the support they really need.
Medical advances thankfully mean that more young people with life-shortening conditions are living into adulthood. That should of course be celebrated but, as I have said, the transition from children’s services to adult services can be daunting and is often not joined up. There is currently a distinct lack of age-appropriate and developmentally appropriate palliative care services to meet the growing demand, so again I ask the Minister whether he will look into providing seed funding to voluntary sector organisations so that they can set up age-appropriate services for young people transitioning from children’s services to adult services.
I end by paying tribute to all the organisations, including Together for Short Lives, and all the people who were involved with Children’s Hospice Week a couple of weeks ago. Those dedicated people are really quite superb. I could never have done my job at Martin House or at Hope House without their tremendous effort. Their reputation helped us to raise the money we needed, and we should all pay tribute to the tremendous work they do. I hope that today’s debate will mean that we can all work together so that things can change for those 49,000 children and young people who are battling with the most difficult issues that we could possibly imagine.
It is a pleasure to speak in this debate. I congratulate the hon. Member for Pudsey (Stuart Andrew) on clearly outlining the case and how we all feel about this important subject. I apologise in advance for not being here to hear the shadow Minister and the Minister—I have apologised to them both. I have to attend the Select Committee on Defence, otherwise I would look forward to hearing what they have to say.
This issue is important to me, as it is to the hon. Member for Pudsey and others in the Chamber, which is why we are here. We are here to represent our people and their viewpoints on issues that they want to be debated. There are Members here with personal stories, some of which we have heard before, and I look forward to hearing some of those stories again.
Life-shortening conditions are those for which there is no reasonable hope of cure and from which children are expected to die, or for which curative treatment may be feasible but can fail. Children with life-shortening conditions need continuing palliative care throughout the trajectory of their illness. As I always do in Westminster Hall and in the House, I will give a Northern Ireland perspective. The Minister knows that health is a devolved matter in Northern Ireland, and I will therefore add to the debate and the knowledge we all have by addressing some of the positive things we are doing in Northern Ireland. By sharing knowledge from across the United Kingdom of Great Britain and Northern Ireland we have an opportunity to enhance and enrich our lives and to help ourselves to do things.
In Northern Ireland alone there are currently estimated to be some 1,300 children and young people living with life-shortening conditions. Many of those children have extremely complex and unpredictable conditions, and they are under the pressure of requiring round-the-clock care seven days a week. Due to medical advances and improved care, that prevalence is growing and more of those children are living into adulthood.
The hon. Member for Pudsey and my hon. Friend the Member for Upper Bann (David Simpson) referred to families and how important it is for children under pressure and in need of medical assistance to have family support. It is about their parents, their siblings, their grandparents, their family circle and their friends coming together to give support and help at the right time. Because the proportion of young people and children in the Province with life-shortening conditions is less than 1%, people might be inclined to believe that they are an underfunded and perhaps neglected section of the population, but fortunately they would be wrong. More can always be done, but in Northern Ireland the work to support young people and children affected by life-shortening conditions has been positive and is ongoing.
Health may be a devolved matter, and this debate may be most pertinent to NHS England, but such conditions affect British children across the whole United Kingdom of Great Britain and Northern Ireland, and it is therefore important to make such points. It is important to link the work of Government institutions across the United Kingdom to determine what is best practice and what is not, and to share ideas on the way forward. Hopefully this debate will give us an opportunity to do just that.
We have discussed palliative care. Does my hon. Friend agree that it is important that complete, wrap-around palliative care is given to those affected? What happens to children with life-shortening illnesses post-19 has been an issue across the whole United Kingdom for far too long, and we need to address it.
My hon. Friend has hit on the kernel of the issue.
We need to exchange medical advances among all regions of the United Kingdom. We want to ensure that we in Northern Ireland have information about what is happening in London, Scotland, Cardiff or wherever it may be. I also want to put on the record my thanks to all the doctors, nurses and consultants involved, and to all the other people who genuinely, consistently, honestly and energetically give their time for the children affected. I have some constituents who have attended Great Ormond Street children’s hospital, not only for life-threatening conditions but for life-changing ones, and we thank everyone for what they do.
That is absolutely right. It is so important in a time of physical, emotional and spiritual need.
Although it is critical for the Government to provide appropriate support, non-profit organisations and charities are often the most innovative and forward-thinking, because they are made up of people who are motivated and dedicated to making a difference. The Government need to resource those people properly so that their efforts can bear fruit and those affected by their work can receive the benefits of such support.
The hon. Member for Pudsey referred to the changes in disability living allowance. I will not repeat his words, but I wholeheartedly support what he said. How important it would be if we had a realistic disability living allowance system in place for those from nought to three, as well as from three onwards. It would only be a small change. The Minister knows that I respect him greatly—he is responsible and positive, and others want to hear from him today—and I say respectfully to him that he could use his position to make that change. It would make a hands-on difference, as my colleague the hon. Member for Foyle (Mark Durkan) said earlier.
Northern Ireland Children’s Hospice and Together for Short Lives are just two of the many organisations that make a difference in Northern Ireland. I commend them for their efforts not only to provide support for young people and children with life-shortening conditions but to research and produce realistic and helpful ways forward. They make a positive contribution.
I will quote testimony from an anonymous parent who went through palliative care for their young child in Northern Ireland. It sheds some light on what the experience can be like for normal, everyday people in the unfortunate position of having to live through such circumstances:
“Having had a child born with very complex needs, we found ourselves in the horrendous position of spending the first and last seven months of our child’s life in a neonatal unit and children’s ward. Our daughter was only able to come home for two separate days during this period. This involved ambulance transportation and two nurses. The process of getting her home for good was so complex and arduous it could not be completed before she died. Although hospital staff were brilliant, a busy general ward is not appropriate for end of life care.”
That puts things into perspective and reminds us that we are dealing with real people’s lives in this House. What we do and say has an impact on people across the country.
The same charities that I mentioned earlier have published a set of recommendations for the Northern Ireland Assembly—it has responsibility for the issue, and the Minister has recently changed—that will, in their view, transform the lives of children and young people with life-shortening conditions. Among the seven recommendations are calls for a dedicated children’s palliative care consultant in Northern Ireland, improved access to multidisciplinary services for children who need palliative care and high-quality planning to support young people as they transition to adult services. Although we are doing those three things in Northern Ireland, if they were in place here on the mainland as well, it would be a step in the right direction to improve things.
Critically, the recommendations also call for a fully funded children’s palliative care strategy for Northern Ireland, which would address many of the core gaps and provide a framework for appropriate and consistent children’s palliative care services for every family who needs them in Northern Ireland in the future. In Northern Ireland at present, a growing number of doctors, paediatricians and GPs are interested in children’s palliative care and are gaining vital knowledge and experience every day. However, the number of senior paediatricians with the necessary qualifications to be considered expert remains in the single figures.
The recommendation for Northern Ireland—again, I hope it will happen on the mainland as well—is to have a regional consultant. That is vital, but just one consultant for Northern Ireland would not be enough. A better option would be to have two part-time consultants who could overlap in looking after patients. It would mean that someone would always be available, 52 weeks of the year.
Mr Percy, I realise that I have overstepped my time, and I apologise. I will end with these two paragraphs. We know all too well that the purse strings have been tightened, but those are just a few of the ideas put forward by people working on the front line. They are the ones who know best, the ones closest to the reality of palliative care for young people and the ones who must live and work with the medical and financial implications of Government policy. They are the ones we need to listen to if we wish to make the difference that I think everyone in this Chamber, this House and across the whole United Kingdom of Great Britain and Northern Ireland wants.
No child should have to suffer as a result of being diagnosed with a condition through no fault of their own, and no family should have to live through such suffering. We are in a position to make a difference. If national Government liaise constantly with charities and those affected, surely progress is possible.
I congratulate my hon. Friend the Member for Pudsey (Stuart Andrew) on instigating this debate. Life-shortening illness is an issue that many hon. Friends will have experience of from their surgeries; it is invariably moving and humbling.
I felt driven to speak in this debate because of a constituent of mine, a truly inspirational young woman called Lucy Watts. Lucy is 22 and suffers from a rare genetic condition called Ehlers-Danlos syndrome—I hope that I have pronounced it correctly—with life-limiting complications. It has left her disabled and wheelchair-bound since she was 14. She is hooked up to intravenous drips almost 24 hours a day and is largely bed-bound.
Nevertheless, Lucy does not allow her illness to rule her. She is a writer, a speaker, a charity ambassador and trustee, a blogger, a patient-leader and a spokesperson. She has appeared in filmed and recorded work, including on TV and the radio, campaigning for young people with life-limiting disease. Lucy was awarded an MBE by Her Majesty in the new year honours list—all this at 22, and with a life-shortening illness. Those are achievements that many of us could not hope to realise in an entire lifetime. I am immensely proud of Lucy, and I urge hon. Members to take time to visit her amazing website, “Lucy’s Light”.
As chair of the all-party parliamentary group on brain tumours, I know too well the dreadful impact of severe illness on younger people and their loved ones, as brain tumours are the largest cancer killer of children and young people under 40. Only a few weeks ago, we had a debate in this Chamber highlighting the impact of brain tumours and the fact that they receive only about 2% of research spending, despite their effect on reducing lifespans.
Through Lucy, I have also been introduced to the work of the charity Together for Short Lives. As has been said, the charity does incredible work with young people such as Lucy who are diagnosed with life-threatening illnesses. Unfortunately, but understandably, our society often feels uncomfortable discussing sick and dying children. Of course it is uncomfortable; as a mother, I can think of no greater horror. We would like to brush it aside and not focus on it, but we cannot afford to ignore the topic. My parents lost an older brother of mine, so I know some of the impact of being with and losing a sick child. It lasts a lifetime, and it affects the whole family.
Lucy has been keen to make it clear to me that young people desperately need care packages that bring together all three services—health, social care and education—in an age-appropriate way. I am glad to see that we are making some steps towards reforming the health and social care mix in this country, but much more needs to be done, and much faster.
A recent study suggests that the figure of 49,000 children and young people across the UK with life-shortening conditions could be underestimated by as much as 50%. The current population is not being adequately recognised, supported and funded by local authorities and clinical commissioning groups. The research suggests that a further 25,000 children and young people are effectively being ignored. In addition, that is reflected in the policy environment, where too often children’s palliative care needs are inappropriately coupled with those of adults. Children’s needs are much more complex, and must focus on quality of life as well as quality of death.
As we know, two weeks ago it was Hospice Care Week. Hospices are lifelines for families such as the Watts family. The work of hospices, such as Little Havens hospice in Daws Heath in my constituency, is invaluable for those who need support and advice. However, as Lucy has found, a children’s hospice such as Little Havens is not geared up to support a young adult and nor is the local adult hospice, meaning that Lucy is forced to travel from Essex as far as Winchester, despite the complications and difficulties of her illness, to access age-appropriate hospice care. That cannot be right.
I am proud that the Conservative-led Government ensured that there was a £60 million boost for hospice care and I hope that hospice care will continue to receive the vital funding it requires. As I have said, hospices really are a lifeline for families during the most heart-breaking of times. However, we must do more to support hospices such as Little Havens. The cost of palliative care for children is estimated to be £200 million a year, yet the grant for these services is just £11 million a year.
We owe it to Lucy and to thousands of other young people in similar situations to face up to the issue and not only see that that grant is increased, but ensure that research funding is directed more towards the illnesses that impact on the young and that take away the greatest number of years from young people’s lives. Too often we see research funding and care funding being focused on the most common illnesses, which are often less complex and have fewer implications for life expectancy. We have not got our focus right in this area and we need to adjust it.
It is very encouraging to see so many hon. Members here in Westminster Hall today and I look forward to working with the Government to ensure that we provide much more age-appropriate care for young people with complicated illnesses.
It is a pleasure to serve under your chairmanship, Mr Percy, in your new appointment.
I congratulate the hon. Member for Pudsey (Stuart Andrew) on securing this debate and I apologise in advance that I may need to leave a little bit early to attend the Women and Equalities Committee.
The provision of support for children whose lives are shortened by illness is a difficult issue to discuss. No parent wants to think that their child will not reach full adulthood or that they will spend their whole life being ill. However, that is the reality for too many parents. Therefore, we must do all we can to support families with sick children, to allow them to make the most of their time together.
My own experience of this issue comes from supporting many families with a loved one who experienced a short life. Through the young carers service, I volunteered to support the families of children living short lives, including their siblings. Those families were brave and inspiring, triumphing over what was probably the saddest time of their lives. Those siblings overcame those periods and went on to be incredible young adults themselves.
I echo the sentiments of the hon. Member for Strangford (Jim Shannon), who thanked the medical professionals and practitioners, the organisations and the charities, in this area. They provide constant support and care throughout this sad experience and, in many cases, afterwards, as the families go through the bereavement process.
As we have already heard, the charity Together for Short Lives has estimated that 49,000 children and young people in the UK have life-shortening conditions. However, the charity itself admits that that number could fall short of the true number of children affected by these conditions. I echo the sentiments of the hon. Member for Torfaen (Nick Thomas-Symonds); he is no longer in his place, but he discussed the need for robust data collection to ensure that the support necessary for families is available and that we quantify that support in an adequate way. Although I recognise the challenges that all Governments face, for someone to have to explain to a family that they simply cannot support them in their time of need because of a funding issue is not sufficient; indeed, for those families, it is simply not good enough.
Investment in research is absolutely crucial to medical advancement, and it can also increase the life chances of many children and improve the experience of many families. The reality is that Governments, the NHS and local authorities are currently unable to budget sufficiently to ensure that there is enough money to meet the needs of these children because there is simply an unknown number of them. As I say, that goes back to the point made earlier about the need for correct data to ensure that adequate funds are provided. I put it to the Minister that this situation must be rectified so that we can adequately respond to the demand to close gaps in services and ensure that there is welfare provision for children in palliative care.
Funding is vital. Surveys have revealed that 89% of children’s hospices could be forced to reduce their services if their funding from Government was stopped, so I urge the Minister to consider the best way to support those valuable services, to ensure that there is continued funding for them; I hope that he will consider that issue.
The Scottish Government are committed to ensuring that people can access high-quality palliative care, regardless of their age, diagnosis, socioeconomic background or where they live. As part of that commitment, funding for children’s hospices has parity with that for adult hospices, and I hope that the UK Government will make the same commitment to provide such parity. The Scottish Government’s strategic framework encourages support and promotes the further development of holistic palliative care for those in the birth to 25 age group. I urge the UK Government to make the same commitment to children and young people across the UK.
I will touch briefly on the issue of welfare and the UK Government’s attitude to it. Many families who have children suffering from life-shortening illnesses will be hardest hit by the welfare reforms. At present, families with a disabled child in receipt of disability living allowance may be entitled to £60 per week. Under universal credit, that sum will be cut to £29 per week. In other words, the families of thousands of children will have their household budgets slashed at a time when they absolutely need such support.
Any parent of a child with a life-shortening illness wants to spend as much quality time as possible with their family. Instead, families affected by welfare changes will face substantial additional costs, as a result of having to pay for specialist aids and adaptations for their home, not to mention the additional visits to health services and the associated travel costs.
For many of the families across the UK who are caring for sick children, one of the greatest challenges that they face is accessing appropriate transport. We have already heard how vital it is that the Government consider the impact of their policy and ensure that mobility aid for families of children under the age of three is also in place, because we simply cannot discriminate on the basis of age. Those families need that vital support, but children under the age of three who have life-shortening conditions are currently ineligible to receive it. I hope that the Government will reconsider that.
A growing number of children within that age range require extra medical care, including palliative care. Some babies and their families have permanent wheelchairs and are unable to use them, or specialist buggies, without the necessary transport provision. Without specialist adapted vehicles, those families are unable to transport their young children to and from hospital, which obviously disrupts family life. It also means that families will miss out on making valued—in fact, cherished—memories with their children.
In closing, I must highlight that the burden of providing care for sick children can push families into poverty. In Scotland, and indeed in my constituency, 25% of children and young people with life-shortening illnesses live in the areas of highest deprivation. Providing equal access to sources of support is of paramount importance, to ensure that those children get the most out of their short lives. Helping them to achieve that is dependent on our giving as much support to their families as is required, so I urge the Government to take all measures necessary to provide that support as much as they can.
I am very grateful to my hon. Friend the Member for Pudsey (Stuart Andrew) for securing this debate, which, as Members know, is on an issue that I feel very strongly about. It was heartening to hear about the work of the Hope House hospice that serves my constituents, although it is based over the border in Shropshire, and about the work of Claire House, which is a very effective children’s hospice on the Wirral.
Other hon. Members have spoken powerfully about the transport issues and the transition issues, so I will concentrate on the families and the role that they play. It is particularly important to do so this week because it is Carers Week, and we know the vital role that parents play.
My hon. Friend made an important point about the 2% funding that was mentioned in the Chancellor’s Budget and the fact that that funding is limited to adult social care. There is no justifiable reason for that discrimination. It is clear that local councils have cut their funding for services, particularly for short breaks. The impact of that on families is devastating. Thirty-six per cent. of families with children who have life-limiting conditions experience family breakdown. Therefore, it is vital that the Minister recognises that cuts by local authorities to the funding for those short breaks lead to increased burdens on Government elsewhere and that it is short-sighted not to fund those short breaks, which give the families and the siblings the vital respite that is often needed to ensure that they stay together as a cohesive unit and get the break from some quite onerous caring responsibilities. I do not say that in a negative way. All the parents absolutely love their children and want to give them the best they can in the short lives they have, but they need that break and the time for themselves.
I am grateful to my hon. Friend for making that important point and I would like to give an example. I always remember speaking to a father at the hospice who said that if he got up eight times in the night he considered that a good night’s sleep. Does that not highlight just how important it is that the families get the respite that they need?
It is absolutely critical. I have experienced the situation in which, because of advances in medical science, the doctors cannot say whether someone will fall on one side or the other of the line of likely life expectancy—fewer or more than 25 years—and they do not qualify for support from the voluntary sector. Hospices play such an important role in supporting families and I give credit to the Government for funding children’s hospices, albeit not at the same level as adult hospice care.
There is, however, a cross-border issue, which Claire House neatly exemplifies. The hospice treats a number of Welsh patients—it will not turn children away—but it does not get funded for any of the treatment it gives to them. I urge the Minister to consider having National Institute for Health and Care Excellence clinical guidance that would apply nationally and help to iron out some of the wrinkles, perhaps taking some of the best practice in the devolved nations. We have heard powerful contributions about some of the efforts being made in Northern Ireland. There is some learning that can be gained from across the devolved nations, but guidelines would ensure that hospices were put on a sustainable footing.
On that point, I support the call for joint commissioning and ask the Minister to consider what happens after the death of a child. I am here partly in my capacity as the chair of the all-party group on baby loss, and the subject has been debated elsewhere. There is important counselling support that could be put in place before the loss of a child and, indeed, afterwards. Hope House, for example, has a dedicated counselling centre and I am delighted that recently—in fact, just this week— I got confirmation from the Treasury that the Alder Centre could apply for LIBOR funding. The centre provides vital bereavement support for families in the north-west and I very much hope that it puts in an application before August. That is a beacon of light perhaps in the north-west and in the debate.
I wanted to pick up on my hon. Friend’s extremely well-made point about sustainable funding. Chestnut Tree House in east Sussex provides the most extraordinary care for children and young people with life-shortening conditions but, despite the huge merit of its work, it has only 7% Government funding, and it is not confident about securing even that, year on year. The local efforts are magnificent. For example, just last month, 700 women walked the seafront in Eastbourne and raised more than £70,000, but that equates to just 11 days of care at that extraordinary place. The hospice wants to increase its services—it is not looking to retract any. It says that there are many more families it can support.
That is typical of the hospice movement. St Luke’s hospice, which provides adult care in my constituency, is looking to expand its services, and hospices such as Hope House and Claire House are also happy to do so. I know that the Minister has a new per-patient funding currency for children’s palliative care, which will come in next April, but in the meantime hospices need certainty of funding so that they can commission services. I urge the Minister to impose some requirements on clinical commissioning groups, to ensure that there is not that cliff edge that has been spoken about today and that we have joined-up provision from, literally, the cradle to the grave, with support afterwards for families who need it.
It is a pleasure to serve under your chairmanship, Mr Percy. I congratulate my hon. Friend the Member for Pudsey (Stuart Andrew) not only on securing the important debate but on his work for and support of Martin House hospice in west Yorkshire. As he knows, our part of the world in Yorkshire is very well served indeed. I have the Forget Me Not children’s hospice in Huddersfield supporting 185 local children and their families. We have identified, however, that there are probably more than 1,300 who need our support. The hospice has been up and running for only about three years, under the inspirational leadership of Peter Branson.
As we have heard, funding is an important issue and a big challenge for our children’s hospices. The Forget Me Not children’s hospice needs to raise £3.8 million every year, with only 6% of that coming from Government funding. It was nice to hear about the wonderful fundraising efforts for the local hospice of my hon. Friend the Member for Eastbourne (Caroline Ansell). A couple of weeks ago, more than 1,000 people took part in a colour run. They raised thousands of pounds for the Forget Me Not children’s hospice by running through the beautiful fields of west Yorkshire and having coloured paint thrown at them. I have done my bit for the hospice by running the London marathon twice, but I would probably rather have paint thrown at me than run around the streets of London for four and a half hours—actually, 4 hours 44 minutes.
Some important issues have been highlighted this morning, and having been out with the wonderful nursing team from the Forget Me Not children’s hospice the one thing that has really struck me—we have talked about this—is the importance of respite care and short breaks for families. I remember visiting a single mum whose young daughter with muscular dystrophy had a breathing tube. I asked the mum what it was like caring for her daughter and we talked about the lack of sleep. She had not had more than two and a half hours of unbroken sleep at night for four years. I could see the tiredness in her eyes, but she was incredibly uplifting and made no complaint whatsoever. She was very inspirational; I think about her a lot. The nursing team would visit her twice a week, not only to care for the daughter but to give the mum an opportunity to have her hair done, go shopping for herself or have a coffee with friends. That was important to her, as a mum and as a person, and it helped her to give even better care to her daughter. I say to the Minister that finding an opportunity for short breaks and respite care is so important.
We have mentioned the funding element, and I have talked about the Forget Me Not children’s hospice, but we also need to think about the workforce and the specialist skills the hospice teams need to provide palliative care. We must ensure that we have a sustainable workforce, with specialist skills, experience, knowledge and competence, so that the wonderful children’s hospices can continue to give wonderful care, not only to children but to their families.
I finish by thanking all my colleagues here for making their wonderful contributions. I again thank my hon. Friend the Member for Pudsey (Stuart Andrew) for raising the issue and securing the debate.
It is an honour to serve under your chairmanship, Mr Percy. I am pleased that the hon. Member for Pudsey (Stuart Andrew) has brought the debate to the House. I raised the matter at business questions during Children’s Hospice Week, and I am glad to have the opportunity to speak in a debate about it.
There have been many interesting contributions today, and I am pleased that so many people have taken so much time not just to research the matter but to go and meet people, hear their real-life stories and bring them to the House. That is really important; it is not just about numbers, it is about the impact on people’s lives, and the debate has been good at highlighting that.
I thank Together for Short Lives, which prepared a briefing that many of us have seen, and the Aberdeen charity Charlie House, which has provided me with a lot of information in advance of the debate so that I can speak on behalf of families. It is key that we get as much information as possible, including about real-life scenarios. In paediatric palliative care, we are pretty much having to make things up as we go along. That is not any kind of criticism of those who work incredibly hard and do a huge amount of research to try to make lives better, but it is a situation we have not been in before.
The Children’s Hospice Association Scotland produced a report in 2015 that explained that we are seeing an increase in the prevalence of children and young people with life-limiting conditions, which is projected to grow further. As a result, the situation throughout the UK and the world is uncharted territory. We cannot just say, “This is best practice” and lift it, because we are all having to find our way in this scenario. As a result, Governments throughout the UK—the devolved Governments and the Westminster Government—are not necessarily getting everything right, because this is a new scenario for all of us. The best way to ensure that we get this right and provide the best support is to listen and speak to the families and ask them about what they need and the hurdles they are facing.
When a family has a baby with such a condition, it is an unforeseen circumstance. They do not imagine that that child will not learn to sleep through the night, will not learn to crawl and walk and will not go through a weening process and begin to eat solid food. It is an unforeseen and unforeseeable situation. A lot of the conditions that such children have are totally unplanned for and could not have been predicted beforehand.
One thing that has been touched on, but not explored in a huge amount of detail, is the financial impact on families. My hon. Friend the Member for Lanark and Hamilton East (Angela Crawley) mentioned that 25% of families with children with life-limiting conditions live in the most deprived areas of our communities. Those families start from a position of not having a huge amount of money in the bank, and they are then faced with a situation in which more than 60% of mothers and more than 20% of fathers have to stop work. They require support from the Government, because it is impossible for them to survive otherwise.
My hon. Friend is making an excellent case. I visited the Children’s Hospice Association Scotland, and it said that some of the families that it deals with are not even aware of the benefits they are entitled to and get support on that from CHAS. Could the Government do more to encourage people to take up the benefits they are entitled to for their children?
I absolutely agree; that is something that the Government could do better. Again, that is not just the Westminster Government; it is an issue for Governments across the UK. It is very difficult when a family is suddenly thrown into a situation where they have a child who requires an incredible amount of support. They are trying to find out about children’s hospices and medical support and trying to work out what condition their child has. They are trying to swim through all that while keeping the family financially afloat. If the Government have not been proactive in providing and signposting all that support, it is even more difficult for families already dealing with an incredibly difficult situation. As the hon. Member for Colne Valley (Jason McCartney) said, in a lot of cases they have to do it with next to no sleep. The situation is almost impossible, and it is incumbent on us to ensure that we do all we can to help those families.
I want to touch on a couple of other points that Members have mentioned. The hon. Member for Eddisbury (Antoinette Sandbach) mentioned the importance of families having a break and respite. I underline the point made earlier that children’s hospices are not like adult ones. They provide support from diagnosis, or from the time when it is realised that the child may not survive childhood. Some 75% of the support provided by children’s hospices is through short breaks. We cannot overstate the difference between adult hospices and children’s hospices. There is a requirement that the Government provide them with different levels of statutory support, because they are a totally different kettle of fish.
The children we are talking about have 24/7 care needs, as a number of Members have mentioned. The importance of respite care cannot be overstated. The hon. Lady and the hon. Member for Strangford (Jim Shannon) mentioned sharing the knowledge we have of best practice in the devolved nations and spreading what works. One problem we have in Scotland is the lack of children’s hospice care. We have only two children’s hospices in Scotland, and they have a total of about 15 beds. Families in my constituency have to do a 200-mile round trip to access a hospice, and that is on the weekends that work for the hospice, because there is such a big waiting list. I do not think that is appropriate. We need to work on that. In previous years and decades gone by, it was not necessarily so much of an issue, because there were fewer such children and families. It is now increasingly becoming an issue. That is why Charlie House in my constituency is working hard to get a hospice built in Aberdeen so that there is local access. As my hon. Friend the Member for Lanark and Hamilton East said, the Scottish Government are committed to trying to ensure that we have a geographic spread of services, as well as the spread of services needed for children with all the different conditions.
I appreciate the fact that we have had this debate so that we can discuss these matters, and I appreciate the feeling in the room about working together to try to find a way forward that helps everyone.
One point I will briefly mention, because it has been mentioned a number of times, is the issue of transport for those aged nought to three. That would be relatively easy for the Government to fix and would make a massive difference to the financial impact on families, particularly those who are struggling financially as it is. It would be a massive help.
Thank you, Mr Percy, for your chairmanship, and I once again thank the hon. Member for Pudsey for securing the debate.
It is a pleasure to speak with you in the Chair, Mr Percy. I also thank the hon. Member for Pudsey (Stuart Andrew) for securing this important debate, to which he has been able to bring considerable knowledge. I congratulate him on how he opened the debate. We have had many important contributions this morning from the hon. Members for Strangford (Jim Shannon), for Castle Point (Rebecca Harris), for Lanark and Hamilton East (Angela Crawley), for Eddisbury (Antoinette Sandbach) and for Colne Valley (Jason McCartney). We have also had some shorter contributions from my hon. Friend the Member for Torfaen (Nick Thomas-Symonds) and the hon. Members for East Londonderry (Mr Campbell), for Foyle (Mark Durkan), for Eastbourne (Caroline Ansell) and for Glasgow Central (Alison Thewliss).
Many of us have talked about the charity Together for Short Lives. We thank it for its input to the debate, which it has welcomed. It feels that discussion of children who are dying and the support they need is hindered by a public taboo. The palliative care needs of children can be coupled inappropriately with those of adults, when, as we have heard, their needs are much more complex and focused as much on quality of life as on quality of death.
A key point that has been made in this debate is that we do not have enough data to commission and fund appropriate services to support children with life-shortening illnesses and their families. The most recent estimate is that 49,000 children under the age of 19 are living with life-limiting or life-threatening conditions, although I understand that that is based on data from 2009-10. Without Government monitoring of changes in the data, there are real difficulties in providing the care and support needed by children, young people and their families. Local authorities and CCGs already find it challenging to commission and provide palliative care locally because relatively few children in any given area will need that care. Without more accurate data, it is harder to commission and provide the services needed. Cross-departmental collaboration and better co-ordination among organisations are also needed.
The issue with funding is clear. There are different funding streams from different Departments and from local organisations. As we have heard, a remarkable amount comes from fundraising. We have specialised children’s palliative care commissioning, general children’s palliative care commissioning and the commissioning of children’s social services. NHS England, CCGs and local authorities all have a part to play in funding palliative care services for children, but as we have heard it is often unclear who is responsible for funding different services. There is terrible uncertainty about the availability of future funding for services. Indeed, Together for Short Lives found that CCGs contribute just 10% on average to the cost of the care that children receive in hospices, compared with an average contribution of around 30% to the cost of care in adult hospices. As we have heard from the hon. Member for Eddisbury, the Department of Health is testing per-patient funding for children’s palliative care for commissioners to use in 2017, but I understand that is not going to be mandated, so there will be no obligation for clinical commissioning groups to adopt that level of funding. Will the Minister clarify how the Government plan to ensure that adequate funding will be provided in future for palliative care services for children?
We know that funding from local authorities for children’s social care has become even more stretched. Local authorities can of course raise additional funds for adult social care through the social care precept, but that does not apply to children’s services. We also know there has been a significant increase in the number of referrals to children’s social services since 2009. The Local Government Association has raised concerns that the 40% real-terms reduction in core Government funding over the previous Parliament and subsequent budget cuts have meant that local authority services are being reduced significantly. The 2014-15 budget figures show a reduction of 20% for spending on children’s centres and early-years services since 2010.
We have heard quite a bit about breaks. Although local authorities are required to provide short breaks for disabled children, the funding for this has decreased, which means families are receiving less support, despite having significant caring responsibilities. We have heard about the extent of the caring responsibilities for carers of children with life-limiting conditions. The Every Disabled Child Matters partnership found that 58% of local authorities had cut their short-breaks spending by an average of 15% between 2011 and 2015, with some councils cutting this funding by up to 26%. In carers week, the fact that family carers are receiving less support and fewer short breaks should be of real concern to us.
I do not often go to my iPad for notes, but I had a look at Lucy’s blog; what she says about her mother as her carer is important.
“In reality, it is all down to my mum. She phones person after person, arranges blood tests and appointments and sorts out all of my medication, one of which has to be couriered down from London every few months, and when I’m on intravenous antibiotics, she drives to the hospital to pick up the drugs and picks up the equipment from the district nurses. My mum does my TPN and medication every day, she administers IVs and takes blood from my hickman line, gives injections, dresses wounds, can catheterise me, mixes and prepares medication, and so much more; she can do things many nurses can’t do...She liaises between consultants and departments. She sorts out my prescription and collects medication. She deals with my personal budget and pays my carers. She’s my mum, nurse, carer, PA and best friend. It’s all down to her. She’s given up her life to keep me alive, not having a holiday or break in 6 years.”
She should be able to have a holiday and a break.
As has been said in this debate, we need to find a way to hold local authorities to account for the money to spend on short breaks for disabled children. I hope the Minister can tell us what action he will take to make sure that seriously ill or disabled children and their family carers can access short breaks.
In March 2015, the Health Committee published a report of its inquiry into palliative and end-of-life care. It called on the Government to ensure that future funding proposals fully recognise the importance of the voluntary sector. The report also called on the Government to set out how they intend to ensure the sustainable long-term funding that we have talked about in this debate. It is clear from the many contributions today that improvement is needed to ensure a sustainable funding settlement for children’s palliative care in future.
I want to touch briefly on the importance of social and community palliative care and support services. Hospices do a wonderful job, but children are not always in a hospice. The Rainbow Trust children’s charity supports more than 2,000 families across England whose children have a terminal or life-threatening illness. This includes families in my constituency. The trust supports 99 families in Greater Manchester, including nine families in Salford. The family support officer for the team in Greater Manchester says that the most common concern raised by parents is the reduction in the statutory hours of support they receive. Increasingly, families are reporting having the number of hours of support reduced with no alternative service offered. It is important that the support provided by charities such as the Rainbow Trust should not be seen as a substitute for inadequate statutory support. The Greater Manchester Rainbow Trust team works closely with the Diana nursing team in Salford to provide all-round support to children’s families at home and in hospital. Both services are vital.
Charities such as the Rainbow Trust provide an essential service to families outside a hospice setting, and we must make sure that those community palliative care services are supported. I can tell the Minister that the statistics are very impressive for a small charity. In 2014-15, the Rainbow Trust provided nearly 3,000 hours of sibling support, more than 10,000 hours of home support, 7,700 hours of hospital support and more than 1,000 hours of bereavement support. Members have referred to the importance of bereavement support, which is a key aspect of the issue. Sadly, the Rainbow Trust receives only 3% of the funding needed for all those services from statutory authorities. I hope the Government will recognise the value of community palliative care and support and how it can work alongside hospice care to provide families with the support they need from the moment a diagnosis is made.
Children’s services provide excellent care in an age-appropriate environment, but, as we have heard, young adults tend to have different needs from young children and older adults. As more children with life-shortening conditions live longer—we are all grateful that they do—they are more likely to make the transition into adult care settings. Unless suitable age-appropriate services are offered to help with this transition, young adults may be lost in the system. The hon. Member for Castle Point spoke of the impact on Lucy and the travel she had to do to find services. What will the Minister do to ensure that young adults making the transition to adult palliative care services have the support that they need?
As we have heard in this debate—like everyone else, I want to touch on this—changes in benefit eligibility could also help to ensure that families get the level of support they need. Most people would not think of the importance of the mobility component of the disability living allowance and perhaps not register that the fact that it does not apply to children under three was such an issue, but of course those children need special equipment such as ventilators or the permanent wheelchairs that we have heard about, and families need to transport that equipment. It is a dreadful thought that with precious and limited time for children and families to spend together, the families are unable to get out and are stuck at home because of equipment issues. Will the Minister raise with his colleagues at the Department for Work and Pensions the need to change the eligibility criteria of the DLA mobility component so that the families of children under three with life-shortening conditions can access it? It has been said that it is easy to fix: I hope that he thinks it is.
Many hospices, hospitals, social care providers and charities provide excellent care and support for children with life-limiting conditions and their families. I want to join others in this debate in thanking them for all that they do, but it is clear that more needs to be done to develop a sustainable funding system that can provide a fully integrated service for families at all stages of their child’s illness. The importance of those services for families with a child who has a life-limiting illness cannot be overestimated. We are talking about people who give up their lives to provide support, as Lucy’s mum has done. We are talking about parents who get very little sleep. We should really think that through during carers week. I hope the Minister will assure us that more will be done in future to make sure that every family with a child living with a life-limiting condition can access the support that they need when they need it.
It is a pleasure to serve under your chairmanship, Mr Percy. I am sure we have all found the debate that you have conducted enlightening, interesting and extremely collaborative. I congratulate my hon. Friend the Member for Pudsey (Stuart Andrew) on securing it. He has a long history of championing the children’s hospice sector as a fundraiser for Martin House and has been at the forefront of efforts in Parliament to publicise the needs of children with life-limiting conditions. I thank him for that, as others have done.
I apologise for the absence of the Under-Secretary of State for Health, my hon. Friend the Member for Battersea (Jane Ellison), in whose portfolio this subject normally sits. She is overcommitted and trying to be in two places at the one time, so I am delighted to have the chance to respond to the debate. In a lengthy and varied ministerial career I have had the pleasure most of the time of being in a position where I can work with the House rather than deal with confrontational situations. Occasionally politics intervenes, but most of the time I have had the opportunity to do what I am going to do this morning, and I appreciate the way in which the debate has been handled and dealt with.
I shall briefly pick out some of the points made in individual speeches. With his usual courtesy and kindness, the hon. Member for Strangford (Jim Shannon) told some personal stories and made an important point about sharing experience. He also helped us out with some information from Northern Ireland, as he so often does. My hon. Friend the Member for Castle Point (Rebecca Harris) spoke of the inspiration of people such as Lucy, whom I shall quote in a moment. She made several points about transition and the need for people to have a voice. The hon. Member for Lanark and Hamilton East (Angela Crawley) and others raised the issue of mobility, which I shall address in a moment.
My hon. Friend the Member for Eddisbury (Antoinette Sandbach) is very much involved in these issues, and I am pleased that she talked about carers during Carers Week. There is still time for carers who are listening to get involved in the call for evidence on the new carers strategy. On the back of this debate, some information from carers for those with children with life-shortening illnesses would be particularly welcome. If carers could submit their information—they have until the end of June—that would be great. My hon. Friend also spoke about the need for counselling and issues relating to the end of life.
My hon. Friend the Member for Colne Valley (Jason McCartney) gave us moving stories about lack of sleep and illustrated the sort of lives carers lead when looking after their children. That personal insight really brings it home, as do those of other colleagues. I appreciated the interventions made by my hon. Friend the Member for Eastbourne (Caroline Ansell) and other colleagues.
Of the two Front-Bench spokespersons, I know the hon. Member for Worsley and Eccles South (Barbara Keeley) well and, with her background in caring, her contributions are always to be listened to. She touched on several issues, including data and the funding of short breaks. I shall come to them all. I have not had the pleasure of listening to the hon. Member for Aberdeen North (Kirsty Blackman) before, as our portfolios have not crossed, but I really appreciated how she approached the subject, and particularly what she said about our being in uncharted territory. That is the truth.
A generation ago, the Minister in my position would probably not have been having this debate, or it would have been very different. Now, because of advances in medical science, we are working with children and families with whom we would not previously have been working. That gives rise to a whole series of new issues for all of us, and to a certain extent we are all feeling our way. The financial pressures are obvious, whatever the Government—whether it is devolved or in Westminster—but new work is being done all the time to tie up the different elements and agencies that handle packages of care. The hon. Member for Aberdeen North was particularly good on that, and I appreciated what she said. We can always learn from those around us.
I picked up in the debate issues such as data, social care, short breaks, mobility, transition and integration, about which I shall say a little in the course of my remarks. The hon. Member for Worsley and Eccles South read out a quote from Lucy, who has been mentioned several times, and the hon. Member for Aberdeen North mentioned the importance of listening, which is the bit I wanted to pick out from what Lucy said. I had experience of that many years ago as Minister with responsibility for disabled people, and it has come up again and again. I shall read from Lucy’s piece on the website of Together for Short Lives, which I commend for its work on this issue. I would be grateful if the House would take a moment to hear Lucy’s voice:
“All throughout my illness, and my life in general, the one thing I’ve always wanted is to be listened to. That is extremely important. I have very little control in my life, being dependent on others for almost everything. The only bit of control I have is my opinion and my ability to make decisions. I value this greatly. However, I am not in control over whether people listen to my opinion. My opinion or decision is only in my control if people listen to it and take it on board. It’s hard for some people to understand why I get so upset if someone makes a decision on my behalf without my consent and prior knowledge, but when it’s the only thing I have control over, you can understand why. Healthy people make decisions all the time and everyone has their own opinion. But when you’re sick and/or disabled, suddenly some people think it’s ok to make decisions for you, as if, somehow, being sick or disabled makes your opinion worthless or unnecessary. Others do it to be kind, but it still can be upsetting. I am perfectly capable of making my own decisions, and so I should be involved in all decisions that concern me or affect my life. My decision, no matter what it may be, should be supported. Be it what clothes I want to wear, where I want to go or even down to things like whether I want to be kept alive by machines or if I choose not to have life-prolonging treatment. However hard or important the decision, the individual should be listened to—even if you don’t agree with what they’re saying.”
That is a remarkable personal statement from an obviously remarkable young woman, to whom we have all paid tribute during the debate.
Turning to the main part of my speech, I shall start with some remarks about funding before using the generous time I have been allowed by tackling some of the individual issues that have come up. Some children and young people have very complex health needs, which may be the result of congenital conditions, long-term, life-limiting or life-threatening conditions, disability or the after-effects of serious illness or injury. The NHS and related services support such children in a range of ways, but the role of children’s hospices is crucial, and it is right that we focus on it today. I am grateful that so many individual hospices and organisations have been mentioned in the debate, not least by my hon. Friend the Member for Pudsey in his opening speech. I pay tribute to Keech hospice, which is based just outside my constituency on the outskirts of Luton. It covers Bedfordshire, Buckinghamshire and Hertfordshire, and I thank the staff there for the work they do.
I also thank St John’s hospice in Moggerhanger, a Sue Ryder organisation for which I have run a couple of marathons. My hon. Friend the Member for Colne Valley mentioned a time of four and a half hours; my time the other week was six hours. Obviously age is getting to me. I shall have to work on cutting down my time next time, but I did appreciate seeing the Sue Ryder cheering team on the Embankment about a mile away from the finish. A hug at that time of the day was most welcome. I thank all those who partake in fundraising efforts for children’s and adult hospices throughout the country. Those efforts cannot be overstated and are really appreciated.
As hon. Members will recall, the coalition Government initiated work to look at the basis on which palliative care services are commissioned for people of all ages. That work continued under this Government, reflecting the importance that we attach to these services. The aim of the work was to have a more transparent and local approach to commissioning services. Children’s hospices in particular have not always enjoyed a very close relationship with local health commissioners—neither primary care trusts nor clinical commissioning groups. That is largely a reflection of their history. They developed as voluntary sector organisations, driven by people’s time, good will and charitable donations.
Of course, many commissioners do support local children’s hospices and hospice-at-home services, and we have heard of some good relationships today, but there is variation in commissioners’ awareness of the valuable role of children’s hospices, and in the extent to which commissioners—both local authorities and CCGs—fund them. That has been usefully highlighted by research undertaken by Hospice UK and Together for Short Lives, as was mentioned earlier.
Children’s hospices are not just a vital resource for care and support to children with life-limiting conditions; there is also a clear role for hospices and hospice-at-home services in supporting families by providing respite care for children and young people with complex needs and disability. We want that to be encouraged as part of a more strategic approach to children’s health outcomes. We now have new statutory requirements in relation to children with special educational needs and disability that require CCGs and local authorities to work together. Such a model of integrated arrangements would provide a framework for wider support to children and young people with complex or life-limiting conditions, so it is an opportunity we should support.
In supporting more integrated arrangements for commissioning for children and young people, we want to emphasise the role of the hospice sector as a provider of respite care, and how such provision can dovetail with other specialised and universal services in a co-ordinated way. That can be supported through far greater transparency about the nature of care and its costs. As colleagues have mentioned, the coalition Government agreement pledged to introduce a new per-patient funding system for hospices by 2015 to cover care for adults and children, regardless of which organisation provides it. The aim was to have transparency about services and costs, which would allow local commissioning of palliative care.
The long process of data collection and costing—I will come back to data shortly—was a model of co-production with the sector. It identified considerable complexity in developing a new system that is sufficiently responsive to the varied needs of palliative care, particularly in the case of children’s hospices. It resulted in a draft palliative care currency, which is being used and tested locally, and the aim is to publish a final currency next year. As the hon. Member for Worsley and Eccles South said, it is not a mandatory payment system but a first attempt to group specialised palliative care into packages that are similar in the resources needed and, in particular, in workforce requirements. It does not attribute prices to the packages, as they are for local negotiation in the usual way as part of the commissioning process.
There are concerns that the currency approach does not reflect all the services provided by hospices and that a young person and their family might need, and that it perhaps lacks the flexibility that I mentioned. The currency is a useful basis for local discussions between providers and commissioners, but it is work in progress. It is clearly not the end point, although we have moved on from where we were.
NHS England recently convened a round table on children’s palliative care, which included representatives from the children’s hospice sector. It identified that the varied nature of children’s palliative care requires us to consider other funding models. NHS England and Public Health England recognise that a per-patient tariff—the principle behind the currencies for palliative care—may not be the only or the most suitable funding model for palliative care, particularly given the diverse range of the needs of children and young people with life-limiting conditions. NHS England will review with stakeholders a range of potential approaches to palliative care funding for children and young people, using the existing currencies as a basis for different models. My hon. Friend the Member for Pudsey will be glad to know that the children’s hospice sector will be part of that work. The aim is to identify the most practical approach to funding, which will allow strategic discussions between CCGs and providers and transparency about the care packages that are being secured.
I am glad to say that we are able to provide more direct support in the form of the £11 million grant that NHS England makes available to children’s hospices. The future of the central grant is a topic to which we return regularly. I appreciate that it is a source of uncertainty and frustration to children’s hospices that NHS England is not able to provide a long-term guarantee or a multi-year confirmation of the grant. We should recognise, however, that it is not dissimilar to other areas of health funding and that, in that respect, children’s hospices are no different from other providers of health services. NHS England itself does not have a long-term allocation, so it cannot in turn make long-term commitments about grant funding to children’s hospices. However, NHS England, on behalf of the Government, has made a clear, ongoing commitment to continue to support children’s hospices. There is no question of the abrupt cessation of that support if there is no sustainable local commissioning alternative in place. I know the children’s hospice sector will welcome local commissioning arrangements, and ultimately their success should mean an end to a rather unusual central grant, but the former must be in place before we can have the latter. My Department and NHS England are equally keen to ensure that the transitional process is smooth and that it is achieved by working closely with the sector.
There are a number of imaginative funding developments and ideas. My hon. Friend the Member for Winchester (Steve Brine), who was unable to take part in the debate, reminded me of a submission from Naomi House in his constituency. It talked about the very successful 30% contribution contract arrangements that exist across the south-west, including in Wiltshire, Dorset and Bournemouth and Poole. It stated that in many ways, the model in the south-west is a great example of Government policies in action, with services being funded by pooled budgets of health and social funds. It continued by saying that the system of a contribution, rather than full cost recovery, is an example of third sector and public bodies working together to achieve value for money and the delivery of quality services, which helps to avoid family breakdown and unnecessary admissions to hospital, leading to further savings.
I know a lot about data collection from my other portfolio—mental health services—because the Opposition spokesperson, the hon. Member for Liverpool, Wavertree (Luciana Berger), has made it a specialist subject on which she could speak on “Mastermind.” She has helped me to encourage the Department to do better on data collection. As I outlined, the NHS and the Government have been through a process to determine a new funding model, which has assisted in uncovering more of the necessary data. I am assured by my officials that further work will go on.
The identification by commissioners of children with a life-limiting condition is essential to ensure the efficacy of commissioning plans. There is also a need to ensure that professionals who are not usually in contact with children with life-limiting conditions, such as in primary care, are fully aware of the child’s needs. The Department is exploring the potential for a flag on general practice information technology systems to allow practitioners to note when a child or a young person has a life-limiting condition. More data collection is certainly on the cards. Effective conditioning has to start with effective identification. In 2014, the Department of Health issued guidance for health and wellbeing boards on children’s complex needs, which provides key insights on effective needs assessments. That work will continue.
On social care funding and short breaks, a question was asked about local authorities, council tax and the adult social care model. Local authorities have to make complex choices about how to target resources more effectively. With my adult social care hat on, I am well aware of the social care precept. The Department for Communities and Local Government is undertaking a comprehensive and thorough review to devise a new formula to assess councils’ needs and to provide fair funding for every type of local authority ahead of the introduction of 100% business rate retention by the end of this Parliament. There is clearly a lot of work to do over the coming months to work out the details of the new system. The DCLG will consult with local government more widely on the issue shortly. I encourage my hon. Friend the Member for Pudsey to make representations to the DCLG about funding children’s social care in the same way as the adult social care precept works. Perhaps he and other colleagues will take advantage of that review.
Since 2011, the Government have made it a statutory requirement for all local authorities to provide a variety of short break services. Regulations require them to publish a short breaks duty statement describing what short break services are on offer in their area and how they can be accessed. It must form part of the local offer of services for children and young people with special educational needs and disabilities. The Government contend that that transparency is really important. When asked about their implementation of special educational needs and disability reforms in February 2015, the vast majority of authorities reported that they were keeping their short break budgets the same as for 2014-15, but I am aware of the pressure that exists. The Under-Secretary of State for Health, my hon. Friend the Member for Battersea, will certainly review the debate, and I have heard what colleagues have said.
I will also draw my hon. Friend’s attention to the issue of mobility, which virtually every Member has mentioned. When I was the Minister responsible for disability some years ago, I was in charge of mobility, so I am well aware of the benefit and impact of mobility assistance. Concerns have been raised about the age limit, which is an issue for the Department for Work and Pensions. There was a meeting between Together for Short Lives and my noble Friend Lord Freud in February 2016. The response, which is on its way to Together for Short Lives, indicates that my noble Friend the Minister listened very carefully. It says that, if there is to be a change, it will involve primary legislation. That is perhaps not quite the short and simple answer that we all want, but he committed to ask his officials to explore whether there are other ways in which the Department can provide support. I will certainly report to my hon. Friend the Member for Battersea how important mobility is to those with very young children.
The Government provided £420,000 in grant funding to Together for Short Lives to help the transition taskforce look at how the transition between children’s and adult services can be eased. I know that is an important factor for many families and will be increasingly important in the future.
I hope I have covered all the issues that colleagues have raised. If there is anything that I have not covered, I will write to the colleagues who raised it. If it is something substantive, I will put a letter in the Library so that colleagues present in the debate can pick it up there. I am grateful to all Members who spoke and to the constituents who involved them in what they are doing. I again thank my hon. Friend the Member for Pudsey for raising this issue and colleagues for the way in which they have debated it. This is an important issue, and I hope the debate has reflected that.
Motion lapsed (Standing Order No. 10(6)).
I beg to move,
That this House has considered the conveyancing process.
It is a pleasure to serve under your chairmanship, Mr Percy, and I thank the Minister for being present today to respond on behalf of the Government. I refer you to my entry in the Register of Members’ Financial Interests, because Spicerhaart estate agent kindly provides a regular donation in kind by printing my parliamentary “Reporting Back” publication. I was also a practising property solicitor, although I gave that up on election to this place.
As a nation, we have long held home ownership to be a valued tradition. This Government have done much to promote home ownership and to make it easier for people to get on to the property ladder. Once someone has saved a sufficient sum for a deposit, perhaps utilised a Government scheme such as Help to Buy, and found a house to purchase, however, the conveyancing process kicks in, and recent mortgage research from Which? suggests that seven in 10 people who have bought or sold a home have found it to be nerve-racking and the biggest source of stress apart from getting a divorce. Having a child, changing jobs and arranging care for an elderly relative are all said to be less stressful than getting involved in the property market.
Are we surprised by that? A person or couple have put in their offer and instructed a conveyancer. They pay a retainer to the conveyancer to cover the cost of searches, which is about £200; for a survey, which is between £200 and £600; and any fee due to their mortgage adviser. They also complete a load of paperwork, and then wait and wait until their conveyancer informs them that they are in a position to exchange contracts. If one gets to that point, the house is under contract and people can breathe a sigh of relief. To be clear, up to and until that point, either party may pull out of the transaction, and usually no costs are recoverable. But is that okay because such cases are rare? No. More than one in five property transactions fall through each year—around 200,000—and about £270 million is wasted annually on legal fees and surveys for failed house purchases.
As I mentioned, by way of background, I was a practising solicitor specialising in residential property, so I worked in this area of law and have first-hand experience of the frustration of the conveyancing process in England and Wales. I am not, however, a poacher turned gamekeeper, because although conveyancers are far from blame free, the issues that need addressing are largely with the system and the process. Conveyancers are often demonised, because they are the day-to-day contact with their clients and the venting point for frustration, but in many cases they are not responsible for the numerous obstacles that can arise as part of the house-buying or selling process.
At the end of last year, I was pleased to see that Her Majesty’s Treasury and the Department for Business, Innovation and Skills announced plans for a call for evidence to explore
“options to deliver better value and make the experience of buying a home more consumer-friendly.”
That is no easy task, but I am delighted that the Government are taking it up. Recognising the issue is the first step, although I fear that finding possible solutions will not be as easy.
I will touch on some of the obstacles and frustrations in the conveyancing process, with my observations. Residential conveyancing is covered by the doctrine of caveat emptor—let the buyer beware. The purchaser’s conveyancer is therefore responsible for checking the title and undertaking relevant searches and surveys. That leads to detailed inquiries and, despite the Law Society trying to curb them where they are general, they still represent a considerable administrative burden. The burden is also on the purchaser’s conveyancer to be satisfied on behalf of purchasers and, in most cases, their mortgage lender. There would therefore be considerable merit in clarifying the extent of a conveyancer’s obligation to the client and mortgage lender.
Gazumping is the practice of buyers outbidding those who have already had an offer accepted. The practice causes huge frustration and disappointment for buyers who think they have secured their dream home, only to find that they lose it in a heartbeat to someone with deeper pockets. It also means that those buyers, who lose out regularly, end up paying for abortive legal costs, mortgage consultant fees and survey fees, which can run into thousands of pounds, adding insult to injury. Gazumping accounts for 21% of collapsed sales, while only 15% are because the buyer pulls out at the last minute. The answer could be a financial commitment pre-contract, which would be forfeit should the seller, without warning, raise the price or pull out of the sale.
I congratulate my hon. Friend on securing this important debate. The last time a Government looked at gazumping was under Labour, which set out to tackle it, but actually tackled a completely different problem and introduced the ill-fated home information pack. Does he agree that any proposal to change legislation should involve the industry, including estate agents—I refer the House to my entry in the Register of Members’ Financial Interests—and the legal profession, to ensure that any changes are beneficial to the process?
I thank my hon. Friend for his intervention, because he is right: any change that the Government make has to be in association and after consultation with the industry, which is estate agents, solicitors, licensed conveyancers and surveyors—everyone involved. If we do not take them with us, any change will simply not work.
Long chains are commonplace in the conveyancing process. They can cause considerable delays to buying and selling. Although chains can be and do get broken, it is not easy, and action such as encouraging short-term lets could provide an answer. There is no question in my mind but that the simplification and standardisation of the mortgage application process would be a good first measure to consider, potentially including an industry standard of instructions and documents for the conveyancers to deal with. I recall the minefield that, in practice, is the Council of Mortgage Lenders handbook, with parts 1, 2 and 3, and all lenders having differing requirements. Reducing or standardising that handbook would lead to a reduction in the work that a conveyancer needs to do, therefore considerably speeding up the process.
There is a strong argument for deciding on agreed protocols and procedures in the conveyancing process. I recall that, in practice, it was only when a sale was agreed, conveyancers instructed and a retainer paid that property information protocol forms would be sent out to clients. Those forms are far from simple and take several hours, if not days, to complete, which means at least a week of delay before they are returned to the conveyancer to be sent on to the purchaser’s conveyancer. Comprehensive and standardised questionnaires would create consistency, and enable those selling a property to complete the forms when the property is originally put on the market.
Furthermore, I argue that estate agents have a part to play. They could be obliged to obtain basic information when a property is first marketed, and they could provide more detailed standardised property questionnaires from the conveyancer for the seller to complete while a buyer is being sought for the property. That might shave at least a week off the conveyancing process.
To remain on estate agents, several pieces of legislation affect them, in particular the Estate Agents Act 1979 and the Property Misdescriptions Act 1991. However, things have clearly moved on since then, and I suggest that we might need to review the existing legislation to make it fit for purpose. If, for example, estate agents were licensed—a potential option—the other regulated professionals, such as surveyors and solicitors, would have more confidence in relying on them to manage their part of the conveyancing process.
Currently, landlords and managing agents charge for information about leasehold properties and, in my experience, it often took weeks to receive the information. That causes considerable delays, especially when there is a chain of leasehold properties, which in our great capital city is commonplace. Regulation of the sector dealing with leasehold properties could be the answer, including, for example, minimum response times and a centrally held database of management packs, particularly for large blocks.
Finally, I will reserve some of my fire for my former profession. The move towards factory conveyancing with ridiculously low fees is not only leading to delays, but potentially costing clients. As fees fall, the margins fall and firms need to take on more and more work to remain profitable. That means that many conveyancers are reactive instead of proactive not out of choice but out of necessity. It is the client who then suffers as conveyancers cannot meet their rightly high expectations. Trade bodies have tried to address that by introducing specialist conveyancing credentials such as the kitemark. They have played some part in driving consumer choice, but ultimately—this is my experience and I think the industry would support me in this—the vast majority of clients are primarily motivated by the fee instead of the credentials of the conveyancer. That often leads to lots of complaints being made retrospectively—“I wish I’d used another firm. I wish I’d looked into it.”
May I declare an interest? I am still a practising solicitor. I have been very interested to hear what my hon. Friend has had to say and I have a lot of sympathy with it. One thing he has not touched on is the Scottish system, which is distinct from the English system. Does he think there is some merit in looking at how the Scots do conveyancing, or does the way we do it in England just need reform rather than fundamental change?
I thank my hon. Friend for that intervention. The Scottish system certainly has merit, but we should not see it as a panacea. It front-loads a lot of the obligations and costs on to the seller. In the current market, where properties sell easily and quickly, that process can work quite well. However, in a more stagnant market, where sellers are having to cover those costs up front, there is often a lot of frustration there. We should certainly look at the Scottish model, but we should not look only at that. Our system in England and Wales needs fundamental reform not just mirroring the Scottish system.
Technology may be part of the solution. People search online for a property and it is reasonable to expect that they would also like to contract and correspond online with their conveyancer if that speeds up the process —if I had a pound for every solicitor who still sends out letter after letter by post, I would be a very wealthy man. I am aware that systems such as Veyo and Free2Convey are in the pipeline, but I question whether they will actually fix the underlying issues in the process.
I very much welcome the plans of Her Majesty’s Treasury and the Department for Business, Innovation and Skills to undertake a call for evidence to explore options to deliver better value and to make the experience of buying a home more consumer friendly and I eagerly await that response. However, unless the Government are willing to change fundamentally our antiquated conveyancing process root and branch, we will not see the improvements that those buying and selling residential property are so desperate to see.
It is a great honour to serve under your chairmanship, Mr Percy, for the first time—
—with glorious sunshine outside and in. I congratulate my hon. Friend the Member for Colchester (Will Quince) on securing a debate on this important topic. It seems like only yesterday that I was responding to him on a different debate that he secured, which shows what an assiduous MP he is on behalf of his constituents.
There were some 1.1 million completed property transactions in England and Wales in 2014-15. About a million of those—the vast majority—were residential sales and the amount of human as well as monetary capital caught up in and reliant on the conveyancing process at any one time is difficult to overestimate. The process, which delivers a secure and marketable titled property, is important to the parties to the transactions and to our underlying competitiveness as an economy.
The broad purpose of the conveyancing process is first to deliver a good and marketable title, free from unexpected encumbrances, to the buyer and to the lender funding the process in order that it can be registered at the Land Registry without difficulty. The investigation of title is only part of that process. Secondly, conveyancers must interrogate the seller and public records for information affecting the property and, once obtained, information must be analysed and any uncertainties clarified. The buyer and lender must, at the end of the day, both be content to proceed. They will both rely on their conveyancer, who is normally the same person, and, in the event of negligence, the conveyancer’s professional indemnity insurers.
Thirdly, conveyancers must know their clients and satisfy the money laundering regulations. Fourthly, conveyancers must co-ordinate their transactions so that they proceed only when their clients both want to proceed and are able to proceed. Finally, conveyancers should support their clients through an emotionally charged process that in most cases they will encounter only a few times in the course of their lives.
As if that was not complicated enough, residential cases can be even more convoluted. The reality is that most individual residential transactions are linked by virtue of chains and without simultaneous transactions sellers and buyers would have to move into temporary accommodation. That carries the additional risk of the market moving before they can re-enter it or having to take out potentially open-ended bridging loans with the risk of unaffordable interest. The conveyancing process as we know it today in England and Wales is a result of those competing pressures and objectives.
The process is not mandated in detail by law. Rather, the law tries to provide a broad framework in which the parties are free to decide how to shape their own transactions, although in practice most of those transactions follow fairly straightforward—or at least common—standard industry protocol. Sales may proceed by auction, tender or private treaty, with several different approaches available in each of those courses, but in practice the vast majority of transactions proceed by private treaty, which in layman’s language is really private contract, and it is that experience that shapes their views.
Opinions on the conveyancing process vary. They are sometimes negative, as we have heard from my hon. Friend. There are complaints about the time taken and the costs involved. Transactions can be prone to delay and all parties can get frustrated about the lack of transparency in the process. Estimates vary, but anecdotal sources suggest that the fall-through rate is roughly between a quarter and a third, which can amount to additional costs to both consumers and the wider economy of about £270 million each year. Millions more may be lost to estate agents and conveyancers operating on a no sale, no fee basis, who incur costs they cannot recoup directly if a transaction falls through.
It is important to say that not every failed transaction is as a result of some form of bad faith, but the practices of gazumping and gazundering, even if relatively rare, do little to improve the reputation of the business. There is no clear cause, or at least no single cause for those problems or the fluidity of the underlying market, which is inherent in a free market system. Many people point to the length of time needed to get from an agreement subject to contract to a binding legal commitment as the key problem. Often the solution proposed is a requirement to enter an early conditional contract along the lines of the traditional Scottish model. However, the truth is that, at least at present, few people in England and Wales seem to be keen to use conditional contracts as a matter of voluntary practice.
In the same way, few people try to protect themselves despite the risk of the transaction failing: they do not seem to make great use of either cost guarantee agreements, where the party that breaks off the deal forfeits a specified sum to the other, or lock-out and lock-in agreements that can secure exclusive negotiating rights. That may be due to lack of costs or awareness or the likelihood of being able to secure those terms—it is true that that is not clear. I think the lack of use or take-up should at least give us some pause for thought before we prescribe a single mandatory remedy as the silver bullet.
Another complaint that we hear is that certain parts of the process—most commonly the local authority search—take too long. Where there is an essential process within an overall conveyancing framework, steps to improve response times will assist in reducing delays. Examples include inquiries of the seller, inquiries of the landlord in leasehold situations, or Land Registry and local authority searches. There may also be wider benefits in making property information more accessible online, and the Land Registry, which holds 24 million titles, has moved from a paper-based system to an electronic approach. That has at least helped to make quicker transaction times possible. The Land Registry has successfully developed certain digital products—most notably the award-winning MapSearch and Property Alert services, which will further modernise and digitise the services that consumers receive. The Land Registry is also taking over the local land charges register from local authorities, so that we deliver a single digital local land charges register in England. That should help to reduce overheads and also eliminate regional variations in practice.
Speed of communication between the principal participants is also sometimes flagged as a problem. Obviously, improved communication between the various parties involved could only be beneficial. However, I have to say that my impression is that the office procedures within the conveyancing process today are generally computerised and likely to become more so in response to consumer expectation and, indeed, competition. Chains of transactions of course present their own communications challenges, almost inherently, but attempts so far to provide an all-embracing, all-encompassing, secure electronic environment, in which members of the chain can communicate seamlessly, have foundered. That happened most recently, as my hon. Friend the Member for Colchester mentioned, with the Law Society’s Veyo project. That is clearly a difficult nut to crack.
Finally, Mr Speaker—
It is only a matter of time. Finally, Mr Percy, we should not forget, when looking for the causes of procedural problems in the system, that the conveyancing process has to deal with some pretty difficult areas of law, and simplification and modernisation of the substantive, underlying law has a part to play in improving the overall effect of the conveyancing process. Work on the Law Commission’s recommendations to reform the laws relating to easements and covenants, as announced in the context of the Queen’s Speech, shows the Government’s commitment to improving the underlying substantive law in the area, which should have a knock-on effect for consumers, in terms of process.
The Government of course also announced at the time of the autumn statement last year that they would publish a call for evidence on home buying, exploring options to modernise the process and provide consumers with different and potentially quicker, simpler, cheaper and more effective ways to buy and sell a home. My hon. Friend the Member for Colchester made reference to that. The call for evidence will be published by BIS later this year. It will invite evidence and proposals for innovation from all aspects of industry, but also from consumers. I am sure—I certainly hope—that my hon. Friend will be engaged and involved in making sure we get the right evidence in, and that the right conclusions will be drawn from the evidence throughout the process.
I pay tribute once again to my hon. Friend for bringing this topic before the House, and I am sure that I will be back again to respond to him in debate soon. I hope that in the light of my comments he will be reassured that the Government are aware of the multiple concerns he has raised, and that they are endeavouring to take the right action to address them.
Question put and agreed to.
[Mark Pritchard in the Chair]
I beg to move,
That this House has considered diabetes-related complications.
It is a pleasure to serve under your chairmanship, Mr Pritchard. I am particularly pleased to have secured a debate on this topic because of its profound importance to all those with diabetes, and because support for those with long-term conditions is vital to the future of the NHS.
There are 4 million people living with diabetes in the UK today, and it is estimated that more than half a million people are undiagnosed, living with the condition without being aware they have it. Since 1996, the number of people diagnosed with diabetes in the UK has more than doubled, from 1.4 million to almost 3.5 million. About 700 people a day are diagnosed with diabetes, which is the equivalent of one person every two minutes. The NHS spends about £10 billion on diabetes every single year, which equals around 10% of its budget. Critically, it is estimated that 80% of that cost is spent on complications that are largely avoidable through better care.
I congratulate the hon. Lady on securing this important debate. She referred to the fact that 80% of NHS spending on diabetes is on avoidable complications. Does she agree that a greater focus on early intervention is needed, to ensure that the budget, resources and staffing are better targeted?
I thank the hon. Lady for her intervention, and I absolutely agree. As with so many other conditions, early intervention is crucial.
The total direct and indirect costs associated with diabetes in the UK are estimated at £23.7 billion. That is predicted to rise to £39.8 billion by 2035. Earlier this year, the Public Accounts Committee said that the cost of diabetes to the NHS would continue to rise.
I thank the hon. Lady very much for the speech she is making and for securing the debate. I want to take her up on the point she has just made. There is a belief that diabetes is not curable; actually, diabetes is curable. It is curable by the individual going through a process of losing fat around the liver, which takes away the—
I thank hon. Members for their contributions, and I will now try to make a little progress.
Earlier this year, the Public Accounts Committee said that
“the costs of diabetes to the NHS will continue to rise. In order to control these costs, the Department and NHS must take significant action to improve prevention and treatment for diabetes patients in the next couple of years.”
The wider impact on people’s health is significant. One in five hospital admissions for heart failure, heart attack and stroke are among people with diabetes. The condition is responsible for more than 135 amputations per week. It is the leading cause of preventable sight loss in people of working age and the single most common cause of kidney failure.
I congratulate the hon. Lady on securing the debate. I declare an interest as a type 2 diabetic. I lost almost 4 stone and I am still a type 2 diabetic. I still need tablets to keep me right, and many type 2 diabetics are the same. Experts at Queen’s University Belfast are spearheading a new major research project aimed at ascertaining why thousands of diabetics around the world suffer kidney failure, which she referred to. They have examined DNA samples from 20,000 diabetics to help identify the genetic factors in diabetic kidney disease. The project could enable personalised procedures for those at risk. Does she agree that such research is the key to unlocking life-changing advances for diabetics?
I absolutely agree, and it is encouraging to learn that such research and development is being carried out. I will later share details of a visit that my hon. Friend the Member for Heywood and Middleton (Liz McInnes) and I undertook recently, which proved very interesting.
The hon. Lady has been most generous in taking interventions. I congratulate her on securing this vital debate. Does she agree that education is a key part of ensuring that individuals with diabetes can manage their condition and limit the complications that she mentions? In my constituency we have a diabetes support group that was established way back in 1994. It meets nine times a year, often hears from experts, and provides advice and support. Will she reflect on the role of support groups in helping people to combat diabetes?
I will make some progress and then take further interventions.
The starkest figure of all is that every year, more than 24,000 people die prematurely due to diabetes and its complications. However, there is significant room to improve diabetes care, which would reduce the risk of diabetics developing complications and tackle the rising costs of diabetes to the NHS. First, we could take action to reduce avoidable amputations. There are more than 7,000 diabetes-related amputations every year in England alone, and foot ulcers and amputations cost £1 of every £150 spent in the NHS. I am sure hon. Members will agree that that is quite an incredible statistic. In 2013, the Secretary of State for Health committed to reducing the rate of diabetes-related amputations by 50% over five years, but the national amputation rate has since remained steady.
Action could be taken to meet that commitment. For example, the Government must ensure that clinical guidance is properly implemented and followed. The National Institute for Health and Care Excellence recommends that all people with diabetes have their feet checked every year, but in the worst-performing clinical commissioning groups, one in four people still are not receiving that annual foot check. There also appears to be a significant disparity in what the annual foot check actually means. Those at increased risk of foot problems should be referred for an assessment by a foot protection service. Having multidisciplinary foot care teams in place can reduce the risk of amputation, but almost one third of hospital sites do not have one.
That is of particular significance to me, because along with my hon. Friend the Member for Heywood and Middleton, who will no doubt have more to add during the debate, I recently visited King’s College hospital diabetic foot clinic here in London, which provides some of the best diabetic foot care in the country, if not the best. Care such as that provided at King’s is unfortunately not universal. There are currently no national drivers to lower the rate of amputations across the country, of which we believe about 80% are avoidable. With the right care in place, such as acute multidisciplinary foot teams and a robust care pathway, amputation rates could be significantly reduced. Not only would that have significant cost-saving benefits for the NHS, but more importantly, the people involved would not need to go through such a life-changing experience.
I will briefly reflect on a gentleman my hon. Friend and I met during our visit to King’s College hospital. He was due to have an amputation at another hospital within 48 hours. He was then referred to King’s College for a last chance to have his condition reviewed, where he was told that he did not need any surgery, nor an amputation. When we saw him, he was almost completely cured of his foot problems. A huge amount of money and a huge amount of distress to that man were saved. Will the Minister please confirm that the Government are still committed to the 50% reduction that the Secretary of State spoke about and tell us when they expect to see figures showing year-on-year decreases? Will she tell us what they are doing to ensure that CCGs meet the NICE guidance, and how they can ensure that multidisciplinary teams such as that at King’s operate much more widely across the NHS? The benefits we saw that morning were absolutely clear.
There is a similar need to improve in-patient care. One in six people in hospital now have diabetes, but one in three hospitals have no diabetes specialist nurse and an unacceptable number of in-patients experience diabetes-related harm while staying in hospital. Diabetes UK has pointed to evidence showing that specialist diabetes in-patient teams save three times what they cost the NHS to provide. Specialist teams make fewer prescribing errors and deliver better outcomes for their patients, so there are fewer expensive complications in hospital and shorter stays. Although most hospitals report increasing referrals and patient contacts, there has been no increase in staffing levels in diabetes teams.
I do not think that the number of in-patients who suffer diabetes complications while in hospital is acceptable, and I hope the Minister agrees. The national diabetes in-patient audit showed that 38% of in-patient drug charts had at least one diabetes medication error and 22% had at least one prescription error; that 30% of in-patients had one or more hypoglycaemic episodes, with nearly a third being severe; that 33% of people with diabetes did not think the staff looking after them knew enough about the condition; and that one in 10 hospital sites did not have any consultant time for diabetes in-patient care. Will the Minister tell us what action she intends to take to reduce those figures, assuming that the Government do not think they are acceptable?
We have heard education and early intervention mentioned. Does the hon. Lady agree that in order to help patients, and especially children—there is a reluctance for teachers to give insulin to young people within nursery provision and at primary school level—the mindset needs to change? We need to make sure that there is preventive medication as well as early intervention for children.
I thank the hon. Gentleman for that intervention; once again, I agree with those points.
It makes sense both clinically and financially to improve access to diabetes self-management education. Managing diabetes well is time-consuming and can be complicated, but 69% of diabetics said they did not fully understand their condition. On average, people with diabetes spend only three hours a year with a healthcare professional. For the remaining 8,757 hours they manage their diabetes themselves, for which they need the right skills and knowledge—not to mention confidence. Diabetes self-management courses empower people with diabetes to take charge of their own care. Nine out of 10 people with diabetes who attended a course stated that they felt more confident about managing their diabetes afterwards.
Evidence collated by Diabetes UK shows that diabetes education courses reduce an individual’s risk of developing serious and costly complications and prove very cost-effective. However, more than a third of CCGs do not currently commission specific courses for people with type 1 and type 2 diabetes, despite national guidance, and less than 2% of people newly diagnosed with type 1 diabetes—and just 5.9% with type 2 diabetes—attend a diabetes education course. Investing in diabetes education is the big missed opportunity in diabetes care. Will the Minister agree to look at what can be done to ensure that we do not continue to miss it?
My hon. Friend is making a fantastic case. I speak as somebody who is a type 1 diabetic, the father of a type 1 diabetic and the uncle of a type 1 diabetic. Does she agree that when we look at providing the education that she has talked about, we also need to give regard to the fact that such courses require a basic level of numeracy and literacy, so provision needs to be made for people accessing those courses to be given help in those disciplines in some cases?
I thank my hon. Friend for his contribution; he speaks with a great deal of experience, having experienced diabetes himself. That is an incredibly interesting point, and I hope that the Minister will give her views on that issue.
Finally, we must tackle the significant variations in the care and support received by people living with diabetes. The postcode lottery is exacerbated by additional differences according to age and the type of diabetes. People of working age with type 1 diabetes receive considerably worse routine care than other people with diabetes. For example, although 41% of people with type 2 diabetes achieve the three treatment targets—on blood pressure, HbA1C, or haemoglobin A1c, and cholesterol—less than 20% of people with type 1 diabetes achieved them in 2014-15. Because of that variation, far too many people are experiencing short and long-term complications that have a huge impact on their health and quality of life and prove incredibly costly to our NHS.
The universal provision of healthcare is one of the founding principles of the NHS, and we have warned of the impact of wider Government policies on that, but there is also a specific issue in the case of diabetes. We should acknowledge that the Government have recently made some steps to improve care and address wider problems through the new improvement and assessment framework, but those measures will require sustained resources and national leadership. I hope that the Minister will outline not just a commitment, but some detail on how she will ensure that those intentions result in long-term action. In particular, will she tell us more about what support will be provided to CCGs that are identified as poor performers as part of the new improvement and assessment framework?
As well as better care to reduce complications and enable people with diabetes to live long and fulfilling lives, urgent action is needed to tackle the rise in type 2 diabetes. Nearly 12 million people are currently at increased risk of developing it. As obesity accounts for 80% to 85% of the risk for type 2 diabetes, the main strategy for reducing the rising prevalence of type 2 diabetes must be to tackle the rise in obesity. I welcome the NHS diabetes prevention programme—a joint commitment from NHS England, Public Health England and Diabetes UK—which will identify those at high risk of developing type 2 diabetes and refer them to evidence-based behaviour change programmes to help reduce that risk.
The first wave of 27 areas in that programme covers 45% of England’s population, with the aim of supporting 20,000 individuals to reduce their risk of type 2 diabetes. Can the Minister give us any assessment of the programme’s record to date? Will she confirm that it is due to cover the whole country by 2020 and that she still expects a full 100,000 places to be available on the programme each year?
The Obesity Health Alliance identifies three other priority areas for action that should be fundamental components of the forthcoming governmental childhood obesity strategy. They are restrictions on unhealthy food marketing, including a 9 pm watershed for TV advertising of junk food; the implementation of independent and mandatory reformulation targets to reduce the sugar, saturated fat and salt content in our foods; and the implementation of a levy on sugary drinks manufacturers. We have, of course, recently had some progress on the last of those, although the levy that the Chancellor of the Exchequer is implementing perhaps does not quite match up to that envisaged by public health campaigns. Perhaps the Minister can tell us more about that strategy and about the Government’s views on the other policies put forward by the alliance.
The Government have also promised to take action to reduce childhood obesity, with the aim of publishing a childhood obesity strategy. The strategy was initially due for publication in autumn 2015 but has been delayed. The latest indication is that it is to be released in summer 2016, but quite frankly, they have been holding off for far too long already. Can the Minister give us a specific date for exactly when the strategy will be published?
I know that other hon. Members are keen to speak, so I will conclude by saying that, both as a former NHS worker for many years and as a member of the Select Committee on Health, I see this issue as absolutely critical for the future of our health service as a whole, as well as for the many thousands of my constituents who live with diabetes. There are a disproportionate number of diabetics in my constituency, so this is a big issue for the people of Dewsbury, Mirfield, Denby Dale and Kirkburton. I hope that the Minister has some answers today for them and for everyone who relies on our NHS.
I congratulate the hon. Member for Dewsbury (Paula Sherriff) on securing this vital debate on diabetes and related complications. This is important to me because my constituency, in particular, has a high level of diabetes-related amputations. As we have heard, diabetes is a significant problem for the UK, and it is right that the Government and the Department of Health have identified tackling diabetes as a priority for this Parliament.
The cost to people’s quality of life is dramatic and an increasing number are having to manage the condition, which can make holding down a job or going about their normal daily business very difficult. Some 3.5 million people have been diagnosed with diabetes and a further 500,000 may have it but have not yet been diagnosed.
Diabetes costs the NHS approximately 10% of its budget, with one in five hospital admissions for heart failure, heart attack and stroke involving people with diabetes. However, the cost of supporting people with diabetes goes far wider when we start to consider the costs associated with adapting people’s homes and workplaces following amputation or sight loss, for example.
The UK is a civilised, wealthy country and if more can be done, there is no real excuse for not doing it. We know that for many people, the risk of developing diabetes can be reduced through good diet and exercise, but this message must be communicated positively and early. Much more must be done to encourage outdoor physical education and activity from an early age. We will not be forgiven for having a nation of children who accomplish good results in year 6 SATS, only for many of them to live with life-limiting conditions. For me, physical education is as valuable as numeracy and literacy.
On childhood obesity, does the hon. Gentleman agree that we need a generational change so that from this generation on we will raise young children with clear knowledge of the issues and the unfortunate and inevitable consequences of a sugary diet—so that we can try to prevent diabetes and make sure this is the last generation to suffer from this horrible affliction.
That is true, and I welcome that intervention. It is right to make the distinction between type 1 and type 2 diabetes. Type 1 often occurs in younger people and there is little, if anything, we can do about it other than manage the condition well. General practitioners in my area have teenagers and adolescents presenting with type 2 diabetes. The hon Gentleman is right that to address the issue in the long term we must be positive and provide information and education that is sensitive, but honest and truthful. We cannot pussyfoot around when people’s lives are at stake.
We have a responsibility to ensure that both those with type 1 diabetes and those with type 2 diabetes that cannot be avoided have easy access to the best treatment available and the best support, and can access modern devices that manage diabetes and reduce the development of further complications. Since arriving in this place in May 2015, I have attended several meetings and seen all sorts of innovations and devices that can be used, particularly by young people, to help them to manage their condition better.
In the past, I spent some time as a youth worker and I know it is a huge challenge to help young people with diabetes to manage their condition through finger prick tests and regular injections, and parents are frustrated that young people often do not realise the consequences of not looking after their condition well. New innovations and new devices must be made more available to them now because I believe they will embrace smart technology, which could be life-changing for children and young people who are managing a life-limiting condition.
We know that when diabetes is not well managed, it is associated with serious complications. I have referred to the cost of health and social care for diabetic patients. The tragedy is not just that 80% of these costs are spent on complications that are largely avoidable through better care, but that people’s health and quality of life are unnecessarily deteriorating because sufferers are not always able to access the care that we know they need.
I was keen to take part in this vital debate and I appreciate the opportunity because the situation in Cornwall and the Isles of Scilly gives cause for concern. One of the most serious diabetes-related complications is amputation. Nationally, an average of 2.6 diabetics in every 1,000 have a diabetes-related amputation. In Cornwall and the Isles of Scilly, the average is 4.4 amputations per 1,000 people with the condition. This suggests that in my constituency alone, eight people each year have a lower limb amputation as a result of diabetes. Last year, 40 people in Cornwall had a lower limb amputation as a result of diabetes. We know that four in five of these amputations could be prevented through better care, so six people in my constituency today could have avoided having a lower limb amputation in 2015 if everything we know about managing diabetes had been correctly applied. Six people’s lives have been changed dramatically and their outcome is grave indeed. It is essential that we reduce the number of amputations, not least because we know that up to 80% of people die within five years of having a lower limb removed.
As the hon. Member for Dewsbury said, NICE is very clear about what CCGs should do to improve treatment for diabetic patients. Earlier this year I wrote to my clinical commissioning group in Cornwall, Kernow CCG, to argue that it should ensure the NICE recommendations are properly implemented. I am encouraged by the action it is taking, which it set out in its response to me. It says that figures to be released this month demonstrate that its efforts have reduced the level of amputations in Cornwall and the Isles of Scilly. That achievement would be a phenomenal and significant success, and something to celebrate.
However, there is a role for the Government in improving patient outcomes and it is not fair to leave everything to the CCGs. I have referred to the need for a positive message about how to improve our own health to reduce the risk of developing diabetes, but those who have diabetes and are at risk of a lower limb amputation need to benefit from a cultural shift in the profession. We need to get to a place where major lower limb amputation associated with diabetes or vascular disease is considered a failure of treatment rather than a treatment choice. A functioning foot with minimal surgery should be a success.
The Government must do more to ensure that patients with a diabetic foot are diagnosed earlier and are on the right patient pathway. More must be done to ensure the right professionals are in place. If patients are seen by podiatrists, diabetologists and interventional radiologists as early as possible, patients can be treated appropriately and their leg can be saved. This means ensuring everyone with diabetes gets good quality annual foot checks. We have talked about what that might mean and perhaps we need clarity on what an annual foot check entails. Everyone with a foot infection should be urgently referred to those specialists.
The best way for patients to have access to those specialists is through a multidisciplinary team, where healthcare professionals meet to discuss patients and treatment choices. That sounds simple, but too often different parts of the healthcare system operate in silos and that is particularly the case in some parts of the healthcare profession in Cornwall. It is crucial that the right members of the team meet regularly and that multidisciplinary teams are fit for purpose. It must not be just a tick-box exercise for NHS trusts.
Clinicians also need access to the right technologies when they intervene on patients with advanced forms of diabetic foot and critical limb ischaemia. Data show that the use of drug-eluting technologies, when used by vascular specialists, can improve outcomes for diabetic patients to the equivalent of those patients without diabetes. NICE is about to review its clinical guidelines for peripheral arterial disease and I hope the updated guidance will include recommendations for the use of drug-eluting technologies for critical limb ischaemia and intermittent claudication.
In conclusion, the Department of Health has said it will assess CCGs on their provision of structured diabetes education as part of the new CCG improvement and assessment framework. I would like the Minister to say today what support the Department will provide to ensure that CCGs identified as underperforming are able to improve access to structured education, and thereby increase the number of people with diabetes who have the skills and confidence to manage their own condition. As was said early in the debate, many people with diabetes across the UK could manage their condition with the right support, education and resources. It is absolutely right that we do everything we can to give every person with the condition the support that should be available to them and that they deserve to have.
It is an honour to serve under your chairmanship, Mr Pritchard. I, too, congratulate my hon. Friend the Member for Dewsbury (Paula Sherriff) on securing this debate on diabetes-related complications. Diabetes is a huge public health issue in highly developed countries such as ours, and the complications of diabetes, if left unchecked, can be life-changing and, ultimately, fatal.
Approximately 4 million people live with diabetes in the UK—that is one in 16 of us—and more than half a million of those are undiagnosed and unaware that they have a potentially life-threatening condition. About 700 people are diagnosed with diabetes every day and it is estimated that, by 2025, 5 million people will have the disease.
Although we are not quite sure what causes type 1 diabetes, which affects approximately 10% of those with the disease, we know that the far more common type 2 diabetes can be caused by lifestyle factors. In 2014, Public Health England said that 90% of adults with type 2 diabetes are overweight or obese, and that men are five times more likely to develop type 2 diabetes if they have a waistline of more than 40.2 inches, while women with a waistline of more than 34.7 inches are three times more likely to develop the disease.
The link between unhealthy lifestyles and a higher risk of diabetes is clear and very well established. Is it any wonder that diabetes is on the rise when it is easier to live a sedentary lifestyle and eat unhealthily? We have more temptations, in terms of food, than ever before. The principle that prevention is always better than cure is particularly apt when we are thinking about diabetes and the serious complications that can arise from the disease.
In the first instance, it is imperative that everything that can be done is done to ensure that children and young people who have not yet developed the disease or become overweight are encouraged to lead healthy lifestyles. Schools have a very important part to play in that. They must ensure that pupils and parents are made aware of diabetes, including the causes of the disease and what might happen if they develop it. Sport in school is a fantastic way to get young people active, yet a University College London study in 2013 found that, of the 6,500 seven-year-olds included in the study, only 51% achieved the recommended hour of physical activity every day. That situation simply has to improve.
Although physical education lessons in schools often focus on competitive sports such as football, hockey, rugby and netball, they should also put emphasis on general fitness training. Schools should also be given the tools and resources that they need to encourage after-school sports clubs in addition to community-run sports clubs. The Rhymney Valley athletics club, based in my constituency, is a fantastic example of a community-run sports club for children and young people. On the occasions when I have had the opportunity to visit it, I have always been impressed by the enthusiasm of the coaches and the positive atmosphere that they create, which is impressed on the children. The number of children taking part is growing quickly, simply because they enjoy going. Whether they know it or not, by taking part in physical activity, they will be reducing their risk of type 2 diabetes and, more importantly, having fun along the way.
However, parents must bear much of the responsibility for ensuring that children lead a healthy and active lifestyle. It may be easier for parents to allow children and teenagers to eat sugary, high-fat treats with low nutritional value and drink sugary pop, but that puts their health at risk in the long term. The new tax on high-sugar drinks that was announced in March is a welcome step in the direction of tackling child obesity, and I hope that parents will take the message on board by encouraging children and teenagers to drink and eat more healthily. One of the most important skills taught to me by my mother was the ability to cook my own food—not to rely on ready meals, a takeaway or the fish shop, but to go home of a night and make myself a meal.
If young people do not develop a healthy lifestyle while they are at school, it is reasonable to expect that they will find it much harder to do so once they have left. If we make a serious effort to point children in a healthy direction from an early age, we will give them the best possible chance to avoid becoming overweight. It follows that, if they do not become overweight, they are less likely to develop diabetes and, as a result, less likely to suffer health complications caused by the disease.
Adult obesity in the United Kingdom is showing a sustained upwards trend. By 2014, more than 28% of adults were considered clinically obese, and that is expected to rise to one third by 2020. Overall, 62% of adults in the UK—a significant majority—are classed as overweight or obese. That is the third highest level in western Europe, and it is not a league table we particularly want to be at the top of. It is clear that, if we are to tackle excess weight and obesity to tackle diabetes, radical public action must be taken to reduce the UK’s average waistline.
A key reason for increasingly sedentary lifestyles is the rapid growth of office and desk work during the past few decades. Employees stuck behind a computer screen for most of the day do not get the opportunity to exercise, which we know is vital to maintaining a healthy weight. Perhaps great benefit would be gained if employers were incentivised to incorporate physical activity into office work or to set aside time during the working day for the desk-bound to exercise. The expansion of accessible after-work exercise clubs for all would also be a huge and radical step forward.
Incentives should be given for healthy eating. When living on a budget, as so many people are, it is often cheaper to eat unhealthily than healthily. That extraordinary situation must be turned on its head. Equally, disincentives such as the sugar tax should be used to discourage unhealthy eating. Only once we as a country have truly got to grips with our weight and obesity problem will we be able to prevent the very serious health complications caused by diabetes.
It is a pleasure to serve under your chairmanship, Mr Pritchard. I am grateful to my hon. Friend the Member for Dewsbury (Paula Sherriff) for securing this important debate. We both have a background of working in healthcare and we share an interest in health issues, particularly when it comes to health inequalities and postcode lotteries of healthcare provision.
As my hon. Friend said, we recently visited the excellent diabetic foot clinic at King’s College hospital. I will be honest: when I received the invitation, it was only my interest in diabetes that led to my accepting it. I did not expect to come away from a diabetic foot clinic feeling inspired, but inspired I most certainly was. I spoke to the doctors, nurses, healthcare assistants, researchers and, most importantly, the patients. I heard from patients whose limbs had been saved from amputation by the amazingly skilled, dedicated and knowledgeable staff—patients who had arrived at the foot clinic clutching letters from their doctors that stated, “There is no alternative other than to amputate this limb.” Those patients were lucky because they had talked to people such as diabetes specialist nurses, who had suggested that they consult the diabetic foot clinic to get a second opinion.
We spoke to a farmer from Kent who had been kicked by one of his cows. He had a wound on his foot that would not heal and he had been advised by the hospital that a below-knee amputation was the only solution. The farmer talked to us about his family farm, about how he would have been unable to carry on working had the amputation gone ahead and about how grateful he was for his referral to the foot clinic. The staff there had been able to treat the wound and it was well on the way to recovery by the time we saw it. They had saved his limb and consequently his business and his family’s livelihood, with all the concomitant savings to the NHS. So many of the people we spoke to told us stories like that; he was just one of them.
I was absolutely blown away by the incredible work done by that clinic, but, as has been pointed out, the care provided there is not universal and there are currently no national drivers to lower amputation rates across the country. It has already been stated that four out of five of these amputations are avoidable. I particularly liked the comment by the hon. Member for St Ives (Derek Thomas) that we should aim to get to a point at which amputation is seen as a failure rather than as a form of treatment.
My hon. Friend the Member for Dewsbury has quoted quite a lot of my speech. [Laughter.] So I will be brief. She referred to this, but it deserves repetition. In 2013, the Health Secretary committed to reducing the rate of diabetes-related amputations by 50% over five years. The amputation rate has in fact remained steady. Little progress appears to have been made towards the commitment. I do not think it does any harm to repeat that point and to hope for a response.
My hon. Friend is making an excellent point. Does she agree that there is a regional dimension? There is a GP shortfall of 40% across the north of England. If the gateway treatment for type 1 and type 2 diabetes is through primary care and accessibility is limited in certain parts of this country, clearly, we will get much worse outcomes.
I thank my hon. Friend for that intervention. He is absolutely right. In my own constituency of Heywood and Middleton, I have also come across the problem of people being unable to get access to GPs. I am a member of the all-party group on diabetes and we have come across the problem time and again.
Patients have told the APPG that, when they first went to see the GP with the full-blown symptoms of diabetes, the GP took weeks to diagnose them. We have a real problem with GPs’ awareness of the condition of diabetes, even though it is common. Perhaps it is just the patients who come to our APPGs, but they all seem to come with the same tale, so perhaps there is a job of work to be done to standardise GPs’ education on diabetes.
We have touched on the subject of variations in care around the country. Because of the regional variations, far too many people are experiencing short and long-term complications, which can have a huge impact on their and their family’s quality of life. It is also very costly to the NHS.
I want to talk about a major clinical audit that is going on at the moment, the national diabetes audit, which measures the effectiveness of diabetes healthcare against NICE clinical guidelines and NICE quality standards in England and Wales. That audit provides an overview of the quality of diabetes care at national, clinical commissioning group, acute trust and GP practice levels. Through the collection of the data, the national diabetes audit can produce reports for a range of stakeholders to drive changes and improve the quality of services and health outcomes for people with diabetes.
Again, we see regional variations in participation in the national diabetes audit. The latest NDA report produced in January this year showed that participation in the audit had dropped to 57%; it is thought that that can be attributed to a change from an opt-out to an opt-in system for GP practices, plus variations in the ease of use of the three different IT systems used by GP practices. I am very disappointed to say that, in my constituency, which is covered by the Heywood, Middleton and Rochdale CCG, not one GP practice is participating in the national diabetes audit. It is really important that participation be improved; better data help CCGs to more effectively set priorities and evaluate improvements. If we are not collecting the data, there is no way we can plan for improving the outcomes for people with diabetes. NHS England should make participation in the national diabetes audit mandatory as an important step towards improving diabetes care.
Several Members have already talked about the importance of education. An important aspect of avoidance and prevention of complications of diabetes lies in educating diabetics to help them to better understand and therefore manage their condition. With 69% of diabetics saying they do not fully understand their condition, there is clearly a need for education to be made available and accessible.
As has already been pointed out, more than a third of CCGs do not currently commission specific courses for people with type 1 and type 2 diabetes, despite national guidance. In my own constituency, only about 20% of people with diabetes are offered a course, and the take-up is alarmingly low, at around 6% to 7%. One reason that people give for not taking up the offer of a course is that their employer will not give them time off to attend. There is a real job of work to be done to persuade employers that supporting their employees to attend the courses will have all-round benefits for the employer and the employee in terms of reduced sickness absence and a healthier and more productive employee.
I know that the Minister shares my interest in promoting diabetes education, which is key to preventing the major complications of diabetes. I am interested to hear her views and whether she has any plans to improve access to education.
It is a pleasure to serve under your chairmanship, Mr Pritchard. I thank the hon. Member for Dewsbury (Paula Sherriff) for securing this debate.
I unashamedly turned to a much more informed source of information than me while putting this speech together. My sister, Linda Irvine, has been an insulin-dependent diabetic for 36 years. She knows the system inside out and has experienced the good and the bad of the NHS. In that time, she has seen many changes in the treatments provided. In 1980, she was fortunate to be diagnosed on what she considered the cusp of change. She had been subjected to horror stories of painful injections and severe restrictions in diet, along with a lack of understanding from doctors and nurses not familiar with the medical condition. In those days, injections were delivered in glass syringes with barbaric steel needles, which had to be kept steeped in methylated spirit and which obviously restricted away from home activities. Insulin was bovine or porcine and the peak effect of it was three to four hours after administration, making the timing of meals a bit of guesswork.
Shortly after my sister’s diagnosis, a new synthetic form of insulin, termed human insulin, was laboratory-developed. That made it cheaper to produce in larger quantities. From 1982, human insulin started to replace animal insulin as the primary treatment. It was developed further in the 1990s and now starts to take effect within 30 minutes of injection, making control of blood sugars more predictable. Syringes also became plastic, smaller and had finer needles: much easier to carry on you if you were out. Syringes have now been replaced by pre-loaded pens that are much more convenient and easier to draw up.
The introduction of insulin pumps is also an increasingly available initiative that Linda benefited from during her last two pregnancies, but she was unable to keep them because of an allergic reaction to the needle. She was not born lucky. Food was also a big problem in those days, with no light or sugar-free options on the market and diabetic drinks or biscuits available only in chemist shops. They were overpriced and frequently unpalatable. Nowadays, there are many options and most are readily available in high street stores.
We might think that nowadays it is all plain sailing, but unfortunately it is not. Diabetes complicates life immeasurably. It takes the spontaneity out of everyday activities, particularly with children and grandchildren. “Can we go to the park?” “Wait till I’ve checked my blood sugar.” “Can we go swimming?” “I need something to eat first.” “Why do we have to leave? We’ve only just got here.” “I’m due a meal soon.” On occasions, after she had injected, usually in a public toilet, and when the restaurant service was very slow, she would slip into a hypo. “Why are you sliding down the seat, mum, and heading for the floor?” It is not only mums who suffer from diabetes. All four of my sister’s children were able to dial 999 and tell the operator that she was diabetic by the age of three.
If we are leaving the house now, Linda carries a large bag with two insulin pens, needles, blood monitor, testing strips, lancets, a bottle of Lucozade—other drinks are available—and some kind of carbohydrate such as a packet of crisps or a sandwich to have in case her blood sugars go too low. She always carries a card explaining that she has diabetes and two emergency phone numbers in case she collapses.
Travelling abroad through different time zones can really complicate matters, too—not to mention the embarrassment of carrying syringes through airport security. As for dietary requirements on airlines—don’t go there. Of course, another area of concern is driving. As with most medical problems, insurance is always steeper and more complicated, DVLA requirements more stringent, and licences harder to acquire and keep.
What does my sister have to look forward to? The long-term problems of diabetes are well documented: cardiovascular disease, kidney damage, foot problems, eye disease, nerve damage, tooth and gum disease, thyroid problems, skin problems, constant infections and, unsurprisingly, mental health issues. It is therefore a cause close to Linda’s heart that the treatment of children with type 1 diabetes should be as up-to-date as possible, to ensure that their exposure to long-term problems is minimised.
Linda is now waiting for a kidney and pancreas transplant. Current research involves stem cell transplantation and chimera pigs where embryos are created with organs hopefully compatible for human transplant. Of course that is controversial and raises all kinds of ethical questions. But what if it was your child? What if it was your sister?
It is a pleasure to serve under your chairmanship, Mr Pritchard. I congratulate the hon. Member for Dewsbury (Paula Sherriff) on bringing forward this timely debate. It is encouraging to hear such consensus across the Chamber today. She gave an informed and comprehensive presentation, and I was grateful to hear it. I speak, obviously, as a Scottish Member, and many things are devolved there, but the scale of the problem is remarkably similar in Scotland; 10% of our NHS budget is likewise devoted to treatment of preventable diabetes-related conditions, and those costs continue to rise, as has been noted for England.
I was somewhat shocked by the figure for the number of deaths, which I had not considered before. I am sure that that will strike many people. We think of the life-affecting changes that people go through, and the fact that lives are shortened, but not necessarily of the resulting deaths. The hon. Member for South Down (Ms Ritchie) summed things up in her short comment about the need for early intervention; she hit the nail on the head. That, undoubtedly, is what we need. I was impressed, also, by the remarks of the hon. Member for St Ives (Derek Thomas). I thank him for the figures he gave about the one in five heart and stroke-related admissions to hospital, and for what he said about costs, adaptations that are required, and effect on quality of life. It is important to consider those things together. One of the few optimistic comments that I have taken from the debate is the statistic that four in five amputations are avoidable. I hope that that message will get out to people.
I have not been diagnosed as diabetic, but my lifestyle is somewhat appalling, and perhaps I should get myself checked. Obviously people of both genders should be checked, but perhaps males in particular should take more care. Maybe there are lessons for other people. I was somewhat cheered by the comments of the hon. Member for Islwyn (Chris Evans). It made me slightly more optimistic to hear about the 40.2 inch waistline. I thought, “I’m a bit below that.” However, it does not fully mitigate the diet. I think perhaps that there are many others who will not consider 40.2 inches as a particularly large waistline. When we think about the connection to obesity, which is important, we tend not to think of ourselves as obese even when there is an issue. Several years ago, I was 6 inches bigger than I am now: I did not think I was large at the time. My mother, of course, always commented that I was, and she was probably proved correct. If those figures got through to the wider public they might think, “Yes, that does affect me”—or whoever they know who is in that position. It is important that people see that.
We can probably agree that diabetes is the fastest growing health threat of our time. That is certainly how it appears. The Scottish National party is committed to ensuring that in Scotland people with diabetes have access to the best possible care, and it aims to reduce the risks of complications. There have been a number of reports, an action plan in 2010 and an improvement plan in 2014. The statistics are very similar to those we have heard. One in 16 people has diabetes—diagnosed or undiagnosed. Since 2008 we have seen a 25% increase in the number of Scots with the condition, which accounts for 5.2% of the population. That is largely in line with figures from England and Wales. However, a more frightening aspect of the Scottish dimension is the fact that a further 500,000 are at high risk of developing type 2, and a further 1.1 million are at an increased risk as a result of their waist circumference. I am grateful that I now have a set of statistics to put that in perspective. That figure represents one in five adults, which seems typical, going by figures for elsewhere in the UK. Of course, the connection with obesity cannot be underlined strongly enough. Similarly, 80% of our NHS spending on diabetes is invested in treating avoidable complications—amounting to the same 10% of the budget.
One of the keys to avoiding manageable complications through diabetes is, as has been said, early prevention. Approximately 80% of complications in Scotland are estimated to be preventable, or can be significantly delayed through early detection, good care and access to appropriate self-management. That involves reaching the people who are at risk and supporting them in knowing the risks of poor diet and low levels of physical activity. Among the positive things that are happening are volunteer groups, including the Diabetes UK West Lothian group in my area, which supports people living with the condition through several different schemes. It has NHS support through St. John’s hospital in Livingston. Exercise groups are provided, and they include a session of seated exercise for people who have limited mobility. There is also a GP referral service entitling people to free or heavily discounted memberships at Xcite West Lothian gyms. Again, that is probably not well enough known about in my area and it could be taken up more. That is all part of the push to support people, and to further prevent complications arising from diabetes.
There is much we can agree on, and much good practice, as well as many frightening statistics out there.
I congratulate my hon. Friend the Member for Dewsbury (Paula Sherriff) on securing this important debate and on the eloquent and powerful way she set out the issues in her opening speech. Several hon. Members have echoed what she said, and I will no doubt repeat it to an extent. After just a year as an MP she has established herself as one of the most effective campaigners in this place, and she is a passionate advocate on a range of issues—particularly public health matters. She spoke of her visit to King’s College with my hon. Friend the Member for Heywood and Middleton (Liz McInnes), and described the excellent care there, as well as mentioning the fact that, sadly, that experience is not replicated throughout the country. She highlighted the cost of diabetes and described education as a missed opportunity to reduce complications. That is a theme that has come through in several of the contributions today.
I also want to mention the contribution from the hon. Member for St Ives (Derek Thomas), who made a powerful point about what kind of future the next generation is heading towards, if we do not put more focus on the issue now. He gave us constituency-specific figures on amputations. I wonder whether all hon. Members would be interested to find out the specific figures for their constituencies. They really bring the issue home. I agree with the hon. Gentleman that the matter should not just be left to CCGs, and that there is a need for more co-ordinated national support. He was also right to say that we should aim to reach the point where amputation is seen as a failure and an exception.
My hon. Friend the Member for Islwyn (Chris Evans)—I hope that is the right pronunciation of his constituency—
We could have been forgiven for making that error today, but we will talk more about pronunciation afterwards. My hon. Friend spoke with great sincerity about the benefits for children of taking part in sport, and about how once they get into it they can enjoy the physical activity. I know from experience that dragging kids off the Xbox can be a difficult challenge, but once they actually get out there they enjoy themselves, and that contributes to a healthier lifestyle. He also made a valuable point about the world of work, in that so many more jobs are now sedentary in their nature. Of course, a healthy workforce is a more productive one, and productivity is a challenge for the whole country.
My hon. Friend the Member for Heywood and Middleton spoke with great experience of health. It was great to hear that she had been inspired by her visit to King’s College. She spoke about the national diabetes audit, and the importance of using the data collected to drive improvements. Again, she highlighted the need for more education. It was interesting to hear that some of her constituents have difficulty attending some education courses because employers are not agreeing to give them the time off. It will be interesting to hear the Minister’s reflections on that and it comes back to the point about a healthy workforce being a more productive one. We really need to get that message across to employers.
The hon. Member for Inverclyde (Ronnie Cowan) spoke about his family’s experience and gave us a useful personal insight into the everyday challenges faced. We can all reel off the figures but hearing from someone who has had a close relationship with the condition for a considerable length of time brings home some of the practical challenges that people face.
There is a consensus, as the hon. Member for Linlithgow and East Falkirk (Martyn Day) said. All hon. Members acknowledge that diabetes is one of the most significant healthcare challenges, given the impact that it has on NHS resources and, more importantly, the impact it has on people. We heard very powerful details of that today.
To put the condition in perspective statistically, 45 people in the UK will have been diagnosed with diabetes in the time it takes to complete today’s debate. In that time, one person will have undergone a diabetes-related amputation and four people will have died prematurely due to diabetes-related complications. According to figures produced by Diabetes UK, there are currently 4 million people living with diabetes in the UK, of whom 549,000 are undiagnosed.
The number of people with diabetes is increasing, as various hon. Members have said, and it has more than doubled since 1996. More than doubling the number of people with any condition in 20 years is bound to lead to serious questions about how our society is operating. Indeed, several hon. Members have given some good examples of the challenges we face. Part of our role is to question and support, where possible, how the Government respond to those challenges, particularly when we are talking about something that can be preventable. The level of interest shown by hon. Members today shows that there is at least recognition and agreement that the issue demands significant attention.
The number of people with a diagnosis is huge, as is the cost to the health service. The NHS now spends about £10 billion on diabetes each year, which is equivalent to about 10% of its budget, and £8 billion of that is estimated to be spent on complications, which, as we have discussed, are largely avoidable. Diabetes is an important issue to tackle at any time but, when we have such financial pressures on the NHS, it becomes even more pressing to really get on top of trying to avoid the complications it can cause.
At the heart of the issue are the people involved. Although many are able to manage their diabetes effectively, it is still a life-changing condition that has an impact on those living with it on a daily basis. We heard from the hon. Member for Inverclyde about how it really has an impact not only on the individual, but on their family. For somebody with type 2 diabetes, managing their condition means learning how to treat it with diet and exercise, and possibility coming to terms with the need to take medication and insulin. For someone with type 1 diabetes, it means constant diet management and carefully working out the correct amount of insulin to take. However, for everyone living with diabetes, it means being aware of the potential complications that can occur, and keeping a careful watch not only on blood glucose levels, but on cholesterol, weight, blood pressure and the conditions of eyes and feet.
Put simply, living with diabetes means becoming an expert on the condition. Despite that, less than 2% of newly diagnosed individuals with type 1 diabetes, and just 5.9% of those newly diagnosed with type 2 diabetes, attend a diabetes education course, which is a theme that has been mentioned by various hon. Members. Those figures alone are disappointing, but they are even more so given that there is clear evidence that the courses reduce the risk of individuals developing complications, and given the fact that a worrying 69% of people say that they do not fully understand their diabetes. The very nature of the condition means that self-management is the only practical way to reduce the risk of complications.
We welcome the publication of the Government’s new improvement and assessment framework for CCGs, which will assess CCGs on the attendance of structured education schemes and on the NICE recommended treatment targets. Will the Minister tell us what steps the Government are taking to improve access to diabetes self-management education, what steps she envisages taking against CCGs that perform poorly in the improvement assessment framework, and what support will be available to those identified as poor performers in order to bring them up to what is considered best practice?
Does the shadow Minister agree that some consideration ought to be given to the funding allocation for CCGs with particularly large concentrations of people with type 2 diabetes, which is, after all, linked to obesity and lifestyle, especially considering that obesity is increasingly statistically linked—there is a clear correlation—with the incidence of poverty and socioeconomic disadvantage? Does he agree that CCGs with those significant populations should have their funding allocation reviewed?
I agree that that needs due consideration. In some written answers, the percentages of people with diabetes per constituency are shown, and there are some definite peaks and troughs. If we are to get the issue under control, we must think more strategically about where the resources are put.
At the moment, a third of CCGs do not commission specific courses, which is contrary to national guidance. I hope that the Minister will be able to tell us what she will do to try to end the current postcode lottery. One of the most convenient and effective sources of education for many people with diabetes is their local pharmacy. There is a need—possibly, a demand—for expanding the role that pharmacies play in supporting people with diabetes. What are the opportunities and possibilities for thinking again about the Government’s plans to slash the community pharmacy budget, which may lead to the closure of up to 3,000 sites?
More significant than the variation in education is the variation in the levels of care and support offered depending on location, the age of the patient and the type of diabetes. There is evidence of markedly different routine care throughout the country, which has a huge impact on the quality of life of diabetics, as well as being costly to the NHS. One in six people in hospital has diabetes, yet one in three hospitals has no diabetes specialist nurse. The national diabetes in-patient audit paints a worrying picture of the variations in the way in which the condition is managed by hospitals, and the unacceptable number of in-patients suffering avoidable complications.
Some of the most serious diabetes-related complications are avoidable amputations and foot ulcers. We have heard that £1 in every £150 that the NHS spends is in that area, and such action has a dramatic, life-changing impact on individuals and their families. As my hon. Friend the Member for Dewsbury said, in 2013 the Health Secretary committed to reducing the rate of amputations by 50% in five years. Will the Minister tell us what progress has been made towards achieving that goal, particularly given that Diabetes UK has said that no progress has really been made? Will she confirm that she still hopes to meet that target?
NICE recommends that all people with diabetes undergo an annual foot check but, in the worst performing CCGs, one in four people are not receiving a foot check at all. Part of the reason for that is the shortage in the number of podiatrists, particularly following a recent reduction in the number of students from 361 to 326. I am concerned that the plan to scrap bursaries for podiatry students and to push them into about £50,000 of debt will make the situation even worse. I ask the Minister to reconsider the direction of travel on this policy. Will she advise us what assessment has been made of the likely number of podiatrists who will be trained each year under the new funding regime?
I will close by making a few remarks about prevention. As I said at the beginning of my speech, the number of people suffering from diabetes continues to rise. The primary driver of that is, of course, lifestyle. Some 11.9 million people are currently at an increased risk of developing type 2 diabetes as a result of their waist circumference or weight. Two in every three people in the UK are now overweight or obese. As other Members have said, people might not necessarily feel that that relates to them, but we must reflect on those figures. Obesity accounts for 80% to 85% of the risk of developing type 2 diabetes, and therefore we need to focus on education and treating the condition. The main strategy to address the prevalence of type 2 diabetes has to be to address the rise in obesity, particularly at a young age, as the hon. Member for St Ives said.
We welcome the Government’s announcement of a sugar tax in the Budget, but that measure will only be effective as part of a wider strategy to address childhood obesity. I do not know whether the Minister will be able to tell us, but what is holding back the publication of the strategy? Is there disagreement on what will be in it? Is it at all possible for her to give us a date for when it will be published? [Interruption.] I suspect I have my answer from the grin on her face.
Both sides of the House are alert to, and supportive of, the need to get on top of this challenge but, as with all such matters, the Government will be judged by the results, on which we will keep a close eye in the coming years.
It is a pleasure to serve under your chairmanship, Mr Pritchard. What an excellent debate we have had, and I thank the hon. Member for Dewsbury (Paula Sherriff) for securing it. She is a passionate health campaigner and has made her mark in a very short time in the House. This is the second time I have seen her today, as I gave evidence to the Select Committee on Health this morning. It is excellent to see so many colleagues from both sides of the House in the Chamber today.
Diabetes-related complications are a vital issue and, sitting here, I agreed violently with much of what was said about the scale of the challenge, the need to step up and, indeed, some of the things that we need to do. I hope to use my time, as much as possible, to update the House on practical measures that the NHS and the Government are taking, as well as to hint, where I can, at policy yet to come. There is more to be said later in the summer on some areas. One reason why it is so important to have such debates is to keep up a drumbeat of discussion. One thing I have realised as a Minister is that momentum is a funny thing in politics.
I make no comment. Political momentum is important because it drives change in a way that is hard to pin down. We now have momentum on obesity and diabetes in a way that we did not a few years ago. The level of interest in this House is a good measure of that, so it is vital that we have such debates. It is also a measure of how seriously we take diabetes that we have included reducing diabetes care variation and preventing diabetes in the NHS’s mandate—it is right at the heart of our big asks of NHS England.
Before I continue, I take this opportunity to pay tribute to the many NHS staff who provide invaluable support to patients. Inevitably, in a debate where we are rightly stress-testing the system and asking where we can improve, it is easy to forget that masses of people out there are doing brilliant work. We have heard inspiring words today from two colleagues about their visit to see real specialists in action. Across the country there are people supporting patients with diabetes. There are also excellent third sector organisations such as Diabetes UK, with which we work closely, and JDRF, which does such great work on type 1. They both work with and independently challenge the Government, all with the aim of improving the lives of those with diabetes or at risk of it.
Although I appreciate that the Minister undoubtedly has an incredibly busy schedule, I encourage her to contact the diabetes foot clinic at King's College hospital in London to arrange a visit. As my hon. Friend the Member for Heywood and Middleton (Liz McInnes) said, our visit was inspiring. I came away with much knowledge and real hope that we can make improvements.
I sat here thinking how interesting the visit sounded. My team has made a note of that. We had heard about the visit and how it had gone well, so it is great to hear that first-hand from the hon. Lady.
I will not repeat the shocking facts on diabetes, which have been well rehearsed and explained by Members in this debate, but suffice it to say that the impact is huge. My hon. Friend the Member for St Ives (Derek Thomas) and others have made notable contributions drawing out the human cost of diabetes. People tend not to understand how devastating diabetes can be for patients and families, as well as the cost to the NHS, which in England we estimate to be £5.6 billion a year.
We have to work together to address diabetes. Before I talk about the action we are taking now and the progress we need to make, it is worth noting that we have come a long way. I have discussed that in some detail with our national clinical director, Dr Jonathan Valabhji, over the past year. The progress we have made through the quality and outcomes framework over the past decade has driven a step change in delivering better management and care for people in GP practices. Last year’s National Audit Office report showed that the relative risk of someone with type 1 or type 2 diabetes developing a diabetes-related complication has not changed, and indeed has fallen for most complications, despite the growing number of people with diabetes, so we have made progress. Clearly, the question now is how we can go much further. Diabetes is a key priority for us, and we want to see a measurable difference in the lifetime of this Parliament. There are four main areas in which we are taking action.
Before the Minister moves on to the progress that is being made—she is right that we have come a long way over the past 10 years—will she undertake that the Department will consider not just the cost to the NHS of all diabetes-related complications, because we have been talking about this from a very NHS-centric point of view, but the cost to the economy of such complications?
We have been preparing and working on the childhood obesity strategy for some months, and I assure the hon. Gentleman that we have been looking at the wider cost to society and, obviously, projecting that forward, as has been done by many other economies in the developed world. There is an interesting piece by the McKinsey Global Institute on the cost to the developed world.
Specifically in the NHS, and going to the heart of the debate, there are four main areas in which we are taking action that we expect to deliver reductions in complications: reducing variation in the delivery of the three NICE treatment targets for blood pressure, blood glucose and cholesterol control; improving the take-up of structured education; improving foot care; and improving in-patient care. Reducing variation is always a theme of health debates and, frankly, it is a constant challenge in any system. The question is how we drive out variation, and Members have made a good point about how we support people to drive out variation. One of our goals for 2020 is a reduction in such variation in the management and care of people with diabetes.
The newly established CCG improvement and assessment framework has been mentioned by a number of Members. Diabetes is one of the clinical priorities in that framework, which will play a key role in delivering the challenge to variation. The chief executive of Diabetes UK is the chair of the panel of independent experts who are involved in the assurance process for that rating system. Diabetes is high on the IAF agenda. The framework will identify CCGs in need of improvement, and then NHS England will work with those CCGs to identify the nature of the changes needed and the type of support required to facilitate those changes.
To give some idea of the support available, we will be working with CCGs to consider the nature of the tasks they need to address. A key focus will be to help CCGs to map how their services compare with those in similar areas, to help them look at best practice from which they can learn and to introduce specific peer support through other programmes. CCGs will be supported in practical, hands-on ways. As we build the data picture of what is going on, we obviously need to support CCGs as they discover that they have variation, of which they may not even have been fully aware.
There are other areas not covered by the IAF that the Public Health England “Healthier Lives” website addresses. I encourage people to look at the vast amount of publicly available data for their local area. NHS Right Care is an important programme that has reducing variation at its core, and it is there to help CCGs and other partners to make step changes in the way they improve care. It will be very focused on diabetes care, and it has been improving services. It will be rolled out to all CCGs over the next 18 months, with practical support and sharing best practice at its heart.
The hon. Member for Heywood and Middleton (Liz McInnes) and I have discussed structured education, and I share her frustration. Essentially, we know that structured education works and that it is being offered to far more people, but that take-up is low. We cannot keep doing the same thing; we must look at things differently. For example, working people with diabetes straight away pose a challenge involving the amount of time that they can take to attend a course. We want to improve take-up. We know that structured education makes a difference to people’s quality of life and, importantly, reduces their risk of developing complications, but we also know that we are not where we need to be.
It is one of my personal priorities to change that. The Department is working with NHS England and Diabetes UK on ways to improve the take-up of structured education, particularly by considering more diversity of provision through digital and web-based approaches, as well as what can be done to improve access to more traditional forms of support. Again, the improvement and assessment framework includes an indicator for the number of newly diagnosed diabetes patients who attend a course. However, we have to make it possible for CCGs to refer people to a course that they think is likely to be taken up. There is something in why such courses are not commissioned as much as they should be: people are aware of low take-up and it is a vicious circle. We need to address that. Next week, an expert round table is taking place with the national clinical director. It will consider options to update structured education, potentially including working with employers, and practical actions that we can take to overcome barriers. I expect to be able to say more about it in due course.
We regularly discuss improving foot care. Particularly for people with late-stage diabetes, it is a challenge and a threat, for reasons that have been well explained. The number of amputations is unacceptably high, and we want to reduce it. NHS England is working with a number of key stakeholders to publish a new framework to improve the delivery of hospital-based diabetic foot services. The framework makes it clear that all patients with diabetic foot problems should have rapid and equal access to services, and describes for commissioners what key elements are in place that they need to commission. The new national diabetes foot care audit provides data on all diabetic foot care services so they can measure their performance against the NICE clinical guidelines.
I note the concern expressed about the survey and the lack of take-up. NHS England is taking action on the issue of GP participation, but I might ask NHS England to write directly to the hon. Member for Heywood and Middleton to say specifically what it is doing, because I share her concerns about having the fullest possible picture. Again, transparency of information, along with improvement support through initiatives such as Right Care, will drive improvement. Interestingly, the variation on amputations does not follow many of the traditional patterns in terms of the burden of disease that we see in some other areas. We need to be able to examine the information at quite a local level, as support for patients is variable even within local areas, and we must expose that.
On inpatient care, the NHS’s focus is on ensuring that all hospitals have inpatient specialist teams to assess and help to manage inpatients with diabetes. Again, if we get that right, it can lead to a significant reduction in complications.
I will say a few words about prevention, as it is at the heart of any public health Minister’s agenda. Preventing people from developing type 2 diabetes in the first place helps to take them off the conveyor belt that can lead ultimately to complications and all the burden of disease that we have been discussing. At all points along that conveyor belt, there are things that we can and must do, and are doing, to make life better for people with diabetes. For example, I welcome the increasing focus of our major charities on prevention and explaining the role of prevention in fending off some of the most serious diseases from which people suffer.
Healthier You, the NHS diabetes prevention programme, goes to the heart of tackling the rising prevalence of diabetes. Around 90% of adults with diabetes have type 2, and an estimated 80% of cases of type 2 are related to lifestyle; as Members have said, it is a huge factor. The national diabetes prevention programme is, we think, the first at-scale diabetes prevention programme to be delivered anywhere in the world. This year it will refer at least 10,000 people to an evidence-based behaviour change intervention that has been proven through randomised controlled trials to reduce the risk of type 2 diabetes.
I can confirm that the programme will be made available to up to 100,000 people by 2020. I know that there is great interest in it. We are learning from the seven demonstrator sites, which tested different approaches over the past year. Although the nature of the intervention is essentially common, there are different ways to deliver it, and we have learned a great deal. We are taking a phased approach, and the first wave of 27 areas covering 26 million people, or half the population, will open their doors to patients in the next few months and throughout 2016.
We are building up at pace. The interventions offer tailored, personalised help to reduce risk, including education on healthy eating and lifestyle and bespoke physical exercise programmes. If there is one thing that I ask of Members, it is to encourage their constituents to attend their NHS health check when invited to do so, as it is one of the gateways into the national diabetes prevention programme.
Of course, that is only part of a wider public health programme of preventing disease in the first place. Members have mentioned children. It is absolutely right that we should go way upstream to consider what we can do to tackle overweight and obesity in children. We will be launching our childhood obesity strategy in the summer. It will examine everything that contributes to children becoming overweight and obese and set out what can be done by all. We are looking at the entire environment around a child, so everything that Members have said that they hope will be considered as part of the strategy is being considered.
All parts of society, the public health system, Government and local government and industry have a part to play. The soft drinks industry levy announced by the Chancellor in the Budget is an important first step, and it has turbo-charged our discussions on the childhood obesity strategy. Its introduction in 2018 is driving reformulation of product, which every expert identifies as a key way to tackle obesity at population level. That is why there is a delay. I cannot comment in detail, but I assure hon. Members that we care about the same things that they do, and that all are being considered extensively.
There are approximately 500,000 type 1 diabetics in the UK. Will the Minister undertake to ensure that continuous glucose monitors, flash glucose monitors and other emerging diabetic technologies are made available as a right on the NHS for people with type 1 diabetes?
Yes, I should say that many of my remarks have addressed type 2 diabetes, but that is not to say in any way that type 1 is less important. I will undertake to write to the hon. Gentleman on that, because there is work going on. As I said, many of my comments have dealt with type 2, but that is not to say that we are not also interested in addressing the challenges of type 1.
I am hugely heartened by the continuing parliamentary interest in this important subject. We will introduce the childhood obesity strategy and I have described all the other work on diabetes. It is good to know that there is so much parliamentary support from all parties for doing more, and particularly on investigating how to prevent diabetes from developing, to ensure that the next generation does not carry the same burden of disease as this one. It is a big challenge, but an unprecedented level of activity is taking place across our health system and the wider public health system, and in government at all levels. I look forward to updating Parliament further.
Question put and agreed to.
That this House has considered diabetes-related complications.
UN Peacekeeping Week 2016
I beg to move,
That this House has considered UN Peacekeeping Week 2016.
It is a pleasure to serve under your chairship, Mr Pritchard, and it is a privilege to have secured a debate on United Nations peacekeeping in a week when British troops have arrived in South Sudan as part of a UN peacekeeping mission.
[Mr Philip Hollobone in the Chair]
UN peacekeeping began in 1948, when the Security Council authorised the deployment of UN military observers to the middle east. The mission’s role was to monitor the armistice agreement between Israel and its Arab neighbours. Since then the UN has undertaken 69 peacekeeping operations, and at present there are 16 peacekeeping operations under way across the world, with troops deployed in Africa, Asia, Europe, the Americas and the middle east. In the years since 1948, hundreds of thousands of military personnel, along with tens of thousands of UN police and civilian support workers, from more than 120 countries, have taken part in UN peacekeeping operations.
The International Day of UN Peacekeepers was on 29 May, and last week was UN Peacekeeping Week. Those events were established to honour the memory of UN peacekeepers who have lost their lives in the cause of peace and to pay tribute to all those who have served, and who continue to serve, in UN peacekeeping operations for their high level of professionalism, dedication and courage.
I was at the Cenotaph on 25 May, along with my hon. Friend the Member for Stirling (Steven Paterson) and other Members of this House, to attend the UN peacekeepers memorial ceremony and commemorate more than 3,400 peacekeepers from some 120 countries who have died from acts of violence, accidents or disease while serving under the UN flag. It was striking to see the variety of nations represented at the ceremony; it was a clear illustration of the global nature of peacekeeping and of the danger facing those who enter challenging situations to support peace and a better future.
The group at the Cenotaph commemorating the lives of those who had died was diverse in many ways, which reflects the profile of the peacekeepers themselves. Six women lead peacekeeping missions across the world. In Cyprus, Kristin Lund is the first woman to be a force commander. It was positive to hear about the recent proposals by the UN for Scotland to provide support for the training of female Syrian peacekeepers, which illustrates the importance of engaging as widely as possible in the name of peace.
Peacekeeping is truly a global concern. Many of the 193 member states of the UN have contributed personnel, equipment or funds in support of the common goal of peace. In March 2015, 128 nations were contributing troops, police or civilian support personnel to the UN. The 2015 leaders summit heard about the 125,000 peacekeepers who are deployed across the globe.
The principles that underpin the operation of UN peacekeeping require the deployment of UN peacekeepers to happen only with the consent of the main parties involved in a conflict. Those parties must commit to a political process, and that consent and commitment give the UN the freedom to act politically and physically to undertake a peacekeeping operation in a situation where there may be significant instability.
Does my hon. Friend agree that the brave members of the armed forces who get involved in the UN peacekeeping forces do so out of a commitment to world peace and stability, and that they are truly an inspiration to all of us?
I thank my hon. Friend for that intervention. He makes an important point that we must reflect on, namely that the people who go and serve in dangerous situations in pursuit of peace are very brave and deserve our admiration.
The idea that UN peacekeepers are impartial is also vital for them to continue to receive support from the parties involved in a conflict, which cannot be underestimated. A study by the RAND Corporation found that deploying peacekeepers reduces the risk of a country sliding back into all-out war by 50%. Of course, there can be genuine difficulty in maintaining impartiality when the peacekeepers are called upon to act in one direction or another. Often, UN peacekeeping missions have to perform a dual role, providing the agreed impartiality but also the robustness required to stand up for what is right for agreements, international law and human rights. That is highly challenging, but UN peacekeepers deal with such situations every day.
Does my hon. Friend recognise the early work done by Andrew Carnegie, who was born in my constituency, in funding the Peace Palace in The Hague, and does she think that establishing a link between The Hague and Carnegie’s home town of Dunfermline would encourage young people to take an interest in peacekeeping initiatives, which would be important, and in honouring peacekeepers worldwide?
I thank my hon. Friend. Anything that we can do to encourage young people to work in the pursuit of peace is absolutely admirable, and I echo his remarks entirely.
Fifteen years ago, the UN deployed 40,000 military and police personnel. Today, there are more than 125,000 personnel, including civilian staff and UN volunteers, and they put themselves in highly dangerous situations to help countries progress from conflict to stability. In fact, if UN peacekeepers are considered collectively, they represent the largest deployed military force in the world. It is striking, therefore, that UN peacekeeping accounts for less than 0.5% of the world’s military expenditure.
Not for the first time, I find myself asking the House to consider priorities in military expenditure. Many countries, including the UK, are enthusiastic about spending eye-watering sums on the most offensive of weapons. They are sometimes much more reluctant to provide proper training, kit and conditions for their troops, and in the case of UN peacekeepers they are much less keen to provide resources to foster and sustain peace than they are to provide the capacity for war.
The UK Government’s commitment in deploying 70 British military personnel to Somalia, in addition to the personnel who were sent to South Sudan yesterday, is very welcome, particularly because it represents a doubling of the commitment of British personnel to UN peacekeeping forces. I note that the Minister for Armed Forces has said that she believes this represents a turning point in UK involvement in global peacekeeping operations; I hope so.
It is interesting to examine the detail behind how countries co-operate to facilitate UN peacekeeping operations. The cost of peacekeeping is allocated using a complicated formula, and I commend the USA, Japan, and China in particular for their willingness to provide funds. In the case of personnel, however, the pattern is very different. The 10 biggest budget contributors are estimated to supply just 6% of peacekeeping troops. Although China features in both top ten lists and has committed to significant increases in the funding that it provides to the UN, there is a clear pattern of African and Asian countries providing the UN with the vast majority of troops. In fact, peacekeeping can be relatively lucrative for some countries, with the UN paying more than $1,300 per soldier per month. For instance, Rwanda contributes more than 6,000 troops to the UN but contributes just $16,500 in funds every year. The scope for nations to provide the support they can for the maintenance of peace in the way they can best manage is therefore important.
Looking at the bigger picture, however, the UN peacekeeping budget of about £8 billion annually, which protects more than 125 million people globally, is less than the annual budget of Transport for London. Moreover, because the peacekeeping personnel put their lives on the line to try to bring stability to some of the world’s most vulnerable populations, the scope and complexity of the tasks they undertake have increased significantly. The risks that they face have also increased. The blue helmets of UN peacekeepers are increasingly being targeted directly. Last year saw 129 fatalities of peacekeepers, who came from 46 countries.
When UN peacekeepers first began operations, the Security Council often froze into inaction as the cold war began to bite. Initially, peacekeeping operations often involved supporting the maintenance of ceasefires and stabilising situations on the ground, so that there was the opportunity to resolve conflict peacefully by political means. Consequently, peacekeepers tended to be unarmed observers with a remit to monitor and report what was happening.
Some of that early activity continues to this day. The deployment of peacekeepers to India and Pakistan continues, and their deployment to Cyprus is long-standing. However, as global issues changed, the UN continued to develop its approach to peacekeeping. The Congo operation, launched in 1960, was the first large-scale mission, with nearly 20,000 military personnel deployed. Sadly, that operation demonstrated all too well the risks involved in trying to bring stability to war-torn regions. In total, 250 UN personnel died, including the UN Secretary-General, Dag Hammarskjöld.
In 1999 the UN returned to the Congo, which by that time was the Democratic Republic of Congo. However, in a country the size of western Europe that has just 300 miles of modern road, the challenge and cost of long-term deployment are immense. The DRC is one country that illustrates the need for a twin-track approach of both peace and development if countries are to be stabilised.
In 1988, UN peacekeepers were awarded the Nobel peace prize. At that time, the Nobel prize committee stated that
“the Peacekeeping Forces through their efforts have made important contributions towards the realization of one of the fundamental tenets of the United Nations. Thus, the world organization has come to play a more central part in world affairs and has been invested with increasing trust”.
With the end of the cold war, the strategic context for peacekeeping changed dramatically and the focus of peacekeeping missions shifted as the nature of conflicts changed. There was also more of a focus on laying the foundations for sustainable peace. The range of tasks carried out by peacekeepers broadened significantly, with peacekeepers helping to build sustainable institutions of governance and carrying out human rights monitoring and the reintegration of former combatants.
Of course, the military personnel who were deployed remained, and still remain, the key focus of peacekeeping operations, but a wide array of other functions were coming to the fore, as the breadth of the task that was now required became apparent. There is now a need for those with skills in humanitarian work, economics, law and mine clearance to name but a few.
In tandem with the increased scope of peacekeeping operations, the number of operations continued to increase after the end of the cold war. Sometimes the peacekeepers faced action in locations where the guns had not yet fallen silent. It was not possible to keep the peace in the former Yugoslavia, or in Somalia and Rwanda, because peace did not exist in those places at those times. It is no wonder that there was no success in areas where warring factions continued to do battle.
The missions, and the situations surrounding the conflicts, underscored the necessity for clear parameters and robust support for peacekeeping forces. Peacekeepers were dispatched to areas as diverse as Angola, Bosnia and Haiti in the ’90s, and Cyprus has seen continued deployment, with 64 soldiers from 1 Scots recently receiving medals at a ceremony in Nicosia for service as UN peacekeepers on the island.
UN peacekeepers have acted as administrators in Kosovo—in the former Yugoslavia—and in East Timor, as it progressed towards independence from Indonesia. In East Timor, the responsibility to protect human rights came to the fore, which is particularly important when there is a vast disparity in the size of the power of adjoining nations. One of the roles of UN peacekeepers can be to underpin the process by which a new country joins the international community. This new country, East Timor, was for hundreds of years part of the Portuguese empire. After world war two Portugal reasserted control, but the Dutch were unable to do the same in all their former colonies and an independent Indonesia emerged. As Portugal abandoned its former colonies in 1974, Indonesia incorporated East Timor. An Indonesian invasion then started a brutal occupation in East Timor and, after many years of the world looking away, international pressure, including from this House, led to Indonesia agreeing to hold a referendum, in which the Timorese overwhelmingly backed independence. The Indonesian military and local militia began an orgy of destruction, which ended only after UN peacekeepers, led by Australian troops, arrived to supervise the Indonesian withdrawal.
The international community faces many peacekeeping challenges, including in East Timor, and there is rightly increasing scrutiny of the work of peacekeepers and of the problems and concerns that arise when they are deployed. Secretary-General Ban Ki-moon tasked a high-level independent panel on UN peace operations with making a comprehensive assessment of the state of peace operations and the emerging needs of the future. He said:
“The world is changing and UN peace operations must change with it if they are to remain an indispensable and effective tool in promoting international peace and security.”
He imposed a zero tolerance policy following allegations of sexual exploitation and abuse by UN peacekeepers in host countries. I strongly urge the UN to ensure that it deals properly and robustly with such allegations, for instance against peacekeeping troops in the Central African Republic. To do otherwise not only damages victims who are already in the most vulnerable of situations but devalues the work and reputation of UN peacekeeping.
It is vital that the UN learns lessons and uses that learning to develop further capability in planning, increasing participation and working towards positive and sustainable outcomes. The most vulnerable people in the world rely on the good work of peacekeepers to improve their future, and we must work with others to ensure that that key aim remains at the centre of the work. The British troops setting off to undertake peacekeeping duties in South Sudan will join 12,000 UN troops from more than 50 nations, and they will undoubtedly face challenges as the fractured country looks to the future, with the need to strengthen infrastructure being apparent.
With such missions, UN peacekeeping finds itself stretched like never before and increasingly called upon to deploy to remote, uncertain operating environments. In the increasingly complicated global framework, the work of the UN and its peacekeepers has never been more important, and peacekeeping missions will continue to be needed to deal with a multitude of challenges and increasingly to focus on capacity building for sustainable societies.
The benefits are more than the obvious ones. The World Bank assesses that UN peacekeeping missions have a positive effect on GDP, with growth rates nearly 2.5% higher in post-conflict countries where peacekeepers are present. Although the numbers of UN peacekeepers have recently fallen slightly, they represent a significant increase on the numbers deployed 20 or so years ago. However, that by no means indicates that the challenges faced by the UN are diminishing.
Sitting suspended for a Division in the House.
To continue where I left off, although the number of military peacekeepers may be decreasing slightly, the demand for field missions will remain high and peacekeeping will continue to be one of the UN’s most complex, specialised and demanding operational tasks. Moreover, the political complexity that peacekeeping operations face and the scope of their mandates, including on the civilian side, remain very broad. There are strong indications that certain specialised capabilities, including policing, will be in especially high demand over the coming years.
UN peacekeeping missions operate in the most dangerous and difficult environments in the world, dealing with the conflicts, and their aftermaths, that others cannot or will not address. We can achieve what others cannot, but the success of our contributions is never guaranteed. In future, multidimensional peacekeeping will face many demands, including with regard to the political process, protecting civilians, assisting in disarmament, the demobilisation and reintegration of former combatants, supporting the organisation of elections, promoting human rights and restoring the rule of law.
Peacekeeping has always been highly dynamic and has evolved in the face of new challenges. UN peacekeeping is a unique global partnership, with its strength being in the broad spread of contributing countries that participate and provide precious resources. I wish the peacekeepers well with their important task. The people they protect depend on them, and those who rely on their bravery and hard work also wish them well.
I congratulate the hon. Member for East Renfrewshire (Kirsten Oswald) on securing the debate and welcome the opportunity to discuss the challenges faced by UN peacekeeping operations and how we should try to address them. She spoke very well about the scale of the task that UN peacekeeping missions face in some of the most dangerous operating environments around the world, and about the vital role they play in trying to keep vulnerable civilians safe in the face of some of the most appalling threats of violence that any society can be confronted with. I was pleased that she was able to attend the Cenotaph ceremony on 25 May, at which my right hon. and noble Friend Baroness Anelay of St John’s laid a wreath on behalf of Her Majesty’s Government as a demonstration of the Government’s support for the work of United Nations peacekeeping missions past and present.
Peacekeeping remains a vital tool of the UN, and one on which the international community depends heavily. The past five years have seen an increase in both the number and the type of threats faced by UN peacekeepers. I echo the tribute that my noble Friend Baroness Anelay paid on 25 May to the men and women in blue helmets who put their lives on the line in order to protect the vulnerable.
UN peacekeeping operations are under strain, and peacekeepers are increasingly being asked to do more than they did in the past. In addition to protecting civilians and helping to restore the rule of law, we now look to them to try to ensure the safe transit of humanitarian aid supplies. Changes are needed to respond to those evolving demands. The Secretary-General’s review of peace operations, which took place last year, highlighted the need for reform. The Government welcomed that review, which provided us and our international partners with the opportunity to reflect on our approach to UN peacekeeping. This country already provides it with significant support, both through our permanent seat on the Security Council and through our financial contributions. We provide £303.6 million towards UN peacekeeping as part of our assessed United Nations contribution. Additionally, we have committed £1 million of programme funding to specific priorities identified by the UN on which more work or help is needed.
However, we are committed to doing more. I acknowledge the kindness of the hon. Member for East Renfrewshire in referring to the extra commitments that the Government have made as part of the Secretary-General’s review, and at and since the leaders summit hosted by President Obama in 2015. At that summit, the UK pledged our support, along with more than 50 nations and international organisations, for Ban Ki-moon’s efforts to strengthen UN peacekeeping for the future. The Prime Minister pledged to double our military contribution to peacekeeping by sending up to 70 troops to support the peace operations in Somalia and between 250 and 300 to South Sudan.
The first of those personnel deployed to Somalia last month, as the hon. Lady said, and we are preparing the ground for the bulk of our deployment over the next few months. We are offering logistical, medical and engineering expertise and short-term training teams, all in support of enhancing the capability of the UN operation, as well as to support troops from the African Union Mission in Somalia and the Somali national army. In South Sudan, the United Kingdom will make a significant contribution to the effectiveness of the UN peacekeeping mission. We plan to stagger our deployment; as the hon. Lady said, we have just deployed our first troops to South Sudan, and we intend that the main contingent should arrive at the end of the year. We are working with the UN now to identify exactly where this country’s expertise will be most effective. That may well include vital engineering work, which is one area in which it seems both to us and to the UN that we could make a particular contribution.
Our pledge to double our military commitment is part of a wider approach designed to help improve UN peacekeeping operations. We want to ensure that the UN is able to get the right people and equipment to the right place at the right time. I can boil that down to three overall objectives: first, encouraging more countries to pledge additional support; secondly, securing improvements in UN planning procedures; and thirdly, boosting the overall quality of troop and mission performance.
I shall say a little more about each of those three objectives. First, on pledges, our vision is that the UN should be able to draw upon a bigger pool of troop-contributing countries than is currently possible. That pool of potential contributions should have a wider range of capabilities than currently exists, so that the UN can pick the right contributions to suit a particular mission in a particular part of the world. That will allow the UN to deploy peacekeeping missions with the resources and abilities to carry out their mandates and the confidence that those objectives can be achieved. We are delivering on the pledge we made last year, and it is vital that others do the same. My right hon. Friend the Secretary of State for Defence will host a ministerial-level meeting in London later this year, which we are looking forward to as, among other things, an opportunity to continue to press some of our international partners to deliver the pledges made at President Obama’s meeting last year.
Secondly, on planning, there is increasingly a gap between the expectation that the United Nations should intervene in difficult operating environments and the ability of peacekeeping missions to meet difficult demands in practice. To improve the co-ordination of peacekeeping efforts and the ability to respond effectively to new crises, there needs to be better planning and analysis. That starts with design and goes through to the set-up of operations and the eventual drawdown and conclusion of a peacekeeping operation. A mission needs at all times to have a clear focus on what it is seeking to achieve. We have already begun funding a new unit in the UN Secretary-General’s office to support improvements in planning and analysis.
Finally, better planning must be matched by improved performance. Increasing the number of available peacekeepers and improving the planning of missions will help, but that will work only if all peacekeepers, wherever in the world they come from, are appropriately trained, fully equipped and properly vetted before they are deployed. All countries that contribute either troops or police officers should deploy peacekeepers who have been trained to the highest standards. We will continue to push for that and for poor performance to be tackled constructively.
The hon. Lady mentioned the very serious allegations in respect of members of the peacekeeping operation in the Central African Republic. As part of our objective of improving the performance of the UN peacekeeping operations, it is a United Kingdom priority to work with the Secretary-General to tackle sexual exploitation and abuse, which, sadly, has been carried out by a small minority of peacekeepers. We welcome Ban Ki-moon’s recent report on special measures for protection from sexual exploitation and abuse and his appointment of Dr Jane Holl Lute as his special co-ordinator in improving the UN’s response. The extra £1 million of programme funding, which I referred to earlier, is being targeted in particular at efforts to help improve the capability of deployed peacekeepers to design a reporting system that local communities and potential complainants feel able to trust, and to ensure that, in the future, we get a stronger and swifter UN response to proven allegations.
The Government are committed to working with others around the world to achieve those reforms. As I said, my right hon. Friend the Defence Secretary will host a follow-up meeting to President Obama’s summit here in London in September.
I am delighted to hear about all the contributions that the British Government and the British military are making not only to UN peacekeeping on the ground but to future planning so that UN peacekeeping forces can better deliver their missions. To which regions of the world should Britain and the UN be looking to make further and bigger contributions? The Minister says that some are not doing as much as they could. I do not want him to identify countries, but which regions should be doing more, along the lines of the excellent work of our British Government?
I am grateful to my hon. Friend for not inviting me to point the finger at particular Governments. I do not think it would be helpful for me to do that in public—it is something better done through intensive diplomatic work, including at the forthcoming meeting. One has to look both at developed countries and at some of the emerging economies that are looking to take a more active role in international affairs and politics, and say to them, “As part of that, we think that it would be a very good contribution for you to make resources available to the United Nations.” Looking around the world, it is striking that a country does not have to be one of the so-called great powers to make an effective contribution. Countries such as Norway or Finland have made some very effective contributions to different UN operations over the years. There are some fine examples that other countries can look at.
The UN peacekeeping defence ministerial will take stock of pledges delivered since the last summit and encourage others to make good on their pledges, but it will also focus on how to improve UN peacekeeping and make real progress on reform, including on how to include more women in delivering peace and security. I hope that the London meeting will make a critical contribution to improving UN peacekeeping efforts and, in doing so, deliver better protection for those most at risk and in most need.
The United Kingdom wants to see more effective, more responsive and better resourced peacekeeping operations. We have identified the areas where we can best support the United Nations and have a positive effect, and we have already started to work on them. Most importantly, we are asking others to join us. We are determined to lead the work to help deliver real change, to make a real difference to the quality of UN peacekeeping and to enable the United Nations to meet the challenges that it will face in the future.
Question put and agreed to.
HPV Vaccinations for MSM
I beg to move,
That this House has considered HPV vaccinations for men who have sex with men.
Thank you for chairing this debate, Mr Hollobone; it is always a pleasure to serve under your chairmanship. This debate is a continuation of those that we have had over the past few years. The extension of the human papilloma virus vaccination programme to men who have sex with men—MSM—has been three years to the day in the making.
I first raised this issue in an Adjournment debate on 2 July 2013. I thank the then Minister for Public Health, my right hon. Friend the Member for Broxtowe (Anna Soubry), who, in responding to that debate, said that the issue could no longer be ignored. However, I reserve my heartiest thanks for the Under-Secretary of State for Health, my hon. Friend for Battersea (Jane Ellison), who is in her place today, for her unswerving support to ensure that HPV vaccinations are finally available for MSM. I have no doubt that without her personal support and her forbearance of my cajoling on a regular basis the new programme may not have happened.
Before turning to issues relating to the pilot of the new vaccination programme, it is worth reminding ourselves why such a programme is needed. I make no apology for raising yet again what some might regard as unsavoury issues—sometimes we do not like to talk about sexual health. HPV is responsible for nine out of 10 cases of genital warts, and men are six times more likely than women to have an oral HPV-related infection, which increases the risk of cancers of the mouth, throat, neck and head. Then there is HPV-related penile and anal cancer. HPV is associated with 80% to 85% of all anal cancer in men. In 2009, just after the general HPV vaccination programme started, there were more than 6,500 cases of these cancers. Some 47% of penile cancers and 16% of head and neck cancers are thought to be HPV related. The latest incidence data show that in 2010 there were 437 incidences of anal cancer, 5,637 incidences of oropharyngeal cancer, 515 incidences of penile cancer and 90,000 incidences of genital warts. Rates of some HPV-related cancers are on the increase in the UK and throat cancer has overtaken cervical cancer as the leading HPV-related cancer.
It is worth looking at the costs incurred in treating these cancers, which could now be avoided. Each HPV vaccination for the three-dose programme costs an estimated £260 on the open market—I appreciate that the NHS will, I hope, have negotiated a lower price. That compares with the £13,000 cost of treating anal cancer, the £11,500 cost of treating penile cancer, the £15,000 cost of treating oropharyngeal cancer or the £13,600 cost of treating vulva and vaginal cancer transmitted by an infected male. In 2010, the cost of treating genital warts was £52.4 million. The clinical and financial reasons are self-evident. That is why we started this debate three years ago, and today we have a pilot for making vaccinations available for MSM through sexual health clinics.
I will not detain hon. Members for long; this is really an update request. I have several questions for the Minister. How long will the pilot be for? Who exactly will the pilot vaccination programme be available to? Is it to men identifying as MSM or men identifying as MSM who request the vaccine? What if a man who does not identify as MSM asks for the vaccine? Will it be available to heterosexual males?
How will the pilot be evaluated? For example, will it simply be from the take-up of MSM patients registered, or will it measure the adherence rate, because the programme requires three doses, and for all three to be taken, to be effective? So will the evaluation include adherence to the dosage requirements? Is there a timescale to measure the impact on HPV-related cancers and genital warts? Will the results and any mid-pilot indicators be reported to the Minister and, eventually, made public?
I must also ask whether the vaccination programme will include adolescent boys if they turn up at a sexual health clinic. They might not technically or legally be men, but if they are at risk and go to a sexual health clinic, will the HPV vaccination be available to them because they are at risk, and if a clinician deems it necessary? Finally, I cannot miss the opportunity to nudge the Minister on whether we may have an update on when HPV vaccinations will be widely available to all boys in the UK.
The debate is due to finish no later than 5.45 pm. The recommended time limits for the Front Benchers are five minutes for the Scottish National party, five minutes for Her Majesty’s Opposition and 10 minutes for the Minister. The time between now and the first of the Front Benchers being called is open to Back Benchers, and the first person on my list is Jim Shannon.
Thank you, Mr Hollobone, and it is a pleasure to be able to speak in the debate.
I congratulate the hon. Member for Finchley and Golders Green (Mike Freer) on securing a debate on such an important issue. He has been a stalwart speaker on the issue in this Parliament and the previous one. He never lets his subject matter fall, and I thank him for his commitment and his energy.
It is good to see the shadow Minister, the hon. Member for Denton and Reddish (Andrew Gwynne), in his place again. It is also especially nice to see the Minister in her place again—she is spending a great deal of her afternoon in Westminster Hall, but it is always a pleasure to have her here. I look forward to her response to this debate.
For years, often due to stigma and attitudes, the issue was ignored, so it is welcome that we can now give it the attention that it deserves, not only in Parliament, as today and in the past, but in all walks of life, because it is now part of national conversations on advancing healthcare. As the Democratic Unionist party health spokesperson at Westminster, I am pleased to participate in the debate, to encourage and support the hon. Member for Finchley and Golders Green in what he is talking about today, and to comment on what we have done in Northern Ireland, as I always do in such debates, hopefully adding to our general knowledge of the subject.
Genital warts are the most common viral sexually transmitted infection and are caused by the human papilloma virus. In September 2008, Northern Ireland introduced an HPV vaccination programme targeting 12 and 13-year-old girls in schools. It primarily vaccinated against HPV 16 and 18, which are associated with more than 70% of cervical cancers. From September 2012, 12 and 13-year-old girls were offered the quadrivalent vaccine, which protects against not only types 16 and 18, but types 6 and 11, which are mainly associated with the majority of genital wart viruses. It is expected that rates of first episodes of genital warts will be positively impacted by the introduction of the HPV vaccination programme.
In men, there is no reliable test for HPV infection. As the hon. Gentleman said, it is often difficult to diagnose, and there are no symptoms for high-risk HPV. People who are known to be at a high risk of having anal HPV and of developing anal cancer may be offered an anal smear, but nothing goes beyond that. It is frustrating to have some steps in the health process, but no steps to take things to the next stage and to do what the hon. Gentleman said. That is why we are having the debate today and why it is critical for men to start receiving equality with women in terms of the protection offered against HPV by the health service. Given the higher risk of HPV infection associated with men who have sex with men, surely the provision of a vaccine is a no-brainer.
In November 2015, following a review of the evidence, the Joint Committee on Vaccination and Immunisation published a position statement recommending the introduction of a vaccination programme for men who have sex with men, are aged up to 45, and attend genitourinary and HIV clinics. Some steps forward have been taken, but larger steps are needed, with more ground being covered.
Since the JCVI recommendations, and in line with them, the Welsh and Scottish Governments have announced that they will roll out vaccination programmes. I hope that the Department of Health in Northern Ireland will follow suit—the matter is devolved, as the Minister knows—and that men throughout the United Kingdom will get the long-overdue support that they deserve. It is about fairness, and when there is clear evidence that a section of the population might be at particular risk of something, appropriate action should and must be taken.
Continued monitoring of results is also necessary to ensure that the recommendations, when implemented, have the desired results, and that any changes or extensions to the plans can be made to ensure the most full and proper protection available is afforded to all those affected. To conclude, developments are long overdue. The debate has been welcome and an opportunity to highlight the issue—I congratulate the hon. Gentleman again. The fact that a goodly number of Members are participating is an indication that we, too, want to see change. It is about seeing the plans implemented and ensuring that the proposals work well in practice.
I am delighted to see you in the Chair, Mr Hollobone.
I congratulate my hon. Friend the Member for Finchley and Golders Green (Mike Freer) on securing the debate and on leaving enough time for a few of us to add a few words in a few minutes.
I need to declare a short list of potential interests. I am a small—by which I mean I have a small practice, not that I am small in stature, because I am afraid my overweight problem makes that rather redundant—and very part-time dentist. I am also chair of the all-party parliamentary groups for dentistry and oral health, and on skin, both of which have a link to and provide an interest in the debate.
My hon. Friend has explained all the disasters related to this ghastly virus, and what it does. I am more interested in head and neck cancers, for obvious reasons, which he touched on. The statistics on head and neck cancer related to HPV make for hideous reading. Up to 70% of oropharyngeal cancers are caused by HPV. In addition, recent research has found HPV in nearly 20% of large periapical dental abscesses—not as the cause, but probably as a co-contributor to the infection.
Treatment of head and neck cancers are often debilitating, disfiguring and destructive of the patients and their self-esteem. Unless the cancer is caught very early, most frequently radiology and/or surgery is required, involving the face, the jaw and teeth, the neck, the tongue, the pharynx, the larynx, the oesophagus, or combinations of them. Only think of that and we can think how debilitating it is for the patient. Physical disfigurement is common, and speech and eating can be significantly impaired. In the global ranking of cancer deaths, head and neck cancers rank fifth. Furthermore, the prevalence of head and neck cancer is higher in males than in females—a ratio of approximately 2:1.
The cost to the NHS of treatment is astronomical. The latest figure I am aware of is from 2011, when it was costing us £310 million. Since the growth in the frequency of head and neck cancer is one of the fastest of all cancers in the UK, the cost must be considerably higher now—I am sure the Minister will correct me and give the ghastly figure, if the opportunity arises.
Vaccination programmes can eliminate, or virtually eliminate, certain diseases. The anti-polio campaign is such an example. The aim in such programmes is to produce what is called herd immunity. The success of the HPV vaccination programme for adolescent girls in the United Kingdom is progressing and becoming evident, but it is not producing herd immunity. Not every teenage girl participates in the programme, let alone completes the programme. Furthermore, given that today’s debate features men who have sex with men, they are obviously outside any herd immunity that might arise from the inoculations.
I also contend that heterosexual men—quite a proportion of us are left in the community—[Hon. Members: “Hear, hear!”]. I thank hon. Members for the support. We are also vulnerable. Not every girl has the inoculation, as I said, and not every girl completes the programme—I believe the estimate is that 10% of girls do not get full vaccination cover. So if, as some research has suggested—I am not sure whose research this was—an estimated 20% of 16 to 24-year-old men have had 10 or more partners, that means, statistically, one of those partners has not been vaccinated, although it could be more or less.
I fully support vaccination for men who have sex with men. However, vaccination programmes for boys and girls would lead to herd immunity and in time pick up that group as well. I understand that that would cost about another £22 million per year more than the cost now for girls. That is small beer when set against the £58 million spent on treating genital warts and is well below the £300 million spent on head and neck cancer treatment—and we must add in the pain and suffering of cancer victims. As I said to the Minister in July 2014,
“it is not fair, ethical or socially responsible to have a public health policy that leaves 50% of the population vulnerable”—[Official Report, 1 July 2014; Vol. 583, c. 866.]
to HPV and the dreadful diseases that so often relate to it.
What is important is not who is having sex with whom but the fact that we need herd immunity for the whole population. If Australia, Austria, Canada, Israel, Switzerland and the USA—and I suspect also New Zealand, but I have not asked—can achieve herd immunity across the board with excellent results, so can we.
I congratulate the hon. Member for Finchley and Golders Green (Mike Freer) on securing the debate. Vaccinations against HPV were introduced in the UK primarily to target cervical cancer. The HPV vaccination programme for girls aged between 11 and 13 has been in place since 2008, and last year the uptake of the vaccination was 89.5% across the UK. It has therefore been a huge success.
However, there are more than 100 types of HPV and it is one of the most common sexually transmitted infections in the UK. HPV infections are highly contagious, as they are spread mainly by skin-to-skin contact, and nearly all sexually active people get infected at some point in their lives. Some HPV infections clear up with no treatment necessary; others will develop into treatable conditions, such as genital warts; and some will go on to cause cancer. Despite the fact that HPV vaccinations in schools are available only to girls, to target cervical cancer, not only women can be infected. As we have heard, among men, 80% to 85% of anal cancers and almost 50% of penile cancers are associated with the infection. Evidence that has emerged since the original HPV vaccination programme was introduced has shown that immunisation is likely to provide protection against a wide range of HPV-related diseases, including those cancers.
The widespread vaccination of girls was intended to create wholescale community immunity and prevent the spread of HPV to unvaccinated male sexual partners. In Australia, research has shown that to have been a success, with a 90% reduction in genital warts in heterosexual men and women under 21 years of age. However, the vaccination programme ignored a significant section of society, which is left defenceless against the dangers of HPV: men who have sex with men, for whom the burden of HPV-related diseases is significantly increased compared with heterosexual men. In particular, they experience a higher risk of suffering from HPV 16-associated anal cancers, with rates 15 times higher in men who have sex with men.
The Joint Committee on Vaccination and Immunisation’s recommendation that a vaccination programme should be introduced for men up to 45 years of age who have sex with men is therefore welcome. In March, the Scottish Government announced their intention to introduce a targeted vaccination programme as soon as possible, and this month NHS England will begin a pilot vaccination programme at selected sexual health clinics to test delivery in those settings. However, the decision to implement a pilot has been described as “unnecessary” and “a cynical stalling tactic” by the Terrence Higgins Trust, which has pointed out that the London North West Healthcare NHS Trust already provides vaccinations to men who have sex with men, with impressive take-up and results. The Terrence Higgins Trust rightly does not want to see delayed a full national programme that could prevent serious illnesses and save lives. Its fears can possibly be traced back to NHS England’s decision not to commission PrEP, a preventive medication for those at risk of HIV, after an 18-month investigation. Instead, NHS England opted to run a number of test sites over two years to research how that treatment could be introduced in the most clinical and cost-effective way. That decision was described as “shameful” by the Terrence Higgins Trust and “astonishing” by the National AIDS Trust.
The pilot HPV vaccination programme is intended to immunise 40,000 people and be followed by a review of its impact. That is a welcome first step, but it is clear that immunisation will need to go beyond sexual health clinics. Those who do not attend such clinics will not be immunised and many may mistakenly believe that they do not need to be vaccinated if they use condoms. Significantly, the optimum age for men to receive the vaccine is as 12 to 13-year-old boys—in other words, at school, at the same time as their female classmates. That is the logical next step.
The Joint Committee on Vaccination and Immunisation is currently considering this issue along with Public Health England and the University of Warwick, although it will not be in a position to provide its final advice until 2017. The Terrence Higgins Trust, HPV Action, the British Association for Sexual Health and HIV, and the British Medical Association all support expanding vaccination to boys through the existing school-based programme. That would mirror the position in Australia, Canada and the United States, ensure that high vaccine coverage rates are achieved and protect all males and females, whatever their sexual orientation, from such serious diseases.
In public health debates, there will always be competing claims about money, priorities and whether proposed action has more positives than negatives, but in this debate the jury has delivered a clear verdict. The vaccine has saved the lives of countless girls and women. Is it not time that we showed some gumption and delivered the same benefits for young men?
I am glad to be speaking today, and particularly glad that the hon. Member for Finchley and Golders Green (Mike Freer) has secured the debate. I started as a new boy in Parliament last year and this issue came across my desk in September. The one simple thing that really shocked me was that we were only immunising girls. I could not believe that we had chosen to go for just one side. The debate is therefore necessary.
I knew nothing about the subject, so we put forward an early-day motion, but I was shocked to find that a whole mass of people here do not sign such motions. We should all support that motion, so I send a message to people to please look through and sign early-day motions, not just ignore them as a policy. The more I looked into HPV, the more I was appalled by how horrific the diseases were. I went to the pop-up drop-in meeting and was shown photographs of genital warts and other unpleasant diseases. They are quite horrific. We should be helping everyone with such diseases, whatever the cost, and we must find the most important and economic way of doing so.
I was glad to see that my colleagues in Northern Ireland from every party had signed the early-day motion. That shows that although we are a part of the world that is sometimes known for avoiding this sort of subject or avoiding difficult things, we can lead. I was glad to hear the update from the hon. Member for Strangford (Jim Shannon) on where we have got to, and I too will ensure that we push for everyone in Northern Ireland to be looked after and vaccinated. I ask the Minister to look at how we can get a vaccination programme in place as quickly and economically as possible, so that 400,000 boys a year can be vaccinated, the disease does not build up and get worse, and the vaccination is there for all people of every type. That is the message that I want to get across.
It is always a pleasure to see you in the Chair, Mr Hollobone. I congratulate the hon. Member for Finchley and Golders Green (Mike Freer) on securing this important debate. I will concentrate on four points that I believe are fundamental: stigma, the recommendations of the Joint Committee on Vaccination and Immunisation, implementation and lessons to be learned. I have no doubt that living with HPV can be similar to living with HIV/AIDS. Nobody wants to talk about it, even today, and that cultural silence embeds the stigmatisation of those living with HPV, while limiting our ability to improve access to services and to reduce the indices of, in this case, men who have sex with men who are infected with HPV.
As my hon. Friend the Member for East Dunbartonshire (John Nicolson) said, HPV is one of the most prevalent infections. Statistically, most of us in this room will have been infected by at least one of the differing strains at some point in our lives. Although the majority of us deal with that infection naturally, which has already been mentioned, challenges in removing the infection remain for those, critically, who smoke, and those with compromised immune systems—for example, people living with HIV/AIDS.
As for stigma, let us be frank. Discussing anal warts can be a conversation stopper. For men, in particular, addressing and discussing health-related issues is problematic in general. With that in mind, I encourage Members to reflect on research undertaken several years ago in Scotland on male cancers for Cahonas Scotland by John Docherty-Hughes of Queen Margaret University, Edinburgh. I must declare an interest: he happens to be my husband. Entitled, “Men, Masculinities and Male Cancer Awareness: a preliminary study”, it found that men felt uneasy when being open about their fears in relation to their own health, specifically in relation to cancer for that research, but also health in general. I recommend Members avail themselves of that research as it challenges those who seek to improve services for men, whether cancer or HPV specifically. It is critical that we reduce stigma in relation to male health and wellbeing.
Let us return to the recommendations of the JCVI. As a Scottish constituency MP, I am delighted that the Scottish Government earlier this year announced that they will make men who have sex with men eligible to receive the HPV vaccine without recourse to a pilot. They are working to ensure that the vaccine can be introduced for men who have sex with men as soon as possible, in contrast to the pilot programme being proposed by the UK Government in England. On implementation, the roll-out of the HPV vaccine has so far been a resounding success, with HPV immunisation uptake exceeding 80% in Scotland.
As to lessons learned—I do not want to detain the House for long—the hon. Member for Finchley and Golders Green has, by securing this debate, given us the opportunity to inform and educate not only the policy makers sitting behind the Minister, but colleagues and those watching the debate in the Public Gallery and on television. The key to improving the health and wellbeing of men, from my perspective and in much of the research I have read, is education based on their lived experience culturally, socially and economically. That is whether they have sex with other men—frankly, one can identify as being heterosexual and have sex with other men—are homeless, are black or from a minority ethnic community, identify as heterosexual, homosexual or bisexual, or are transgender, because even men in transition must deal with the consequences of male health.
The key question is this: are the UK Government and healthcare practitioners in the NHS and the charitable sector able to meet the challenge and listen to the lived experience of men who have sex with men living with HPV and those who support them? Will they begin the full implementation of the recommendations of the JCVI and start the full roll-out of that vaccination across England?
It is good to see you in the Chair for the second sexual health debate of the day, Mr Hollobone, at which you have been present along with myself and other hon. Members. I congratulate the hon. Member for Finchley and Golders Green (Mike Freer) on securing this debate. He started by saying that it is perhaps not always nice to discuss unsavoury issues. Just imagine the lives we could have saved if we had discussed unsavoury issues a lot more a long time ago. I genuinely welcome this debate, and indeed the other work he has done on matters related to gay and bisexual men’s sexual health, particularly PrEP, which we discussed in the House earlier today. He described this debate as an update request. I am afraid to tell the Minister I am going to go one further. I think we sometimes get too many updates and not enough action; it is action that we need to see.
We have had some incredibly thoughtful and well-researched contributions, including from, as usual, the hon. Member for Strangford (Jim Shannon). We have heard some excellent experience from the medical profession, and my hon. Friend the Member for East Dunbartonshire (John Nicolson) quoted the Terrence Higgins Trust, which has called the pilot scheme a “stalling tactic”.
I notice a pattern when it comes to these matters. There seems to be an attitude among the public that the Government—I do not doubt the Minister’s sincerity on these issues; I genuinely mean that—do not appear to be taking LGBT sexual health as seriously as they should be. We have a situation, as my hon. Friend the Member for West Dunbartonshire (Martin Docherty-Hughes) outlined, in which the Scottish Government have moved forward on this, the Welsh Government have moved forward on this, international partners have moved forward on this, but the largest constituent nation of the United Kingdom has decided to sit on its hands and go for an unnecessary pilot scheme. The message from sexual health charities and from the public is that that is just not good enough. I cannot understand, given the position we find ourselves in with this issue and with the PrEP issue, why we have not seen further progress.
My hon. Friend the Member for West Dunbartonshire mentioned the important issue of stigma. We cannot go back to the days when stigma caused people not to have conversations, seek treatment or seek to have a healthier lifestyle. That would be disastrous for public health and for the public purse. There is an appetite across Europe and across the United Kingdom to move forward on this issue, which does not stop at any border. It is something that we all have to work together on. We want to see the UK Government get a bit of “gumption”, as my hon. Friend the Member for East Dunbartonshire said, get off the fence, and start with some positive action on this issue and on the PrEP issue as well.
It is a pleasure to serve under your chairmanship, Mr Hollobone. I add my congratulations to the hon. Member for Finchley and Golders Green (Mike Freer) on securing this debate, and on the important cross-party work he does in the House on championing the cause of men’s sexual health. I also thank other hon. Members for their contributions.
I understand the importance of the quasi-independent nature of the JCVI, and I do not want to change that, but I believe the Minister has an important duty to the country to ensure that the JCVI operates efficiently and with the right priorities in mind. In that spirit, I have a series of questions to ask her on this important matter, some of which have been covered in the debate. First, I will raise the long delay in the decision on whether all boys should be vaccinated. The JCVI began its assessment on whether boys should be included in the national vaccination programme in 2013. A decision was originally expected last year, but was subsequently rescheduled for 2017. Experts in the field are already convinced that boys should be vaccinated, and I urge the Minister to ask the JCVI to make its recommendation this year, so that implementation can begin as soon as possible.
Secondly, I want briefly to discuss the JCVI’s approach to making the decision. As we have said in other debates in this Chamber, the JCVI is far too constrained in its approach. Its analysis of cost-effectiveness focuses solely on the cost to the NHS and takes no account of social costs, the costs of care or welfare benefits, or the costs to employers and to individuals and families affected, in this case, by HPV-related diseases. For example, 50% of people with mouth cancer never return to work, so there really needs to be a wider assessment.
Thirdly, I would like to raise the issue of the implementation of the vaccination programme for men who have sex with men. The JCVI was right to recommend that men who have sex with men should be offered the vaccine via sexual health clinics, but since the recommendation was made in November last year, no announcement has been made about the implementation.
I asked the Public Health Minister about this matter in a written question last month. She replied that a pilot project was beginning this month, which I was pleased to hear. I would be grateful if she could explain what is being planned and the timetable to which that will happen. We already know that the vaccine works, and I have some fears that this could be an attempt to kick it into the long grass. I hope not and that she can offer some reassurances to Members today. Given the level of risk currently being faced by men who have sex with men because of HPV infection, including not least the very high rate of anal cancer in that group, there is surely a strong case for a national roll-out now so that as many men as possible can be vaccinated without delay.
Fourthly, I am concerned that the UK is in danger of being left behind other countries in its approach to HPV vaccination. As we have heard, Australia, Austria, Canada, Israel, Switzerland and the United States are among those now recommending gender-neutral vaccination. That is now under active consideration in the Republic of Ireland and Norway as well.
If I may, I will make a slightly tangential point. Is the Minister aware of the complaint made to the European Medicines Agency by the Nordic Cochrane Centre about the alleged maladministration of the safety review of the HPV vaccination? If side effects have been ignored or people more susceptible to side effects have been given the vaccine unnecessarily, that is a breach of trust and I expect that she will want to look into the matter.
Finally, I have been asked by HPV Action to announce that a letter from 13 eminent scientists and clinicians in the field of public health has been sent to the Secretary of State for Health, calling on him to ask the JCVI to accelerate its assessment of the vaccination of boys. The signatories include the director of the World Health Organisation collaborating centre for oral cancer, the president of the British Association for Sexual Health and HIV and the vice-president of the Royal College of Surgeons. Their views should carry weight in the corridors of Richmond House and I trust that the Secretary of State will listen very carefully to their points.
I also hope that the Minister has listened to the very valid points that hon. Members have made this afternoon. It has been a short but well informed debate, and I am pleased that we have had the chance, thanks to the application made by the hon. Member for Finchley and Golders Green, to be able to debate this issue in such a timely manner.
Thank you, Mr Hollobone, for giving me the opportunity to respond to the debate. I have to say at the outset that we are actually announcing good news in this debate. I accept that Members of this House wish to challenge me on a whole range of areas in which we might go further, but this is the announcement of a major pilot, and I will go on to talk about what we are actually doing. I really think that we should see this as an important step forward and an important part of delivering on LGBT health. I just wanted to say that at the outset, because it was a bit hard to get that from some of the contributions. I will talk a bit about the issue of action, which I have been challenged on.
Let me start, as I should, by congratulating my hon. Friend the Member for Finchley and Golders Green (Mike Freer) not only on securing the debate, but on championing the issue so consistently and passionately. The point has been made that we should be talking about these issues more often—well, he has been talking about them consistently over many years and the persistence of parliamentary prioritisation is showing results. It is really good to see him in his place and I congratulate him on what he has done.
As hon. Members know, and as many people have mentioned, we are advised on all immunisation matters by the Joint Committee on Vaccination and Immunisation. Back in 2008, on the advice of the JCVI, an HPV vaccination programme for girls was introduced across the UK. It is worth reminding the House that the primary objective of that programme was to protect against cervical cancer. The latest data—just to remind people—shows that there are about 2,500 cervical cancer cases a year and up to 900 deaths from that terrible disease. To give some sense of comparison, there are around 300 anal cancer cases among all men in a year. Those are the origins of this programme.
The HPV vaccine has been given to more than 3 million teenage girls across the UK since the programme started, and coverage is actually among the highest in the world. Hon. Members have, again, made reference to international comparisons. I was recently in Geneva for the World Health Assembly, discussing HPV vaccination with a small group of other Health Ministers; our rates are the envy of much of the world, so we must accept that this is an important and world-leading programme. The number of young women with pre-cancerous lesions is falling, here and around the world, and we expect protection against cervical cancer to be long term, eventually saving hundreds of lives each year.
The vaccine has been subject to numerous safety reviews and I have gone over that in some detail in other debates. I will write to the shadow Minister, the hon. Member for Denton and Reddish (Andrew Gwynne), about the specific issues that he raised today, but I want to assure him about the EMA reviews and the WHO reviews, which are all publicly available.
Protecting girls against HPV has wider benefits and will result in fewer HPV infections and less disease in heterosexual males. However, I recognise, as the House has today, that men who have sex with men—MSM—receive little or no benefit from the programme for girls. It was the increasing evidence of the link between HPV and oral, throat, anal and penile cancers, alongside the incidence of genital warts, that led the JCVI to decide to consider the possibility of HPV vaccination for MSM, and to reconsider the case for HPV vaccination of boys. I will come to the issue of boys, which has been raised by several hon. Members, if there is time—I think and hope there will be. However, I want to focus most of my time on MSM, which is the subject of the debate.
I do not intend to include a lot of statistics in my speech, as my hon. Friend the Member for Finchley and Golders Green has set them out and described the context well. However, I want to point out, with regard to the detail behind the figures he quotes, that some of it is not directly relevant to an HPV/MSM programme, as the figures include both male and female cases and cases of cancer unrelated to HPV.
MSM are one of the groups at highest risk of sexually transmitted infections in the UK and the Government are already taking a number of steps to improve their health and wellbeing. Again, I reject any suggestion that this issue is not a priority. It is quite the opposite: there has been a focus in the last year or so on MSM health and on LGBT health—that is something that we had previously not even begun to do. That includes, for example, the first LGBT health conference run by Public Health England and a number of other things that we have done. I am happy to speak to the hon. Member for Glasgow South (Stewart Malcolm McDonald) about that separately on another occasion.
The JCVI’s advice was that a targeted HPV vaccination should be introduced for MSM aged up to 45 who attend genito-urinary medicine and HIV clinics, if procurement of the vaccine and delivery of the programme is possible at a cost-effective price. Everything in that sentence is the JCVI’s advice. It is not just about the vaccine but about the delivery of the programme and the interrelationship between vaccination and attendance at GUM and HIV clinics, which is germane to the way that we are introducing this pilot.
In the JCVI’s formal advice to us, it acknowledged that commissioning and delivering such a programme would be complex and challenging. It made it clear that the Department of Health and Public Health England would need to work together, and with others, to consider the commissioning and delivery routes for the programme. Over the last few months that is exactly what we have been considering with stakeholders, and on several issues. Demand is one such issue, and we have had to consider whether the programme will result in a greater than expected increase in attendance by MSM at GUM clinics, and the impact of that on broader sexual health services.
We have also had to consider administration costs and what is a reasonable and realistic price to pay for administration of this vaccine in GUM and HIV clinics. Stakeholders raised that during the consultation on the original JCVI advice. How do we monitor the success of a three-dose programme when data collected in GUM clinics are anonymised and MSM could go to different GUM clinics for each dose? There are complexities in this programme that are not present in, for example, the school-based HPV programme for girls.
They do exist in other nations. I am making a statement of fact of how the system operates and how people access sexual health clinics. I will come to the devolved Administrations.
We have decided that the best way to resolve these and other issues is to pilot the programme. My hon. Friend the Member for Finchley and Golders Green asked who the vaccine will be available to under the pilot. The JCVI recommended a targeted programme aimed at MSM already attending GUM and HIV clinics, so under the pilot, MSM will be offered the vaccine during their existing appointment if they are at a participating clinic. Public Health England is running the pilot, which should confirm whether such a programme can be delivered at a cost-effective price.
In terms of evaluation, which my hon. Friend also referred to, data collected by clinics will be used to monitor coverage of the HPV vaccine and the proportion of MSM completing the course of vaccine. The impact of the vaccine on HPV-related cancers will obviously take many years to emerge, but the impact on the diagnosis of genital warts will be a useful proxy for that and will be seen much sooner. I expect to be updated regularly on the pilot’s progress. My hon. Friend knows that I have taken a strong personal interest in this programme, and I will of course consider how best to share the information.
I understand that some stakeholders are disappointed that we are not rolling out the programme nationally immediately and some hon. Members here today have noted that Scotland and Wales have committed to implementing the JCVI’s advice in full. However, they have yet to confirm how or when they will start. Scotland has not started yet, and we are happy to share lessons from the pilot as it is no doubt considering how to move forward. Officials from the Department, Public Health England and the devolved Administrations meet regularly on this issue and will continue to do so to share experience and learning. Health is a devolved matter.
I confirm that Northern Ireland officials are on our project board, but they do not yet have a ministerial decision on how they will respond to the JCVI advice on MSM. Obviously there are issues to be raised with that devolved Administration.
The key thing to stress is that this is a large-scale pilot and I was somewhat disappointed by some of the stakeholders’ comments, particularly talk of stalling or of small pilots. This is a large-scale pilot that should eventually reach up to 40,000 MSM— more than 35% of those who attend GUM and HIV clinics annually. It will have a good geographical spread, including areas with the highest MSM populations, as well as rural areas with smaller MSM populations. That is relevant because, although there has been some piloting of vaccination in some clinics, it has been in a very limited geographical area and would not tell us enough about how this would work in practice in a national roll-out. The pilots will have a much broader spread. I can also confirm that the pilot will use the vaccine Gardasil-4 which was successful in the recent HPV procurement exercise.
I am pleased to announce that the pilot in England has already started. Two clinics went live in the pilot yesterday and others will come on board as soon as they are ready, hopefully over the next few months. There has been a positive and enthusiastic response from clinics invited to participate, and I am grateful to all those working on the ground to make this happen.
My hon. Friend asked how long the pilot will run. It will run during 2016-17 and decisions on next steps will be dependent on the progress and outcome of the pilot.
Like other Members, I pay tribute to the leadership on this issue of my hon. Friend the Member for Finchley and Golders Green (Mike Freer) whose work is appreciated across the House.
I have been following the debate very carefully, but it is not clear in my mind how a pilot of MSM will act as some sort of proxy or in any way affect the decision on immunising schoolboys. I do not see how one will inform the other.
I have not claimed that one is dependent on the other. They are two separate recommendations from the JCVI, and I will explain what is happening with boys. There are many questions about extending the HPV vaccine to boys and I understand the wish for it to be available to all adolescents regardless of gender. The JCVI is reconsidering its initial advice on this and modelling is under way to inform its consideration. Public Health England expects to complete the modelling by early 2017 and the JCVI’s advice is expected to follow soon after that, after which we can respond. We will look at that as a priority when we get it.
We have discussed in this Chamber whether we can speed that up. I recognise the frustration that people have expressed and I have talked personally to Public Health England officials who are involved in the modelling work. It would be a huge programme to roll out to adolescent boys and JCVI needs to base its advice on very robust analysis of cost-effectiveness. To do that, a complex model is being built. I have been assured that this is not about additional resource. I have asked whether it is a case of needing additional resource to speed the work up, but I am assured that it is not. It is because of the complexity of the model development and the fact that some of the models are time-consuming to run. Essentially, they are modelling behaviour over time, and to do that, one needs time in order to be able to understand how different aspects of the model interact with one another. I have been told—I have no reason to doubt this, because I have asked experts involved in it—that shortcuts could undermine the validity of the results and could not be supported by the JCVI. The model is building on the cervical screening model to create an integrated model of both HPV screening and vaccination, so that we get an understanding of what the interplay is between vaccination and screening programmes in the prevention, diagnosis and treatment of HPV.
I am happy to write with more detail to hon. Members, but I hope that I have given them a sense of the fact that this is complex work: it is under way and we will look to respond to it as soon as we can. However, these are important decisions that the JCVI will take and, because the Government have always acted on its recommendations, it is important that it gets them right and they are based on the right data. This is a significant programme, but the work is well under way and I will look to report back to the House at every opportunity I can.
The HPV vaccination programme for girls is going very well, and there is now scope for an additional programme to make a difference to the lives of MSM, which this will. The pilot will provide answers to the questions that we still have and the answers that we need for a programme of this nature—I have hinted at some of the delivery complexities. We expect to see benefits from the pilot emerge relatively soon through the reduction in genital warts cases and through treatment in MSM, particularly by targeting higher risk MSM.
I hope that that updates the House as fully as possible at this stage. As I said, I will be happy to update it in the future on how the pilots are going. I want to end by again congratulating my hon. Friend the Member for Finchley and Golders Green on initiating the debate and on his persistent campaigning, and to reassure and commit to the House my determination to improve the health and wellbeing of MSM and to see this pilot as a significant step forward in that task.
First, I would like to put it on the record that this pilot is a success. Hon. Members need only go back and read the previous debates to see how the JCVI had simply set its face against extending HPV vaccinations to boys and MSM. It was implacably opposed, and it took a lot of badgering from Members of this House and from Ministers to get the JCVI to change its terms of reference. It has taken us three years to get to this point, but I welcome the pilot and I welcome the Minister’s explanation of the complexities and why we have to ensure that the pilot is robustly monitored before we can take the extension of the vaccinations any further.
I finish by thanking colleagues for joining the debate today and for the broad cross-party support. We covered all perspectives, including MSM, boys, the minority known as heterosexual men and dental health practitioners—have I missed anyone out? Men are notoriously bad at seeking help with their health, especially sexual health. Vaccination is the way forward. I welcome this positive step forward and thank colleagues for their attendance today.
Question put and agreed to.
That this House has considered HPV vaccinations for men who have sex with men.