Health: Diabetes

Baroness Young of Old Scone Excerpts

Thursday 2nd July 2015 Lords Chamber

[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.