Diabetes: Artificial Pancreas

George Howarth Excerpts

Wednesday 12th December 2018 Commons Chamber

[Mr George Howarth (Knowsley) (Lab)]

I would like to begin with some acknowledgements to those who contributed towards the material that I will be using today, so let me place on record my thanks to Dr Jacq Allan from Birkbeck University and the charity Diabetics with Eating Disorders; Sandie Atkinson-Goulding; Dr Weston and Dr Zaidi from the Royal Liverpool University Hospital; the Juvenile Diabetes Research Foundation; Incisive Health; and Diabetes UK. I thank them all for sharing their expertise, briefing notes and academic work with me.

I intend to highlight the technology that is available for people with type 1 diabetes, point out some issues surrounding access to technologies and say a few words about the lack of structured education and psychological support available for type 1 diabetics. To conclude, I will make some suggestions to the Minister on what the Government can do to progress towards artificial pancreas systems.

Type 1 diabetes is an autoimmune condition, where an individual cannot naturally produce insulin. According to JDRF, this condition affects 400,000 people in the UK, of whom 29,000 are children. JDRF is leading on and funding the design of an artificial pancreas, which will change the lives of those affected by type 1 diabetes considerably. The artificial pancreas is in advanced human trials and the work in the UK is being led by Professor Roman Hovorka at the University of Cambridge, with funding from JDRF. Artificial pancreas systems automate blood-sugar management, dramatically reducing type 1 diabetes-related risks and improving the lives of people who have the condition. The artificial pancreas consists of a continuous glucose monitor, a computer programme and an insulin pump that work together to automatically control background insulin levels. These artificial pancreas systems, which may be a combination of existing or newly developed continuous glucose monitoring systems and insulin pump technology, have been termed the “artificial pancreas” because they monitor and adjust insulin levels just as the pancreas does in people who do not suffer from diabetes. Artificial pancreas systems have the potential to transform lives, particularly for those who find it difficult to maintain good blood-glucose control.

[Sandy Martin (Ipswich) (Lab)]

Does my right hon. Friend agree that simple continuous glucose monitors that are already available—I believe the Prime Minister wears one—are still not being allowed to children and young people who would benefit from them because some clinical commissioning groups do not prescribe them? When I asked the Secretary of State about this affair, I was told that the Department has no intention of monitoring what CCGs measure. Does my right hon. Friend agree that that is not a satisfactory state of affairs?

[Mr Howarth]

I am grateful to my hon. Friend for that intervention. He is right in what he says, and I will be covering precisely that point later in my speech.

A recent JDRF-funded trial found that the artificial pancreas is better at helping people to manage their glucose levels than the best currently available technology. People who used the artificial pancreas spent 65% of time with glucose levels in range, which compares with 54% of time for people using a continuous glucose monitor and an insulin pump. Unfortunately, as my hon. Friend mentioned, there are significant regional variations in access to existing diabetes technologies, such as insulin pumps, in many parts of the country. The most recent national diabetes audit, published in July 2018, shows that although the overall uptake of insulin pumps has increased, the proportion of people with type 1 diabetes attending specialist services who are treated with pumps varies from a pitiful 5% to 40% at best.

[Steve McCabe (Birmingham, Selly Oak) (Lab)]

I do not know whether my right hon. Friend is familiar with a group called #WeAreNotWaiting. They are people who are developing their own equipment, pumps, monitoring system and computers, because they are not prepared to wait for technology that could be made available to help them.

As my right hon. Friend says, the pumps are available but not widely available on the NHS, despite being a leading British technology. Of course, the other problem is that there is no push from the Government for concerted commercial development of these systems in this country.

[Mr Howarth]

I am grateful to my hon. Friend for that intervention. I am aware of the #WeAreNotWaiting group and as recently as earlier today I had an email from one of them. I will not name them, because I do not have permission to do so.

[Jim Shannon (Strangford) (DUP)]

Will the right hon. Gentleman give way?

[Mr Howarth]

I will give way in a moment. I just want to finish answering the point made by my hon. Friend the Member for Birmingham, Selly Oak (Steve McCabe).

The email reads:

“As someone who has built an artificial pancreas using the open artificial pancreas system and is reaping the rewards from this technology, I just wanted to wish you good luck with this evening’s Adjournment debate. Having been a type 1 for 38 years, I can confirm that this is truly life-changing.”

Before I give way to the hon. Member for Strangford (Jim Shannon), I want to say a word about those who are manufacturing their own artificial pancreases. In some respects, we should celebrate that there are so many young people out there who have the ability to build what is in effect an artificial pancreas, while, at the same time, writing their own algorithms to link them together. That is truly amazing.

I have a background—this is a long time ago—in engineering and I cannot even conceive of doing that, so it is very encouraging that people are doing it. On the other hand, I worry. I have spoken to clinicians and one said to me, “I’ve looked at some of them and they are viable devices, but I worry about people building something that is not reliable and then relying upon it. There could be serious consequences down the line.” But this does show what is possible when people—in their bedrooms or in their mum and dad’s garage—are effectively able to control their own diabetes.

[Jim Shannon]

I congratulate the right hon. Gentleman on securing this debate on using modern technology to deal with diabetes. I declare an interest as a type 2 diabetic. I know other Members in the Chamber have similar ailments.

Northern Ireland has some of the highest levels of diabetes in the whole of the United Kingdom. We have the highest level of type 1 diabetics among children in the whole of the United Kingdom per head of population. That gives an idea of the importance of this debate.

I am very interested in the success of the artificial pancreas given to a teenager in Leeds. Does the right hon. Gentleman agree that this revolutionises both treatment and quality of life, but that it must be available throughout the whole of the United Kingdom of Great Britain and Northern Ireland? It must not be a postcode lottery. This must be available as a matter of course for those who fit the protocol. Will the Minister tell us how we can do that across the whole of the United Kingdom of Great Britain—Scotland, Wales, England—and Northern Ireland?

[Mr Howarth]

I am grateful to the hon. Gentleman, who must be psychic, because that is the very next point I was going to make.

There have been, as the hon. Gentleman says, postcode lottery-style problems with accessing the technology. For example, with FreeStyle Libre, a flash glucose monitoring device, patients in Liverpool are able to get it on prescription if they meet the criteria. That is very welcome, but many patients from outside the area cannot get one, as up to 30% of CCGs do not fund them. There needs to be more work done on that and I know the Government have made an announcement, which I will refer to in a moment.

Thanks to Diabetes UK’s campaign on 14 November, World Diabetes Day, NHS England announced that from April 2019 the FreeStyle Libre will be made available to all who meet the clinical criteria regardless of where they live. That is a very welcome development. I do not think it will apply to Northern Ireland, but I hope a similar policy is adopted in Northern Ireland. Innovation in diabetes technology is evolving rapidly in exciting ways.

[Liz McInnes (Heywood and Middleton) (Lab)]

I thank my right hon. Friend for giving way. To go back to the postcode lottery of funding, I wonder whether the Minister will talk in her winding-up speech about the work of the Scottish diabetes technology improvement plan, which was supported by £12 million of funding and has resulted in increased insulin pump usage in Scotland. I wonder whether we might emulate that scheme.

[Mr Howarth]

The common-sense approach is to look at what is going on elsewhere—in Scotland and in other parts of the world—to get the best of what is available and use it in the most effective way. My hon. Friend is quite right about that.

It is pointless giving type 1 diabetics the latest technologies, such as an artificial pancreas system, if they are not given structured education to support them to use the technology that is available. The limited uptake of educational programmes is a matter of great concern, and I hope the Minister shares that concern. Despite guidance from the National Institute for Health and Care Excellence, in 2014-15 only 2% of people newly diagnosed with type 1 diabetes were recorded as having attended structured education courses. For some, that lack of knowledge of the key principles of self-management is a major barrier to the use of technology, because without sufficient education, type 1 diabetics are not equipped to get the best results from the technology available.

[Sir Mike Penning (Hemel Hempstead) (Con)]

This is a very important debate and I am pleased we have time to listen to it. I will have to go and listen to my leader at 5 o’clock, so I apologise if I leave in the middle of the debate. With type 1 and type 2 diabetes, it is crucial to diagnose as early as possible. With type 1, which is very different from type 2, it is possible to diagnose very early on in the life of that person. Perhaps the right hon. Gentleman will allude to the differences between lifestyle issues and something that a person normally has when they are born. Surely the answer is testing early, so people can find out and have their educational needs met, and hopefully the product can be available across this great nation of ours.

[Mr Howarth]

I am glad that the right hon. Gentleman, who has a background in these matters, has drawn attention to the distinction between type 1 and type 2 diabetes. That is not to say that one is superior to the other, but they are two entirely different conditions brought about by entirely different circumstances. As I said in opening my speech, type 1 diabetes is an auto-immune condition. Nobody is entirely sure what triggers it in some people, but those in whom it is triggered have some predisposition towards the condition.

[Keith Vaz (Leicester East) (Lab)]

Will my right hon. Friend give way?

[Mr Howarth]

I have not quite finished answering the right hon. Member for Hemel Hempstead (Sir Mike Penning). It is particularly important to draw the distinction for young people because, often, young people with type 1 diabetes are bullied very cruelly on the basis that their peers in school accuse them of having brought it on themselves by eating too many sweets or too much sugar. Of course, that is complete nonsense, but that does not stop that kind of bullying taking place.

[Keith Vaz]

I congratulate my right hon. Friend on securing the debate and on being a champion for those with diabetes throughout his parliamentary career. Can I take him back to the issue of structured education, which is one of the great pillars of diabetes care? We do not do it well enough and we do not give those with type 1 diabetes enough support. Does he agree that it is important to ensure that all CCGs give proper consideration to who delivers that kind of education? It should not be delivered by anyone other than those with the expertise to deliver it.

[Mr Howarth]

Yes. I pay tribute to my right hon. Friend, who does a massive amount of work as chair of the all-party group on diabetes. He is very knowledgeable on the subject and the issues involved, and he is of course right. I think I had already said more or less the same thing as he just said, but obviously I agree with myself and with my right hon. Friend.

Let me move on to the digital solutions, such as apps, which could offer platforms to deliver education in a convenient and personalised format. I should add the rider that mobile apps need to be safe, reliable and accredited to be clinically safe. It worries me that some apps out there are produced commercially but do not contain wholly accurate information. It is unsafe to rely on apps that are not properly accredited and that have not been assessed and evaluated by experts who know what they are talking about.

In addition to the low uptake of structured education, the number of specialists working in diabetes care is falling. Between 2010 and 2012, there was a 3% fall in the number of NHS sites that employ any diabetes specialist nurses. Anyone who has any experience of dealing with young people with diabetes will know that nurse specialists are often the very best possible source of advice.

In the light of this shortage, a national network of centres—possibly between eight and 10 expert diabetes technology centres, supported by virtual clinics—could well be a potential platform for the development of more effective structured education for patients, and for professionals as well. I shall say more about that in a moment. Such a network would be helpful for training future generations of diabetes clinicians effectively to provide artificial pancreases, and in the development and evaluation of new technologies.

One of the problems that type 1 diabetes sufferers tell me that they experience is the merry-go-round of different services that they have to access. They may have a problem with neuropathy, or a foot or eye problem, but they cannot access all those services in one place. Many diabetologists, although brilliant at dealing with the diabetes side of the problem, are not equipped to deal with young people who have, for example, psychological problems. All the services need to be better integrated.

[Sir Mike Penning]

I do apologise, Madam Deputy Speaker, but I will have to slip away straight after this intervention.

One group of people the right hon. Gentleman missed out, although it was not intentional, was parents. When a child is diagnosed with type 1 diabetes, there is a journey for the parents as well as the child, so there needs to be support for them. I completely agree with the right hon. Gentleman that diabetes does not pick on certain people from certain areas; it just picks on an individual. Sometimes it is hereditary—a lot of work is being done around the hereditary route—but it is not a choice; it is something that comes on to the family, rather than just the individual.

[Mr Howarth]

The right hon. Gentleman is right, and it was an omission on my part not to have acknowledged that. Any parent of a diabetic child has to experience the disease—at second hand, but in very important ways. The younger the child, the more responsibility parents have to take, so that is important. By the way, training and other support for parents needs to be built into the system.

[Jim Shannon]

I just want to reinforce what we do for diabetics in Northern Ireland. The surgery that I belong to, in Cuan in Kircubbin, holds diabetic classes twice a year. The staff there do tests on all the diabetics—type 1 and type 2—including for their blood pressure, feet, eyes and all the other things they need to test in the clinics. The surgery then reports back on those tests. For instance, patients will get an eyesight test a month after they have been to the clinic. That shows that there are ways of dealing with this. I am not sure whether surgeries on the United Kingdom mainland do something just as good, but perhaps they should.

[Mr Howarth]

There are centres where people can access a lot of services in one place in a similar way to what the hon. Gentleman describes as happening in Northern Ireland.

I attended an interesting conference in Vancouver three or four years ago. I found out—the Minister or one of her colleagues might want to investigate this a bit further—that some of the smaller island states tend to provide all the services in one place because they do not have the capacity or resources to do anything else. It is an accident of geography that they are forced to do that, but it seems to work very well, particularly in some of the Pacific island areas, where there is a massive problem with type 2 diabetes.

[Mr Jim Cunningham (Coventry South) (Lab)]

I apologise for coming to the debate a bit late. My right hon. Friend may have touched on this; the issue affects not only families, but schools, which need to have a bigger appreciation of the difficulties that kids experience not only with diabetes, but in other areas. I had a private Member’s Bill some years ago that proposed a cluster of schools having a specialist who could spot early problems with children, including diabetes and all sorts of mental health problems. Does he agree that would be helpful?

[Mr Howarth]

My hon. Friend may have been late, but he is never behind. Of course I agree with him.

In October, I tabled a written parliamentary question to the Secretary of State for Health and Social Care, asking how many patients with type 1 diabetes had been referred for psychological support, psychiatric support, and treatment for an eating disorder or diabulimia in the last 12 months. I was told that the information is not held centrally. I then took the matter up with Knowsley clinical commissioning group, but it turns out that it does not hold that information either.

The lack of psychological support for adults and young people with type 1 diabetes is a real and important issue. It was one of the key points in the national service framework for diabetes when that was first brought into being. Most patients on Merseyside, which is my part of the world, still cannot get the support that they need.

Diabulimia, which is a syndrome, rather than a condition, is an eating disorder present among those with type 1 diabetes. It involves the omission of insulin doses, which leads to high blood glucose levels and the body’s cells being deprived of oxygen and energy. The available research suggests that around 40% of females between the ages of 15 and 30 with type 1 diabetes deliberately induce hyperglycaemia and diabetic ketoacidosis in order to bring about weight loss. Anyone can go on the internet and quite easily find out that if they omit to use their insulin, they can probably lose half a stone in a week, but of course the risks in involved in doing so, including damage to vital organs, should not be taken at all.

According to the charity Diabetics with Eating Disorders, 60% of all females with type 1 diabetes will have experienced a clinically diagnosable eating disorder by the age of 25, and new research suggests that 11% of adolescent males also engage in insulin omission for weight loss. I just want to pause at this point and say a word: although I am describing something that affects type 1 diabetics, it is all part of a wider problem of body image and an obsession with a particular type of weight range. Although diabetics, because of their condition, have a different means of achieving that weight loss, it is an issue that has to be addressed nationally. I know that the fashion industry, for example, has started to make some moves in that direction, but it is a national problem, particularly for many young women who feel that they have to look a certain way to be acceptable. That is, of course, nonsensical, but, nevertheless, it is the way that some of them feel.

Sandie Atkinson, a PhD candidate at Liverpool John Moores University, believes that there is a lot more that clinics can do to reduce the psychological impact of type 1 diabetes and, as a consequence, reduce the prevalence of diabulimia. She says:

“By being empathetic to the issues that impact blood glucose level outside of the realm of an individual’s ability to manage and having realistic expectations of them in light of these uncontrollable factors, individuals might feel less inclined to hide their true condition from Healthcare Professionals.  The likelihood of them being more open would undoubtedly be in the best interest of the patients and the NHS at large.”

While conducting her research, those whom Sandie spoke to described the problems that they had in accessing support in clinics. One participant said:

“Eating disorders thrive on secrecy and yet people feel with diabetes they can’t be honest about the expectations of where they are with control so there’s two lots of secrecy there that really does a lot more damage”.

A second interviewee said:

“There’s something about the way that we treat diabetes and I don’t know if it’s maybe because there is some internal stigma, but there’s something needs to be done…I just kind of feel like we’ve got it all wrong…right from the off you should have a psychologist…at least for the first year. I mean the research is all there, suicide risk goes up, self-harm risk goes up, mental health declines…We know this but we’re like, ‘oh yeah, we’ll see you in six months’ time’.”

To progress towards artificial pancreas systems, there are a number of things that the Government must do. The NHS needs to establish a new national framework that encourages innovation. The framework could include some of the following elements: first, a national strategy, with allocated funding, for diabetes technology, allowing all people with type 1 diabetes to self-manage their condition by considering individual medical need and the potential to improve quality of life and psychological aspects of care.

[Steve McCabe]

If the NHS were to develop that approach, would it not, as well as giving people much more freedom, autonomy and control over their life, produce massively more data—the strongest commodity in the NHS at the moment—which would mean that we could predict this condition, and look at other possible methods of controlling or treating it?

--- Later in debate ---

[Mr Howarth]

My hon. Friend is right, and I did highlight earlier that I was unable to get statistics, either centrally or at CCG level. It is important that we collect more data, interpret it properly, and use it to inform policy.

Secondly, there should be mandatory funding accompanying any positive guidance from the National Institute for Health and Care Excellence as part of a technology appraisal, and a national clinical consensus pathway that covers artificial pancreas technology, with NICE incorporating that into commissioning guidance. That sounds very bureaucratic, but if it was taken seriously, it could have a major positive impact.

Thirdly, there should be progressive procurement policies that recognise the value, within the foundations of artificial pancreas policy, of innovations such as continuous glucose monitoring and insulin pump therapy. We should encourage continuous glucose monitoring with integration capacity, and insulin pumps that have artificial pancreas potential. I would also encourage continued innovation in diabetes technology. If we are to progress towards an artificial pancreas, the foundations need to be better established across the country; that is in addition to the changes I have highlighted. A 2018 audit of the use of insulin pumps showed a positive increase in usage, but also highlighted a wide disparity between specialist services, which we have already mentioned.

[Sandy Martin]

Is it not the case that in CCG areas where specialist pumps and continuous glucose monitors are prescribed regularly, the amount of emergency care needed for people with type 1 diabetes is reduced? Not investing in those things makes no financial sense whatever.

[Mr Howarth]

My hon. Friend is right. This is not just about technology, important though that is. Anyone with diabetes who manages it well—and technology will help to do that—will have fewer hospital emergency admittances. I do not have the statistics to hand—I am not even sure they exist—but those people will clearly have fewer hospital admittances and fewer complications with their diabetes, and therefore cost the NHS less. As I am sure the Minister will acknowledge, however, the NHS is not very good at doing cost-benefit analysis. It needs to get smarter at it, because the point that my hon. Friend makes is right, not only as regards the support we give to people with type 1 diabetes, but about the cost to the NHS of dealing with the consequences.

[Liz McInnes]

I want to echo the point about cost-benefit analyses and how bad the NHS is at joining up different departments’ budgets. It really needs to get better at being able to identify that spend in one area leads to a huge reduction in spending in another.

[Mr Howarth]

My hon. Friend makes the point more clearly and eloquently than I did.

A new device that takes us closer to the artificial pancreas has been developed by Medtronic: the MiniMed 670G. A number of people with type 1 diabetes have started using the system in the UK in a pilot phase before it is rolled out more widely across the country. However, only 15.6% of those with type 1 diabetes are using insulin pumps, and it is potentially a concern that healthcare professionals would be unlikely to recommend an artificial pancreas if someone was not already using a pump and continuous glucose monitoring. If the issues to do with NHS access to today’s type 1 diabetes technology can be addressed, a path can be cleared towards adoption of the artificial pancreas.

We need to ensure that people living with diabetes are equipped with the skills to self-manage. That would support patients in using current technologies effectively, and ultimately in using artificial pancreas systems. Structured education is central to enabling people living with type 1 diabetes to best manage their condition through effective use of monitors and insulin pumps. The NHS can support type 1 diabetics to do that by increasing the provision and uptake of diabetes education. To do that, it needs to make diabetes education courses more accessible and convenient, possibly through digital solutions.

A recent survey by Dexcom revealed that more than three quarters of people with diabetes suffer from stress, anxiety attacks or bouts of deep depression. While healthcare teams help, and teach people how to manage their blood glucose levels, type 1 diabetes is largely a self-managed condition. The NHS needs to ensure that the resources and community support that people with type 1 diabetes require are well advertised, well recognised, well understood and well invested in. I believe we are on the threshold of being able to make type 1 diabetes not a thing of the past, but a thing that can be well and easily managed, and I hope the Minister will take these words seriously and do everything she can to advance that day.