Type 1 Diabetes (Young People)

Jamie Reed Excerpts

Wednesday 30th April 2014 Westminster Hall

[Mr Jamie Reed (Copeland) (Lab)]

I, too, thank my right hon. Friend the Member for Knowsley (Mr Howarth). I know how much this means to him and his family. I am genuinely grateful for all the work that he does in this regard.

This is a vitally important debate. We have had a tremendous debate today, involving hon. Members from all parties, providing us with a brief opportunity to deal with important issues that have stood neglected for too long. People with type 1 diabetes are not receiving the services they need or the support that they deserve; this is a fact. Often—let us be honest about it—we debate pure opinion, but it is an absolute fact that people with type 1 diabetes are not getting the level of services that they require.

I declare an interest as someone who has lived with type 1 diabetes for four years, after being hospitalized as an undiagnosed type 1 diabetic suffering from advanced diabetic ketoacidosis, two weeks before the last general election. The things people do to get out of it! I have never particularly enjoyed talking about the condition, principally because our medical histories are our own private business, but also because of the risk this poses of allowing others to define me as a person and as a politician. As the hon. Member for Torbay (Mr Sanders) has proven, reservations that people might have about people with the condition are unfounded. The longer I live with the condition—it is important to point out that this is a condition and not a disease—the more angry and frustrated I become with the treatment I receive and, more importantly, about the treatment that other people living with the condition receive.

The National Institute for Health and Care Excellence recommends that type 1 diabetics should receive nine key tests for diabetes care every year, yet thousands are missing out on these tests. In the four years that I have been a type 1 diabetic, only once have I received all nine tests. These tests are essential to ensure that diabetes is controlled. If left unchecked, diabetes can, as we heard, lead to blindness and kidney failure, and can increase the risk of developing cardiovascular problems, such as heart attacks and stroke. The National Diabetes Audit found that young people are the least likely of any group to access these nine treatments.

We have also heard that type 1 diabetes is a chronic, life-threatening condition that has a lifelong impact on those diagnosed with it and their families. It affects about 400,000 people in the UK, including 29,000 children, which is equivalent to more than 600 people in each constituency. Type 1 diabetes is not caused by lifestyle factors, such as obesity, poor diet or lack of exercise—I should know; I have just run the London marathon on behalf of the Juvenile Diabetes Research Foundation—and there is currently no way to prevent the condition.

People with type 1 diabetes rely on multiple insulin injections or pump infusions every day, just to stay alive; we know this. In 2014, a person with type 1 diabetes will on average undertake more than 2,000 finger-prick blood tests, have 1,500 insulin injections and count the carbohydrates in more than 1,000 meals.

A child diagnosed with type 1 diabetes aged five faces 19,000 injections by the time they are 18 years old. Since my diagnosis, I have been fortunate enough to meet many young people with the condition and each and every one of them inspires me. I am incredibly grateful for the work that they do through the Juvenile Diabetes Research Foundation and through Diabetes UK. Their advocacy is superb and their voice is becoming louder, but I say to them that it needs to become much louder still.

Good blood glucose control is hard to achieve. Type 1 diabetes reduces life expectancy by approximately 12.5 years in people with the condition aged 20 to 24 years old, compared with similarly aged adults without the condition. High blood glucose can cause very serious long-term damage to the body. On average, complications of type 1 diabetes set in 20 years after diagnosis, meaning that a child diagnosed at age five may begin to show signs of damage that can lead to sight loss, kidney disease, limb amputation, heart attacks and stroke by the age of only 25.

Just 6.7% of children with diabetes in England and Wales, 96% of whom have type 1 diabetes, are receiving their full set of annual recommended checks. That is a national scandal and it should shame these Houses of Parliament. Type 1 diabetes in young children presents more than a health burden. In 2011, members of the parent group, Children with Diabetes, reported that 60% of families had to change their working arrangements and almost half—48%—had seen a significant drop in their family income. Shockingly, as we have heard, more than half felt that their child had been bullied as a result of having type 1 diabetes.

Type 1 also brings with it an increased risk of depression, with 32% of people with type 1 diabetes showing signs of depression, compared with 16% in the general public.

In addition, type 1 diabetes leads to huge costs for the health service and the wider economy. The lifetime cost to the UK economy of everyone living with type 1 diabetes today is more than £55 billion. This figure is only going one way, and that is up. In 2014, conservative estimates suggest that type 1 diabetes will cost the NHS £1 billion directly and a further £1 billion to the wider economy more generally, excluding a number of treatment costs.

In 2008-09, the Medical Research Council invested £6.6 million in type 1 diabetes research, but unfortunately that fell to £3.9 million in 2010-11 and £4 million in 2011-12. In short, we are spending less than half the per capita figure spent in Australia—the hon. Member for Cities of London and Westminster (Mark Field) made this point earlier—and less than a third of the United States per capita figure, and the Canadians spend almost three times as much per capita as we do. Will the Minister explain why?

Incidence of type 1 diabetes is growing at a rate of about 4% each year. The recent report “Impact Diabetes” estimates that 650,000 people in the UK will live with the condition by 2035, if incidence continues at the same rate. That report also estimates that by 2035-36 the direct cost to the NHS of treating type 1 diabetes will be £1.7 billion and the indirect cost to the UK more generally will be an additional £3 billion.

The UK has the fifth highest incidence of type 1 diabetes in the world and it is increasing at an alarming rate. Research is the key to addressing this growing problem, but UK Government funding for type 1 research has fallen significantly. Let us be honest; this reduction is jeopardising our position as Europe’s number one place for type 1 diabetes research and investigation and I passionately believe that this is letting people with type 1 diabetes down.

The truth is that we are failing people with type 1 diabetes. As a nation we need a war effort—I am not ashamed to say it—in our work to improve treatments and services for people, particularly young people living with type 1 diabetes. We must ensure that every young person with type 1 diabetes receives the nine annual tests. Will the Minister explain how he thinks this can be done and what he will do about it?

Too often I hear from type 1 diabetics and their families that they cannot access insulin pumps, that blood glucose monitoring strips are being rationed and that it is getting harder to access primary care to get the help they need to manage their condition. Will the Minister take a close interest and deal with these issues where they arise around the country? There is huge, clear geographical disparity and it needs some close Government attention.

I will write in detail to the Minister about what needs to happen to improve the lives of people with type 1 diabetes. What is needed is more attention and understanding and more research and resource, to ensure that people with type 1 diabetes receive the care that they deserve. I look forward to the Minister’s reply.

--- Later in debate ---

[Dr Poulter]

As I mentioned earlier, it is important that we learn from good practice, not just in the UK but elsewhere. A key driver of improving practice is clinical audit of the quality of services delivered. Outcomes for people with diabetes in England will also be assessed by the national diabetes audit, which includes a core audit, the national in-patient diabetes audit, a diabetes pregnancy audit, the national patient experience of diabetes services survey and the national diabetes foot audit, which is due to be launched this summer. Having that high quality comparative data, gathered through clinical audit from different care settings across the UK, will help us to understand where services are and are not delivered well. Audits in particular care settings always make recommendations for improvement, and the following year there is another audit. Exposing where care is good or not so good and putting in place plans for improvement on the ground will be a big step forward. At a national level, we can then look at which improvement plans have worked and which have been less successful. That learning is a good way of driving up standards and can be shared with Northern Ireland and other devolved parts of the United Kingdom, and indeed on an international basis. I believe that in this country we are historically good at collecting data. The purpose of national audits is to drive up standards of care, which is why NHS England is putting many more national audits in place throughout the health service. We will be able to compare what is done in different care settings, learn where care needs to be better and drive up standards throughout our health service.

We all understand the importance of the integration of mental health care and diabetes care for the young people who have serious health issues resulting from that combination of issues, which puts them at high risk of complications and premature death. The Government are investing £54 million over four years to enhance the children and young people’s improving access to psychological therapies—CYP IAPT—programme. That programme is helping to transform services through training in evidence-based therapies to support children and young people with a range of mental health issues. I am sure we all support that programme and want to see it expanded further.

I am glad to say that investment in type 1 diabetes research by the Medical Research Council and the National Institute for Health Research has risen from more than £5.8 million in 2011-12 to more than £6.5 million in 2012-13. The National Institute for Health Research is funding a £1.5 million trial focusing on children and young people with type 1 diabetes, which is comparing outcomes for patients treated with multiple daily insulin injections to outcomes for those using pumps, one year and five years after diagnosis. The report of the trial is due to be published in a few months. When we are looking at how best to support people with type 1 diabetes in leading as normal a life as possible, whether that be in education or in the workplace, it is important that we understand which interventions and methods of support work best. I am sure that that research will put us in a much better place on that.

[Mr Jamie Reed]

Is the Minister aware of the JDRF’s “#CountMeIn” campaign? It is calling for an investment of £12 million per annum by the MRC and NIHR to bring the UK in line with recent per capita spending by Governments internationally. Has he given any thought to that and if so will he comment on it?

[Dr Poulter]

With research funding there is often a bidding process, and it is up to organisations to bid for funding. I am pleased that the amount of money going into diabetes research is improving and that there is a now a project specifically on type 1 diabetes that is looking at the impact of different interventions and support—such as the use of pumps—on young people’s lives to see which methods work better. The emphasis is not just on clinical outcomes but on how young people’s experience and quality of life is affected, so that that is taken into account in how we look at diabetes. Health care research funding is moving in the right direction, and not just for diabetes—research funding has increased considerably over the past few years in a number of areas of health care, something that we should welcome.

As we know, NICE has national standards, but in the few minutes left I want to discuss the best practice tariff. The way that we set up commissioning arrangements and the best practice tariff will help us make a difference in the future. The tariff ensures that payment is linked to the quality of care provided, an important driver of how services are delivered to patients.

I will briefly set out aspects of the diabetes best practice tariff. A young person’s diagnosis is to be discussed with a senior member of paediatric diabetes team within 24 hours of presentation, to get early specialist support in place. All new patients are to be seen by a member of the specialist paediatric diabetes team on the same or the next working day, and each patient is to have a structured education programme, tailored to their needs and the needs of their family, to support them and help them understand how they can better cope with their condition and manage it themselves as best as they can. The tariff places a strong emphasis on multidisciplinary team work, including support from dieticians—we have heard about issues connected to eating disorders, and dieticians will have a key role on that. Many other aspects of the tariff focus on multidisciplinary working to put things on a better basis for young people with diabetes.

The right hon. Member for Knowsley raised a number of other issues in the debate; I will write to him about those matters. The issue is complex and important, but I hope that I have been able to offer some reassurance. The tariff and the increased spending on research mean that we are moving to a better place with our support for people with type 1 diabetes.