Adrian Sanders MP
Adrian Sanders is the Liberal Democrat MP for Torbay. He is the Chair of the All-Party Parliamentary Group for Diabetes. He is also the President of the newly established Parliamentarians for Diabetes Global Network (PDGN) an advocacy programme of the International Diabetes Federation. He has had type 1 diabetes for nearly 25 years.
"It is a pleasure to speak under your chairmanship, Dr McCrea, for what I think is the first time.
"Diabetes is the fastest growing health threat in the UK, the EU and across the globe. I will first talk a little about what diabetes is. It is a condition in which there is too much glucose in the blood because the body cannot use it properly. That happens because the pancreas does not produce any insulin, or does not produce enough, or because the insulin it produces is unable to work properly. That is a problem because insulin is the key that unlocks the door to the body’s cells so that glucose can enter them. Diabetes means that the body is unable to use glucose as fuel; instead, it builds up in the blood.
Types of diabetes
"There are two main types of diabetes, type 1 and type 2. They are different conditions with different causes; the treatments can be different as well. Both types are serious, lifelong conditions that can lead to devastating complications if they are not managed well, but with the right treatment and support people with diabetes can reduce their risk of developing such complications.
"People with type 1 diabetes cannot produce insulin. About 10% of people with diabetes have type 1; I myself have had type 1 diabetes for nearly a quarter of a century, and I am still here. No one knows exactly what causes it, but it is not to do with being overweight and it is not currently preventable. It usually affects children and young adults, starting suddenly and getting worse quickly.
"People with type 2 diabetes do not produce enough insulin or else the insulin they produce does not work properly. About 85% to 90% of people with diabetes have type 2. They might get it because their family history, age or ethnic background put them at increased risk. People are also more likely to get type 2 if they are overweight. It starts gradually, usually later in life, and it can be years before people realise they have it.
"There are of course exceptions with both types: there are people who have got type 1 quite late in life and there are quite young people, including children, who have type 2, which is not always the consequence of the weight a person is carrying at the time of diagnosis. As with all things, the exceptions mean it is difficult to make a comprehensive diagnosis of what is happening, precisely why it is happening and how it can be prevented.
Diabetes in UK
"In the UK, around 3.2 million people have diabetes, and the condition costs the NHS over £10 billion a year. Within the EU as a whole, one in 12 adults have diabetes, and one in three people with the condition apparently do not know that they have it. In this country we have done a lot of work on trying to find what was referred to as the missing million—the people who have diabetes but had not been diagnosed. I believe the figure is now around 750,000, so around 250,000 people have been diagnosed as a result of greater awareness. I will be referring to that a little later.
"According to the International Diabetes Federation, globally there are 382 million people with diabetes, a figure that is expected to rise to 592 million by 2035.
"The number of people with type 2 diabetes is increasing in every country in the world, and 80% of people with the condition live in low and middle-income countries. The greatest number of people with diabetes are between 40 and 59 years of age, and diabetes caused 5.1 million deaths in 2013. A really frightening statistic is that every six seconds a person dies from diabetes somewhere in the world. It is a global problem—a global pandemic—and requires a global response.
"That is really what the Melbourne Declaration on Diabetes (PDF:343KB) was all about. Parliamentarians representing 50 different countries came together to talk about what was happening in their countries and what the problems were, and to discuss how we could co-operate better. We recognised that many bodies work transnationally: patient bodies, medical professionals and pharmaceutical companies all meet regularly on a transnational basis. One group that does not is parliamentarians, yet it is the parliamentarians who can initiate debates, vote on budgets, raise awareness and put pressure on Governments in a way that other bodies cannot. In a sense, the parliamentarians are the missing link.
"The aim was to bring those parliamentarians together to work together to commit themselves to be advocates in the fight against diabetes and to recognise the global challenge. Those who attended committed themselves to raising the profile and working for the benefit of people with diabetes wherever they live in the world. Since the declaration was signed, over 100 parliamentarians have signed up as members and many more have declared themselves supporters. Two newsletters have been published and are hosted on the International Diabetes Federation website, a Twitter account is now active, and debates have occurred in Russia, Bolivia, Malta, Kenya, Scotland and now here today in the Parliament of the United Kingdom.
"There are so many issues to address. One is prevention. Far more needs to be done on that. We may have reduced the number who are missing their diagnosis, but there are still 750,000 people out there with diabetes whose condition will develop and whose cost to the health service will increase the longer they go undiagnosed. Health education is vital, to make people aware of the risks involved. We also need information out there to combat people’s fears that if they are diabetic they will have to inject themselves with needles all their lives. Only 10% of people with diabetes are type 1 and have to take insulin subcutaneously by injection—believe me, when someone is confronted with the fact that they have to inject themselves with a needle or they are going to die, they no longer worry about injecting themselves with a needle—so 90% of people with diabetes do not have to worry about that. They can be treated by diet and tablet, and different regimes.
"There is still a stigma. There are Members of this place who have diabetes but do not want other people to know about it, although it is good that increasingly Members are prepared to come forward. The situation is the same in other professions. One great thing the all-party group on diabetes achieved was a change of policy in the police, the ambulance service and the fire service: people who admitted that they had diabetes were being retired immediately, but now instead they are given individual annual medical assessments to see what they can and cannot do. Sacking people simply because of a condition seems such an obvious injustice, especially as many of them can control that condition and hold down their job as well as any other person so long as they are monitored and have that medical assessment.
Cost of diabetes
"Prevention will save millions. There is no doubt that the bulk of the cost of diabetes to health care systems is at the point when the complications come in and a person with diabetes has to be hospitalised. It is an interesting phenomenon that people with diabetes stay longer in hospital beds than people without it. That includes people who have been admitted to hospital for something that has absolutely nothing to do with their diabetes, or who have come in for elective surgery. The change of environment on going into hospital disables them in terms of being able to control their condition. Increasingly now, many hospitals are saying that, as people with diabetes basically self-medicate 365 days of the year, if they go into hospital, they may as well carry on self-medicating, because they know their body better than the health service is likely to.
"The savings to the health service from prevention are quite phenomenal. Early diagnosis is also important, as it reduces complications, so we need to encourage people to come forward and be tested. That is linked to the need for education and information so that people do not fear being tested or being diagnosed with the condition.
"Sadly, many people with the condition are not getting the checks that they are supposed to get from our health service. Diabetes UK has taken that up and argues that everyone should be entitled to 15 checks whenever they go to their GP for an annual check-up. The fact that they are not getting all 15 checks suggests that something is not working correctly in the system. Some GP practices are excellent, but others are not so good and we must ensure that everyone gets the minimum 15 checks.
"The pump device for those who are insulin-dependent is a small device about the size of a pager. It is attached to the patient and provides insulin doses, almost mimicking the pancreas. It is a very good regime, particularly for children who do not want the paraphernalia of injection pens and so on. They can enjoy a life in which other children do not recognise that the diabetic is different. They must still check their blood sugar, but we are looking and hoping for the development of a single device that both tests blood and injects insulin, completely mimicking the pancreas. It is out there, but it is not yet widely available. The cost must come down and more testing is needed, but that is the future. People must live with diabetes now and the level of pump prescribing here is well below that in other EU countries. Any child who is diagnosed with diabetes should be automatically put on a pump unless there is an objection. It is the obvious way to get a child to control their condition early and to enable them to enjoy their life along with other children of the same age.
People in care
"The treatment of people in care with diabetes leaves a lot to be desired, and a lot more needs to be done in the various care inspection regimes to ensure that people with diabetes who go into residential or nursing care are properly looked after.
"There are questions about research. Are we spending enough on research on a cure? Are we researching better conditions and finding the best treatment regimes for people with type 1 or type 2 diabetes?
"Children with diabetes must be supported in school and I hope that the Children and Families Act 2014 will go some way to helping parents with some of the problems. Some schools have refused to deal with a child with diabetes or to help them to test their blood sugar levels and take their insulin. Some schools insist that a parent must be in attendance at the school, which often means taking someone out of a job to be a full-time carer of their child with diabetes in school. Surely that is not desirable.
"There are complications with transition when children move from primary school to secondary school, and then to university. They often have to deal with three health care regimes: paediatrics, adult care and student care services. Problems often arise as a consequence of those transitions.
"I mentioned discrimination in the workplace in relation to blue light services. We were able to campaign against that to help to tackle it. That discrimination is still out there. People must have the courage to come forward in cases where there has been discrimination on the grounds that they have diabetes. There is probably much better understanding now in the workplace about diabetes, but there are still pockets of ignorance that need to be tackled.
"All that occurs in the UK, with its well developed health care service, many aspects of which are the envy of other countries. The Commonwealth study that has come out this week shows that the UK health service is at No. 1. That is testament to everyone who works in the health care service. They deserve our congratulations on delivering such a fantastic service cost-effectively for the majority of people who need to access services. I may list a whole load of issues and problems, but it would be wrong to be all doom and gloom and to think that we are lagging behind. We are way ahead, but we want to be even further ahead and to bring other countries up to our level. We must and can do more.
National strategy and action plan
"Internationally, the 66th World Health Assembly adopted a global target to halt the rise of diabetes and obesity by 2025. Every nation needs a national strategy and action plan to prevent and manage the diabetes pandemic. It is unfortunate that we no longer have a national service framework for diabetes in this country. The Government should think again about that because without a national plan and national strategy, it is difficult to determine whether we are achieving what we want to achieve in terms of reducing the number of people with diabetes, diagnosing those who have the condition and ensuring that treatment is as good as the best anywhere in the UK.
Role of parliamentarians
"The Parliamentarians for Diabetes Global Network, which was set up through the Melbourne declaration, can help to facilitate the objective that the World Health Organisation has laid down for health care systems around the world. The network’s priority in its early years will be to build a coalition of advocates for action to prevent the pandemic at local, regional, national and transnational levels, with the focus on raising the matter in Parliaments and Assemblies across the globe to spread better understanding and awareness of diabetes and the urgency with which it needs to be addressed.
"Following the declaration and events in Parliaments around the world, the ExPAND Policy Toolkit for Diabetes (PDF: 12.33MB) has gone live and will greatly assist the aims of the declaration. It is a practical guide to help diabetes advocates to challenge national Governments and to raise the profile of diabetes. It is the first comprehensive resource aimed specifically at helping MPs and other policy makers to shape and influence national policy to ensure that we prepare our health care systems for the challenges of the 21st century. With input from parliamentarians for parliamentarians, it provides a one-stop resource covering the economic case for investment, evidence of what works and best practice from across Europe, as well as practical steps for leading and developing new policies on diabetes that are fit for purpose. Key topics include prevention, self-management, innovation and person-centred care. There are also dedicated chapters on the care and treatment of children and older people. It is hosted on the International Diabetes Federation’s website and is available for any parliamentarians who want to avail themselves of its usefulness. The toolkit was the result of more than a year’s work by a network of parliamentarians, patient representatives and other opinion formers from across Europe.
"The Melbourne declaration is a clarion call for action across the world and the ExPAND Policy Toolkit for Diabetes is a resource to turn words into action, but we also need momentum to reach that tipping point where no one questions why the global pandemic of diabetes receives priority attention for resources to prevent, to diagnose and to treat the condition."