Melbourne Declaration on Diabetes

Jamie Reed Excerpts

Wednesday 18th June 2014 Westminster Hall

[Mr Jamie Reed (Copeland) (Lab)]

It is, as usual, a pleasure to serve under your chairmanship, Dr McCrea, and it is a pleasure to follow the hon. Members for Torbay (Mr Sanders) and for Strangford (Jim Shannon). The hon. Member for Torbay, in particular, has been making a superb contribution across this entire policy area for many years. As someone who is also “blessed” with type 1 diabetes, I look to him for inspiration, and he readily provides it on a regular basis. I cannot thank him enough for introducing a debate in this House on this subject yet again. His work as chair of the all-party group on diabetes, as president of the Parliamentarians for Diabetes Global Network and in the Global Parliamentary Champions for Diabetes Forum is commendable. His position and work there mean that the UK can be a world leader in ensuring high-quality treatments and support for those with diabetes. I am very sincere in all those comments. They are heartfelt.

The hon. Gentleman spoke on this subject in April, in a debate to which I contributed. He raised some very important issues, not least of which was the importance of an approach that respects the distinction between causes and treatments of type 1 and type 2 diabetes. In opening today’s debate, he has again raised matters of the utmost importance and concern, which I will also touch on.

The Melbourne declaration on diabetes was formally adopted on 2 December 2013, as we have heard, at the first Global Parliamentary Champions for Diabetes Forum. The declaration contains eight action points for parliamentarians, including encouraging the creation and adoption of a national plan that acknowledges that diabetes is a national health priority and that leads to action. I will focus my remarks today on the need to create an action plan. I hope that the Minister, whom I welcome to her place, can confirm that the Government are committed to that, especially given the clear will of parliamentarians from those parties that have contributed today, although I know from discussions and conversations with colleagues right across the House that there is a clear understanding of the need to support an action plan as a way forward.

There are more than 380 million people with diabetes in the world, and that figure is expected to reach almost 600 million by 2035. That is deeply worrying. In the UK, 3.2 million people are living with diabetes. That includes almost 35,000 children. One pound in every £10 spent by the NHS is spent on treating diabetes and the complications that arise from it. We have heard an awful lot about the economic and financial modelling of the effects of diabetes on the NHS. I think that we need to spend more time on that as a country. Diabetes UK says that diabetes is responsible for 20,000 premature deaths each year, and that 80% of cases of type 2 diabetes could be prevented or delayed. Let us just think about that: 80% of cases could be prevented or delayed. The financial savings that we could make, irrespective of the improvements that we could make to the lives of those people who go on to develop type 2 diabetes, are phenomenal.

We must always be aware of the distinction between type 1 and type 2 diabetes. Type 1 is a chronic, life-threatening condition that affects 400,000 people in the UK, including 29,000 children. Type 1, as we have heard, is not caused by lifestyle factors such as obesity, lack of exercise or poor diet. I should know, and I never resist the temptation to remind people that I did the London marathon earlier this year. Thanks go to the Juvenile Diabetes Research Foundation, if its representative is in the room. I want to do it again next year, by the way. Whereas those with type 2 diabetes can sometimes be treated with a change in diet and exercise and modest medication, those with type 1 diabetes need multiple insulin injections or pump infusions every day. I did mine before the debate started. My blood glucose level was 14.7, which is not particularly good—I will be getting told off for that.

Each year, a person with type 1 diabetes will undertake more than 2,000 finger-prick blood tests, have 1,500 insulin injections and count the carbohydrates in more than 1,000 meals. It is clear that any action plan will have to develop coherent and effective strategies for both conditions. A one-size-fits-all strategy simply will not do, so I hope that the Minister can reassure us today that she will not be cutting corners. Any plan must be workable and tailored to meet the specific needs of both conditions.

Diabetes UK has done excellent work, as always, on this matter. Its briefing in advance of today’s debate was superb. It endorses the view that there is a clear need for a national action plan. It has identified five key areas that must be included. Those are improvement in support for self-management; integration of care; improving safety; a focus on children and young people with diabetes; and prevention of type 2 diabetes. I am sure that if the Government introduced a comprehensive action plan built on those five principles, it would receive the support of the entire House.

Starting with self-management, it is obviously crucial that individuals and their families can successfully manage their condition, and the keystone of that is effective care planning and education. Positive care planning and strong education can ensure that an individual is equipped with the tools and resources needed effectively to manage their condition. Diabetes UK calculates that each year, care in a clinical setting totals about three hours, whereas self-care accounts for almost 9,000 hours. Improving self-management is not optional—it is absolutely essential. I appreciate that it could be culturally difficult for us to achieve that as a Parliament and a country, but it is something we absolutely need to crack.

Opposition Members have long advocated the benefits of integrated care across the whole NHS. With diabetes, a person will routinely have contact with many parts of the wider health care system, such as primary, community and secondary care. To improve integration, Diabetes UK has identified five key points that would, in effect, provide an integrated diabetes care pathway. Such a pathway would require strong networks of clinicians, commissioners and patients, a more integrated system of commissioning services, better information-sharing across services and the improving of skills in primary care, all of which should be overseen by effective clinical governance. Those actions are not out of reach, and the Government could easily ensure that they are part of any action plan.

The third point I want to cover is patient safety. There are major issues regarding the safety of in-patients with diabetes in hospitals. According to research undertaken by Diabetes UK relating to the past year, about 40% of in-patients experienced at least one medication error, more than a fifth experienced one or more hypoglycaemic episodes and fewer than a third were seen by a member of the diabetes team. Those problems can, as the hon. Member for Torbay said, contribute to patients with diabetes having to remain in hospital more than three days longer than patients without diabetes. Again, we should consider the cost implications for the health service in these tough times. Any plan the Government introduce must surely address that, because it is bad for patients, clinicians and the health service.

There must also be space in the Government’s plan to address young people’s experiences. There are 35,000 children with diabetes in the UK, which has the fourth highest number of children diagnosed with type 1 diabetes in Europe. Many children and young adults experience a marked deterioration in their care as they make the transition from children’s to adults services. Adolescence is often a time when many lifelong behaviours are established, including those that are health-related, so it is essential that young people can complete the transition at a time that is right for them. A deterioration in care and a forced transition have been shown to disengage young people from the service, resulting in worse outcomes and complications. There is an acute need to address that.

In the last debate on this issue, in April, I referred to support and education for young people, which are key to ensuring that they can manage and cope with their condition. Being diagnosed with any form of diabetes can be overwhelming if the proper support is not in place.

My next point relates to a focus on preventing type 2 diabetes. Recent reports by the British Medical Journal have shown that a third of adults have higher than normal blood glucose levels, which is an indication of pre-diabetes, and many health professionals project that there will be a huge increase in the numbers of those with type 2 diabetes. I am sure that that worries policy makers on both sides of the House, whether on the left or the right or in the centre. As I said, any action plan must take into account the differences between type 1 and type 2. Critically, any strategy for type 2 must be based on prevention.

I would be grateful if the Minister could outline what the Government are doing on the points I have raised, and I would expect her to be able to give us some indication of when they are likely to introduce a plan to address the issue. Given the importance of such a plan, I hope she will make a statement to the House when any plan is published, to give Members who are not present the chance to scrutinise the Government’s proposals. Indeed, I would go further. Every time we have such a debate, it strikes me that there is a real wealth of experience and understanding of these issues across the House. It would, therefore, be a tremendous gesture—not for its own sake, but from the point of view of those living with this condition—if Members who understand type 1 and type 2 diabetes were allowed to contribute their knowledge and experience to the production of a better plan that would better suit those with this condition.

Through the Melbourne declaration, the International Diabetes Foundation makes the incredibly important point that

“disadvantaged people in every country carry the greatest burden”

with regard to diabetes. That is important when looking at the levels of clinical care for diabetics across clinical commissioning groups throughout England. Speaking to diabetics around the country, I have seen for myself that if we are to make self-management as effective as it can be—we have a long way to go on improving not only the culture but the clinical ability of CCGs and other primary care providers regarding self-management—we must make a concerted effort to look at the literacy and numeracy of some of the people with this condition. Every day, before every injection, people must undertake a fairly simple and routine mathematical calculation of their insulin to carbohydrate ratio, but many of them simply cannot do the maths. There is no assistance, tool or device on the market to help them make those calculations simply, so we need to look at that, because it is a big cultural issue. There is an issue with not just numeracy, but literacy, and there are also issues about social exclusion, which I am sure we are all aware of. We need to put some time and effort into understanding and resolving those issues if we are properly to increase self-management among diabetics.

NHS England published “Action for Diabetes” earlier this year, but Diabetes UK said that it was not sufficient and did not present a comprehensive strategy or action plan. I have read it, and I think that is a fair comment. Diabetes desperately needs a national service framework—there are no two ways about that. The service around the country is incredibly patchy when it comes to not just the nine key diabetic tests, but other diabetic support services. Perhaps the Minister can tell us how the Government will ensure that CCGs step up to the plate. We really need a detailed plan, and I hope she can tell us when one will be introduced.

Will the Minister also tell us how many diabetics are missing their checks? That information should be understood and collated centrally, because the issue is of strategic national clinical importance. What are the clinical and financial effects on the service of people missing their appointments? We are failing people with diabetes, and that did not begin in 2010.

I touched earlier on self-management, which is incredibly important, but so are innovation and the use of data. For me as a type 1 diabetic, the most important issue in managing my condition is having access to data about it, such as my blood glucose readings and my insulin ratios. We need a framework and a strategy for medical innovation that incorporates diabetes research—from not just a scientific point of view, but a patient’s point of view—in a profound way. How can we become the best country in the world, in terms of medical companies and other pharma-based industries developing new and innovative ways of treating diabetes?

I wear all sorts of devices to monitor my fitness and my sleep—whether it is a Jawbone, a Misfit Shine or a Nike fuelband, believe me, I have them all. The data they capture about the individual is of incredible medical importance. We need, on a cross-party basis, to establish a strategy under which this country can genuinely innovate and become a global leader, with a view to enabling companies to produce the best suite of devices, applications and so on to assist in dealing with type 1 and type 2 diabetics. I look forward to the day when my data can be captured in real time and shared with my GP and my pharmacist, so that I do not have to phone up, text or e-mail to get my insulin prescription. My GP and my pharmacist will have the information and the algorithm, they will know when my prescription needs to be ready and how much I am using, and my doctor will know how I manage my condition. We can hothouse innovation—my office and I are doing an awful lot of work on this—but we need to make that innovation part of not only a national diabetes strategy, but a biotech and medical innovation strategy.

Finally, I say to the Minister that we are here to help. Will she please use the experience that exists across the House and not miss this opportunity to act?

[Dr William McCrea (in the Chair)]

Before I call the Minister, I want to mention that several Members have apologised for not attending because they are taking part in another debate. They wanted to be here and asked me to pass on their apology to the hon. Member for Torbay (Mr Sanders) and the Minister.

--- Later in debate ---

[Jane Ellison]

That is right. We need to make sure of that. People cannot be empowered without information. We also know, having a duty to address health inequalities, that some people and groups in the community find things much harder. I was taken by some of what the shadow Minister, the hon. Member for Copeland (Mr Reed), said about deploying technology more. Work is going on, but I agree with him that we could go further faster with that, to find ways to empower people who may not have a good sense of what to do to take care of their health, and who find it harder than others to obtain the available advice. We must work harder to reach them and I shall talk about NHS health checks in relation to that.

As to the commissioning of integrated care, NHS England is working with other organisations to help to promote services that are integrated around patients’ needs across all settings. There has been much emphasis on that. That body is implementing what it calls a customer service platform to allow patients with diabetes to self-manage, through booking their own appointments, managing their prescriptions, monitoring the care they have received and being able to view their personal health records. That picks up on some of the shadow spokesman’s points.

NHS England has also produced a sample service specification for the management of type 1 and type 2 diabetes that is based on National Institute for Health and Care Excellence standards. It provides a model for commissioning integrated care for those with diabetes, and also highlights the specific needs of those with type 1 diabetes, where they differ from the needs of those with type 2. If the current trial of the service specification is successful, it will be offered as a tool that all clinical commissioning groups can choose to use to deliver high-quality care. That is therefore an important piece of work in progress.

There is always a challenge for any of us in making sure that the rest are as good as the best. Occasionally when we talk about the challenges of our current health infrastructure I worry about the assumption that there is a model out there, somewhere, that would absolutely guarantee the delivery of completely consistent care in a given area, across the country. In a country such as ours it is not possible to give such a top-down guarantee. Yes, we must find a way to drive care from the top, with a clear sense of direction from the strategy and mandate that we have given the NHS and Public Health England, but we must also put the tools in the hands of the clinicians, as I have been discussing. Most importantly, we must empower individuals and patients to know what they can expect and to demand good care. Nevertheless, I genuinely do not think that we could devise any system in which we could just issue a notice from the centre to say exactly how care will be delivered consistently across the country. We must find other ways to do it.

[Mr Jamie Reed]

I understand the Minister’s point, but we are talking about nine very simple, fairly cheap tests for people with type 1 diabetes that must be done in a primary care setting by medical professionals. We are talking about blood tests, the blood being processed and the resulting data being made available, all of which are critical to the self-management of the condition. Surely we can insist on those nine tests for every single type 1 diabetic patient.

[Jane Ellison]

I think that the shadow Minister has slightly misunderstood what I said. Those are the tests and that is exactly the standard to which we want everyone to work. What I am saying is that there is no top-down guarantee. We cannot sit in Whitehall and say, “It must be done like this and that is the end of it.” We have said that that is the standard, and NHS England has set a range of other standards, but to deliver that and to drive that consistency of excellence throughout the country requires a range of tools. We must acknowledge that. That is not to say that we accept patchy service—far from it—but we cannot do it with top-down diktat only; we must drive change at all levels of the system and drive towards excellence.