Type 1 Diabetes (Young People)

George Howarth Excerpts

Wednesday 30th April 2014 Westminster Hall

[Mr George Howarth (Knowsley) (Lab)]

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.

[Alison McGovern (Wirral South) (Lab)]

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.

[Mr Howarth]

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.

[Steve Rotheram (Liverpool, Walton) (Lab)]

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?

[Mr Howarth]

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.

[David Simpson (Upper Bann) (DUP)]

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.

[Mr Howarth]

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.

[Mr Dai Havard (in the Chair)]

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.