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Mr George Howarth (Knowsley) (Lab)
It is a pleasure to serve under your chairmanship, Mrs Riordan.
First, I would like to acknowledge the help that I have received in preparing the background information for today’s debate. I particularly wish to mention the Juvenile Diabetes Research Foundation, Diabetes UK, the Eye Health Alliance, the Aintree University Hospitals NHS Foundation Trust in my constituency, and last, but by no means least, my daughter Siân, who suffers from type 1 diabetes and who has helped in the preparation of what I am about to say.
In the past, too often health policy discussions have focused on hospitals, doctors and nurses, with no real recognition of the millions of people who live with long-term conditions. Over the past few years the situation has improved, and now we at least recognise that health care is as much about helping patients to manage their conditions more effectively throughout their lives as it is about mending broken bones in hospital, although the latter is, of course, important. Nevertheless, we are on a long journey. We now recognise that demographic pressures and lifestyle-related conditions, including obesity and the rising incidence of diabetes, pose major public health risks, yet every time we make that statement we risk overlooking a serious and growing problem, because it ignores people with type 1 diabetes—many of them children—whose condition cannot be prevented by changing their lifestyle.
So, what is type 1 diabetes? It is a chronic, life-threatening condition that occurs when the body’s immune system attacks insulin-producing cells in the pancreas. A normal, healthy body will regulate blood glucose using insulin, but in someone with type 1 diabetes, the blood sugar level can go too high or too low because there is insufficient, or no, insulin to control it. Insulin is the hormone that transfers glucose from the bloodstream into the cells to be used for energy. Type 1 diabetes is typically diagnosed in childhood. The peak age is between eight and 12 years, although in some cases it can be much higher. I heard today of a case in which the age on diagnosis was 23. As a result, most patients with type 1 diabetes live with the complications of uncontrolled blood sugar for many more years than those who suffer from type 2. Unlike type 2, type 1 diabetes is not in any way linked to being overweight, to lack of exercise or to any other lifestyle factor. Living with type 1 diabetes involves a relentless process of managing the condition, and there are no days off.
People with the condition have to rely on a programme of finger-prick blood sugar tests and insulin pump infusions or injections up to 10 times a day, just to stay alive. Although these tools prolong life, they are not a cure. Even with insulin injections, type 1 diabetes brings devastating long-term complications, including heart disease, stroke, blindness, kidney failure and, in some cases, limb amputation. In addition, there is a small but very real chance of sudden death, and life expectancy is reduced by about 20 years.
I recently tabled a question to the Department of Health about its estimate of the number of people with type 1 diabetes. It turns out that the Department does not have an estimate of the total number, but extrapolations from quality outcomes and framework data suggest that the figure might be about 230,000, which is some 10% of the diabetes population.
Caroline Flint (Don Valley) (Lab)
It is important that the Department of Health and the coalition Government show leadership in this area. Is my right hon. Friend not concerned by the latest figures, which seem to suggest that the incidence of type 1 diabetes is increasing by about 4% a year, with the biggest increase in children under five, in whom there has been a fivefold increase in the past 20 years? Does my right hon. Friend not agree with me that we need assurances from the Government that they will look into what is happening, and will look at what can be done both to tackle the condition when children are diagnosed, and to understand why it is occurring and increasing in the way that it is?
Mr Howarth
I am grateful to my right hon. Friend for that intervention. The figures that she has cited are correct, and I was about to go on to mention them.
I have mentioned the Department of Health’s estimate. The Juvenile Diabetes Research Foundation cites estimates that put the number of children and adults living with type 1 diabetes as high as 390,000, or 15% of the diabetes population. In a political context, that translates into approximately 500 people in every parliamentary constituency. There seems to be more consensus on the number of children and young people with type 1 diabetes: about 25,000 children in the UK have it. That means that as many as one child in every 700 has type 1 diabetes. Of all children and young people with diabetes, 98.6% will have type 1.
It is also worth noting that although the condition is not linked to lifestyle factors, the incidence of type 1 diabetes is increasing by about 4% a year. The biggest increase is in children under five, in whom there has been a fivefold increase in the past 20 years, as my right hon. Friend has said. To summarise, this is a complex condition that affects children and young people in significant numbers, and it has a profound impact on their lives.
Diagnosis often occurs on the occasion of the first major episode of diabetic ketoacidosis, with symptoms typically evolving over a 24-hour period. The symptoms are predominantly nausea and vomiting, pronounced thirst, excessive urine production and abdominal pain that might, in some cases, be severe. Left undiagnosed and untreated, diabetic ketoacidosis is fatal. In 2009, an eight-year-old boy died from undiagnosed diabetic ketoacidosis. An ambulance was called but, as it was thought that the boy was a low priority, was never dispatched. When an out-of-hours GP was called, the boy was diagnosed with swine flu and prescribed Tamiflu. He died days later. A major problem is that many GPs are not properly trained to recognise the symptoms and make a diagnosis, and there are countless examples of young people being treated for an entirely separate condition, when the real problem is that diabetes has been uncontrolled and not even recognised, and appropriate action therefore not taken.
As well as creating the risk of a major catastrophe and having ongoing consequences for physical health, type 1 diabetes has a profound effect on the lives of children with the condition and their families. It pervades every aspect of a sufferer’s life. Everything that the person eats, drinks and does involves a mathematical equation. For the child and their family there are no days off, and even a few hours of trying to forget can be dangerous. Living with this complex, chronic condition is at times very distressing and stressful for many parents, and it is a source of constant anxiety, and often embarrassment, for young sufferers.
A survey carried out by the parent group, Children with Diabetes, showed that a significant majority of parents had seen their household income decrease, and that there had been a notable impact on family life. The potential for long-term complications is clear and present, and is obviously a worry for many parents. Many children worry about being seen as different from their peers, and a disturbing 50% of parents say that their children have been bullied as a result of having type 1 diabetes. Although children and young people with diabetes are different in the sense that they continually have to manage their condition, they are like any other young person in most other ways. They are subject to the same pressures and temptations, such as the ones to use alcohol or illegal drugs, which could be fatal in their case.
Young people with diabetes have also succumbed to a trend that is informally known as diabulimia. They manipulate their insulin to achieve significant weight loss. In 2004, in “Living with Diabetes”, Susan Caltieri bravely explained how the phenomenon had affected her life. She said:
“Instead of dealing with the root of the problems—the relationship I had with my diabetes—1 started blaming my weight, thinking the only way to achieve my ambitions of getting on to the stage was to be skinny. I discovered that by decreasing my insulin and eating less, I could lose weight quickly. Eventually there were periods of time where I didn't inject insulin at all and could lose up to half a stone a day. 1 had developed a serious eating disorder...I don’t know how I actually survived. I was completely oblivious to the damage I was doing my body.”
Caroline Flint
I thank my right hon. Friend for giving way a second time and I congratulate him on securing this debate. What he is outlining to us is a worrying trend among young women who feel that they have to be a certain size to be attractive. Does he not agree that it is also worrying that we have heard nothing from the coalition Government, in the form of a public health measure, about how they will ensure that young people, particularly young women, with type 1 diabetes are supported so that they understand the dangers to their health of not taking their insulin? Moreover, how will the support that is there be affected by the unnecessary change to GP commissioning at a local level?
Mr Howarth
My right hon. Friend makes a strong point. It is a worry that the change in the system, which will vest more power with GPs, could have a negative effect; I hope that it does not. Will the Minister give serious consideration to the way in which conditions such as diabetes will be managed in those changed circumstances? I fear that GPs’ knowledge of the subject is too sketchy for them to be able to deal with the matter properly. As and when a Bill comes before the House, I will—if my party’s Front Benchers do not—table some amendments on the issue. To be fair, I should mention that the Minister for Equalities, the hon. Member for Hornsey and Wood Green (Lynne Featherstone), has raised the important issue of young women and body size and image and so on. The idea that young women have to be stick-thin to be attractive or employable is outrageous. I had not intended to raise this subject, but I have discussed it in the past with my right hon. Friend the Member for Don Valley (Caroline Flint) and the Minister for Equalities.
Although this story does not involve a diabetic, it is related to the issue that has just been raised. A young woman spent her entire life, from the age of seven, training to be a violinist. She performs in concerts and provides backing music for groups. I am talking about the way in which rock groups have attractive young women playing a violin and a cello behind them. This particular young woman had to perform at a festival. The agent who recruited her said that one of the requirements in the contract was that she got down to size zero. I am not talking about a pop star or a model—although I condemn such behaviour in those cases as well—but a serious musician who was expected to get down to that sort of weight. It is outrageous, and I am so glad that my right hon. Friend the Member for Don Valley raised the matter.
Diabetes UK has estimated that the number of young people with type 1 diabetes who manipulate their insulin to achieve weight loss could be as much as one third of all patients. Although it is possible that the figure may not be that high, discussions that I have had with one of my local hospitals—Aintree University Hospitals NHS Foundation Trust—and specifically with Maureen Wallymahmed, revealed that it is extremely hard to quantify the problem because young people tend to hide the condition from medical staff. I warmly commend the work of the unit at Aintree. It manages the transition in treatment from childhood through to adulthood, which is another area that requires attention.
The causes of the trend to manipulate insulin are deeply ingrained in society and cannot be simply addressed. One thing is clear, though: young people with type 1 diabetes need easily available help and constant access to support. Where appropriate, that should include access to relevant psychological therapies.
One obvious difference between young people with diabetes and older patients is that those young people spend far longer periods of their lives living with variable blood sugar levels. Consequently, the ongoing physical risks that they face typically occur much earlier in life than with type 2 diabetic patients. Complications can include heart disease, stroke, blindness, kidney failure and limb amputation.
For the purpose of this debate, I shall take one example of those complications. Diabetes can affect vision in several ways, but the most serious impact is generally on the blood supply to and within the retina. Most sight loss due to diabetes can be prevented, but it is crucial that the condition is diagnosed early and treated promptly. Up to one third of patients with diabetes will have background diabetic retinopathy, which needs to be monitored carefully as it can develop into irreversible sight loss. Early detection through screening and treatment is vital to prevent unnecessary sight loss. The Department of Health figures suggest that more people with diabetes are now being offered screening for retinopathy than ever before and to a higher standard, which is very welcome. However, the speed of progress appears to vary significantly across the country, with some primary care trusts not offering screening to old people with diabetes, which is a cause for concern.
In these difficult financial times, it is worth focusing on the cost of diabetes management to ensure that we are making the most of all available resources across the whole health system. Treating diabetes and its complications is extremely expensive. Each year, the NHS spends 10% of its budget on the condition. Given the lack of reliable data it is difficult to put a definitive figure on the cost to the NHS of treating type 1 diabetes. However, we know that once diagnosed, type 1 diabetes requires intensive control for the rest of the person’s life, and with the risk of complications, the cost of treating the condition in the NHS is high.
One of the major challenges that the NHS faces is to help patients manage their conditions more effectively, so that the necessary admissions for acute care can be avoided. Better management not only saves huge potential costs, but makes a significant contribution to improving the lives of patients with type 1 diabetes. To achieve that, we need to ensure that funding within the NHS supports care pathways and innovations that help patients manage their condition effectively, which means that medical research is vital.
At present, there are no definitive answers about what causes type 1 diabetes or how we can cure it. The only way that a cure will be found is through greater investment in medical research. In 2009, the Government funding bodies—the Medical Research Council and the National Institute for Health Research—committed £51 million to research to tackle the growing problem of diabetes. Of that amount, only £6 million was applicable to type 1 diabetes. By contrast, last year the United States Government spent $150 million, the Australian Government $36 million and the Canadian Government $20 million on funding world-class research to cure, treat and prevent type 1 diabetes.
We could take the easy option and leave it to others to carry out the research, but aside from the dubious ethics that that would involve, it would of course miss the point that investment in medical research provides wider economic gains as well as obvious health benefits. A recent report by the Office of Health Economics, a health think-tank, concluded that a £1 increase in UK Government or UK charity spending on medical research could lead to an increase in private research spending by the pharmaceutical industry of between £2.20 and £5.10. Other research by the Wellcome Trust has estimated that every £1 spent on public or charitable medical research yields additional GDP for the UK that is equivalent to a net return of 30p per year in perpetuity.
Once innovative treatments or technologies are available, it is essential that patients with type 1 diabetes have access to them. Insulin pump therapy is internationally viewed as the gold standard treatment for type 1 diabetes, reducing the risk of hypoglycaemia—very low blood sugar—and long-term complications. Despite that, however, less than 4% of the UK’s type 1 population use a pump—far behind Europe, at 15% to 20%, and the United States, at 35%. Given the long-term costs of managing the complications of type 1 diabetes and the immediate-term costs of unnecessary unplanned hospital admissions, the UK figure has all the hallmarks of a false economy. Indeed, I have heard of instances of young people being refused a pump because the control of their blood sugar levels has not been considered bad enough. Clearly, there is an issue that needs looking at, regarding the advice that medical practitioners are following.
Guidance from the National Institute for Health and Clinical Excellence recommends that insulin pump therapy is used as a treatment option for adults and children over 12 if attempts to meet long-term blood sugar levels fail or result in the patient having disabling hypoglycaemia. The 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.
However, despite that NICE guidance on eligibility, there is considerable inequity in insulin pump provision across the country. In some areas, less than 1% of people with type 1 diabetes use an insulin pump. Figures released earlier this month by the Medical Technology Group indicate that there is indeed a “postcode lottery” of insulin pump access across the UK, with access varying from 0.4% of the type 1 population in Luton to 17% in Blackburn.
Only five of 113 primary care trusts that were questioned had any kind of strategy in place to implement the NICE guidance on insulin pumps in line with their statutory duty to adhere to NICE technology appraisals within three months of issue. I hope the Minister will follow up that issue with PCTs. Decisions about funding for pump services seem to be based on cash-flow benefits rather than on the benefits that such services would provide for patients.
Another exciting development that offers real hope to patients, as long as they are able to access any future solution, is the artificial pancreas—the first realistic hope for a cure for type 1 diabetes, albeit a mechanical one. Vital research supported by the Juvenile Diabetes Research Foundation is working towards developing an artificial pancreas system, a technology that will do the job of a healthy pancreas. Such a system would provide exactly the right amount of insulin to the body exactly when it is needed.
The artificial pancreas system requires three things: an insulin pump, a continuous glucose monitor and an algorithm. Insulin pumps and CGMs are already available and researchers from the Juvenile Diabetes Research Foundation have developed an algorithm that will allow the two devices to communicate with each other. Artificial pancreas systems are expected to be publicly available within the next five years.
However, there is a real risk that while people with type 1 diabetes in the US and other countries will be able to use that new technology, people with type 1 diabetes in the UK will miss out, because they do not have access to an insulin pump or a CGM, and because the structures and expertise are not in place here to support the existing technology, let alone the next sophisticated technological development. Rectifying those problems would be a real indicator that we are serious about having an NHS that has the principles of excellence, efficiency and equity at its heart.
I recognise that the cost of an insulin pump, which is about £3,000, is significant. However, given that NICE recognises the value of bariatric surgery—what is normally known as the insertion of a gastric band—as a mechanism to tackle type 2 diabetes and given that such surgery costs up to £7,000, we need to get the costs of adopting innovative medical technology such as an insulin pump into perspective.
In conclusion, what needs to be done? Given that many cases of type 1 diabetes go undiagnosed, we need to improve awareness among GPs, so that the condition can be diagnosed in the first place. There is an argument that GPs should be given a series of protocols on how they should deal with certain symptoms. Increased understanding of the nature of type 1 diabetes is particularly important given that Government proposals envisage that GPs will take the responsibility for commissioning care as well as being the first point of call for diagnosis.
In addition to the early identification of diabetes, we need to encourage commissioners to plan adequately for treating the long-term complications. That would include ensuring adequate provision for retinal screening, to close the gap between those being offered screening and those actually receiving the test. In particular, we must address the “postcode lottery” that exists in relation to that procedure.
Above all, we need to ensure that patients have easy access to care that is shaped around their personal needs. In many cases, that will mean providing access to a multidisciplinary team, with patients enjoying a consistent relationship with advisers. In addition, psychologists and all those involved in the care of vulnerable young people need to understand the risks of behavioural complications, such as diabulimia, and the social pressures that can lead to those complications.
It is hugely important that GPs are made aware of type 1 diabetes. If they do not know about the condition, they will not recognise it; if they do not recognise it, they will not diagnose it; and if they do not diagnose it, the consequences for some young people could be fatal.
We therefore need to be imaginative in the way that the NHS funds and provides new therapies. There are numerous ways to provide advice. The important thing is that patients get that advice when and where they need it. Although special hospital units, such as the one at Aintree that serves my constituency, will continue to play a vital role, we need to be open to the idea of using other locations as a means of delivering care, particularly in the primary care sector.
Ongoing telephone support, community-based pharmacy care and mobile technology all have a role to play. The key is to ensure that we integrate these solutions, so that they work effectively across the local health economy to avoid unnecessary hospital admissions and reduce long-term complications.
If I have painted a gloomy picture, perhaps I can conclude by making a slightly more upbeat point. The dangers and risks to young people of type 1 diabetes are great, and recent developments can make them even more serious, but there are examples of leading sportsmen and women, entertainers and a host of other people successful in their chosen professions who manage to cope with type 1 diabetes, have a life and career and even bring up a family. In many respects, their lives exceed their expectations and those of society. With help, type 1 diabetes can be managed, and young people who have it can achieve everything in life of which they are capable. Our responsibility is to ensure that they get that help.
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—
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.
Siobhain McDonagh (Mitcham and Morden) (Lab)
I can assure you, Mrs Riordan, that I will not speak for that long.
I want to highlight the impact that diabetes, like all chronic conditions, has on not only the individual, but their family, friends and community. That is particularly relevant, given the age at which people are being diagnosed with type 1 diabetes and the huge increase in the number of children who are diagnosed with it. About 25,000 children in the UK have type 1 diabetes. Some 98.6% of children and young people with diabetes have type 1. The incidence of type 1 diabetes increases by about 4% each year. The biggest increase is in children under the age of five, among whom there has been a fivefold increase in the past 20 years.
When children are diagnosed with diabetes, it has a profound effect on their families. The parent group, Children with Diabetes, did a survey of parents, in which 85% said that their household income had gone down; 83% said that they had problems with their marriage and family life; 84% said that their child’s treatment was affected by where they lived; 71% said that they were concerned about long-term complications; 60% said that their children were most worried about being seen as different, as the hon. Member for Torbay (Mr Sanders) said; and 50% reported that their children had been bullied at school as a result of suffering from type 1 diabetes.
My right hon. Friend the Member for Knowsley (Mr Howarth) asked me to contribute to the debate because of its importance to him as an individual. That made me think about constituents I have seen and the problems that they have had. My hairdresser, who is a very important person in my life, told me that his niece, Sophia, was diagnosed with type 1 diabetes at the age of five. There was no history of diabetes in the family. The family spent ages completely terrified, wondering what the problem with their young daughter was, only to find that she had type 1 diabetes. Her mother, Nicole, tells me that she came home on the day of diagnosis with a load of equipment, not knowing what to do or understanding the consequences. She knew that she had to give up her employment, because she could not control the diabetes and did not know the consequences for her daughter. Her husband had to accept the fact that, unlike other married couples, they could not leave their daughter with other people, because those others were frightened about knowing how to care for her. Nicole was concerned about just not knowing how the family would approach routine family life, celebrations, festivals and even Christmas.
Nicole told me today that the single thing that was of benefit to her was the recently set up parent group at St. George’s hospital in Tooting. The scales fell from her eyes as the clinical paediatric nurse, Richard Todd, told her how she could cope with Christmas—all the food and treats of the period—and how she could have access as a carer to discount cards, which no one had told her about in the past, although her daughter has had type 1 diabetes for seven years. She could also just meet other families and mums, and discuss the consequences, for them and their family, of their children’s diabetes. If there is anything I would ask the Minister to do, it is to consider the fact that St. George’s will not carry on the parent support service, because it does not feel able to keep Mr Todd’s services. I am sure that there are many demands on the hospital, but that parent group—just from one parent’s perspective—had an enormous impact.
The other time when a problem begins to arise in a family’s life is when children transfer from primary to secondary school. While having a pacemaker, or another condition, might affect a child’s school preference place, despite having type 1 diabetes Sophia did not obtain a school place in the Minister’s constituency, although her mum and dad wanted her to go to school there so that they could be close at hand if anything happened and so that all the burden would not fall on the school. At the school, in turn, there was a fear about having Sophia there. Of course, with the transfer to secondary school the issue of puberty comes into play, with its impact on the treatment of type 1 diabetes, and the need to understand whether mood changes result from the illness or the normal changes that any teenager goes through.
Having a child with type 1 diabetes can also have a financial impact. I know from other families who have been to see me that that can involve simple things such as school uniforms. One mum who came to see me bought the uniform for her daughter who was going to secondary school, only for her to be diagnosed with the condition over the summer holidays; in that period she lost two or three dress sizes. Apart from the sheer fear that that must have created, the financial impact for a single mum on benefit is huge. There are implications for all the things that we would want to happen: getting mums back into work; flexible working; the need to work close to home; and the need for the wider family to understand things. I am sure that that is only a small and perhaps secondary consideration, but in the treatment of this chronic disorder, diagnosed in children so young, it has a huge impact for the wider family. The soft services of parent groups, which might be seen as less important in times of financial restraint, are crucial in enabling parents to understand the difficulties and problems, and in preventing some of the problems that other families have probably been through.
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.
The Minister of State, Department of Health (Mr Paul Burstow)
I congratulate the right hon. Member for Knowsley (Mr Howarth) on securing the debate and, indeed, on taking part in last week’s debate. He has brought a sharp focus to an issue that is often not debated—even when we discuss diabetes, it gets rather lost in the broader picture.
I have a constituency interest in the matter. Before the general election, a number of children in my constituency who were supported by Diabetes UK wanted to make me aware of what could be done in schools and families to support them better. There are beacons of hope and places that are doing exceptionally good things that make a huge difference. However, as has been well documented in the debate, there is clearly a lot of work to be done. I have a lot to say in response to the very many good points that have been made in the debate.
It is helpful that the debate is not just grounded in the technicalities of the issue, but grounded in the life experiences of individuals. We have heard such points made by the hon. Member for Mitcham and Morden (Siobhain McDonagh), the right hon. Member for Knowsley and, of course, my hon. Friend the Member for Torbay (Mr Sanders), who has direct experience of the matter. That is powerful because when it is done well, it helps to give a real sense of the difference that can be made to a person’s life—they no longer have to be defined by the condition; they can get on with their life. I hope we share that goal as we discuss how to shape services going forward.
I pay tribute to Diabetes UK and the Juvenile Diabetes Research Foundation, which, through the speeches of hon. Members from all parties, has contributed to the debate and does much well beyond that. This is a welcome opportunity to focus on a condition that does not get the same headlines as cancer, cardiovascular disease or, for that matter, type 2 diabetes. It presents a threat not only to children’s health but, as we have heard in the debate, to their well-being and, in turn, that of their families.
The debate has rightly focused on what we can do to improve matters. The right hon. Member for Don Valley (Caroline Flint), who understandably has had to leave to attend to other business, raised a few points with a policy emphasis that were rather churlish, but I understand that they were well meant. I am sure that she and I will have an opportunity to debate those on another occasion.
Mr George Howarth
I am loth to rise to defend my right hon. Friend the Member for Don Valley (Caroline Flint), on the grounds that she is more than capable of defending herself, but the key issue that she raised was not too party political; it was about how young women are viewed and how they respond to the pressures to conform to a particular body shape.
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.
Mr George Howarth
I recognise the problem to which the Minister refers, but Knowsley primary care trust and Knowsley council, for example, already have a number of integrated posts; the chief executive of the PCT is also the director of social services. The process that the Minister is seeking to create through the reforms to a large extent already exists in places such as Knowsley, yet it seems that they will undo what has already been created.
Mr Burstow
As the hon. Member for Worsley and Eccles South (Barbara Keeley) has already said from the Front Bench, that is not the norm but the exception. We want that to become the norm. The point is that that has not happened everywhere. We need approaches that ensure that we design services in ways that involve all the key players, including clinicians and local authority social services, where appropriate. That is the ambition of the White Paper.
We want to unleash the potential of GPs by aligning them much more closely as commissioners with the services. I note that the Juvenile Diabetes Research Foundation supports the White Paper and sees it as a key way to lever the changes that Members have argued for in the debate. It sees the reforms as an opportunity to secure things that are not delivered under the current NHS architecture, such as insulin pumps, and I certainly wish to ensure that that happens.
Mr Howarth
I apologise for making so many interventions, but I want to make this simple point. One of the consistent themes in this debate has been that the weakest link in the system for treating young people with diabetes is the service that GPs provide, particularly in diagnosing diabetes in the first place. I cannot see the logic, from a diabetes point of view, in handing all the power and control to people who do not understand the disease.
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.
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.
Mr Burstow
I will. The hon. Gentleman has listened to the whole debate, and I appreciate the fact that he has done that.
Mr Campbell
We have reached the point about money, and I can assure the Minister that the first concern of a parent of a child diagnosed with type 1 diabetes is the health of the child, not money. My hon. Friend the Member for Mitcham and Morden (Siobhain McDonagh) discussed support for families. May I ask what representation the Minister has made to the Department for Work and Pensions on disability living allowance, which is available to many families of young people with type 1 diabetes?
Mr Burstow
I obviously have many conversations with colleagues in the DWP, but as that is the first occasion on which that matter has been raised in this debate, and as I want to do justice to other speakers, I shall move on to ensure that I answer their questions.
Let us deal with family support more generally. The hon. Member for Mitcham and Morden took us through some of the statistics; the impacts on families’ lives are truly disturbing. We need to ensure that appropriate and tailored support services are in place, including the right support for carers.
I am concerned that where peer support services are provided, they are not given priority. However, not all peer support services need funding; they need willingness and support to ensure that they carry on. I would certainly commend peer support as one of the ways in which people can cope with self-care and the ongoing management of the conditions that have been discussed in this debate.
Let me deal briefly with emotional support for children in particular, and the children’s charter, which has been mentioned several times. My hon. Friend the Member for Torbay spoke about the impact of a diagnosis at a young age. Part of that comes back to providing proper emotional support in formal settings—schools and other settings. We must ensure better alignment in the way that we develop our thinking around public mental health strategies, and we will be saying more about that in a cross-Government strategy on mental health later this year. I am sure we will want to pick up, at least in thematic terms, on the public health issues in the White Paper that we will publish, also later this year.
I very much welcome Diabetes UK’s children’s charter, which will help to establish the kind of support that children and young people need to help them cope. Also, a guide has been developed to help commissioners ensure that children with diabetes receive the emotional and psychological care that they need.
In the last four minutes, I want to speak about insulin pumps. The right hon. Member for Knowsley rightly raised that key issue in the debate and in an article that he published today. The National Institute for Health and Clinical Excellence has clearly recommended pump therapy for children and young people if daily injections are not working. Frankly, I am disappointed and shamed that many primary care trusts are dragging their feet on making pumps available. That should have been sorted out; I should not have to come to this Chamber to explain why that has not been done, given how long the recommendations have been there. It is a pity that the delay was not challenged more in the past, and that the previous Government did not get around to sorting it out. I expect to see real improvement in this area as a result of the new funding arrangements that have been discussed in the debate.
My hon. Friend the Member for Torbay raised some important points about obstacles, and I want to ensure that, through the all-party group on diabetes, we have further conversations about what we can do to kick down those obstacles, and to ensure that the important research on artificial pancreases that is being done in this country is not undermined by the treatment not being available because there is not a route through the pumps. That point has been powerfully made in the debate, and I want to ensure that we follow through on it.
Research has been touched on in broader terms, and I want to mention a couple of examples of work that is being done at present. We are looking at how to provide better psychological support for children with diabetes, and how we can improve education and training in diabetes for children and families. We are also funding a major trial on the effectiveness of insulin infusion treatments versus standard injections. Alongside that, there is a vibrant third sector investing in research.
We have heard about work at Cambridge university to develop an artificial pancreas to reduce the risk of hypoglycaemia in children and adolescents. The link to telehealth that my hon. Friend the Member for Torbay referred to is important, and I want to ensure that the message is clearly understood and that we build it into some of the work that the Department is doing. I am about to run out of time, so I will have to write to my hon. Friend about international research.
Hon. Members raised points about schools. I shall elaborate in more detail by writing to all those who have taken part in the debate, but it is key that schools understand their responsibilities in respect of well-being and safety, and that they provide appropriate support for children who need to take medication at school.
The Government are determined to improve care for type 1 and type 2 diabetes. This is not something that we will put on the back burner. We have inherited a legacy but intend to build on and really improve those services.