(9 years, 5 months ago)
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Lord Harrison
To ask Her Majesty’s Government what steps they are taking to assist those with type 1 and type 2 diabetes to educate themselves about the management of the disease.
Lord Harrison (Lab)
My Lords, I welcome the noble Lord, Lord Prior, to the fight to beat diabetes. He is a doughty warrior, as are all my other colleagues who join me today to focus on educating all diabetics—types 1 and 2—to manage their condition better through structured education and training.
Believe you me, managing diabetes is a pain in the neck. For someone with type 1 diabetes, it means constantly estimating how many carbohydrates you have eaten and figuring out the right amount of insulin to inject while taking into account the amount of physical activity you have taken. For someone with type 2 diabetes, it means learning how to treat the condition with diet and exercise, and possibly also coming to grips with having to take medication and insulin. For everyone living with diabetes, it means being aware of potential complications that can develop. It means not only keeping a careful watch over your blood glucose levels but having your cholesterol and blood pressure checked, looking out for your eyes and examining your feet. Everyone with diabetes needs to understand what the condition means for them in relation to holidays, employment, driving, maintaining a balanced diet and being physically active.
There are currently 3.9 million people living with diabetes in this country. If this trend continues, that will rise to 5 million by 2025. The NHS already spends 10% of its budget on diabetes but the majority of that is spent on treating complications that are largely preventable through good care. But when people do not have the necessary skills and knowledge to manage their condition, their risk of developing nasty complications such as heart disease or kidney failure shoots up. Such complications are not only expensive to treat; they are devastating for the individual and often lead to early death. For example, diabetes is responsible for more than 135 amputations every week, but diabetes-related amputations are avoidable. We can do more to help people reduce the risk of developing complications that result in amputation by offering the opportunity to attend diabetes self-management education.
When I was diagnosed in 1969, I was never offered any form of diabetic education. Like many people living with type 1 diabetes, I learned over many years of private trial and error how to adjust the insulin to what I was eating. Diabetes self-management education now has an opportunity to make a marked difference to diabetes care. It enables diabetics to take charge of their own care, reduces the risk of developing complications, improves individuals’ well-being and has the potential to save the NHS money and allow valuable resources to be deployed elsewhere. Despite these clear benefits, according to the latest data published by the National Diabetes Audit, fewer than one in six people newly diagnosed with diabetes has been offered access to a diabetes self-management course. This number is lower still for all people who are currently living with diabetes.
The All-Party Group for Diabetes recently did a year-long inquiry into the low take-up of diabetes education. We found that many diabetics had never been offered an opportunity to attend self-management education. We discovered that too few such courses were commissioned across the land. In my own Cheshire and Merseyside Strategic Clinical Network, only three in 10 diabetes patients said they had ever been offered access to a programme.
Even when diabetes education is commissioned, barriers arise. Too many GPs are lukewarm in encouraging patients to attend these education courses. Information about participating in them is too scarce, so patients do not always understand the benefits. Another barrier is that even where there is diabetes education, there are simply too few courses offered, so the newly diagnosed diabetic does not get on to the course in the first place, and thereby benefit. Other barriers include having the wrong places to meet for such courses or long periods of time off work. Could the Minister look into whether more corporate social responsibility might be taken, to the advantage of the firms involved, to encourage diabetics to take these courses as time off work to improve not only opportunities for themselves but the contribution they make to the firms they are involved in?
However, there is substantial evidence that these barriers can be overcome and uptake rates can be increased. The Health Foundation’s work on person-centred care and diabetes has demonstrated that in helping people help themselves, we can improve the monitoring of diabetics so that they self-monitor blood glucose levels, take appropriate medication and go for regular eye examinations. Its Co-creating Health programme showed how self-management support programmes have helped to improve the knowledge, skills and confidence—collectively known as patient activation—of people in managing their own condition. Diabetes UK has also outlined a series of strategies that are being used across the United Kingdom to dramatically improve the number of people attending. How does the Minister respond to what Diabetes UK has done?
Access to diabetes education is a real problem for everyone, but particularly children. We have programmes such as DAFNE for type 1 diabetics and DESMOND and X-PERT for type 2, but they are not tailor-made for children. Can the Minister say a little more about that and the carers involved? If a mother needs to inject a baby or a child, that produces potential psychological problems. We should be running education courses for carers as well, in my view.
We would also advocate education for healthcare professionals, who too often do not fully understand the opportunities that arise, especially when new technologies appear. Again, will the Minister address that in his reply? Is there also a role for pharmacies? I have found that one of the most useful places to get information on treating my diabetes is from the very helpful Morrisons pharmacy in Chester. Can we take opportunities such as that?
A big worry I have, which I hope the noble Lord might address, is that I do not know whether the very useful Patient Experience of Diabetes Services survey will persist. I understand that Jane Ellison, the Public Health Minister, is looking at it, along with the national clinical audit. Someone wrote to me recently following the diabetes think tank to say:
“At a time when we know the resources are tight, it is a crime not to capitalise, through patient education, on the biggest resource we have—the patients themselves”.
I wonder whether the Minister might reply to that.
I conclude by saying that we need to improve the outcomes for all people with diabetes and to reduce the cost to the healthcare system. Will the Minister explain how NHS England plans to deliver on its promise, made in the five-year forward view, to support people in managing their own health and to invest in self-management education courses? Will he commit to setting up the necessary infrastructure and governance arrangements to do that?
It was a great loss when Adrian Sanders, the former chair of the All Party Group for Diabetes, lost his seat at the last election. He told us that he had two constituencies: the one he lost at the election, and all the diabetics throughout the country. He served them well, and the Minister can do the same.
Baroness Manzoor (LD)
I congratulate the noble Lord, Lord Harrison, on securing this debate and on his insightful and well-informed views on the issues of diabetes. Like many in your Lordships’ House, I am familiar with the effects of diabetes as, unfortunately, a family member has a history of it. I therefore declare my personal interest in the disease.
Looking at the range of speakers in today’s debate, I am sure that diabetes in the UK will be covered very well. As I have recently taken on the brief of spokesperson on international aid and development, I thought that I would take an international perspective on the disease, which I hope will not throw the Minister off his stride. It is certainly not my intention to do that.
The next big issue in diabetes internationally will be TB-diabetes co-infection. However, before I move on to that area, I want to restate that our NHS spends about £10 billion on diabetes every year, equal to 10% of its entire budget. This is an important disease to research, diagnose and treat effectively in the UK. It should also be a priority to ensure that any variations in treatment—the noble Lord, Lord Harrison, alluded to this—are minimised across the population, particularly as there are currently 3.9 million people living with diabetes in the UK.
The International Diabetes Federation estimates that, worldwide, there are 387 million people living with the disease, equal to 8.3% of the global population. It also estimates that, by 2035, an additional 205 million people will develop diabetes. The World Health Organization estimates that in 2012 diabetes was the direct cause of 1.5 million deaths and projects that diabetes will be the seventh leading cause of death by 2030. The total number of deaths from diabetes is projected to rise by more than 50% in the next 10 years globally. These figures are scary—even more so when you consider that 80% of diabetes deaths occur in low and middle-income countries, many of which may already be ravaged with disadvantage, poverty and conflict.
We in the UK should take a lead in increasing global awareness of this disease through our meetings with the UN and the EU, so that sufficient resources are made available to address this epidemic. As has been seen in the UK, diabetes care is costly and has the potential to cripple any healthcare system. According to the International Diabetes Federation, $1 in every $9 spent on healthcare is currently spent on diabetes.
It is interesting to note that type 2 diabetes used to be seen as a disease of the rich world and that, when it started to affect the better-off in poor countries, it was perceived as a sign of development. Now, three out of four people with diabetes live in low and middle-income countries. This rise in type 2 diabetes is being driven by ageing populations, rapid urbanisation and lifestyle changes. In developed countries, most people with type 2 diabetes are above the age of retirement, whereas in developing countries those most frequently affected are aged between 35 and 64. This means that in low and middle-income countries, type 2 diabetes affects many more people of working age, which has a profound effect on economic productivity.
Of course, type 2 diabetes treatment and care are not yet routinely or widely available in developing countries and, when treatment is available, it is rarely free. For individuals in developing countries, the out-of-pocket costs to treat type 2 diabetes are very high, often leading households to sell their possessions to pay for their treatment. In India, for example, treatment costs for an individual with diabetes make up, on average, 15% to 20% of household earnings and many poor people often cannot afford to get treatment or cannot access it easily.
At a national level, the type 2 diabetes epidemic threatens to overwhelm health systems and, potentially, to reverse development gains made in low-income countries—countries where we are spending a lot of money. Therefore, through DfID, more targeted investment is needed to support fragile health systems and stretched national healthcare budgets and to prevent economic progress from being undermined.
However, there is yet another threat. Low to middle-income countries now face a double burden of disease: rates of non-communicable diseases, such as type 2 diabetes, heart disease and stroke, are on the rise, but at the same time low to middle-income countries are still grappling with high burdens of infectious diseases, such as TB, HIV/AIDS and malaria.
In TB-diabetes co-infection, high blood sugar levels suppress the immune system, making individuals with latent TB—someone who does not have symptoms, is not sick and cannot spread the disease to others—more at risk of developing active TB. This is similar to how HIV undermines the immune system and makes individuals living with the virus more susceptible to developing TB. People with type 2 diabetes are three times more likely to develop TB, and type 2 diabetes is responsible for causing an estimated 15% of all TB cases. Brazil, China, Indonesia, Pakistan, India and Nigeria together account for 52% of people living with TB and 50% of all people living with diabetes. This is important for the UK, because of the strong ties that we have with these countries, and we must also not forget the fact that some parts of London have the highest incidence of TB in Europe.
What we are seeing happen now with TB-diabetes is similar to what we saw happen with TB-HIV. When HIV rates rose in the early 1990s, with the immune systems of people with HIV being weakened, that caused TB rates to skyrocket, particularly in Africa. We must make sure that history does not repeat itself by tackling TB-diabetes head on. Failing to act could lead to significant increases in avoidable disability and early death and could have disastrous consequences for health systems. There needs to be more integration between TB and diabetes programmes, similar to how it has been essential to integrate TB and HIV programmes. Perhaps the Minister could reassure us that NHS England in the UK has collaborative frameworks in place to enable this to happen. Could the Minister also reassure me that the Department of Health works collaboratively with DfID to develop policies on TB-diabetes and could he say whether those policies enable more co-ordination between programmes and countries with a high burden of TB and escalating rates of diabetes?
Finally, I know that preventing diabetes and promoting the best possible care for people with diabetes are a key priority for our Government, which is to be welcomed. However, not only does more need to be done to educate our own population about type 1 and type 2 diabetes, but we must also ensure through our aid programme that this epidemic is not forgotten. We are world leaders in providing excellent health services and we have a significant and well-developed research base. That puts us in a strong place to provide a global leadership role and we should embrace that in this key area.
Baroness Masham of Ilton (CB)
My Lords, I thank the noble Lord, Lord Harrison, for initiating this debate. I consider him an expert on this subject. If one has a long-term condition, one knows at first hand the ins and outs of the condition and, if one accepts the situation, one knows how important it is to look after oneself to the best of one’s ability, but not everybody who has diabetes is like the noble Lord. Many people deny having it and are fearful that it will interfere with their life, their job and their insurance.
My husband was found to have type 2 diabetes after he had a stroke. It was never decided whether the stroke triggered the diabetes or the diabetes triggered the stroke. It was not an easy time because my husband loved food, such as ice cream. I found a place which made wonderful ice cream, and some of it was specially made for diabetics. Are these special foods suitable for diabetics? I hear it is debatable.
One of my friends in your Lordships’ House went for an occupational health check up and it was found that he is diabetic. It was suggested that he went for a teaching session at St Thomas’ Hospital, but his GP said that it was not necessary and that he would see to it. The receptionist was difficult about making a suitable appointment, and the result is that he has not had proper advice and is not testing himself.
I cannot stress enough the need for prevention if at all possible as diabetes is complex and needs careful attention as it progresses. It is important that NHS England sees that CCGs are looking after their diabetic patients. The situation for the NHS is chronic. In the UK, there are currently 3.2 million people living with diabetes, which costs the NHS £10 billion in direct costs and £23 billion in indirect costs. One in seven hospital beds is occupied by a diabetes patient. By 2025, the estimate suggests that there will be 4 million people living with diabetes. NHS England recently launched the national obesity and diabetes prevention programme. It is a joint initiative between NHS England, Public Health England and Diabetes UK and aims significantly to reduce the 4 million people in England expected to have type 2 diabetes by 2025. It is good news that these bodies are working together instead of struggling in isolation. If all patients were able properly to manage their condition, many complications could be avoided.
Just think of having diabetes and suffering from dementia. One in four people admitted to hospital with heart failure, a heart attack or a stroke has diabetes, and every week there are 100 amputations as a result of diabetic complications. It is clear that the condition is not always managed properly. I have seen various numbers about amputations across England in the research done by the All-Party Group for Vascular Disease. Care is very patchy across the county. Will the Government try to improve the treatment and results of poor hospitals so they reach the standards of the best? There should be a national standard across the country. In London, at hospitals such as St Thomas’ and King’s College Hospital at Denmark Hill, the results are good, while in the West Country and some places in the north the results are poor. There are elements of a patient’s regime which should be managed and balanced: food, exercise, the correct medication and no smoking.
If a person is on insulin, they will know that different types of insulin can act very differently in different people. Insulin regimes suitable for individual patients are tailored by diabetic care teams and are different for both type 1 and type 2 patients, as they have separate needs. I found, with my husband’s different complications, that the specialist diabetic nurse was invaluable. Things could get very complicated, and being able to telephone and get advice was very important. I only wish that all health trusts realised how important specialist nurses are for specialised conditions, of which there are many.
It is good that technology is improving and is now available so that patients can gain an instant reading of their glucose levels. Any programme of education for people with diabetes should include information and an explanation about the different technologies and treatment options available.
Ongoing research is so important for these costly long-term conditions. I read recently that type I diabetes can be reversed with a cheap and effective inoculation that has been used to treat tuberculosis for a century. Will the Minister look into this and perhaps write to us about it so that we know whether it is accurate? It would be good news for patients, but it must be accurate otherwise their hopes may be raised falsely.
Yesterday, I met Ben Moody from the Juvenile Diabetes Research Foundation, Dr Martin Tauschmann and Dr Hood Thabit, who are part of a team at the University of Cambridge doing work on the artificial pancreas, which connects an insulin pump to a continuous glucose monitor so that it automatically delivers just the right amount of insulin at just the right time. It would take away a lot of the burden for type 1 diabetes, as people with type 1 might do six to 10 injections, and a similar number of finger-prick blood checks, a day. They have to count carbohydrates in every meal and cannot exercise, eat or drive without taking into account the effect of their condition. It is positive and good that experts are working to improve the lives of people with diabetes, which is an increasing worldwide problem.
Baroness Young of Old Scone (Lab)
My Lords, I thank my noble friend Lord Harrison for prompting this debate and for so eloquently telling the House about how hard a job it is for people with diabetes to manage their condition on a day-to-day basis. I also thank the noble Baroness, Lady Masham, for continuing with that theme. It is not an easy condition. I should declare an interest as chairman of Diabetes UK.
Previous speakers have highlighted how diabetes of all types is a very serious and expensive condition, affecting 3.9 million people and their families in the UK—a figure that continues to rise. Diabetes impacts not only on people but on the NHS: it now accounts for 10% of the NHS budget, and 80% of that is spent on the complications associated with diabetes. That is a pretty staggering sum—80% of £10 billion—and it is heartbreaking that some 80% of the complications are avoidable. So we are talking about big money being spent on complications such as blindness, stroke, heart disease, kidney failure and, ultimately, premature death, many of which are avoidable. Fundamental to this is that people with diabetes need to be supported and educated about their condition, so that they are engaged and encouraged to manage it effectively and reduce the risk of complications, for both their own good and that of the NHS.
Managing your condition on a day-to-day basis is a hard task, and there is remarkably little help in some cases. There are 8,760 hours in a year, and for only three of those are you in front of a healthcare professional. The remaining 8,757 hours are up to the person with diabetes. It is a very technical condition, which needs hour-by-hour management of diet, medication and physical activity to make sure that the magic blood glucose level is kept healthy and steady. It requires knowledge, engagement and skills, yet less than 16% of newly diagnosed people with diabetes—both types 1 and 2—are offered any formal education or learning programme at all. Less than 3.4% of newly diagnosed people take up programmes. Does the Minister agree that that is unsatisfactory and lamentably low, when so much is at stake in terms of both the individual and the pressure on the NHS?
Why is education for self-management not offered to more than 16% of people? First, there is a lot of mythology about the costs. A programme for a person with type 1 diabetes costs about £308; for type 2 diabetes it is somewhere between £65 and £75. It is not an insignificant cost bearing in mind the numbers of people we are talking about, but education for self-management is hugely effective. Department of Health research shows that an education programme for type 1 diabetes could save the NHS £48 million a year. Other evidence shows that the savings from an education programme for type 2 diabetes could be as much as £367 million per year. Yet we see that the up-front cost of the programmes is a disincentive to commission sufficient education, and there are just not enough programmes around. Commissioners are concerned about short-term costs rather than seeing the longer-term savings that would result.
Offering programmes is only one issue; take-up is the other. When programmes are offered, why are they not taken up by more than 3.4% of people? First, people with diabetes are not always told when they are diagnosed just how serious their condition is. We still get stories from people with diabetes who describe their moment of diagnosis, mostly in general practice, as being told that they have “a touch of diabetes”. That is like being “a touch pregnant”—it simply does not exist. If you have diabetes and are not given proper care, support and education to help you manage your condition, you run the risk of developing the serious complications we have talked about.
Education is also not taken up because sometimes it is provided in a rather traditional, inflexible way—perhaps at the wrong time, at the wrong place, in too long a period that results in people having to take time off work, in the wrong language, or in the wrong culture. We have to press the commissioners and the providers to look at new ways of providing that vital education, using new technology, online opportunities, peer learning groups, lay educators, flexible times and flexible locations. We have provided programmes based in Starbucks and in village halls. We need to find ways that are as attractive as possible to that huge range of people now developing diabetes, and offer easy-access programmes—tiered education, where people get taster courses that might encourage them to go on to better and more substantial education programmes. Particularly, we need to learn from some of the countries that the noble Baroness, Lady Manzoor, talked about—lower-income countries which have had to find more cost-effective ways of meeting mass markets for diabetes education. We hear of text-based systems and, particularly, group-based lay educator-led programmes.
We need follow-up, too, if people do not attend their educational programmes; we should not just take no for an answer, so we need electronic registers and follow-up systems. Most of all, we need good marketing: we need to use the best available modern marketing techniques, which are currently used in the commercial sector, to encourage people to take up these programmes. It can be done: 40 people went through Bexley’s education programmes in 2009; by 2010 the figure had gone up to 1,000. There is evidence that education works to reduce blood glucose; to improve people’s confidence in managing their condition, and to improve their psychological state as a result; and to improve their real health outcomes. I will quote one example, of Allan, who did not get any such education until he had lived with type 1 diabetes for over 30 years. He said:
“Before the course I was being scraped up literally by paramedics due to hypos at least once a week. One week three times in a week. Since the course I have not needed outside assistance once. Four years now since the course”.
Diabetes UK got rather excited when the NHS Five Year Forward View was published; in fact, we got rather frisky, for two reasons. I will briefly thank the Minister for the commitment and the implementation of the diabetes prevention programme that is currently under way; that is an important move. However, there were also commitments in the NHS Five Year Forward View to empowering patients. It said that the NHS,
“will do more to support people to manage their own health … managing conditions and avoiding complications. With the help of voluntary sector partners, we will invest significantly in evidence-based approaches such as group-based education for people with specific conditions and self management educational courses, as well as encouraging independent peer-to-peer communities to emerge”.
That is great stuff. We were, therefore, pretty excited, but perhaps a bit overexcited. When the joint implementation statement from NHS England and others, Five Year Forward View: Time to Deliver, was published, there was absolutely no mention of how that element of empowerment would happen. I understand that there must be priorities, so I am hoping that the next version for next year’s NHS plan will focus on that area. Perhaps we can encourage the Minister to say today what will be done to make that five-year forward view commitment on patient empowerment real for people with diabetes, and when.
I hope that the Minister will be able to tell us how people with diabetes will be enabled to become confident, informed experts in their own condition. Can the Minister tell us what the Government will do to engage and educate those 3.9 million people with diabetes to ensure that they live long and healthy lives and that the avoidable complications of diabetes do not sink the National Health Service?
Viscount Falkland (CB)
My Lords, I thank the noble Lord, Lord Harrison, for again giving us the opportunity to discuss diabetes, and I congratulate him on the very comprehensive way in which he introduced the debate. I do not think anybody reading his opening remarks in Hansard to find out what this is all about could get anything better online.
Education, which is part of the title of this debate, is so important, and this debate is important because so many people have stressed the importance of education. I suppose that I was rather complacent, because I did not have a doctor when I was diagnosed with diabetes. I was 64 years old, in this House, and I did not think that there was anything wrong with me. I knew that I was having a little difficulty making speeches in your Lordships’ House—I used to dry and feel a little nervous. When we were talking about it, a friend in the House said, “I think you’ve got diabetes”. That was just before Easter in 1999. He said, “I think you ought to have it looked at straightaway. I’ll ring up my doctor”—a private doctor. I said, “I have no doctor, so thank you very much”. The doctor was very efficient and certainly did not say what the noble Baroness, Lady Young, said; I did not have a “touch of diabetes”. My sugar levels were almost catastrophic—no wonder I was feeling odd when talking to the House.
Noble Lords probably know that for a person whose metabolism and pancreas are working properly, the blood sugar levels will be around 5.5 or 6.0. Mine were 29. I was very fortunate in that the doctor acted quickly. He got me the last appointment before Easter—or I would not have been seen until the following week—with a diabetes specialist in a clinic the following day. The professor said, “This is a very sad situation, isn’t it?”. I said, “Yes. It sounds as though it really is”. He gave me an hour of education about my condition. He said some important things apart from explaining what the condition is—the malfunction of the beta cells of the pancreas and the whole business of metabolism. He said, “One thing that I must tell you is don’t be worried about this condition. What we’re going to do for you, and what we’re going to provide by way of education and advice, will make you able to control not just your diabetes but your life. You will be eating better and taking more exercise”. That is exactly what happened.
I have been on a learning curve since then. In eight of those intervening years I was on ordinary medication and then, because I ran out of my own insulin, I was put on synthetic insulin, which noble Lords will be familiar with. There are two lots, one of which carries me through the night. As all diabetics know, when you are asleep your liver produces sugar. I also have the insulin which I take before every meal. Every day I check myself on a wonderful machine. The technology that is available to enable one to supervise one’s condition is excellent.
I found myself an NHS doctor. I have nothing but praise for the NHS but it just does not have the time to provide the necessary education. I was approached by a member of staff of this House who knew that I had spoken previously about diabetes. He said, “My doctor has told me this week that I’ve got diabetes”. I asked what the doctor had said and was told, “He didn’t say very much and that’s why I’m asking you what it’s all about”. I replied, “You need some information. It means that you really have to alter your life”. I ran across to the nurse in the House of Commons and she was horrified to hear of the doctor’s reaction. She said, “Send him here and I’ll give him some of the leaflets that we have here, so at least he’ll know the basics”. I imagine that that experience of a member of staff here is replicated all over the country.
Baroness Young of Old Scone
I hope that the noble Viscount referred him to Diabetes UK as well.
Viscount Falkland
Diabetes UK is an excellent organisation and I congratulate the noble Baroness. The last time we had a debate on this, I think she was only just starting in her role. Having heard her excellent speech today, I would say that she has obviously been on a very successful learning curve. I was very interested in everything that she said.
I now find myself at the age of 80, which is around the age that the doctor predicted I would live to if I looked after myself, and I still feel pretty well. I still ride a motorcycle and so on. I hasten to say that I check myself with my machine before I go anywhere near a vehicle, because it is very dangerous to have diabetes and to drive a vehicle. I hope that most people who have the condition report it to the DVLA, because not to do so would be very serious.
With this complaint, education never stops. We are constantly developing treatments, machines and monitors, and we have different kinds of medication, so we have to adjust to changes the whole time. It is ongoing. I absolutely agree with the noble Baroness, Lady Young, on what we could save in the National Health Service if we got education right—she produced the figures; I could not find them. It is short-term thinking because, as she said, the upfront cost is very high. But the cost if people have heart disease, amputations or all the other dreadful things that can happen, as she outlined in her speech, is astronomical compared with what one would spend on education. Unless they have education, people will not look after their condition. I hope that the Minister can reassure us that there is movement in the right direction on this because it is a growing threat.
I am very glad that the noble Baroness, Lady Manzoor, drew our attention to what happens in the third world, or the developing world as we now call it, and how awful it is for people who do not have our fortune in having a National Health Service that gives us important parts of what we need to treat our conditions. In those countries, a high proportion of their income is spent on this disease. The worry and stress that that must cause is absolutely appalling. The noble Baroness made a very interesting contribution on that.
It is going to get more expensive. One noble Baroness—I cannot remember which one—mentioned the replica pancreas that is now being developed in the United States. That will all become very expensive. People who come here from Saudi Arabia with diabetes can, I suppose, afford it, but people here will not be able to. Important developments are going on, which is good news, but the rising cost beyond the high levels that we already have in the NHS really does mean that organised education is the only way. This is the argument I am making and I hope that the Minister will also make it. And it should not just be short-term education—people really need a course.
The nurses in my NHS practice are absolutely excellent. When they go on a course, they are marvellous. Most of them are immigrants, I might add, so noble Lords will understand that I have no sympathy with UKIP. In the National Health Service, they are marvellous. They love what they learn and they pass it on; they are an important part of the future. I hope that this debate, which I knew would be good but has been better than I expected, will result in an improvement in the NHS service and for patients.
Lord Morris of Aberavon (Lab)
My Lords, not for the first time, I congratulate my noble friend Lord Harrison on initiating a debate on diabetes. I am grateful to the House of Lords Library for its briefing pack. We have just heard from the noble Viscount, Lord Falkland, an exceedingly valuable speech on education, which was of service to the House. That certainly is paramount in the subject of the debate.
The background to our concerns are the words of the noble Baroness, Lady Young—we have just had the advantage of hearing her speak and it has been most helpful to have her participate in this debate—in the foreword to Diabetes UK’s State of the Nation report. She said that diabetes is,
“doubling in prevalence every 17 years, and 13 million people were already directly affected or at serious risk”.
I hope that the Government will acknowledge that this is indeed an epidemic and a national crisis, and that the sooner we learn this, and in particular look at the way that expenditure is allocated in the National Health Service, the better.
Understandably, the documentation provided concentrates on type 2 diabetes because of the sheer numbers. I have, in the past, declared a family interest in type 1. The striking comment about type 1, where the numbers are much smaller and which I shall concentrate on, is that it is one of the examples of poorer care. The report states:
“What is particularly striking is that … those with Type 1 … are receiving considerably worse routine care than other people with diabetes, and are achieving poorer outcomes”.
It was a disappointment that the department, in setting up the national commissioning service, rejected a request from clinicians and researchers that type 1 be commissioned separately or at least differently. I fear that the outcome stated in the document underlines the concern that they expressed at that time. In the absence of a disaggregation of expenditure on type 1, could I return to the issue by asking for up-to-date figures for medical research into finding the answer to the problems of type 1? There is, I fear, despite what we have heard, no simple solution.
As I have told the House previously, I have visited research centres at Cambridge—my university—at Oxford and at King’s College Hospital, London, to discuss the research into the only possible solution, which is the successful creation of an artificial pancreas. I have had its progress explained to me, for which I am most grateful, and I have maintained an interest in the great work being done at those three centres and, I am sure, at others as well.
We are told that NHS England will also have a direct commissioning role to support the new commissioning system. I would like to know from the Minister what exactly is in mind and proposed for NHS England as opposed to the commissioning boards locally.
However, in the documentation, there are repeated references to type 2 and its prevention but much fewer to the management of type 1, with its effect on an incredibly high and unexplained number of children suffering from it. My interpretation may be wrong, but it would helpful if there could be much clearer differentiation in figures, guidance and advice between type 1 and type 2.
Perhaps I may select a few figures. In 2012, fewer people with type 1 diabetes received each of the eight recommended care processes: 41% of people for type 1 compared with 62% of people for type 2. Type 1 is less likely to meet the recommended treatment targets for blood glucose and cholesterol. Similarly, and particularly important for this debate, structured education was offered to 2.4% of people with type 1 diabetes compared with 6% of those with type 2. There were similar figures for actual attendance for structural education. These figures mean something, and this is what this debate is about. They are exceedingly low and need some kind of attention. The high number of children with type 1 underlines the problems of underachievement.
Although the figure for children receiving care processes has almost doubled, it is still well below results for adults. There are considerable variations between CCGs in terms of care process completion rates and achievement of treatment targets. The key question that is asked in the Diabetes UK document, which appealed to me considerably and I repeat, is:
“Would you want to live in a place where less than 10 per cent of people with Type 1 diabetes meet all their treatment targets?”.
That is a fundamental question. My assertion would be that, where there is a responsibility and supervision nationally, there cannot be justification for this postcode lottery. I ask the Minister in his reply, or perhaps by letter, to address specifically how the postcode lottery will be dealt with.
The documentation refers to England. Regrettably I am not aware—certainly no one has recently corresponded with me—of the up-to-date figures for Wales, a devolved responsibility. Perhaps Welsh Ministers may tell me. I am sure that the noble Baroness, Lady Young, as the head of Diabetes UK, which is a UK organisation, will fill that gap in my knowledge so that I can compare my own country with England.
I could go on with the differing achievements for type 1 and type 2 in glucose levels, development of cardiovascular disease and achieving realistic targets in checking cholesterol levels. It is quite frightening to read of the emphasis on eye screening, foot checks and kidney checks and the questions posed by differing degrees of achievement. More than a quarter of children and young people have unacceptable blood glucose levels and only 12% receive all the recommended health checks. These are salutary and frightening figures. Can we allow these poor standards to continue?
We have been told, and rightly so, by many in this debate, from the noble Lord, Lord Harrison, to the noble Baroness, Lady Young, that education can equip people with skills to manage their conditions effectively, but only a handful of people attend courses. There is both an individual and an institutional health responsibility. I am sure we will be told by the Minister how it is proposed that the differing commissioning boards will be encouraged to make an increased effort to meet the need of availability and an update of education and learning opportunities. Otherwise, the cost to the National Health Service of resulting complications will be enormous in the years ahead.
Baroness Wheeler (Lab)
My Lords, I, too, congratulate my noble friend on securing this debate and on focusing on the key issue of how people with diabetes can be helped and supported to manage their condition. My noble friend has done a great service campaigning for improved diabetes care over a number of years and ensuring that this important issue remains an ongoing focus and priority for this House. As well as playing a significant role in the development of the strategy for diabetes care, he speaks from his personal experience as a diabetic and his contribution therefore is all the more valued and powerful for that.
This has been an excellent, authoritative debate and, at this stage, the stark facts relating to diabetes have been comprehensively covered by previous speakers. The 3.5 million sufferers could rise to 5 million by 2025 unless we are able to make substantial progress on achieving wider access and take-up of the education and management programmes we are discussing today. The most alarming statistics of all are that an estimated 24,000 people are dying each year when better management and care could have prevented their deaths; and that 10 million people are at risk of developing type 2 diabetes.
Like other noble Lords, I commend the excellent APPG report, Taking Control, which shows the way forward for addressing problems of access, availability and quality of diabetes education. I also pay tribute to the work of the diabetes think tank which, as we have heard, brings together key stakeholders and policymakers from the diabetes community. I was not able to attend its meeting this week but I read its pre-meeting documentation underlining the importance of the future plan for diabetes properly addressing the needs of people already living with the condition. That is really what today’s debate is about. Getting a better balance between this and action to prevent people getting diabetes is crucial and there is a wide recognition that in the past this balance has not been achieved. It stresses, for example, that repeatedly linking diabetes with obesity risks stigmatising people with type 2 diabetes and ignoring the needs of people with type 1 diabetes whose condition is not preventable.
The APPG report also underlines the importance of focusing on ensuring that everyone living with diabetes, whether type 2 or type 1, has the necessary skills and support to manage their own health and reduce the risk of devastating consequences and long-term complications. My noble friend Lord Harrison and other noble Lords have outlined the powerful case on the cost effectiveness of diabetes education and the importance of ensuring that the NICE guidelines and technical appraisal programmes on the provisions of education are adhered to. Patient education programmes help people with diabetes to understand more about their condition and to develop the skills needed to effectively self-manage their diabetes, as we have heard from noble Lords across the House.
Recent economic analysis undertaken by the York Health Economics Consortium, for example, showed that the DAFNE course for people with type 1 diabetes will pay for itself within four to five years due to the reduced complication rate expected from improved management of an individual’s diabetes. Patients with type 1 diabetes are monitoring and adjusting their treatments several times a day, making clinically significant decisions, so the absence of attending structured and ongoing education for these patients is particularly serious in terms of reducing the risk of serious complications resulting from poor management.
Noble Lords might have seen a recent feature article in the Health Service Journal which starkly brings this point home. It told of the experience of a 19 year-old student, who after a shock diagnosis of type 1 diabetes, was sent home from hospital with an injecting kit and practically no educational back-up. The result a week later was her first hypo. She said:
“The hospital wanted to see me inject myself before I went home to make sure I could do it. I was given a blood glucose monitor and a strips box, but broke it. I really felt I was on my own and I didn’t know what I was doing”.
It was not until three years later, when she moved to London, that she was offered her first structured education course.
For both type 1 and type 2 diabetes, the APPG report refers worryingly to the mountain of evidence it received from experts—including clinical staff, academics, academic health science networks and strategic clinical networks—calling for what it refers to as,
“the ongoing deadlock in the provision and uptake of diabetes education”.
GPs and hospital staff must be the advocates and champions of structured education programmes, but the APPG makes it clear that a significant culture shift in the attitudes of some GPs and other staff as to the importance and efficacy of the courses needs to take place.
These are key workforce development issues. Many doctors report concerns that aspects of training and development in the delivery of diabetes care beyond the hospital have not caught up with how diabetes care needs to be delivered today and in the future through different care models, and in settings away from hospitals and GP surgeries with multidisciplinary team involvement. For example, the APPG cites advice on identifying and using new diabetes technologies as “patchy at best”. Are the Government confident that Health Education England’s training and development strategies are able to address these key issues? Noble Lords have referred to the APPG’s concerns on the lack of emotional and psychological support and mental health issues, such as anxiety and depression, which are often experienced by people with diabetes. I look forward to the Minister’s response.
The noble Baroness, Lady Manzoor, spoke about the international perspective and particularly the key link between TB and stroke. Like her, I should like to talk briefly about diabetes and stroke in this country. Diabetes is a major risk factor for stroke and one-fifth of hospital admissions are for people with stroke, heart failure or heart attack. Having type 1 or type 2 diabetes almost doubles your risk of stroke and is a contributing factor to 20% of strokes in England, Wales and Northern Ireland. Good management of blood glucose, blood pressure and cholesterol is essential. The Cardiovascular Disease Outcomes Strategy acknowledges the common risk factors and the interlinking nature of cardiovascular disease—including coronary heart disease, stroke, hypertension and diabetes—and the fact that people with more than one CVD condition can often receive care from multiple and different teams in a disjointed way. Managing the diabetes condition in these circumstances can be particularly challenging.
I understand that NHS England is now reviewing the programme of work on CVD, but it is far from clear how they propose to take the Cardiovascular Disease Outcomes Strategy forward. How is the strategy to be implemented and how it will relate to NHS England’s prevention plans, including the National Diabetes Prevention Programme?
Support from carers, families and health professionals is key to successful self-management. People without carers or family support have especially to rely on a consistent and active two-way relationship with the health team members involved in their care. Caregivers play a key role in their family member’s diabetes management. They help the person they care for to make healthcare decisions and to stick to a care management plan. Helping carers to better understand the condition is vital. The access problems and postcode lottery situation in the local availability of education courses affects carers and family members as well as the cared for, so family-focused education is important, as are localised peer support programmes.
When researching for this debate, I saw another article about a young carer. It shows just what family members face in helping to support their loved ones. I am a carer and a trustee for our local carer support group in Elmbridge. The local community magazine reported a very moving interview with a 16 year-old carer who looks after her mother who has diabetes. She said:
“I’ve helped her from a young age, testing her blood sugar level and getting sugary snacks when she needs them. When the disease took its toll on mum’s sight, I also started shopping, cooking, collecting prescriptions. And I support her when she feels down … I love helping mum … but caring comes with responsibility and I often miss out on seeing friends. Plus if mum needs help and I have homework to do, the homework has to wait”.
The five-year forward review promises significant investment by NHS England in self-management and educational courses for people with specific conditions. I look forward to hearing from the Minister how this pledge is to be translated into addressing the challenges and problems for people with diabetes, their carers and families, as raised by the all-party group and noble Lords today.
The Parliamentary Under-Secretary of State, Department of Health (Lord Prior of Brampton) (Con)
My Lords, I thank the noble Lord, Lord Harrison, for introducing this very interesting debate—I have certainly learned a great deal. I will reflect on a number of themes that came out of the debate before turning to my prepared speech, and obviously I will come back to education and prevention.
First, I was struck by the contributions from noble Lords who have suffered directly from type 1 or type 2 diabetes—the concept of the expert patient is clearly very strong and important here. The noble Lord, Lord Harrison, looks very well on it: he has obviously looked after himself extremely well. Self-care will be a very important part of going forward. Secondly, we have to do better on education. The noble Baroness, Lady Young, made some interesting suggestions about how we can increase the uptake of education. The work that Diabetes UK does is terrific. It must be one of the most active charities in dealing with these terrible long-term conditions. Thirdly, on the relationship between diabetes and other long-term conditions—be it stroke, cardiovascular disease or other things—the number of people now living with multiple, very complex long-term conditions is a huge challenge for the National Health Service. That challenge was simply not there in 1948 when the NHS was set up. We have to change the way in which we deliver care very radically to address these issues.
The noble Baroness, Lady Masham, talked about the importance of diabetic specialist nurses who provide a tremendous resource to people suffering from diabetes. The noble Viscount, Lord Falkland, talked about the growing use of technology and referred to the artificial pancreas, which was also mentioned by the noble Baroness. That illustrates another huge challenge to the health service, as many of these developments will be hugely expensive. Whether a tax-funded healthcare system can afford these very expensive treatments will be a big challenge for the National Health Service as we go forward.
Over the past year I have heard many things said about the five-year forward view but never before have I heard it said that it made someone feel frisky. However, I am pleased that it made the noble Baroness, Lady Young, feel that way. The five-year forward view recognises the challenge of long-term, difficult conditions such as diabetes, and it offers a way of dealing with them. The noble and learned Lord, Lord Morris, referred to medical research, particularly into type 1 diabetes. His concern was that type 1 diabetes was getting less attention than type 2 diabetes, a point that was very made well.
Diabetes is a priority for the Government. Frankly, it would be a priority for any Government, because more than 3 million people—probably nearer 4 million people—have been diagnosed with diabetes and maybe a further 500,000 are undiagnosed. The noble Viscount, Lord Falkland, was one of those undiagnosed people. With a blood sugar of more than 29, I think he said, it is remarkable that he is still here with us. I am very pleased that he is, but that just illustrates the fact that many other people have it less catastrophically badly than the noble Viscount and are undiagnosed.
Diabetes is directly responsible for some 5,000 deaths per year and is a major contributor to causes of premature mortality, such as heart disease and stroke. The noble Baroness, Lady Masham, described her husband’s conditions as both diabetes and strokes. There are, I believe, 22,000 avoidable deaths attributable to diabetes each year. This is a very serious illness. It not only has huge and tragic consequences for many individuals, but, as we have been told by other noble Lords, is a cost to the NHS of some £10 billion a year and a much wider cost to the economy as a whole.
On prevention, the noble Lord, Lord Harrison—I thank him for giving me sight of his speech before the debate—spoke of his personal experience of living with type 1 diabetes. Although we know that type 1 diabetes is not preventable, it is estimated that some 80% of type 2 diabetes is indeed preventable.
I thank the noble Baroness, Lady Manzoor, for her contribution. I apologise to the noble Baroness, but I was not going to address the international implications of diabetes. The statistic that she gave—that some 387 million people suffer from diabetes worldwide—is indeed sobering. I know from experience that in some parts of the world, for example in the Middle East, prevalence of diabetes is particularly strong. Her points about co-infection with TB were well made. I am very happy to put the noble Baroness in touch with my opposite number in DfID if that would be helpful.
The NHS diabetes prevention programme is a joint commitment from NHS England, Public Health England and Diabetes UK to help people identified as being at high risk of developing type 2 diabetes to take personal responsibility for lowering their weight, increasing their physical activity and improving their diet. It will be the world’s first national at-scale prevention programme. It will link into the NHS health check programme—commissioned by all upper-tier local authorities—which invites adults between the ages of 40 and 74 to a check for risk awareness, assessment and management of the key risk factors leading to premature death and disability in England. These checks take place every five years and include a diabetes risk assessment and blood test for those at risk, which could enable early detection of 4,000 cases of diabetes each year. Since the programme began, more than 10.5 million NHS health checks have been offered and more than 5.2 million checks have been undertaken. The fact that that is only 50% take-up reinforces the point made by the noble Baroness, Lady Young, that we should be able to do more about marketing these schemes to ensure a higher take-up.
On patient education, the noble Lord, Lord Harrison, and other noble Lords stated that once a patient is diagnosed with diabetes, education is vital in ensuring that they can manage their condition as effectively as possible. We have heard that GPs in some cases perhaps do not give sufficient encouragement for sufferers of diabetes to do this. There has been an interesting observation that companies, through their corporate and social responsibilities, should do more to ensure that their staff and employees take up the opportunities for better education.
The NHS Five Year Forward View sets out a clear ambition to do more to support people with long-term conditions to manage their own health and care. To achieve this, NHS England has set up the Realising the Value programme, which will help strengthen the case for change, identify a set of evidence-based approaches and develop tools to support their wider implementation across the NHS and local communities.
The NICE quality standard for diabetes sets out that people with diabetes should receive a structured educational programme as this is key to ensuring that they are able to manage their condition as successfully as possible. Sixteen per cent of people newly diagnosed with diabetes were offered structured education in 2012-13, compared with 8.4% of those diagnosed in 2009, so there is improvement but from a very low base. In the same period, the number of people newly diagnosed with diabetes offered or attending structured education rose from 11% to 18.4%. I can only agree with noble Lords and the noble Baroness, Lady Young, that that is still far too low and that we must do more to increase that take-up. I agree with the noble Lord, Lord Harrison, that sharing best practice across areas is vital in increasing patient education.
To support this, we have increased transparency through the creation of Healthier Lives: Diabetes, Hypertension and NHS Health Check. This is a major online tool from Public Health England which has revealed large variation in the prevalence and treatment of diabetes. I am afraid that variation exists between hospitals as well.
The clinical commissioning group outcomes indicator set also provides clear, comparative information for CCGs, health and well-being boards and local authorities. I think that eliminating variation is the only way of addressing the postcode lottery to which the noble and learned Lord, Lord Morris, referred. I could refer him to PHE’s atlas of variation, but the more we can publish about the performance of individual CCGs and, indeed, GP practices, the more we can eliminate variation.
I turn to children’s education. The most recent national diabetes audit report noted that the take-up of patient education was particularly low among younger people who develop type 1 diabetes in childhood. To incentivise improvements, the best practice tariff for paediatric diabetes provides an annual payment for the treatment of every child and young person under the age of 19 with diabetes, providing that 13 standards of care are met. One of these standards is to ensure that each young person has received a structured education programme tailored to meet their and their family’s needs, including their carer’s needs—a number of noble Lords referred to that—both at the time of initial diagnosis and ongoing updates throughout their attendance at the paediatric diabetes clinic. The noble Lord, Lord Harrison, referred to the important role of pharmacies in this regard. Increasingly, we will see a primary care system which is not just a traditional GP practice but encompasses pharmacy and other activities, and perhaps hospital outpatient clinics.
Once again, I thank the noble Lord for highlighting this vital issue. The Government are fully committed to combating and preventing diabetes. I hope I have demonstrated that we are working hard—although we are by no means fully satisfied yet with our results—not only to ensure that those who have diabetes are empowered to manage their condition as effectively as possible, but that those who are at risk of diabetes are given the tools, knowledge and support they need to reduce their chances of developing it.