Type 1 Diabetes (Young People)

Adrian Sanders Excerpts

Wednesday 30th April 2014 Westminster Hall

[Mr Adrian Sanders (Torbay) (LD)]

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.