Diabetes (Young People)

Barbara Keeley Excerpts

Wednesday 15th September 2010 Westminster Hall

[Barbara Keeley (Worsley and Eccles South) (Lab)]

It is a great pleasure to serve under your chairmanship, Mrs Riordan, for the first time, or certainly the first time in my experience. I congratulate my right hon. Friend the Member for Knowsley (Mr Howarth) on securing the debate.

We have heard a number of telling statistics about diabetes. As has been said, of the young people and children who have diabetes in the UK, about 98.6%—a very large proportion—have type 1 diabetes. It is estimated—and it is a pity that we have to talk of estimates, and do not really know the true figures—that type 1 diabetes affects more than 25,000 children and young people. As we have heard—there are some very useful definitions—it is a chronic condition, which can be life-threatening, and which occurs when the body’s immune system attacks insulin production cells in the pancreas. It is usually diagnosed in childhood, but as with most other conditions children are often kept waiting for a diagnosis. People must live with and manage the condition for the rest of their lives. Even when it is managed through regular injections, type 1 diabetes can bring long-term complications, such as heart disease, stroke or blindness, as my right hon. Friend the Member for Knowsley mentioned.

[Claire Perry]

On that point, a shocking statistic that I was told this morning is that the management of the disease is so sub-optimal that it is estimated that more than 80% of relevant children have blood sugar levels that are too high, despite the best efforts of their parents, the community, hospitals and support groups. That has enormous long-term health and economic consequences. Surely better management of the disease at an early stage would save the children, the family and the taxpayer enormously in the long run.

[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.

--- Later in debate ---

[Mr Burstow]

I will come shortly to the point, which was absolutely well made, and certainly line up with the right hon. Lady’s comments on that. As has been mentioned, the Minister for Equalities has done a sterling job on behalf of the Government to place the issue at the front and centre. She has not resiled from the issue and will continue to pursue it as she has done so far. I was more anxious about that concern being aligned with the Government’s direction of travel on GP commissioning, which I will return to because it was raised, quite fairly, in the debate.

We have heard today about type 1 diabetes—a complex, lifelong, progressive condition that requires careful long-term management to prevent the severe and sometimes fatal complications that have been described. A 2009 survey of children with diabetes in England revealed that 23,000 children and young people currently have type 1 diabetes. There has also been a national diabetes audit, which included a separate report on paediatric diabetes that gives us a fair picture of the extent of childhood diabetes and how well it is being managed. Although Britain has one of the highest numbers of children diagnosed with diabetes in Europe, we have one of the lowest numbers of children controlling their diabetes well, and we have heard what the implications can be for those children and their families. That is extremely worrying, because poor glucose management increases the chance of the child experiencing complications. I echo the view, expressed by many Members in the debate, that that is an area where we can make significant and sustained improvements. I want to describe what we are trying to do about that.

The first question is: how can we ensure that more children receive an early and accurate diagnosis of diabetes? The challenge for GPs is that type 1 diabetes can be difficult to spot. A child might present with the vague symptoms of extreme tiredness and weight loss, which can be mistaken for other illnesses. Type 1 diabetes is quite rare, so GPs might not come across many cases in their practice. That explains why there have been instances of the sort that have been described today: tragic cases of symptoms being overlooked and children diagnosed only after becoming seriously ill.

The National Patient Safety Agency is currently looking at a number of reports of misdiagnosis and delayed diagnosis and is working with the national clinical director for diabetes to look at what we can do to improve diagnosis rates and reduce emergency admissions. Clearly, we will have to look at protocols and how they might serve as a tool that can be used, but we need to ensure that the work is properly concluded before we decide whether that is an appropriate mechanism.

It is true that building professional awareness is key to improving diagnosis rates. We need GPs and A and E staff, in particular, to consider diabetes as a possibility when they see children with appropriate symptoms, and we must ensure that they are equipped with a range of diagnostic tools to do so. NHS Diabetes, the improvement body for diabetes care, is working with various royal colleges and other bodies to improve professional standards and ensure that best practice is reflected in their training curricula. NHS Diabetes is also working with Diabetes UK to publish best practice guides on how a child with type 1 diabetes should be cared for. Therefore, material is being generated that will help a wide range of professionals not only in the NHS, but in education and social services, to recognise the symptoms and understand what good care looks like. In addition, the Juvenile Diabetes Research Foundation has been placing posters in GPs’ surgeries, highlighting the signs and symptoms to help people recognise the condition.

Once diagnosed, children need a combination of high-quality clinical care and wider support to ensure that they manage their diabetes effectively. I concede that across the NHS we have a mixed picture, as has been well described. That is the picture the Government have inherited, and we are determined to improve it. Children with diabetes often need multiple referrals to different specialist services, so well integrated multidisciplinary care is crucial to service delivery.

The right hon. Member for Knowsley broke the ground for the building of the centre in Aintree that he described, which I understand will bring diabetes clinics closer together and make it much easier to access those services. We want to see more such centres of excellence. I welcome that development but stress, rather as he did, that too often the focus is on how many hospitals, doctors and nurses there are. Beds and buildings are not as important as good services, particularly when it comes to managing long-term conditions such as diabetes, as well co-ordinated and well thought-out services that are closer to the patient and can respond to their personal circumstances and fit around their lives will meet their needs better.

[Barbara Keeley]

While preparing for the debate, I noted that my right hon. Friend the Member for Knowsley (Mr Howarth) and the hon. Member for Torbay (Mr Sanders) are lucky enough to represent the two parts of the country where integrated health and social care is thought to be working the best. While talking with the King’s Fund the other day, I learned that there are only six places in the country where it is judged to be working that well. On GP commissioning—several Members touched on this point—how can the Minister ensure that that will improve, because our fear is that that major, top-down reorganisation will mean that those five or six places will be the only ones in the country?

[Mr Burstow]

Had I turned to the next page in my brief, I would have reached an answer to that question, so I will come back to it in a moment. My final point about care is that the latest paediatric diabetes service survey suggests that the picture is improving. It is important to stress that there is movement in the right direction, but there are still deficiencies.

On the question of GP commissioning and how we better integrate the commissioning and joining up of services, a point that the hon. Lady and others have missed in much of the commentary on the White Paper is the clear intention for local authorities to hold a new role in assessing population need. That assessment will be critical to the future of the commissioning of health and social care and to the new role of local authorities in public health, which is key to early prevention of type 2 diabetes. The notion that there is fragmentation and atomisation is far from the truth. The intention is to ensure that we have that alignment of services, which would be much better achieved through the partnership between local authorities and GP consortiums.

--- Later in debate ---

[Mr Burstow]

The right hon. Gentleman and the Juvenile Diabetes Research Foundation seem to be in different places. The foundation takes the view that the condition is best managed through primary care. As I said, we must upskill, ensure that the signs and symptoms are better understood, and use the clinical skills of GPs more effectively.

[Barbara Keeley]

Will the Minister give way?

[Mr Burstow]

I will give way in just a moment—I want to pick up on another point. I am surprised that the hon. Lady keeps going on about GP commissioning, when it was her Government who introduced practice-based commissioning. We are building on those reforms, and see them as an essential way of ensuring that taxpayers’ money is most effectively geared to delivering the best possible health outcomes for people with diabetes and other conditions.

[Barbara Keeley]

I do not think that Opposition Members are alone now that the Royal College of General Practitioners has expressed major concerns about GP commissioning and is pleading with the Health Secretary to put the reforms back.

I want to raise a point about local authorities and coterminosity with PCTs. We have a better coterminosity situation—and have struggled to get to it—but I know that some local authorities around Greater Manchester will be faced with having not one but two, four or five GP consortiums. As I said, health and social care integration is working in places such as Knowsley and Torbay, where great work has been done to bring things together. The fragmentation is coming out because of the nature of the reorganisation.

[Mr Burstow]

Again, I do not recognise that characterisation, in that coterminosity does not exist in many parts of the country under the current model. As the hon. Lady has rightly said, integrated models of care, and collaborative approaches and behaviours are not present in many places. The desire and intent behind the White Paper is to make them the norm.

I want to do justice to this debate. We could have a debate about the White Paper, and I am sure that at some point the Opposition will choose to do so. If they do that, we would be only too happy to meet them point by point, but I want to talk about some of the key developments that will bear down on this problem and really help to transform lives.

The coalition Government want to make a significant move in respect of their commitment to introducing a much stronger payment system for children’s diabetes services, which will help to bring them out of the shadow of other NHS services. As a start to the process, a new mandatory tariff, which we plan to introduce in stages from April 2011, will recognise paediatric diabetes care as a clear and discrete specialism within the NHS, and will provide a clear funding stream to support such services over the long term.

At present there is a non-mandatory tariff, which was rushed in for April 2010, but it is wholly inadequate because it fails to take into account the complex nature of paediatric care, which this debate has articulated. As a result, under the current system, many paediatric diabetes services either continue to be under-resourced—we have heard about that today—or are funded through other budgets. Hence, they can sometimes be relegated to a second-class status in the NHS. The new tariff, as part of a more patient-focused funding model, will help to put us on the right track.