Diabetes (Young People)

Adrian Sanders Excerpts

Wednesday 15th September 2010 Westminster Hall

[Mr Adrian Sanders (Torbay) (LD)]

I congratulate the right hon. Member for Knowsley (Mr Howarth) on securing this important and pertinent debate. It is timely, given that we have a new Government and a new Health Secretary with responsibility for the issue. This is a great opportunity for us to help him to help those with the condition. I register that I am a type 1 diabetic whose condition is controlled by injections of insulin.

Diabetes, whether type 1 or type 2, is a chronic condition for which there is as yet no cure. Type 1 diabetes is believed to be genetic, rather than a consequence of lifestyle; type 2 diabetes is firmly believed to be a consequence of lifestyle and diet, and not necessarily of genetic factors.

The treatment regimes for types 1 and 2 are slightly different. Treatment of type 2 is very much about diet, exercise and changing a sedentary lifestyle. Medicines might be introduced to induce what insulin the body still produces to work better, although injections of insulin are increasingly being prescribed for people with type 2 diabetes, particularly those who have had the condition for a long time. The type 1 diabetic is someone whose pancreas has effectively packed up and said goodbye, so in order to stay alive, they must take injections of insulin—there is no alternative. Medication is sometimes prescribed later in life to ensure that the insulin taken works a little faster or more efficiently. For those considered to be at risk of other complications that tend to come with diabetes, such as strokes or heart problems, statins and other such drugs can be prescribed.

Just under one in five people with diabetes has type 1. Most are likely to have been diagnosed before age 40; I have had the condition since my late 20s. This debate is about diabetes in young people, so I will focus on that. I am glad that I was not diagnosed with diabetes as a young person, because it has a major impact on a young person’s life, educational chances, social interactions and psychological attitude to life.

The typical treatment for somebody with type 1 diabetes is perhaps three injections a day of fairly fast-acting insulin, taken at meal times. Before going to bed, they might take a fourth injection of a slightly longer-lasting insulin to maintain their body’s balance through the night, when they are not exerting themselves and require a different type of insulin. There are dozens of types of insulin—fast-acting, slow-acting, mixed—and which insulin or insulin mix is right is a decision for the patient and their GP in light of their circumstances.

The condition changes with age. The first insulin that someone is prescribed is not necessarily the one with which they will continue later in life. New insulins come on the market all the time, promising better control and fewer complications, and from time to time the treatment regime is reviewed and the GP or consultant may recommend change. Of course, that can cause complications, as the effect of any change is specific to the person. I am sure that the right hon. Member for Knowsley will know, if his daughter has ever been asked to change her treatment regime, that a degree of adjustment must take place before the patient is comfortable with the new regime.

Many people with diabetes make contact with the health service only once a year. It is a condition that must be managed by the diabetic themselves. For 364 days of the year, they are their own consultant. They know their body better than anyone else, and they must take the decision whether to increase or decrease the dose according to how much energy they are expending or what type of food they are about to eat. Once a year, the diabetic has a medical check-up. Some good GP practices bring in people twice a year: once to see the GP, once to see a specialist nurse. Some diabetics might see a medical professional three times a year in addition to seeing their consultant in hospital, but most people who have been diagnosed and are living with the condition normally come into contact with the health service only once a year. It is vital, therefore, that at that point the health service can detect whether there is a problem, analyse what it is and make correct suggestions about any changes in treatment.

For young people of primary and secondary school age, one big problem is the stigma of diabetes. There are a lot of misconceptions out there about what the disease is, what it does and what the condition brings. A young person might be told, “I’m sorry, you’re going to have to inject yourself,” but there is a stigma to that. They need a clean, perhaps private environment in which to make that injection. Although great advances have been made in injection devices—some are disguised as pens—there is still a stigma attached to having an injection, even a small, subcutaneous one. They are not great big syringes, as they used to be in the old days, but even with those advances, there is still a stigma.

Injections are not the only part of it. A sensible diabetic will want to test their blood sugars, which means taking a blood sample and putting it through a testing machine so the reading can advise them what injection of insulin is required. A clean, discreet environment is needed, which is difficult to find for someone in school—far more difficult than for me, a Member of Parliament. That is another reason why I am glad I did not have the condition as a child.

There are three stages for a young person with diabetes. Often, in a primary school environment, they may be the only person with the condition. Kids are quick to pick up on somebody who is a little bit different or has special requirements. Often, the primary school might have difficulty coping with a child who has diabetes. Many cases are on record—Diabetes UK has done a lot of work to highlight the issue—in which primary schoolchildren have not been able to get teachers or other school staff to assist them with testing or injecting because the school insists that a parent come in to do so. Working parents simply cannot do that, so in some cases, parents have had to move children away from their desired school to a bigger school, or one that can cope with a child who has diabetes.

We then move to secondary school. Although secondary school is ever longer ago, we can perhaps remember what we were like as teenagers, and the reality is that people do not want to be different when they are at secondary school. They do not want to admit that there is something that they cannot do, particularly if they are male. The reality, however, is that, with the right treatment, there is nothing that they cannot do. However, if they cannot, for whatever reason, do what they need to do, they will have difficulties doing what they wish to do.

We then come to the third stage—higher education. Things are different again when people go up to university. They may break the link with their home-town medical support, whether it is a GP or a consultant. They suddenly come into a university environment, which is very different from the home environment. The encouragement to do all the things that a diabetic should not do, in terms of when and what to eat and how much to drink, becomes that much greater. Young students with diabetes have reported to me that whatever medical support services there are at universities lack an understanding of that pressure, so there needs to be some improvement in that area.

The right hon. Member for Knowsley rightly mentioned the NICE guidelines on insulin pumps, and it is worth realising what they say, because they are quite limiting, in terms of the number of people who can be prescribed pumps. The guidelines recommend that the therapy be used when every other treatment has failed. Someone who has not got on well with injecting insulin or medication will be put on an insulin pump as a last resort. The NICE guideline for children under 12 says that they

“can have access to insulin pump therapy if multiple daily injections are considered impractical or inappropriate.”

There are lots of incidences of young children finding that injections are impractical and inappropriate because their school cannot help them, but their cases do not always come to light.

The criteria are very narrow. In many respects, a child should be put on a pump as soon as they are diagnosed—that should be done straight away, no question. What seems to be holding us back is not simply the cost of the machine, which is about the size of an iPhone, and which is permanently attached, giving the wearer a small dose of insulin throughout the day so that they can go off and do everything they want without having to worry about syringes, needles and all the rest of the paraphernalia. What is important, however, is that pumps have proper back-up from technical and medical staff who understand them, and that is where there is a big gap. The all-party group on diabetes came across the case of a child on a pump who lives in Portsmouth, but who is supported by a hospital in Leeds.

[Claire Perry (Devizes) (Con)]

I apologise for missing the start of the debate, which is particularly topical, given that my hon. Friend the Member for Salisbury (John Glen) and I had a meeting with the JDRF this morning and discussed the very point that the hon. Member for Torbay (Mr Sanders) raises. I was struck by a number of points, which I hope that he will agree with. One is that the importance of what he has just said about managing the disease in a far more cost-effective and efficient way cannot be overstated, and we can have remote monitoring of blood sugar and dosage levels with a pump. The most shocking thing that I have heard is that although our wonderful scientists in Cambridge are developing an artificial pancreas, which is an amazing breakthrough that will mean a mechanical solution to type 1 diabetes, UK citizens will not be able to avail themselves of the technology. Pump usage is only at about 4%, including among the young group that we are discussing, but levels of pump take-up in the US and other areas are as high as 40%. It is absolutely self-evident from the point of view of cost-effectiveness and long-term treatment that the adoption of pumps should be a high priority—

--- Later in debate ---

[Mrs Linda Riordan (in the Chair)]

Order.

[Mr Sanders]

The points about take-up were also made extremely well by the right hon. Member for Knowsley. Getting in place the support systems for pumps will help those who make decisions about budgets locally to ensure that the equipment is there and in play for everybody who is prescribed one.

In a sense, the great hope for the future is a pump that also tests blood sugar, adjusts the dose accordingly and communicates, if the patient wishes, with a medical professional about what is happening to the patient’s body. When that happens, clinicians will be able to gather much more information from diabetics, rather than just hearing what they have to say. Of course, people will tell their GP, “I’m doing everything you said I should,” but the reality may be just a little different, so that new information will take things much further forward.

In conclusion, I have a couple of questions for the Minister. How much notice does his Department take of international comparisons regarding care and research? The hon. Member for Devizes (Claire Perry) mentioned the fact that take-up here is much lower than in the United States. Should that factor be taken into consideration when we discuss what are appropriate treatments and what budgets should be? What efforts are being made to co-ordinate international research into effective treatments and a cure for diabetes? A cure may be a long-term possibility, but it would be silly if several different countries, with several different groups of taxpayers, funded the same research at the same time. Some international co-ordination would be in everybody’s interest.

Once again, I thank the right hon. Member for Knowsley for securing the debate. I look forward to hearing the Minister’s response.

Several hon. Members rose—

[Mrs Linda Riordan (in the Chair)]

Order. I hope to call the Front-Bench speakers at 3.30 pm.

--- Later in debate ---

[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.