Diabetes (Young People)

Debate between Barbara Keeley and Adrian Sanders

Wednesday 15th September 2010 Westminster Hall

[Barbara Keeley]

Indeed, and we heard earlier that the incidence of type 1 diabetes is increasing by about 4% each year. The biggest increase is in children under five. A fivefold increase in the past 20 years, as my right hon. Friend the Member for Don Valley (Caroline Flint) said earlier, is a matter of great concern. It is important that more attention be paid to helping GPs, pharmacists, other health practitioners and teachers to identify type 1 diabetes in children and young people. As with many long-term conditions, early identification is the key, because the later the diagnosis of diabetes, the greater the impact.

My right hon. Friend the Member for Knowsley asked the Minister in an Adjournment debate on diabetes last week to introduce protocols for GPs on dealing with certain symptoms. That would ensure that GPs were better equipped to diagnose diabetes. The Minister said then that he would consider the point and would have more to say on it during today’s debate. I hope that we shall hear his answer.

As we have heard, the Government’s NHS White Paper proposes to give GPs the power to commission services, instead of primary care trusts, which will be abolished. I have raised on a number of occasions recently the fact that there is great concern that many GPs do not have the depth of knowledge required to commission specialist services for conditions such as diabetes. GPs may not have the skills, experience or desire to assess whole-population health care needs, to manage the market, to negotiate contracts and to monitor performance. That is becoming a key point of concern, because GPs did not necessarily come into medicine to do those things. Indeed, I understand that the Royal College of General Practitioners is urging the Secretary of State for Health to put back his plans for GP commissioning. The college’s report on the Government’s consultation has unearthed “major concerns”. That is in line with the responses from medical charities such as Rethink and campaigns such as the Muscular Dystrophy Campaign, which also have concerns that GPs lack the skills and experience for commissioning across such a range of conditions.

There are also concerns that in taking on such a wide role, GPs’ primary role of making diagnoses and providing patients with all the information and support that they need could be affected. Some of the statistics are already becoming a cause for concern. Surveys by Diabetes UK have found that 20% of young people feel that they rarely, if at all, discuss their goals for their diabetes care during check-ups. Further, only 26% have attended a course to help them learn about managing their diabetes. The essence of managing a long-term condition is recognising that people must become expert patients. If they are young, their family members must become expert carers. Will the Minister outline what steps the Government will take to make sure that GPs are better equipped to diagnose conditions such as type 1 diabetes and to continue, and improve, their support for people with the condition?

There is a clear need for people with diabetes to be given better information about how to manage their condition. The hon. Member for Torbay (Mr Sanders), who chairs the all-party group on diabetes, has tabled early-day motion 72, which notes that 65% of the 2 million people in the UK with diabetes are not taking their medication as prescribed, because two out of three do not understand what those medications are for or how to take them. We have heard from my hon. Friend the Member for Mitcham and Morden (Siobhain McDonagh) what it is like to land at home with a host of medications, without having a real idea of what to do with them.

[Mr Sanders]

It is helpful that the hon. Lady has raised that point, because it is an important element of the issue. There are enormous savings to be made by preventing wastage, but we are not just talking about tablets—there is also medical equipment. Increasingly, people with chronic conditions depend on medical equipment. Being able properly to take and analyse a blood sugar reading is a very important aspect of a diabetic’s ability to treat themselves.

[Barbara Keeley]

Indeed. I understand that the early-day motion argues that people with diabetes have a right to expect a personalised information prescription, so that they receive clear and consistent information on diabetes, which will enable them to start to understand their condition and treatment options.

Will the Minister outline what action the Government plan to take to ensure that the NHS at a local level provides diabetes care and support in line with the standards set out in the EDM? The Minister will know that I am always concerned to ensure that we consider carers’ issues in the House, and my hon. Friend the Member for Mitcham and Morden has just touched on some of those issues. We should consider the effect that long-term conditions, such as type 1 diabetes, have on family members and carers. My hon. Friend described it as a soft issue, but carers are the backbone of support for children and young people in this situation, and there is an impact on them.

The Juvenile Diabetes Research Foundation states:

“Type 1 diabetes pervades every aspect of a person’s life.”

Of course, it also affects their family. As we have heard, everyday activities, such as eating and drinking, which are often difficult enough with children—particularly young children—involve much thought and planning on the part of carers of children and young people with type 1 diabetes.

My hon. Friend the Member for Mitcham and Morden mentioned the survey carried out by the parent group, Children with Diabetes. As she said, it found that 83% of parents said that their family life was affected by a diagnosis of type 1 diabetes—quite understandably—and 84% of parents said that the treatment that they received was affected by where they live. That should not be the case; we should not have a postcode lottery. Some 60% of parents said that their children were most worried about being seen as different—children are, of course, always worried about that—and, most worryingly, 50% reported that their children had been bullied as a result of having type 1 diabetes.

The hon. Member for Torbay talked about the stigma associated with treatment by injection. Clearly, bullying in schools can be a result of stigma and perceived difference in children. That is of great concern. Diabetes UK has found that many parents of children with diabetes are forced to give up work, for reasons outlined in today’s debate. In a recent survey, half of primary school pupils with type 1 diabetes and a third of their secondary school counterparts reported that their parents had to reduce their hours or give up work to help to administer insulin injections.

The report also revealed that two thirds of primary school pupils and four fifths of secondary school pupils questioned think that school staff do not have enough training in diabetes. That is not surprising given the findings of an earlier 2008 survey of primary schools. It found that 42% of schools that had children with diabetes did not have any policy advising staff about the supervision of blood glucose monitoring by the child, 48% did not have a policy advising staff on how to help carry that out, 41% did not have a policy advising staff on how to supervise medication of any sort, and 59% did not have a policy advising staff on how to give medication. So the load is falling directly back on to the parents, because the schools do not have a policy.

When we consider type 1 diabetes, it is important to look at the people around the child or young person with the condition and to consider the level of support, information and training that is needed. The children’s charter for diabetes states that discrimination in education should end and that children with diabetes should be treated with respect. I hope that the Minister agrees with that sentiment.

As I say, one of the major concerns among diabetes charities and groups, such as the Juvenile Diabetes Research Foundation, is the postcode lottery that they feel exists regarding the treatment of type 1 diabetes. We have talked a lot in this debate about insulin pump therapy, because that is rightly viewed as the gold standard of treatment for the condition. Insulin pump therapy reduces hypoglycaemia and long-term complications, and it can make life easier. As we have heard, the treatment involves a bleeper that delivers small amounts of insulin throughout the day.

Those pumps are a cost-effective treatment that can help reduce contact with primary care, reduce hospital out-patient and in-patient admissions and, most importantly for children and young people, deliver a better quality of life. As we have heard, less than 4% of the population with type 1 diabetes use a pump. As right hon. and hon. Members have said, that figure is far below the level of use in Europe, where it is at 15% to 20%, and the United States, where it is at 35%. In fact, given the number of children and young people who go on holiday to the States, it is likely that they will run into pump therapy when they are there. Of course, people also read about the therapies available in other countries on the internet.

It is clearly important that insulin pump therapy becomes available. As we have heard, it can be used by adults and children over 12 and, as my right hon. Friend the Member for Knowsley mentioned, NICE guidance also recommends that children under 12 with type 1 diabetes have access to insulin pump therapy if multiple daily injections are considered impractical or inappropriate.

The hon. Member for Torbay provided a vivid description of the stigma, bullying and other issues that arise in school. For example, he mentioned how hard it is to find a clean and private place in which to administer injections. I have touched on the difficulties of schools not having policies, and teachers not supervising the situation. Clearly, children of almost any age will almost always find it impractical in a school setting to administer injections. In those cases, insulin pump therapy will always be better for the child or young person.

As we have heard, it is worrying that there is considerable inequity in insulin pump provision across the country. My hon. Friend the Member for Mitcham and Morden talked about the figures released this month by the Medical Technology Group, which show that there is a postcode lottery, in terms of access to insulin pumps in the UK. We can compare the cost of insulin pumps, which are £3,000, with the cost of bariatric surgery for the morbidly obese, which is about £7,000. Both of those treatments have beneficial effects, save the NHS money and improve the quality of life for the patient. Bariatric surgery use has increased tenfold from 2000 to 2007 but, as we have heard, our levels of prescribing insulin pumps are only a quarter—or a fifth—of levels of usage in Europe. Given that GPs are to take on a commissioning role, will the Minister state what action the Government plan to take to ensure that insulin pumps become much more readily and evenly available across the UK?

I would like to thank the Juvenile Diabetes Research Foundation, the Eye Health Alliance, Diabetes UK and, of course, the Members’ Library for their excellent briefings on the subject, which have helped us all in today’s debate. I started my preparation for the debate not really understanding very much about the condition, and particularly how it affects children and young people, and I feel that I do understand it now. Given the number of people involved with the issue in every constituency and the prevalence of the condition, all hon. Members should understand it as well as I hope we will by the end of the debate; the discussion has been excellent from that point of view. I pay tribute to the children and young people who are living with this condition, and to their parents. I hope that through this debate and the questions that we are asking the Minister, we can improve the service and support that they receive from health and other services in future.