Motion made, and Question proposed, That the sitting be now adjourned.—(Claire Perry.)
May I take the usual step of thanking you for chairing this sitting, Mr Havard? I know that that is something of a ritual, but on this occasion I am sincere. You may be aware that I was originally on the list to chair this sitting, so you have saved me the embarrassment of having to congratulate myself.
I begin with some acknowledgements. I am particularly grateful to the staff and patients at the diabetes centre at Aintree university hospital and the specialist diabetes services team at St Helens and Knowsley. I also thank the young people with diabetes who took the time to speak to me; the Juvenile Diabetes Research Foundation; Diabetes UK; Diabetics with Eating Disorders, known as DWED; Circle D; and Dr Mike Merriman in my constituency.
I sought this debate on behalf of children with type 1 diabetes in the UK, but I should point out that the condition does not affect children only. There are 400,000 people of all ages with type 1 diabetes in the UK and, currently, 35,000 children and young people have diabetes, 93% of whom have type 1 diabetes. It is important that we understand the difference between type 1 and type 2 diabetes, because, all too often, the two conditions are dealt with in the media as though they were one and the same thing. For example, a prominent businessman, Jim Ratcliffe, was recently quoted in The Sunday Times as saying:
“Childhood diabetes didn’t exist when I was growing up. It was an old man’s disease. But now lots of kids have diabetes. They are eating so much sugar that by the time they are 16, the pancreas is giving up the ghost”.
That is quite simply a misunderstanding of type 1 or childhood diabetes. Type 1 diabetes has absolutely no connection to dietary habits or a lack of exercise; it is an auto-immune condition and, as such, cannot be prevented. All people who suffer from type 1 diabetes have to deal with the consequences, which, for the most part, are inescapable and unremitting. A daily battle must be conducted to maintain blood glucose level within the medically safe range, balancing food and insulin intake, while taking into account physical activity, stress levels and temperature.
Young diabetics can take up to eight daily insulin injections and often have to perform invasive blood testing even more frequently. Yet according to research by JDRF, even those who stick rigidly to the prescribed regime will fall outside the medically safe range on more than three occasions in any 24-hour period.
Not staying within safe blood glucose levels has consequences. In the short term, high levels, which are known as hyperglycaemia, at the very least cause fatigue, and continued high levels can lead to diabetic ketoacidosis—known as DKA—which is a potentially fatal condition. Longer-term consequences include heart disease, kidney failure, neuropathy, blindness and amputations. Low blood glucose levels, known as hypoglycaemia, cause dizziness, incoherence and potential loss of consciousness and are often followed by severe headaches.
Blood glucose levels can alter dramatically, and apparently inexplicably, at any time of the day or night and require immediate attention. According to research undertaken by the National Paediatric Diabetes Audit, 85% of children and young people aged over 12 with diabetes have blood glucose levels higher than the recommended targets. That is perhaps unsurprising, because only 6% of those in that sample received the recommended care, services and support to which they were entitled.
Some children are diagnosed with diabetes in infancy, or when they are too young to take responsibility for managing their condition. Inevitably, the responsibility must be taken by family members, most commonly parents. For many families, having a child with type 1 diabetes affects them all and many adjustments have to be made to support that young person. As one young type 1 diabetes sufferer told me recently, until she was 18, she was almost entirely dependent on her mother monitoring her blood glucose and ensuring that she injected the right amount of insulin at the right time.
In advance of this debate, people contacted me about difficulties they have experienced with the Department for Work and Pensions and the disability living allowance system. Some of the problems raised arise from the fact that the DWP does not fully understand the complex needs of young people with type 1 diabetes. I would be grateful if the Minister raised that with the relevant Minister at the DWP to see whether that could be satisfactorily resolved.
Two young type 1 diabetics, Lauren and Nicole, both told me that they had experienced bullying at school as a result of their condition. Nicole, who is 16, states that she
“frequently experienced bullying because of my diabetes and because everyone thought it was because I was fat”.
Several young people have commented on the embarrassment that they feel at having to inject insulin in public. In some cases, they have been referred to as drug addicts, or been asked not to inject or test their blood, as others find it offensive.
I made two visits recently to the diabetes centre at Aintree university hospital and the specialist diabetes services team at St Helens and Knowsley Teaching Hospitals NHS Trust, both of which provide outstanding services for type 1 diabetics. They have a different range of specialisms to call on beyond the use of nurse specialists and diabetologists. For example, they can refer to psychological or, where appropriate, psychiatric services.
I pay tribute to the work that my right hon. Friend has done in this area. Before he moves off the stigma issue, does he agree that we need to think about how we can raise awareness among young people? Does he also agree that social media organisations need to be responsible but not afraid about stigma arising from the use of needles and so on? We need to talk frankly and honestly about type 1 diabetes and its consequences for young people, so that those with the condition do not feel in any sense as though they must hide away.
I am grateful to my hon. Friend for that intervention. She is quite right to say that social media has an important role to play. I will say more about that shortly, but one example was drawn to my attention where Facebook removed an image of someone injecting on the grounds that that was offensive. That is offensive, but not in the way that it thought. I will say something more positive about how social media can be used in a few moments, but it is important that more people understand exactly what we are saying.
I was talking about psychiatric services. On a national scale, psychological support is not necessarily integrated into the diabetic service, and the practitioners are therefore unlikely to have sufficient understanding of diabetes. Psychiatric services are even more difficult to access, and I am told that patients can wait up to two years for an appointment. In some cases, that is a matter of life and death. The diabetes attitudes, wishes and needs survey, known as DAWN, published in Diabetic Medicine, interviewed 15,000 people in 17 countries and found that people with diabetes are more likely to suffer from depression. Those services are therefore very important.
I want to say a little about young people with type 1 diabetes who also have an eating disorder. According to the charity Diabetics with Eating Disorders, as many as 40% of young women between the ages of 15 and 30 admit taking insulin as a means of achieving weight reduction. The phenomenon sometimes referred to—although it is not a medical term—as diabulimia is increasing. Rapid weight loss is achieved when diabetes is left untreated, but the consequences can be catastrophic. DKA, a potentially fatal condition where the body turns on itself for energy, rapidly develops. Even if it does not prove fatal, it can result in serious health complications.
Diabulimia is difficult to diagnose and there are no current NHS guidelines on how to deal with the issue. Young people can be treated for their diabetes and for an eating disorder, but there is no integrated thinking to cover the two elements of care. Yet the treatment for a diabetic with an eating disorder is quite different from that for a person without diabetes. DWED has provided an example of a young woman who was admitted to a unit dealing with eating disorders, where no insulin needles were available and where the patient was fed via a tube without any insulin being administered. That exacerbated the problem that the unit was supposed to be treating.
There is a clear need for a more integrated service, with mental health professionals who have a knowledge of diabetes. A further and tragic example from DWED illustrates the point well. Jane, the mother of Rhys, a young man who was suffering from diabulimia, repeatedly requested that he be assessed psychiatrically. She did so every time her son was admitted to A and E suffering acute DKA, which happened on several occasions. She repeatedly raised it with the diabetes clinic and with the community mental health team. Unfortunately, her pleas were ignored, despite her saying that she was terrified that she would find her son “dead in bed”, and her son lost his battle with diabulimia on 25 July 2009. The ombudsman concluded that
“had a more coordinated and holistic care plan been put place it might have resulted in a different outcome.”
Jane has been fighting for recognition since 2009, and says that there was never an investigation into why her son died, which she attributed to his mental health problems. That was another complaint upheld by the ombudsman.
There is a serious need for a much more integrated service, so that all aspects of the treatment of type 1 diabetes can be dealt with together. There must be greater investment to ensure that emotional and psychological support becomes an accepted and routine part of management for all children with diabetes and that appropriate services are in place. Incorporating psychological services with routine clinic visits would avoid much of the stigma associated with treatment for mental health problems. In addition to regular clinic attendances, young diabetics require separate appointments for special eye checks and chiropody. Those should be available under one roof in an effort to improve the care achieved.
I am grateful that the urgent need to improve access to and integration of services is now being recognised with the introduction of the best practice tariff for paediatric diabetes. From April this year, the standards included in the best practice tariff are mandatory for all paediatric diabetes units, and the tariff has been extended to cover in-patient care, which will hopefully incentivise lower admission rates. However, I would argue that the best practice tariff should be extended to include all young patients up to the age of 25. Each young person is different, and transition from child to adult services must happen at a stage and time appropriate to them. The current cut-off for the tariff is 19, but the available data suggest that that is too soon, because 25% of all hospital admissions for diabetic ketoacidosis involve young people aged 16 to 25; the annual cost is £5.3 million. Extending the best practice tariff to 25 would provide an opportunity for better alignment of the service with the needs of young people.
My right hon. Friend is making a powerful speech on an issue close to his heart. I hope that hon. Members will know his family circumstances. He is raising an important matter; there is a need to inform a much wider audience, not only so that everyone will be more aware of problems and issues to do with type 1 diabetes, but to inform people with the condition who believe they can manipulate their insulin intake for one reason or another. Does he believe that more should be done to highlight the problems that can arise when people do not stick rigidly to their insulin intake regime?
My hon. Friend makes his point well, in support of my argument, and I am grateful.
One in four children are diagnosed with type 1 diabetes when they are already in DKA, and the rate is even higher for children under the age of five. A number of clinicians I have met recently have advocated the removal of barriers between primary care and specialist teams, arguing that primary and secondary care teams should be sharing their expertise with one another in an attempt to close the skills and knowledge gap. In Merseyside, for example, specialist nurses have been working as mentors in practices to support primary care development and tackle deficits of knowledge, skills and confidence. Education is a major component of the improvement of care and outcomes. In many European countries, diabetes-specific training is mandatory for health care professionals who provide paediatric diabetes care. That is not the case in the UK. Although there has been a huge amount of work in the past five years to improve education for health care professionals, investment is needed to ensure that all paediatric units can access nationally standardised and accredited training.
I congratulate the right hon. Gentleman on securing the debate. There are young teachers in schools in my constituency who are reluctant to inject children who are insulin-dependent. Surely, something more in the way of education and awareness needs to be done about that. Parents cannot come in to do that, so it needs to be done by someone such as a teacher or a nurse in school.
There are a number of problems to do with primary care. Sometimes, the lack of knowledge is appalling. The fact that on many occasions young people can go to a GP with what turn out to be classic diabetes symptoms without being diagnosed is a serious problem and needs to be addressed. The hon. Gentleman is right that education programmes for health professionals are important. It is equally important for people working in GP practices or other primary health care settings to be aware of the phenomenon that they are dealing with; otherwise they will make wrong decisions and give wrong advice, which in some cases can make things even worse.
We must prioritise access to education for self-management for children and young people. I am optimistic about the introduction under the best practice tariff of the requirement that children and young people will have access to education. There is, however, huge concern about the variety and standard of education. Considerable work is needed to ensure that what is offered is nationally standardised and tailored to meet the needs of children and young people, as well as their families. Unfortunately, there is no single best practice model throughout the NHS, although I am aware that the Government’s national clinical director for obesity and diabetes, Dr Jonathan Valabhji, understands that and is working with diabetes groups to find the best way forward. Today, I simply ask the Minister to take an active interest in Dr Valabhji’s work and to provide the support necessary to make progress.
I am told by those involved in diabetes that much research is focused on type 2 diabetes and that the principal source of funding is often pharmaceutical companies. That is of course welcome, but whereas with type 2 diabetes pharmaceutical companies can see long-term benefit in new and existing products, such a link is less clear with research into type 1 diabetes. There are some counter-examples, but it is an issue that needs addressing, so it is crucial for central Government to invest in type 1 diabetes research. Despite the UK having the fifth highest incidence of type 1 in the world, our contribution to type 1 research per capita is currently less than half that spent in the United States or Australia.
A more positive story can also be told, however. Many young people now use insulin pumps. Last week, I met 23-year-old Alex, who told me how her pump had changed her life: “It’s a little like you don’t have to think about it anymore. I don’t have to get my needles out; I don’t have to offend anyone. I can have a biscuit, go to the gym. I can change it to temporary settings and go out with friends. I can do things now. Before I used to say, ‘I can’t be bothered having to plan around it.’ It only takes two seconds; it’s hidden.”
One of the research projects that holds the most hope for people with type 1 diabetes is the work to develop an artificial pancreas, which is known as an AP. The AP is in essence a combination of an insulin pump and a continuous glucose monitor. The clever part is that the two devices talk to each other via a complex algorithm. The monitor automatically checks blood glucose levels and then, in effect, tells the pump exactly the right amount of insulin needed by the body. Such technology holds great promise to help people to safely achieve the recommended blood glucose control, as well as alleviating an enormous amount of the burden associated with self-management. Recent trials of the device have been encouraging.
A consortium led by the type 1 diabetes charity JDRF is leading the development of the AP. JDRF’s artificial pancreas consortium encompasses 22 institutions worldwide participating in the study. It is a great credit to the UK’s life sciences sector that we can count Cambridge, Leeds and University college London among the contributors, alongside Harvard, Yale and Stanford. Another artificial pancreas, developed by Professor Joan Taylor of De Montfort university, could have its first human trials by 2016. It has a reservoir of insulin kept in place by a special gel barrier, which liquefies when glucose levels rise, releasing insulin to the liver, thus mimicking a normal pancreas. As the insulin lowers the glucose levels, the gel reacts by hardening again and preserving the reservoir. Such research is an important step towards developing a portable, usable and safe AP system.
To return to the point made by my hon. Friend the Member for Wirral South (Alison McGovern), social media are increasingly used to help and support young diabetics. Many young people with diabetes experience a sense of isolation and have no contact with others who share their condition. A good example of young diabetics helping themselves is the 18-to-30 support group Circle-D, which was founded by the inspirational Shelley Bennett and is celebrating its sixth birthday today—congratulations to Circle D. They have regular social activities and a rant room where people can have a rant and share experiences before going to the pub. Their motto is “you are not alone” and they now have a massive network of diabetics of all ages offering support online, via Facebook and in person. Another group, targeted at teenagers and young adults, is Hedgie Pricks. Information about both organisations can be found online, and I would certainly encourage young diabetics to get involved and to share their experiences with others in a similar position.
The debate today is an opportunity to praise the steps that are being taken to improve paediatric diabetes care and to pinpoint where we need to do more. With that in mind, I reiterate my support and optimism for the best practice tariff. Given that the tariff was only introduced recently, I hope that the Minister agrees that it would be sensible to return to the subject of type 1 diabetes in young people once we have had a chance to see how well that is working.
In the immediate future, however, the Government can and must do more. I would welcome the Minister commenting on extending the best practice tariff to 25, ensuring that children and young people with type 1 diabetes get the psychological support that they need and ensuring that educational standards for health care professionals and for children and young people with diabetes and their families are nationally standardised and accredited. I will be grateful to learn of any steps that the Minister can take to increase our contribution to type 1 research.
I have one final point to make. I feel strongly that the issue of type 1 diabetes needs a champion within the Government. I hope that the Minister will rise to the challenge and provide the political leadership that is so needed if we are to tackle this important matter.
Six people wish to speak. I am looking at the time for planning purposes. We have just over an hour left, with 10 minutes each for the Front Benchers. I am trying to gauge the time, but you can do the mathematics for yourself. To be fair to one another, if you could plan for about seven minutes or something of that nature, that would be helpful.
From our joint experience on the Intelligence and Security Committee, I am well aware that the right hon. Member for Knowsley (Mr Howarth) has a robustness at times, and perhaps he would have liked to be judge and jury in today’s debate. I congratulate him, above all, on bringing the subject to the House. I am well aware that, as alluded to earlier, these are issues that are very close to his heart, and he speaks with immense knowledge and passion about this particular affliction.
I wish to contribute a few words to the debate, because the subject has been raised a number of times with me at constituency level in recent months. As we have heard, type 1 diabetes is a chronic and life-threatening auto-immune condition, which is caused when the body mistakenly attacks the insulin-producing beta cells in the pancreas. It is a separate and distinct condition from the more common and perhaps more widely known type 2 diabetes.
Estimates put the number of people in the UK with type 1 diabetes at as high as 400,000, which means that each and every MP in the UK has, on average, some 500 constituents suffering with type 1. As recently as 2010-11, it was thought that the direct and indirect cost of type 1 diabetes alone to the UK was around £1.9 billion; judging by the growing rate of increase, it is feared that by 2036 that figure could rise to some £4.2 billion each and every year.
A few months ago, a mother in my constituency wrote to me explaining exactly what life was like, day by day, hour by hour, caring for her young child with type 1 diabetes. She described how her experience reminds her daily of the urgency and importance of finding a cure. My old friend and colleague on Kensington and Chelsea council, Rupert Cecil, has a delightful 10-year-old daughter, whom I have got to know throughout her life; she has similarly suffered from type 1 since infancy and requires constant monitoring. Rupert and his wife, Juliet, have tirelessly raised funds for and awareness of the condition since Polly was diagnosed with this life-threatening and incurable illness at the age of two and a half.
From the outside, Polly is just like any other 10-year-old, but a close look may reveal a wire poking out from under her school uniform and attached to something resembling a money belt. This is the insulin pump that Polly relies on from day to day. It is the artificial pancreas to which the right hon. Gentleman referred. She is attached to it each and every day and will be for the rest of her life. Without it, she could not survive longer than 24 hours. In addition to her insulin pump, her parents must test her blood by pricking her finger at least five times a day. They often have to wake her in the middle of the night to give her glucose if her sugar levels have dropped dangerously, or some insulin if they are running high. That is the daily tightrope that is walked by each and every parent of a young child with type 1 diabetes.
I understand what the hon. Gentleman is saying about his friend’s young child, but many young people, particularly in areas of social deprivation, cannot access insulin pumps unless they buy them, and I believe that they cost around £1,500 or £2,000. If people do not have the money, many of them suffer greatly.
That is a fair comment and I hope the Minister will comment on it.
I want to touch on an imaginative and innovative scheme in my constituency at St Mary’s hospital, Paddington, which is part of the Imperial College Healthcare NHS Trust and which I visited recently. I hope that it will not only raise awareness, but reduce the cost to which the hon. Gentleman referred. During my recent visit, I discussed the everyday realities for diabetes sufferers.
The International Centre for Circulatory Health is based on the St Mary’s hospital campus of the Imperial College Healthcare NHS Trust, just behind Paddington station. Imperial college has published some of the lowest amputation rates in the world from its diabetic foot service, led by Dr Jonathan Valabhji. It has a large diabetes technology centre that is closely linked with a research programme developing closed-loop insulin delivery for type 1 diabetics and novel continuous glucose sensor devices. Its clinical technology research is led by Dr Nick Oliver, who talked me through the pioneering work he is doing to develop the artificial pancreas system for everyone with type 1 diabetes. I hope that that will also reduce the costs to which reference was made earlier.
That ground-breaking research aims to offer the next best thing to a cure for type 1 diabetes patients in the future. I saw for myself how a small, discreet device, connected to the blood stream via micro-needles, can monitor glucose levels. When paired with insulin and glucagon pumps, the artificial pancreas should be able to give diabetics an approximate response to blood sugar levels close to what a body would normally produce. With consistent levels of insulin delivered, sufferers are liberated from the constant monitoring and worrying that comes with the daily management of the disease. The St Mary’s site is just one research centre forming part of a global effort that could help to change the lives of many of the 400,000 people who are living with type 1 diabetes, and save the NHS a significant proportion of the money that is currently spent on treatment.
The artificial pancreas system has three components. Two, the insulin pump and continuous glucose monitor, are available. However people with type 1 diabetes face difficulties trying to access insulin pumps despite a supportive technology appraisal from the National Institute for Health and Care Excellence. Indeed the national uptake of insulin pump therapy stands at just under half the NICE benchmark, set as long ago as 2008, which is extremely low and means the UK is lagging behind many western countries. There seems to be consensus among those working in diabetes research that greater investment from the Government is vital to drive developments in this area. At present, our Government invest less per capita than the US, Australia and Canada in type 1 diabetes research.
I am aware that there is some joined-up thinking, not least by my right hon. Friend the Minister for Universities and Science, but I would be grateful if the Minister here told us how the Government will work to ensure that the sort of treatment for type 1 diabetes sufferers will be matched up to the level of other western nations, what more can be done to fund pioneering research, and how we can roll out the level of service received by patients at Imperial college to patients throughout the country.
I am pleased that so many hon. Members are here today. We all have our contribution to make and I look forward to hearing what they have to say. The 400,000 sufferers and their many millions of relatives and carers will be cheered that we are treating the issue seriously.
As ever, Mr Havard, it is a pleasure to serve under your chairmanship. I am grateful to my right hon. Friend the Member for Knowsley (Mr Howarth) for securing this important debate and for the way in which he opened it. He knows better than almost anyone else the terrible price that this condition sometimes forces sufferers to pay and its impact not only on individuals, but on their families. If the Government need a champion for the matter, they could not find a better one than my right hon. Friend.
My short contribution will support many of my right hon. Friend’s points, but first I want to thank the health care professionals involved in the management and treatment of this condition, particularly those at my North Tyneside General hospital. As we have heard, diabetes affects around 35,000 people aged under 19, 90% having type 1 with a peak age of diagnosis between 10 and 14. We are making good progress in the treatment and management of type 1 diabetes, including among young people, but we have a long way to go. I am no scientist, but my fervent wish is that we find a cure not just in my lifetime but much sooner. Important work is being done in this country and elsewhere on stem cell research, which is a possible route to finding that cure.
I welcome the Prime Minister’s interest in promoting the work of the UK-Israeli partnership. It is important when Prime Ministers take an interest in a particular issue, but I echo the points made by my right hon. Friend that we must look at where the funding is coming from, where it is being directed, and the overall amount.
My first brief point is about timing. Type 1 diabetes in young people often occurs at a difficult time in young people’s lives when they are struggling to cope with the physical changes that come with being a teenager. After an acute episode they often find themselves managing a chronic condition. They may be struggling to come to terms with a new health regime and may suddenly find themselves being treated in the NHS as an adult. That difficult transition may lead to a break in service, and add to complications further down the line with damaging consequences.
The statistics for young women with type 1 diabetes are startling. Young women between the ages of 15 and 34 have a mortality rate seven times higher than the general population. I welcome the introduction of the best- practice tariff up to the age of 19, but ask the Government to consider extending it to 25. That would allow greater continuity of care and a more flexible transition, which should be based on clinical need and not age.
Type 1 diabetes is more than simply a physical condition, although it is that, and health care has improved in many ways with advice on diet, the massive impact of accessing eye tests and checking feet regularly, but there is a psychological impact. Anyone with a serious chronic condition that will last the whole of their lifetime will think about that and may become depressed at some point. I do not know enough about anorexia or bulimia to comment, but I do know that type 1 diabetics must at some point in their lives not only think about it but become depressed as a result. Therefore, access to psychological services should be part of the offer that is made. That should, when necessary, involve family members as well, because it is not just about the individual, but about their family.
I very much welcome the professional pathway that has been created for paediatric diabetes as a specialism, but, as my right hon. Friend and the hon. Member for Cities of London and Westminster (Mark Field) mentioned, we need to ensure that health care professionals are also aware of the condition and are supported by clear national standards. I would like that to be extended to teachers and other staff in schools as well. It is as important that the person looking after the dinner queue knows about diabetes in young people as it is that the person at the front of the class teaching them knows. That is why I support very much Diabetes UK’s “Make the Grade” campaign. I want every young person with type 1 diabetes to get the health care that they need, but I want them to get the educational opportunities as well. I want them to do well and go on to further and higher education. I want them to be able to take part in school sport and school visits without being worried and without the member of staff with them being worried.
The Government have produced figures—we have heard them today—about the cost to the NHS of diabetes. We have heard that the figure is £1.9 billion and rising, but, as ever, behind those statistics are thousands of young people with type 1 diabetes. Frankly, we could do more, and Government could do more, to make their lives not only better, but longer.
It is always a pleasure to serve under your chairmanship, Mr Havard. I add my congratulations to the right hon. Member for Knowsley (Mr Howarth) on securing an important debate. He will recall that previously—I think that it is now nearly two years ago—I led a debate in this place on eating disorders. He came along and enlightened everyone present about the problems with diabulimia—a condition that until that point I had never heard of—and he has done the same today. As the chairman of the all-party group on body image, I am very conscious of the way in which young diabetics—I have said “young” and I shall probably focus on women; I appreciate that people of all ages have type 1 diabetes and that eating disorders affect men as well as women—and, in particular, young women are manipulating their use of insulin to achieve very rapid weight loss, which poses a very significant risk to their health.
Diabetes is an entirely manageable disorder. It takes some time, experience and a lot of work for the sufferers to come to terms with it, but they can manage it. However, when it is combined with body-image issues, it can have terrible and long-lasting effects and, in some tragic cases, it can be fatal. Today, therefore, I want to focus on the issue of eating disorders among those with type 1 diabetes.
Of course, I appreciate that young people with diabetes face many issues and problems. I had a great Easter card from a six-year-old constituent of mine, Isabelle. She uses an insulin pump, as many people do, but she still has to test her blood sugar levels six times a day. I know from her letter that she is a fantastically brave young lady. She has specifically asked me to raise with my hon. Friend the Minister the issue of research funding and has highlighted the work of JDRF, which we all agree does amazing work in this area.
The all-party group on body image does a great deal of work to emphasise the pressures that young people in particular are under to conform to our so-called beauty norms, and part of that of course is about weight. It is shocking but true that too many people are prepared to sacrifice their health and well-being just to be thin. I have a view on the role that the media play in that. I am talking about the manipulated images—the use of Photoshop and airbrushing to create digitally an image of so-called perfection that of course in the real world is impossible to achieve.
Many young people fall victim to eating disorders, which can wreck lives. Nearly 4,000 people under 18 have been admitted to hospital with eating disorders in the past four years. That includes 270 boys and 163 girls under 10. And the situation is getting worse, not better. As the chairman of the all-party group, I have seen some of the most horrific consequences of eating disorders, but if they can have that effect on otherwise healthy young people—those who have previously been in good health—what effect can they have on someone who is already vulnerable?
Most children diagnosed with diabetes receive their diagnosis between the ages of 10 and 14, which as we all know is a hard time, as it is for any teenager. They are going through puberty, experiencing physical and emotional changes and, crucially, trying to fit in with their peers. Let us now take ourselves back to those years—that may be hard for some of us—and imagine reeling from a lifelong diagnosis, a diabetes diagnosis, and having to deal with the other pressures on us at that stage in life. Suddenly, the weight-loss benefits that can be had from diabulimia might seem highly attractive.
We have heard about social media and how that can be a force for good. Sadly, it can also be a very detrimental force. A quick scan of Google will show that there are many forums and chatrooms where advice is given on how to control diabulimia and how to use it to drop weight dramatically.
The prevalence of depression is twice as high among people with diabetes as it is among the general population. Particularly when people are at this vulnerable age, a diabetes diagnosis can cause dangerous levels of depression. Other hon. Members have mentioned the stigma. I was very upset to hear of a primary school in my constituency that did not want to manage a young lad’s diabetes through his being allowed to have tests and insulin injections in the classroom. It felt that that would upset other pupils. My ex-husband is a diabetic and routinely injected in front of our at that point very young daughter and, indeed, her friends. They were never upset by that; in fact, they had a morbid fascination with it and were all gripped to watch it go on. I think that it is a positive thing for children to learn from a very young age that other children have conditions that they can manage perfectly safely, that involve injections and that are not a reason for fear or stigma.
Obviously, diabulimia—the practice of reducing insulin injections to reduce calorie absorption and therefore cause rapid weight loss—is hugely unhealthy. It is one reason why the mortality rate for women with diabetes who are aged 15 to 34 is seven times higher than that for their non-diabetic counterparts. Of course, death is the most extreme consequence of diabulimia, but it is not the only one. One hundred amputations are carried out every week as a result of diabetes, and diabetics are 20 times more likely to go blind than non-diabetics. With poor management, those disabilities become far more likely. After those effects are seen, it is often a steeply downhill slope: 70% of amputees die within five years of the operation.
The combination of eating disorders and diabetes is so deadly that groups such as Diabetics with Eating Disorders have been formed to deal directly with the issues. They have found that far from a tiny minority, about 40% of 15 to 35-year-olds regularly omit the use of insulin in order to lose weight. Some people might try to pass that off as young people simply forgetting, but when we factor in that 25% of all hospital admissions for diabetic ketoacidosis are in the 16-to-25 age group, it becomes hard to believe that such a consistent and extreme lack of insulin is entirely a result of forgetfulness.
Clearly, the problem of diabetes in conjunction with body-image issues is a more widespread threat, especially to young people, than is widely known. There are some fairly obvious conclusions. Young people must be convinced to adhere to strict care processes, but efforts must also be made to identify those who might have psychological issues and who could do with support by means of a united, combined approach to both their diabetes and their eating disorders. It is unusual to find a diabetes nurse with experience of eating disorders and an eating disorders practitioner who knows about diabetes. We must address that, and I urge the Minister to make a response on it. I hope that this debate has drawn his attention to these issues and that he will share with us his views on what more can be done to identify, assist and properly care for this important group of young people.
I thank the right hon. Member for Knowsley (Mr Howarth) for bringing this issue to our attention in Westminster Hall today. It is good to have a subject that we can all relate to and on which we can speak on behalf of our constituents. The right hon. Gentleman has knowledge of it on a very personal basis.
I was just sitting here and thinking about those deep sleeps that people get into—not that we often have them, Mr Havard. Young children who are diabetic are woken out of their sleep and will wonder what is happening to them. Someone—one of their parents—takes their hand, pricks their finger and checks their blood. That is the reality that many children in the UK face today, and many parents have the same reality because they have to wake them up during the night and have to set the alarm for that purpose. They have regularly to monitor and check their child’s blood sugar levels. It is surprising just how many children have to go through that every day.
The UK has the fifth highest rate in the world of children with type 1 diabetes. In Northern Ireland, there are 1,092 children with type 1 diabetes. The hon. Member for Cities of London and Westminster (Mark Field), who has just left the Chamber, referred to there being 400,000 diabetics in the United Kingdom. In Northern Ireland, we have almost 80,000; one fifth of the diabetics are in Northern Ireland.
When my hon. Friend refers to the high prevalence of diabetes in Northern Ireland, as well as across the UK, does he agree that need for greater emphasis on research, which has been repeatedly raised this morning, is a fundamental way to address the increasing problem? The UK, and the various regions thereof, must place greater emphasis on higher expenditure and greater research to ensure that future generations do not suffer in the same way as the present generation.
I thank my hon. Friend for that contribution. He and other hon. Members have reiterated the need for research, including stem cell research, to enable us, I hope, to come up with a cure for diabetes. The prevalence of diabetes in Northern Ireland is now more than 4%. In addition to almost 80,000 people in Northern Ireland who have diabetes, some 10,000 have not yet been diagnosed. As an elected representative, I have had the opportunity to fight cases on behalf of parents who are under intense pressure because they have a type 1 diabetic child. In Northern Ireland, health is devolved. We have been able to speak to the Minister, Edwin Poots, and through his office and through the pressure that we and others have created, we have succeeded in getting the health service in Northern Ireland to provide 400 insulin pumps for type 1 diabetics. Getting the pumps is only one part of the story. The second part is to train people to use them, so the second stage of the process has been training parents how to do that. Good things have happened.
Diabetes has increased in Northern Ireland, but it has also increased worldwide. Type 1 and type 2 diabetes have increased by 33% in Northern Ireland, by 25% in England, by 20% in Wales and by 18% in Scotland, and some 24.5 children in every 100,000 aged 14 and under have diabetes. That shows the magnitude of the problem. The Minister is responsive and has a particular passion for health. He has attended, as have others in the Chamber, the type 1 diabetes events that have taken place here with young children. Those events have given us all a chance to see how important the issues are. We have far higher rates of diabetes in children than do Spain or France. In Northern Ireland, there are 1,092 children under the age of 17 with type 1 diabetes, and almost one in four of them experienced diabetic ketoacidosis before a diagnosis was made.
In my constituency, the number of diabetics has gone up by 30%, with 800 people becoming diabetic in the past seven years. I should have registered an interest at the beginning of my speech. I am a type 2 diabetic, and I am one of those 800 people who were diagnosed in the past seven years. In our small part of the United Kingdom, the total number of adults aged 17 and over who have diabetes and are registered with GPs is just shy of 76,000, and there are a further 1,092 under the age of 17. Diabetes UK Northern Ireland has launched a report that highlights the latest findings into diabetes in Northern Ireland, and I think it is important to put those figures on record. The Diabetes UK Northern Ireland national director Iain Foster said:
“The State of the Nation report is a timely and important piece of work which highlights, not only that Northern Ireland has seen the biggest rise in people being diagnosed with diabetes compared to the rest of the UK but that there is a real difficulty in collecting data as Northern Ireland is not included in the National Diabetes Audit. Our State of the Nation report gathers limited local information and we have found that there are now over 80,000 people living with diabetes in Northern Ireland.”
The official figure is just shy of 76,000, but the latest figures from Diabetes UK Northern Ireland indicated that more than 80,000 people are affected. Therefore, within the past five years, there has been a 33% increase in Northern Ireland in the number of people living with type 1 or type 2 diabetes. More than 100 new diagnoses are expected each year if the current trend continues, and 4% of the local population now has a diagnosis of diabetes.
I cannot emphasise enough that diabetes is a ticking time bomb, which has the potential not only to destroy lives, but to bankrupt the NHS. The financial cost of diabetes cannot be discounted. I agree with Iain Foster:
“It is not enough to shout from the side-lines: ‘something must be done’”—
we have been talking today about what must be done, and we want to see what will be done—
“so instead we have outlined ways in which we think the situation could be helped, for example, working to enable access to available treatments including insulin pumps for both adults and children and integrating diabetes clinical databases to create an accurate diabetes register.”
My hon. Friend the Member for Upper Bann (David Simpson) and the right hon. Member for Knowsley referred to education. It is so important, as hon. Members have said, for teachers, classroom assistants and staff in our schools to be aware of what it means to be a diabetic in school. In Northern Ireland, we have implemented a system of training for teachers and classroom assistants to ensure that they have the knowledge to deal with the condition.
In conclusion, I ask the Minister to outline what co-operation exists between regional assemblies to deliver a better strategy for the whole United Kingdom. He will be aware of the 10-year strategy that ended in 2013. I have asked on a number of occasions for a new strategy to be put in place, because it is important that all the regions of the United Kingdom of Great Britain and Northern Ireland work together to deal with the problem. To address the issue of the many children who suffer from diabetes, and many more who are predicted to be diagnosed, we must take action and take it now. I congratulate the right hon. Member for Knowsley on bringing the matter forward, and I urge the Minister to do more than simply talk about it. He must take action quickly, while there is still time to make safe this ticking time bomb.
I congratulate the right hon. Member for Knowsley (Mr Howarth) on securing this important debate and on his comprehensive introduction to the problem. As has been said, the UK has the fifth highest rate of diabetes in the world and the fifth highest rate of diabetes among children aged up to 14 in Europe. It is important for us to do the best we can to help people with the condition.
I cannot emphasise enough the importance of getting across the difference between type 1 and type 2 diabetes. They are both chronic conditions, but type 1 is known to be genetic while type 2 is a consequence of lifestyle and diet, and is not necessarily related to genetics. Consequently, the treatments for type 1 and type 2 are varied. People with type 2 can be treated mostly with a change in diet and exercise, and some medication. Increasingly, however, insulin injections are being prescribed for people with type 2. People with type 1 are those whose pancreas has basically stopped producing insulin, and they have to take insulin via subcutaneous injections. There is no alternative to that treatment for people with type 1. Additional medication can be added to the insulin regime to reduce the risks of common complications that can affect all people with diabetes, such as stroke, heart disease, sight loss and limb amputations.
Only one in five people with diabetes is type 1, and most are diagnosed before the age of 40. I was fortunate to have been diagnosed after I had finished full-time education, because type 1 diabetes can have a major impact on a young person’s life and health in many ways—educationally, socially and psychologically. One of the major problems for children is how they treat themselves for their condition at school. There are three stages through which a young person has to go. There can be problems at primary school, which have been referred to, where teachers may refuse to help the child medicate. Some schools will not admit a child because they have diabetes. Others will admit the child but will insist that the parents come in to do the blood test and help the child deliver the insulin. That is not fair to the parents, and it increases the overall cost of the condition to the taxpayer.
In secondary school, there is the problem of the young people themselves, which has been mentioned. There are psychological difficulties inherent in having to set themselves apart from the rest of the school because they have a condition that requires them, from time to time, to test their blood sugars—that means a simple finger prick to take blood out of their finger and put it on to a test strip—and find somewhere healthy and clean to use their pen, which looks like a normal pen but is in fact an injection device, to make an injection.
The next stage is higher education, where the young person will move from their GP setting to a student health service. Transition is a major issue, and every young person with diabetes should experience a smooth transition to adult diabetes services at a stage and time right for them. Adolescents with diabetes have unique health requirements. They must cope with the biological, psychological and social transitions to becoming an adult while managing a chronic condition. Many people experience deterioration in their control of their diabetes in adolescence, and they are particularly vulnerable as their care is transferred from child to adult services.
Adolescence is also a time when lifelong health behaviours are laid down, so transition must be carefully instigated at a time when the young person has sufficient clinical understanding of managing their condition to get the most out of the adult diabetes service. If that does not happen and young people are simply transferred to adult services, they will often disengage with the service, leading to poor control and an increased risk of long-term complications.
The importance of getting transition right for young people with diabetes is increasingly acknowledged across the international health care arena. That is reflected in the best practice tariff, which includes the criteria that provider units must have a clear policy for the transition to adult services. Will the Minister explain why the best practice tariff cannot be extended—as was asked for earlier—to include all young people up to the age of 25?
The other big issue is the regional disparity of care. The problem is not just about access to medical equipment such as insulin pumps, although really that should not be an issue at all. All children diagnosed with type 1 diabetes should be offered pump treatment on diagnosis, and I would like to ask the Minister a second question: why is that not so? Parents who have engaged with the paediatric diabetes peer review have expressed to me their concern at the plan to discontinue the programme this September.
As we have heard, there is huge regional discrepancy in the provision of care for children with diabetes, in terms of both patient experience and outcomes, with the number of children achieving target HbA1cs falling woefully short in some areas and compared with other countries. Parents have been very impressed by the work of the networks to try to address variation and achieve considerable improvement. However, there is still a long way to go, and the audit can provide only benchmarks and goals, not strategies for achieving higher standards.
The peer review programme, on the other hand, has been meticulously and carefully designed to address the causes of discrepancies in care standards. The programme managers and lead clinicians in each network have worked hard to design a set of measures that enable teams to understand more fully how to provide the highest standard of care for the children who attend their clinics. It seems that the peer review programme has the power to drive change and raise standards across the country, ensuring that children with diabetes can lead healthy and productive lives.
My third question to the Minister, therefore, is why is the paediatric diabetes peer review programme being discontinued? The lifetime cost to the UK economy of everyone living with type 1 today will be more than £55 billion. With the incidence rising, that figure will only increase, and remember that only one in five people with diabetes is type 1. The three priorities for type 1 or type 2 diabetes, whatever a person’s age, must therefore be prevention, early diagnosis and the best treatment to avoid expensive complications. Where young people are concerned, whether children or young adults, we can and must do better.
It is a pleasure to serve under your chairmanship, Mr Havard. Like other Members, I congratulate the right hon. Member for Knowsley (Mr Howarth) on securing such an important debate. It is interesting how much cross-party agreement there is on this issue—I hope that that clear message is reaching the Minister.
I shall be repeating some points that other Members have made, but first I want to say a little about a young constituent of mine in Brighton with type 1 diabetes, with whom I have been working closely. We have been focusing particularly on good practice support for young people in schools. As a result, the local authority in Brighton and Hove is now convening separate groups of parents, teachers and young people to talk through ideas. My constituent, Izzi, is especially keen to develop a system of mentors, where older pupils with type 1 can support younger pupils in school, particularly at stressful times such as transition or during exams.
Some of the proposals we have been discussing are not rocket science—they are very simple, but would make a huge difference. For example, young people should have a safe and pleasant place to go and inject. That place should not be locked, as sometimes such places have been; it has meant that young people have had to inject in the toilets. That gives the impression that people are trying to push the issue away. As many others have already said, we must address stigma, and one way to do that is to make injection far more normal and provide much greater support for it in schools.
As others have said, it is important to stress that type l diabetes is not just a medical condition. It can have severe psychological and educational implications and affect people in very different ways. Type 1 young people need to have medical and educational support tailored to their individual needs. Just because a person does not look ill, that does not mean that they are not juggling a vast number of factors to try to keep themselves well.
Izzi has warned that, increasingly, type 1 young people are being refused disability living allowance, despite the massive extra burden on them and their families to maintain their health. She had a DLA application turned down when she was 16, and it was obvious from the assessor’s comments that there was very little understanding of her condition and how it needs to be managed. For example, the assessor judged that Izzi’s age and the fact she has had her condition for many years meant that she was able to deal with taking her medication without help. Izzi very much wishes that that were the case, but when she is severely hypo or hyper, it simply is not.
After a great deal of extra work, she appealed against the decision and was awarded the lower rate of DLA for a further year—she had previously been on the middle rate. Many people would not have challenged that decision and might therefore be missing out on vital support. Izzi will still be only 17 when her DLA stops—not legally classified as an adult, but still supposed to be able to totally self-administer a potentially lethal drug several times a day, without any help or supervision—even when she is not able to concentrate because of high or low blood sugar levels. On behalf of many other type 1 teenagers who are or have been in the same position, she wants Ministers to understand that reality.
Izzi also wants to raise the issue of plans to scrap the national peer review programme, which the previous speaker mentioned. There are real concerns about the risk that that programme will end, as NHS England has committed funds only until September. Across the country, there is a huge difference in the provision of care for children with diabetes, in terms of both patient experience and outcomes. The peer review system provides important information and opportunities to help improvement. I would like to draw my remarks to a close by identifying a couple of areas in which peer review is important and working for children, and the benefits that it brings to families, as set out by the Families with Diabetes National Network.
Peer review measures the extent to which teams can provide 24-hour cover as prescribed under the best practice tariff. That cover is essential for families because it avoids expensive hospitalisations, and serious concerns have been raised where cover is inadequate. Peer review highlights the extent of paediatric ward staff training to ensure that children with diabetes who are admitted to hospital can be looked after safely. That is a huge issue for families, and the peer review programme has helped teams to understand better how to achieve ward staff training. Peer review also highlights the ongoing training of team members, ensuring that they are all trained to an appropriate level, which is key to the provision of good care for children.
Peer review measures the extent to which teams review patient feedback and take action accordingly. Families can help teams to improve by providing that feedback, and peer review ensures that it is both used and acted on. It also measures the extent to which teams provide self-management education to families. Self-management education is essential in keeping children out of hospital and enabling them to achieve good control and avoid complications.
Peer review measures the extent to which teams support children in school, which is an essential pillar of good self-management, and the programme has enabled teams to share strategies and documents and therefore to disseminate best practice. Finally, peer review examines arrangements for the transition to adult care—arrangements that, as we know, are key to ensuring that young people do not fall out of the system and develop complications at such a critical age. The peer review programme has encouraged teams to work together to address the issues relating to transition.
For all those reasons, along with the many others raised by Members this morning, I hope that the Minister can assure us that he will look again at peer review. There is real concern about it, as well as about the level of research funding, and I would like to add my voice to those who have said that the UK must do more research, particularly for type 1 diabetes.
In conclusion, I welcome the opportunity to have this debate and very much hope that it will increase awareness of the needs of young people with diabetes. There are more than 25,000 young type 1 sufferers in the UK, and, like Izzi in my constituency, they all deserve the very best chance.
I, too, thank my right hon. Friend the Member for Knowsley (Mr Howarth). I know how much this means to him and his family. I am genuinely grateful for all the work that he does in this regard.
This is a vitally important debate. We have had a tremendous debate today, involving hon. Members from all parties, providing us with a brief opportunity to deal with important issues that have stood neglected for too long. People with type 1 diabetes are not receiving the services they need or the support that they deserve; this is a fact. Often—let us be honest about it—we debate pure opinion, but it is an absolute fact that people with type 1 diabetes are not getting the level of services that they require.
I declare an interest as someone who has lived with type 1 diabetes for four years, after being hospitalized as an undiagnosed type 1 diabetic suffering from advanced diabetic ketoacidosis, two weeks before the last general election. The things people do to get out of it! I have never particularly enjoyed talking about the condition, principally because our medical histories are our own private business, but also because of the risk this poses of allowing others to define me as a person and as a politician. As the hon. Member for Torbay (Mr Sanders) has proven, reservations that people might have about people with the condition are unfounded. The longer I live with the condition—it is important to point out that this is a condition and not a disease—the more angry and frustrated I become with the treatment I receive and, more importantly, about the treatment that other people living with the condition receive.
The National Institute for Health and Care Excellence recommends that type 1 diabetics should receive nine key tests for diabetes care every year, yet thousands are missing out on these tests. In the four years that I have been a type 1 diabetic, only once have I received all nine tests. These tests are essential to ensure that diabetes is controlled. If left unchecked, diabetes can, as we heard, lead to blindness and kidney failure, and can increase the risk of developing cardiovascular problems, such as heart attacks and stroke. The National Diabetes Audit found that young people are the least likely of any group to access these nine treatments.
We have also heard that type 1 diabetes is a chronic, life-threatening condition that has a lifelong impact on those diagnosed with it and their families. It affects about 400,000 people in the UK, including 29,000 children, which is equivalent to more than 600 people in each constituency. Type 1 diabetes is not caused by lifestyle factors, such as obesity, poor diet or lack of exercise—I should know; I have just run the London marathon on behalf of the Juvenile Diabetes Research Foundation—and there is currently no way to prevent the condition.
People with type 1 diabetes rely on multiple insulin injections or pump infusions every day, just to stay alive; we know this. In 2014, a person with type 1 diabetes will on average undertake more than 2,000 finger-prick blood tests, have 1,500 insulin injections and count the carbohydrates in more than 1,000 meals.
A child diagnosed with type 1 diabetes aged five faces 19,000 injections by the time they are 18 years old. Since my diagnosis, I have been fortunate enough to meet many young people with the condition and each and every one of them inspires me. I am incredibly grateful for the work that they do through the Juvenile Diabetes Research Foundation and through Diabetes UK. Their advocacy is superb and their voice is becoming louder, but I say to them that it needs to become much louder still.
Good blood glucose control is hard to achieve. Type 1 diabetes reduces life expectancy by approximately 12.5 years in people with the condition aged 20 to 24 years old, compared with similarly aged adults without the condition. High blood glucose can cause very serious long-term damage to the body. On average, complications of type 1 diabetes set in 20 years after diagnosis, meaning that a child diagnosed at age five may begin to show signs of damage that can lead to sight loss, kidney disease, limb amputation, heart attacks and stroke by the age of only 25.
Just 6.7% of children with diabetes in England and Wales, 96% of whom have type 1 diabetes, are receiving their full set of annual recommended checks. That is a national scandal and it should shame these Houses of Parliament. Type 1 diabetes in young children presents more than a health burden. In 2011, members of the parent group, Children with Diabetes, reported that 60% of families had to change their working arrangements and almost half—48%—had seen a significant drop in their family income. Shockingly, as we have heard, more than half felt that their child had been bullied as a result of having type 1 diabetes.
Type 1 also brings with it an increased risk of depression, with 32% of people with type 1 diabetes showing signs of depression, compared with 16% in the general public.
In addition, type 1 diabetes leads to huge costs for the health service and the wider economy. The lifetime cost to the UK economy of everyone living with type 1 diabetes today is more than £55 billion. This figure is only going one way, and that is up. In 2014, conservative estimates suggest that type 1 diabetes will cost the NHS £1 billion directly and a further £1 billion to the wider economy more generally, excluding a number of treatment costs.
In 2008-09, the Medical Research Council invested £6.6 million in type 1 diabetes research, but unfortunately that fell to £3.9 million in 2010-11 and £4 million in 2011-12. In short, we are spending less than half the per capita figure spent in Australia—the hon. Member for Cities of London and Westminster (Mark Field) made this point earlier—and less than a third of the United States per capita figure, and the Canadians spend almost three times as much per capita as we do. Will the Minister explain why?
Incidence of type 1 diabetes is growing at a rate of about 4% each year. The recent report “Impact Diabetes” estimates that 650,000 people in the UK will live with the condition by 2035, if incidence continues at the same rate. That report also estimates that by 2035-36 the direct cost to the NHS of treating type 1 diabetes will be £1.7 billion and the indirect cost to the UK more generally will be an additional £3 billion.
The UK has the fifth highest incidence of type 1 diabetes in the world and it is increasing at an alarming rate. Research is the key to addressing this growing problem, but UK Government funding for type 1 research has fallen significantly. Let us be honest; this reduction is jeopardising our position as Europe’s number one place for type 1 diabetes research and investigation and I passionately believe that this is letting people with type 1 diabetes down.
The truth is that we are failing people with type 1 diabetes. As a nation we need a war effort—I am not ashamed to say it—in our work to improve treatments and services for people, particularly young people living with type 1 diabetes. We must ensure that every young person with type 1 diabetes receives the nine annual tests. Will the Minister explain how he thinks this can be done and what he will do about it?
Too often I hear from type 1 diabetics and their families that they cannot access insulin pumps, that blood glucose monitoring strips are being rationed and that it is getting harder to access primary care to get the help they need to manage their condition. Will the Minister take a close interest and deal with these issues where they arise around the country? There is huge, clear geographical disparity and it needs some close Government attention.
I will write in detail to the Minister about what needs to happen to improve the lives of people with type 1 diabetes. What is needed is more attention and understanding and more research and resource, to ensure that people with type 1 diabetes receive the care that they deserve. I look forward to the Minister’s reply.
It is a pleasure to serve under your chairmanship for the second time this week, the first time being during the Defence Committee sitting yesterday.
I pay tribute to the right hon. Member for Knowsley (Mr Howarth) for securing the debate and for his articulate and reasoned contribution to it, and for his passionate advocacy of the needs of people with type 1 diabetes. He has family experience of these issues that will have strongly informed his understanding of them. The balanced, perceptive way that he approached the debate, raising important issues, particularly about tariff-setting, which is in my view the strongest and best way to drive up the quality of care available for patients with type 1 diabetes, is of great credit to him and helped set the tone for a consensual debate. It is also a pleasure to respond to the right hon. Gentleman formally, because he responded to my maiden speech when I was first accepted into the House. He was kind to me then and I hope that my response will do this debate justice and will bring some comfort to hon. Members who have raised concerns.
I also pay tribute to hon. Members’ contributions to the debate. As always, the hon. Member for Strangford (Jim Shannon) makes important points about how, although we have devolved health systems, we need to learn lessons from best practice throughout England and Northern Ireland. It is important, even in a devolved health system, that we work collaboratively together to improve standards of care. I will try to deal with points raised in the contributions from the right hon. Member for Tynemouth (Mr Campbell) and the hon. Member for Brighton, Pavilion (Caroline Lucas).
My hon. Friend the Member for Cities of London and Westminster (Mark Field) eloquently outlined for all of us what this means on a day-to-day basis for a young person with type 1 diabetes. In many respects, that sets out the challenge for our health service: working together with the education sector and with other parts of our health and care system, it needs to help improve the day-to-day quality of life for people with type 1 diabetes. My hon. Friend the Member for Torbay (Mr Sanders) made a similar point. My hon. Friend the Member for Romsey and Southampton North (Caroline Nokes) raised the importance of research funding. I will address those points later in my remarks.
As we have heard, type 1 diabetes has a potentially devastating effect on children’s health. Poor diabetic control for children increases their risk of developing long-term complications over the course of their lives—we have heard about renal complications, diabetic retinopathy and the consequences of diabetes-related peripheral neuropathy. Such consequences are potentially life changing, and so it is important that we do all that we can to address them and to support people with type 1 diabetes. It is a question not just of early diagnosis but of the right care and support in the secondary care setting, in primary care and in the community, to give better support to people with the condition so that they can stay well and be properly looked after. That is a challenge that we face in all aspects of the care that we provide to young people.
The children and young people’s health outcomes forum, which was set up by my right hon. Friend the Member for South Cambridgeshire (Mr Lansley), highlighted a number of challenges faced by children with long-term conditions such as diabetes and by their families. It is worth highlighting two or three. The first was that there are poor arrangements for transition to adulthood—that has been highlighted throughout our debate. Secondly, there is a need for better integration of care, with co-ordination around the patient—the child or young person. We need a comprehensive, multidisciplinary team approach to care, with a much greater emphasis on better support for young people in the community and in their own homes. There also needs to be much speedier diagnosis of long-term conditions in young people, including asthma, diabetes and epilepsy.
The NHS atlas of variation has identified an unacceptable variation between different areas, a point raised by the shadow Minister. That is clearly unacceptable to us all. There is variation in the quality of management of children’s diabetes, and in the number of children with previously diagnosed diabetes admitted to hospital for diabetic ketoacidosis. We all know, then, that we have some way to go on improving the care of children and young people with diabetes. I hope my remarks will be able to give some reassurance that we are now firmly on the right track, particularly with our best practice tariff.
In my contribution I outlined the diabetes strategy that was in place for the 10 years up to 2013. I have asked Ministers about that issue a number of times and am keen to see a continuing initiative for a UK-wide strategy. Will the Minister give us an idea of his intentions in that regard? That strategy could address regional variations.
As I mentioned earlier, it is important that we learn from good practice, not just in the UK but elsewhere. A key driver of improving practice is clinical audit of the quality of services delivered. Outcomes for people with diabetes in England will also be assessed by the national diabetes audit, which includes a core audit, the national in-patient diabetes audit, a diabetes pregnancy audit, the national patient experience of diabetes services survey and the national diabetes foot audit, which is due to be launched this summer. Having that high quality comparative data, gathered through clinical audit from different care settings across the UK, will help us to understand where services are and are not delivered well. Audits in particular care settings always make recommendations for improvement, and the following year there is another audit. Exposing where care is good or not so good and putting in place plans for improvement on the ground will be a big step forward. At a national level, we can then look at which improvement plans have worked and which have been less successful. That learning is a good way of driving up standards and can be shared with Northern Ireland and other devolved parts of the United Kingdom, and indeed on an international basis. I believe that in this country we are historically good at collecting data. The purpose of national audits is to drive up standards of care, which is why NHS England is putting many more national audits in place throughout the health service. We will be able to compare what is done in different care settings, learn where care needs to be better and drive up standards throughout our health service.
We all understand the importance of the integration of mental health care and diabetes care for the young people who have serious health issues resulting from that combination of issues, which puts them at high risk of complications and premature death. The Government are investing £54 million over four years to enhance the children and young people’s improving access to psychological therapies—CYP IAPT—programme. That programme is helping to transform services through training in evidence-based therapies to support children and young people with a range of mental health issues. I am sure we all support that programme and want to see it expanded further.
I am glad to say that investment in type 1 diabetes research by the Medical Research Council and the National Institute for Health Research has risen from more than £5.8 million in 2011-12 to more than £6.5 million in 2012-13. The National Institute for Health Research is funding a £1.5 million trial focusing on children and young people with type 1 diabetes, which is comparing outcomes for patients treated with multiple daily insulin injections to outcomes for those using pumps, one year and five years after diagnosis. The report of the trial is due to be published in a few months. When we are looking at how best to support people with type 1 diabetes in leading as normal a life as possible, whether that be in education or in the workplace, it is important that we understand which interventions and methods of support work best. I am sure that that research will put us in a much better place on that.
Is the Minister aware of the JDRF’s “#CountMeIn” campaign? It is calling for an investment of £12 million per annum by the MRC and NIHR to bring the UK in line with recent per capita spending by Governments internationally. Has he given any thought to that and if so will he comment on it?
With research funding there is often a bidding process, and it is up to organisations to bid for funding. I am pleased that the amount of money going into diabetes research is improving and that there is a now a project specifically on type 1 diabetes that is looking at the impact of different interventions and support—such as the use of pumps—on young people’s lives to see which methods work better. The emphasis is not just on clinical outcomes but on how young people’s experience and quality of life is affected, so that that is taken into account in how we look at diabetes. Health care research funding is moving in the right direction, and not just for diabetes—research funding has increased considerably over the past few years in a number of areas of health care, something that we should welcome.
As we know, NICE has national standards, but in the few minutes left I want to discuss the best practice tariff. The way that we set up commissioning arrangements and the best practice tariff will help us make a difference in the future. The tariff ensures that payment is linked to the quality of care provided, an important driver of how services are delivered to patients.
I will briefly set out aspects of the diabetes best practice tariff. A young person’s diagnosis is to be discussed with a senior member of paediatric diabetes team within 24 hours of presentation, to get early specialist support in place. All new patients are to be seen by a member of the specialist paediatric diabetes team on the same or the next working day, and each patient is to have a structured education programme, tailored to their needs and the needs of their family, to support them and help them understand how they can better cope with their condition and manage it themselves as best as they can. The tariff places a strong emphasis on multidisciplinary team work, including support from dieticians—we have heard about issues connected to eating disorders, and dieticians will have a key role on that. Many other aspects of the tariff focus on multidisciplinary working to put things on a better basis for young people with diabetes.
The right hon. Member for Knowsley raised a number of other issues in the debate; I will write to him about those matters. The issue is complex and important, but I hope that I have been able to offer some reassurance. The tariff and the increased spending on research mean that we are moving to a better place with our support for people with type 1 diabetes.