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Terminal Illness: Support

Volume 618: debated on Monday 5 December 2016

Motion made, and Question proposed, That this House do now adjourn.—(Andrew Griffiths.)

It is appropriate that this debate, on an issue that will touch millions of people and their families at some point in their lives, should take place today, given that 5 December has been designated International Volunteer Day by the United Nations since 1985. Its purpose is to

“celebrate the power and potential of volunteerism”.

The UN states that IVD is

“an opportunity for volunteers, and volunteer organisations, to raise awareness of, and gain recognition for, the contribution they make to their communities”.

This year’s IVD theme of #GlobalApplause seeks to give volunteers around the world the recognition they deserve, while also “giving a hand” to potential volunteers by encouraging them to give up some of their time for others.

Of course, the link between IVD and this debate is that the vast majority of end-of-life palliative care outside hospital is provided by the charitable sector and only partly funded by the NHS. For that reason, people who donate their money to—and, crucially, their time through volunteering with—end-of-life-care charities play an immeasurably important role in ensuring that the majority of us, and our loved ones, will get the right care and support when we are dying. We will need more volunteers as more people die each year and the demand for high-quality palliative and end-of-life care increases, which is something I will return to later.

I have long been an advocate of the need for good palliative care and support to be available to those who need it, but it is as a result of my recent work locally with the charity Marie Curie that I sought this debate. As I am sure all hon. Members will know, Marie Curie has been providing care and support for people living with terminal illness and their families for the last 65 years. It was able to care for more than 40,000 people across the UK in the last year alone, in large part thanks to the support of more than 10,000 volunteers.

In October, I had the absolute privilege of meeting my constituent Don Lowther, who has terminal cancer, and Faye Morrison, a 21-year-old student from Gateshead who has befriended Don through Marie Curie’s helper service. This pioneering service, which has been available in the Tyne and Wear area since last year, matches trained volunteers with people living with terminal illnesses, providing them and their loved ones with companionship, emotional support and practical help with the aim of ensuring that their quality of life is the best it can be in its final stages.

Since last December, Faye has been making regular visits to see Don in his home, and over that time they have developed a close friendship. Faye is able to ensure that Don, who can no longer drive, can still get out of the house to places such as North Shields for fish and chips. Perhaps most importantly, Faye is a non-family member who Don can talk to and share his concerns with. The impact of Faye’s volunteering on Don’s quality of life, and that of his wife’s, is clear to anyone who meets them, but Faye is the first to say that she has—from giving her time and being part of the helper service—gained as much as Don has.

The Marie Curie helper service also helps to co-ordinate local services, enabling people affected by a terminal illness and their families to understand what is happening, and ensuring that they are supported throughout this challenging journey. In the case of Faye and Don, this has involved signposting Don to the services provided by Marie Curie’s Newcastle hospice, which I also heard more about from Lead Nurse Michelle Scott when I recently visited this facility, which is located in the west end of the city in the constituency of my hon. Friend the Member for Newcastle upon Tyne Central (Chi Onwurah).

I saw for myself the newly opened complementary therapy and relaxation area, with its Alnwick garden theme, and the different types of accommodation available to patients and their carers, including for respite care. I learned more about the wide range of medical and nursing care, physiotherapy and occupational therapy available, and about the practical, psychological, emotional and spiritual support provided by the highly experienced hospice team. What I took away most from my visit, however, was the hospice’s absolute dedication to celebrating life and to ensuring that those using its services—whether terminally ill parents with young children or those, such as my constituent Don, who use their day services and activities—receive the best possible support and enjoy the best possible quality of life as their time comes to an end. Don told me he was concerned that once he stepped inside the hospice, he would never leave, but that is just not the case. Thanks to the helper service and Faye, he was signposted to the care and support provided at all stages of terminal illness. That support is not negative about death and dying, but treats them as a part of life. Of course, not all Marie Curie’s nursing care takes place in a hospice setting, because the charity’s nurses also provide overnight care in people’s own homes.

Marie Curie is certainly not the only charitable organisation providing end-of-life care in the Newcastle area. Other vital organisations include Macmillan Cancer Support, with whom I recently had the pleasure of enjoying coffee and cake at the Lemington Centre and St Cuthbert’s Primary School in Walbottle, as well as St Oswald’s hospice in Gosforth, which has worked to

“make the most of time and improve quality of life for everyone in the North East living with an incurable condition, and their families”

for the past 30 years.

Despite the incredible efforts of these charities and the NHS for people who are dying, the risk that they will not get the care that they need to manage their symptoms and to maintain their quality of life until the end of their life is worryingly high. Research undertaken last year by the London School of Economics on behalf of Marie Curie found that a deeply concerning 92,000 people who need palliative care in England each year are not receiving it. That means that one in four people are not getting the good end-of-life care—care for managing pain and other symptoms, alongside psychological, social and spiritual support—that they clearly need.

The people who miss out most frequently on this support are those with a terminal illness other than cancer, such as heart failure or chronic pulmonary disease. Indeed, written evidence submitted by the National Council for Palliative Care to the Health Committee’s inquiry into end-of-life care, which was published last year, drew attention to the fact that people with cancer access over 75% of specialist palliative care services, although cancer causes around 30% of all deaths. Concerns about the availability of palliative care for people with non-cancer diagnoses have been raised with me by a constituent living with idiopathic pulmonary fibrosis.

Others who are likely to miss out are people aged over 85, including those with dementia, despite the fact that dementia is now identified as the leading cause of death in England and Wales. Written evidence submitted by Age UK to the same Health Committee inquiry highlighted that while one third of all deaths are of people aged over 85, only around 15% of the people who gain access to specialist palliative care fall into that age group. Worrying inequalities already exist regarding the quality of end-of-life support available, depending on a person’s illness, age and, as ever, where they happen to live.

A growing concern is that the existing system, which is already unable to provide care for all who need it, is coming under ever greater pressure as our social care services fast approach breaking point. Marie Curie states that in its own services, it is seeing people waiting weeks in hospitals and hospices for social care packages to be put in place so that they can get home or into a care home to spend their final days in the place of their choosing. Very sadly, that situation means that it is not uncommon for people to die while waiting. This does, of course, have a terrible human impact, not only on the person dying, but on their families, making what is already a hugely traumatic situation immeasurably worse. This state of affairs is also totally cost-inefficient for our NHS, which could be using those hospital beds for people who need acute care.

The situation I have outlined will come as no surprise to any hon. Member, given that adult social care budgets have been cut by some £4.6 billion, or 31% in real terms, since 2011. They continue to fall in the face of an increasingly elderly population and therefore increasing demand. I have no doubt that the Minister will want to champion the social care council tax precept that the Government have allowed local authorities to raise for this purpose, but I gently remind him that that is anticipated to raise £1.4 million a year in Newcastle, yet the city council faces a social care shortfall of some £15 million.

I thank my hon. Friend for bringing this issue to the House’s attention. She is making a powerful speech. Let me also pay tribute to the hospices in my constituency— St Peter’s hospice, and the hospice that cared for my father and my mother-in-law in their dying days.

Does my hon. Friend share my concern about the fact that the Government have not made adequate progress in meeting the recommendations of last year’s inquiry into end-of-life care by the Health Committee? Will she join me in asking the Minister to explore the question of how well the five principles of end-of-life care are being followed across the country?

I think that we would all like the Minister to try to explain that key point. Marie Curie’s main concern, which I know is shared throughout the sector, is that the provision of palliative care is simply not growing to meet the demand for services. That is clearly extremely troubling, given that one in four people are already unable to access the end-of-life care and support that they need. Like the rest of our health and social care services, the palliative and end-of-life care sector—including those who provide such care in hospitals and care homes—is facing a demographic crisis. More people are dying each year, at an older age, and with more long-term and often complex conditions. Indeed, the number of deaths per year will rise by 100,000 over the next five years.

Given those facts, when the Government announced in July this year in their

“response to the independent review of choice in end of life care”

that they would establish a board within NHS England to implement the recommendations of the review, it came as a grave disappointment to all involved in the sector that they had chosen to reject the review’s key recommendation that £130 million of funding should be made available at the next spending review to

“invest in social care and NHS-commissioned services, to deliver a national choice offer in end of life care.”

Along with my hon. Friend the Member for Bristol West (Thangam Debbonaire) and, I am sure, others who are listening to the debate, I ask the Minister to state clearly how, without the additional funding that was recommended by the independent review, the Government will ensure that palliative and social care services grow to meet existing and increased demand in the coming years.

Does my hon. Friend agree that the autumn statement provided an ideal opportunity for the Government to produce sums to meet the ever-increasing demand for social and end-of-life care, and that that opportunity was missed?

That is a good point. Everyone was disappointed not to hear a commitment from the Government. I think we would all like to know how, without those additional funds, the Government will end the distressing and unacceptable circumstances in which 92,000 people—one in four—are missing out each year on the care and support that they and their families need at the end of their lives, and how on earth the Government will prevent that deeply concerning figure from growing ever bigger.

I am acutely conscious that there are many more issues that I could have raised in a debate about such an important issue. They include the provision of end-of-life care for children and young people with life-shortening conditions, which, according to the charity Together for Short Lives, is often

“inappropriately coupled with the palliative care needs of adults, when their needs can be much more complex”.

A key concern for that charity, and for all of us, is that the number of children and young people affected by life-shortening conditions is not properly monitored, which makes it impossible for the Government, the NHS and local authorities to plan properly and budget for their needs.

Another serious issue relates to the fact that our welfare system can let down too many people with debilitating and terminal conditions such as motor neurone disease. While welcoming the recent and long overdue announcement that people with severe lifetime conditions will no longer have to undergo reassessments for employment and support allowance, the Motor Neurone Disease Association and many other charities remain extremely concerned about the Government’s determination to devolve attendance allowance to local authorities, and the impact that that could have on the vital support that people with extremely challenging conditions currently receive.

I have raised a number of issues with the Minister this evening about the additional funds for end-of-life care that the NHS, charities and their much-needed volunteers clearly need. When people do not have the palliative care that they need, there are real and damaging consequences. They may die in pain or discomfort, which causes distress not just to them, but to their families, friends and loved ones. That will be avoidable if the Government can make a commitment to those people. I look forward to hearing the Minister’s response to the important concerns that I have outlined this evening.

I congratulate the hon. Member for Newcastle upon Tyne North (Catherine McKinnell) on bringing this debate to the House. This is an important subject and it is good that we have the chance to talk about it.

It is also good, as the hon. Lady said, that we are debating it on the UN’s International Volunteer Day. She reminded the House, if it needed reminding, how much of the palliative care burden is taken up by volunteers. We should all reflect on the fact that there are 6 million informal carers in this country. Without those people, things would be much more difficult. We have a carers strategy coming out in the next few months, which I will discuss during my speech.

The hon. Lady talked about her hospice, the work that the Marie Curie charity does there and the helper service it has pioneered in Newcastle. I am happy to acknowledge the fantastic work that hospices do. I have one in my constituency, St Rocco’s, which also does brilliant work. The hon. Lady used a good phrase: we should recognise that at their best hospices celebrate life. That is important.

The Government’s position is that high-quality, end-of-life care, reflecting individual needs, choices and preferences, should be available to everyone. That is our objective; that is what we are working to achieve. Much is being done, despite perhaps the tone of the hon. Lady’s remarks. However, of course there is more to do: more can always be done. This is not something that will ever be finished, but I want to set the context in which we are working.

The Minister has rightly acknowledged, as has the hon. Member for Newcastle upon Tyne North (Catherine McKinnell), the importance of charities and the work that they do. In his response to the points that she has made, will he say what the Government intend to do for young carers who look after those who are at the end of life? I am aware of the pressure on those young carers given their age, and their ability to cope with the life-changing event that will happen to them and their family very shortly. We need something for them, Minister. Can I make a plea for them?

I thank the hon. Gentleman for that intervention. He is right. There are about a quarter of a million informal carers under the age of 25, half of whom are under the 16-to-18 age range. There are issues for education and future employment. The carers strategy is addressing that and I will have more to say about that.

On the context, 480,000 people in England die every year. Thirty-six per cent. of those are over 85 and about 350,000 of those deaths are expected, in the sense that they are not a surprise. Roughly half that number get some specialist palliative care as part of the pathway. The hon. Lady talked about that not being enough, and I will come back to that. Forty-seven per cent. die in hospital, which is an improvement: 57% of people were dying in hospital 10 years ago. There is an emphasis—the charities, particularly Macmillan, are offering a lead on this—on ensuring that fewer people die in hospital.

In terms of authoritative evidence of how that is working—the hon. Lady mentioned some of the points made by Marie Curie—the Office for National Statistics conducts a yearly survey called “Bereaved VOICES”, which looks at how carers and bereaved people evaluate the last three months of the end-of-life care for their loved ones. About 75% of those services are regarded as good, excellent or outstanding. Ten per cent. are regarded as poor. Ten per cent. is 48,000 deaths a year, and that is still too high. Nevertheless, 75% of those services are regarded as good, excellent or outstanding. The highest proportion of those services are in hospices. Care homes rated about the same as hospices, with hospitals doing less well. The figures are patchy, however, and that is generally linked to deprivation. They are not as good in areas of relatively high deprivation as they are in other areas. That is partly because hospice availability is somewhat skewed by the fact that the charities that run them tend to operate in more affluent areas.

The hon. Lady mentioned the need for spiritual and emotional attention at the end of life, and I can tell her that 70% of those who responded to the survey regarded their loved ones as having received good or outstanding spiritual or emotional care. That reflects well on those in the voluntary sector and the NHS who provide that care, and we should acknowledge that.

I do not wish to sound complacent, because I acknowledge that things could and should be better. I have had this job for four or five months, and there are very few of the areas I cover in which the UK could be said to be the best in the world. Let us take cancer outturns as an example. We know that our one-year survival rates for most types of cancer are worse than those of most other countries in Europe. Last year, however, the Economist Intelligence Unit compiled a quality of death index, which evaluated 50 or 60 countries in the world against a number of criteria, and the UK came top in end-of-life care. As I have said, I do not know the situation across all the areas for which I am responsible, but we should acknowledge this finding. To put it into context, Germany came seventh, France came 10th and Sweden came 16th. That has been achieved through the work of people in charities and in the NHS, but we must also acknowledge that things could be better.

The hon. Lady spoke about social care funding—although that is a slightly different area—and about delayed transfers of care and all that results from them. I have acknowledged many times in the Chamber that social care funding is under pressure and that that can cause delayed transfers of care, or bed-blocking, if we want to use that term. However, in terms of adult social care, if we compare the top 10% of councils with the bottom 10%, we see that there is a factor of 30 times in the difference between their performance in delayed transfers of care. That is not related to budgets; it is related to best practice, leadership and all that goes with that. We are sometimes quick to say that money is always the issue, but although that is of course part of it, it is not the only issue. It is important to understand that other factors are involved. Among other areas that need to be improved, we need to continue our drive to ensure that more people do not receive their end-of-life care in hospitals, where they generally do not wish to be. We should also acknowledge that there can be non-uniform commissioning among clinical commissioning groups, and we can do better in that regard as well.

The hon. Lady talked about the choice review, which was produced in 2014 by the National Council for Palliative Care, helped by Macmillan and Marie Curie. It contained some 62 recommendations. The Government’s response came out in July—it was one of the last acts of my predecessor—in the form of a five-point charter. In it, we accepted that we would have personalised care plans in place by 2020, that everyone was entitled to an honest discussion about their end-of-life care and to support in making informed choices, that family and carers would be involved in those choices, and that all people going through an end-of-life process would have an identified contact at all times.

Those elements will need to be implemented right across NHS processes, technologies and pathways, and we have set up the end-of-life care board under Bruce Keogh, the chief medical officer, to oversee that. All arm’s length bodies will be represented on the board. This has not yet been published—it is my role to ensure that it is—but the requirement now is to turn the commitments in the review response into tangible milestones, deliverables and responsibilities. I recently met several members of the End of Life Care Coalition and undertook to have a transparent process so that between 2016 and 2020 we know what we are implementing and when and how that is being done. It is important that that happens. We are extremely committed to it—it is a Government priority. We could do things better as a country, but we do pretty well and we need to do this to make things even better.

I thank the Minister for his responses to my hon. Friend the Member for Newcastle upon Tyne North (Catherine McKinnell). On that point about the plan for between 2016 and 2020, given that the last days of someone’s life are etched into the memories of those who are left behind—I can remember every single moment of the day 23 years ago yesterday when I lost my father—will the Minister commit to report back to the House at various points over that four-year period, or will he report on progress in other ways?

That is a very reasonable request. That intervention was not quite what I was expecting, but it is entirely reasonable and I will commit to do that either in debates such as this or at Question Time, or whenever. I am unsure whether a statement would be appropriate, but it is a reasonable thing to request of a Minister and I am happy to do it. I will at least write to the hon. Lady on the process, because I am determined that the programme of work will be transparent and meaningful with clear deliverables that achieve what we need to achieve.

In addition to implementing the choice review, other ongoing and day-to-day work needs to happen. The Liverpool care pathway was pretty much supplanted last year by the five priorities for dying people that were mentioned in an earlier intervention. We are trying to embed those things within the structure of the NHS. They exist in training programmes, in Health Education England, and in the choices that people make when working in this sector. It is not rocket science; the priorities relate to sensitive communication, the need for individual plans covering food and drink, and also spiritual things for those who need or want them. Fundamental to all this—it should not really need saying —is that the dying person is involved in all aspects.

We put end-of-life care as a priority in the NHS mandate. Clinical commissioning groups must commission end-of-life and bereavement care, and there are NICE guidelines for that. That does not mean that it is not patchy, as the hon. Member for Newcastle upon Tyne North said, but those are the requirements. When the CQC evaluates care homes, hospitals and hospices, it specifically looks at end-of-life care, and those that want high rankings will need to address such things and work effectively.

I talked about milestones. One important initiative that I expect to come out of the choice review is electronic palliative care records, through which care plans are accessible to the many different workers who need access. I recently saw that happen in London, where the system is called “Coordinate My Care”. The idea is that if a person is in need of an ambulance or paramedic, the paramedic will have access to the care record on the way to the call-out. The record might explain that the person may not want to go to hospital, depending on the issue, and such decisions will become embedded in the process, which is important and good. I want that technology to be rolled out as quickly as possible.

I was concerned at the beginning of the Minister’s remarks that he sounded complacent about this issue, but he does certainly seem committed to making this review work over the next few years. Will he just acknowledge that if the NHS is not able to get the support from the social care sector and is not able to utilise the funding required, it will fail in its efforts? It will fail unless the funding is there within the community sector and the NHS itself in order to achieve what the Minister sets out as a very important strategy going forward.

I am getting towards the end of my speaking time, so I will finish by answering that as best I can. Of course money matters, and every process works better if there is plenty of money for it. The facts of the matter are that both adult social care and the NHS are under cost pressures. To be honest, that will always be the case in every system, and I just gently say to the hon. Lady that she may be surprised to know that we spend about a third more on adult social care, which is a particular responsibility of mine, than either France or Germany.

The Minister acknowledged that the challenge in addressing this issue properly is often the patchwork nature of services in our country and the postcode lottery. He also acknowledged that some of the areas that fare the worst are the most deprived, and they are also the areas facing the biggest cost pressures in terms of social care funding. Will he acknowledge that something needs to be done to ensure that that does not undermine these efforts?

This is not the autumn statement, and I cannot make commitments on funding other than to say that many Members on both sides of this Chamber would like to see, when the time is right, more funding for our vital public services. I again just gently make the point to the hon. Lady that we spend considerably more on adult social care than countries such as France and Germany, those it would be reasonable to compare us with, and it is not just about money in terms of the delayed transfers of care performance of different councils—it is hugely different.

Let us agree that what really is important is that over the next few years we implement the choice review: what is important is the Government’s commitment to implement that and our clear intent, as signalled by Bruce Keogh leading the implementation board, that we will be held accountable for it. I will be held accountable for it, and I will report back to the House in due course on that.

I thank the hon. Lady for raising this important issue.

Question put and agreed to.

House adjourned.