Meeting date: Tuesday, January 10, 2017
Meeting of the Parliament 10 January 2017
Agenda: Time for Reflection, Topical Question Time, Protection and Promotion of Human Rights and Fundamental Freedoms (European Union), Decision Time, Type 1 Diabetes
- Time for Reflection
- Topical Question Time
- Protection and Promotion of Human Rights and Fundamental Freedoms (European Union)
- Decision Time
- Type 1 Diabetes
Type 1 Diabetes
The final item of business is a members’ business debate on motion S5M-02223, in the name of Clare Adamson, on type 1 diabetes in Scotland. The debate will be concluded without any question being put.
That the Parliament understands that Scotland has the third highest incidence of type 1 diabetes in the world and that more than 29,000 people are living with the condition with incidence rising particularly rapidly in children under the age of five; recognises the challenges that people with the condition face on a daily basis with constant monitoring and injections of insulin to manage it; understands that it is not linked to lifestyle factors such as diet or exercise; commends the work of JDRF, which is the type 1 diabetes charity that is funding research projects in Dundee, Edinburgh and Glasgow to improve the lives of people with the condition until a cure is found, and notes JDRF’s objective to foster collaboration between industry, academics and clinicians to ensure that new research is driven forward and that Scotland can play a leading role in finding a cure for type 1 diabetes.17:05
I thank my colleagues across the chamber for supporting the motion and enabling the debate to happen. I welcome to the public gallery representatives of the Juvenile Diabetes Research Foundation and members of the type 1 diabetes family community in Scotland.
The debate is intended to raise awareness of type 1 diabetes, a condition that affects 29,000 people living in Scotland. Scotland has the third-highest incidence of type 1 diabetes in the world. I am by no means an expert on the disease; my relationship with the JDRF began when I was invited to the wonderful Strathclyde country park in my constituency to open the JDRF one walk fundraising event this year. I met many families at that event, which raised over £70,000 for type 1 diabetes research. I commend the families and those who support people with type 1 diabetes, which is an extremely profound diagnosis for someone in a family to have. For young children, it can mean disruption to sleeping patterns and their education, with constant monitoring required to ensure the glucose balance in the body.
I was very pleased to meet some families at a JDRF event held by my colleague Anas Sarwar in the Parliament. Again, I commend the family representatives at that event, who included Ruth Elliot, whose son Ben was diagnosed with type 1 diabetes when he was 18 months old. Ruth raised over £23,500 for the JDRF by climbing Kilimanjaro and taking part in other fundraising events. I commend, too, David Ballantyne, whose granddaughter has a type 1 diabetes diagnosis and who made national headlines last year when he hauled a 19-stone anvil up the Arran peak, Goatfell, over a 26-day period. It was a Herculean effort that raised £15,400. Again, I commend the community for getting behind and supporting those who suffer from the disease.
I also want to mention Anna Ferrar, who I am sure was having a day off school when she visited the Parliament, but it might even have been a day off nursery. She came along and was able to demonstrate how she manages her diabetes with continuous glucose monitoring technology, which she can read using her mobile phone. Her family has to fund that method of controlling her disease on an on-going basis.
To set the tone for the debate, I will quote Peter Jones, chair of the JDRF Scotland development group, who said:
“I was diagnosed with type 1 diabetes when I was 37 and the impact that had and will continue to have on my life is quite profound. It is not linked to lifestyle and there is no known cure. Managing the condition on a day to day basis is like walking a tightrope. We have the expertise to accelerate the path towards the discovery of new treatments — and one day the cure — if we can encourage Scotland to lead the global fight against type 1 diabetes.”
We should be doing that, and that quote sets the tone for what I want to share with my colleagues and the wider community in Scotland about the work that the JDRF does. The JDRF has three research streams, one of which is to find a cure for type 1 diabetes sufferers through a system that would replace the molecules lost in the pancreas because of the attack on it by the immune system, which causes type 1 diabetes. The JDRF also has a treatment research stream that is looking specifically at the development of an artificial pancreas to replace the body’s pancreatic function and provide insulin and monitor glucose levels in the body automatically. The JDRF is also looking at a smart insulin that could be injected at any time by a type 1 diabetic but that would become active in the body only when glucose levels required it.
That is very innovative research work, but the JDRF is also looking at a prevention research stream that involves furthering the understanding of genetics and the immune system to try to prevent the immune system fault that leads to the development of type 1 diabetes in the body.
Scotland is home to some of the world’s best type 1 diabetes research, and Scotland-based researchers in Dundee, Edinburgh and Glasgow receive funding in the region of £3.9 million from the JDRF every year. The Scottish Government’s chief scientist office co-funds the Scottish diabetes research network type 1 bioresource, which contains samples of blood, urine and DNA from more than 6,100 type 1 diabetes patients in Scotland. That unique and fantastic resource, coupled with Scotland’s world-leading and award-winning SCI-Diabetes system, from the Scottish care information—diabetes collaboration, provides a comprehensive snapshot of diabetes in Scotland, and it is the envy of others across the globe. SCI-Diabetes data can be viewed at general practices and hospitals, and patients can view their own data to support self-management of their condition.
The Dundee-based Scottish care information—diabetes collaboration delivers SCI-Diabetes, which was commissioned and is owned by the Scottish Government and provides a fully integrated, shared electronic patient record to support the treatment of NHS Scotland patients with diabetes. The JDRF says that that patient record is
“the jewel in the crown of Scotland’s arsenal to fight diabetes and has been successfully exported to the Middle East.”
It provides functionality for both primary care and secondary care clinicians, and includes special modules for paediatrics, podiatry, diabetes specialist nursing and dietetics.
When I met patients I learned that they sometimes get frustrated that type 1 diabetes is linked with type 2 diabetes. At the time of the walk that I attended, patients were particularly concerned about the Food Standards Scotland campaign that had been run, which did not initially make the distinction between type 1 and type 2 diabetes. I can tell the families I met that day and the families who are in the public gallery today that, to the best of my ability, I addressed that with Food Standards Scotland. I thank the chair, Ross Finnie, and the chief executive, Geoff Ogle, who met me at a productive, open and helpful meeting. I am sure that the concerns of the type 1 community are very well understood at this time.
I again thank my colleagues for the opportunity to raise the concerns and challenges that are faced by the type 1 diabetic community. I look forward to the rest of the debate.17:12
I congratulate Clare Adamson on securing this members’ business debate on type 1 diabetes. I hope that we can agree a consensus across the chamber to raise awareness of the condition and of the work that is needed to drive forward research into a cure.
I, too, commend the work of the JDRF, whose passion and dedication to research and campaigning to find a cure for type 1 diabetes is exceptional. I am grateful for the comprehensive briefing that was provided by the JDRF, and particularly for the way in which it set out the issues that it wishes to form the basis for continuing discussion with the Parliament, with a focus on excellence in research and collaboration across northern Europe.
Last September I attended a meeting hosted by Anas Sarwar, where families affected by type 1 diabetes called on MSPs to raise awareness of the condition and to put Scotland at the forefront of type 1 diabetes research. It is valuable for politicians to hear testimonies of what the condition is actually like from those who must live with it.
I welcome the research that is being undertaken by the JDRF into curing, treating and preventing the condition. I hope that that work will help us to understand why the incidence of the condition is rapidly rising among children under the age of five in Scotland.
The approach that is being taken to foster collaboration between industry, academics and clinicians is welcome, and I hope that it proves successful in producing results that can improve the condition of those who live with type 1 diabetes.
The JDRF has shown that it wants to work with parliamentarians to target investment at type I diabetes research, reduce the bureaucracy that hinders that research, and improve the delivery of the research findings. I hope that members across the chamber can agree to work with the JDRF on those aims.
I welcome the additional funding of £10 million from the Scottish Government to fund more insulin pumps and continuous glucose monitoring equipment. It is a step in the right direction but we must continue to strive further to improve research into and treatment of type 1 diabetes. I hope that the Scottish Government will commit to safeguarding and fully funding the Scottish care information—diabetes collaboration database, which the JDRF describes as
“the jewel in the crown of Scotland’s arsenal to fight diabetes.”
The JDRF has also shown interest in a northern European area of excellence. We share a mutual interest with various Scandinavian countries such as Finland, Sweden, Norway and Denmark, each of which is among the top ten countries in the world for type 1 incidence in children. There is an opportunity to enter discussions with those countries on shared interests in research.
It is clear from the dedicated campaigning work undertaken by the JDRF that there is a three-way approach to dealing with type 1 diabetes. There must be understanding, management and treatment of the condition. Parliament and all parliamentarians can take steps to progress that. Tonight’s debate alone is essential in raising awareness, particularly when we consider the fact that Scotland has the third-highest incidence of type 1 diabetes in the world. The debate will help to generate further understanding of the condition and hopefully will lead to further discussions on the management and treatment of type 1 diabetes.
I hope that we can continue to work together to support the world-leading research that is happening here in Scotland and, with political will alongside the work of leading industries, academia and clinicians, that we can eventually deliver a cure for type 1 diabetes.17:17
I congratulate Clare Adamson on securing the debate and on the work that she has undertaken in this area inside and outside Parliament. I also thank Diabetes Scotland and the JDRF for their useful briefings ahead of this evening’s debate. As the motion makes clear, type 1 diabetes, unlike type 2, is not linked to dietary or lifestyle factors. Rather, it is an autoimmune condition whose cause is not yet understood and which cannot be prevented at present.
I have a good friend who has had type 1 diabetes her whole life. I have to say that it has always amazed me how she has never let it hold her back in anything she has turned her hand to. Growing up and working with her, I was always concerned about the constant strain that the monitoring of her blood glucose levels had on her body as well as the insulin injections that she has to take and the effect that it all had on her life, especially when she was a young woman growing up. As has been mentioned, blood glucose levels must be monitored up to 10 times a day so the development and roll-out of continuous glucose monitoring, an area in which Scotland has recently lagged, will be a real benefit to type 1 diabetes patients.
The Scottish Government’s recent announcement of £10 million is welcome, although we need more details about how and on what timescale that funding will be rolled out, so that the many thousands of Scottish patients who desperately need CGM can access it without further delay. I hope that the minister will outline those details when responding to this evening’s debate.
I join Clare Adamson in paying tribute to the JDRF for its excellent work both in supporting people who have type 1 diabetes and funding the research to prevent the disease, improve current treatments and eventually, I hope, find a cure.
With Scotland having such a high incidence of type 1 diabetes, it is entirely appropriate that our scientists are at the forefront of such vital research. As the motion suggests, internationally important research is currently being undertaken in Scotland with the support of the JDRF. For example, at the University of Edinburgh in my region, Professor Helen Colhoun and her team are working on a project to develop a set of indicators of the disease, or biomarkers, to be used along with clinical data to find out who is most at risk of rapid progression of diabetic kidney disease. They aim to produce useful information that will help to accelerate the process of developing drugs to prevent and reverse kidney disease in type 1 diabetes patients. I wish those researchers and others working in this area every success.
We must ensure that our national health service is providing the best possible service and support for type 1 patients. Diabetes UK’s 2015 “The Age of Diabetes” report highlighted a range of areas in which improvements are clearly required in Scotland. It is of real concern for everyone in the chamber that the evidence suggests that people with type 1 diabetes are receiving a poorer level of care than people with type 2, with the percentage of type 1 patients who receive their vital HbA1c check each year being lower than the percentage of people with type 2 diabetes. That must be addressed to help to reduce the risk of potential complications as a result of people not being supported to manage their diabetes well. I hope that that is also an area in which we can make changes in the future.
Diabetes is rightly high on the public health agenda and it must remain so. Tackling the rise in the number of people with type 2 diabetes is clearly a policy priority for Governments across the western world. However, we must also recognise the needs of our constituents who have type 1 diabetes and ensure that they are getting the best possible treatment, support and care until our scientists can, I hope, develop the cure that we all want to see.17:21
I congratulate Clare Adamson on securing this debate on a very important issue that touches the lives of and impacts on so many, especially here in Scotland, where more than 6,000 families are known to be affected.
At the beginning of December last year, I attended an event at Dynamic Earth to celebrate the 30th anniversary of the JDRF. I did so to support my constituents Helen and Malcolm Taylor, who in 2012 tragically and needlessly lost their teenage daughter Claire to undiagnosed type 1 diabetes. The Taylors, in seeking to ensure that some small good emerged from a tragedy that has impacted the lives of all the family, have organised events to fundraise for the JDRF and to raise awareness of type 1 diabetes. Let me take this opportunity to express my admiration for the way in which Helen and Malcolm have gone about that and how they have conducted themselves, especially given the specific circumstances around Claire’s passing.
I also note how struck I was by two contributions that were made to the 30th anniversary event at Dynamic Earth. The first of those contributions was from the First Minister, who has very clearly maintained a passion for tackling type 1 diabetes from her days as health secretary. The second came from a 12-year-old type 1 diabetes sufferer called Katie Shaw, who captivated the audience as she explained how research has helped her and her younger sister.
I came away from Dynamic Earth genuinely uplifted because what we heard all round was a story of progress and hope—a story firmly rooted in Tayside. As Clare Adamson’s motion mentions, the JDRF is funding research into type 1 diabetes at the University of Dundee, as is the Scottish Government.
The main project is initially receiving $1.7 million from the charity. The scientists involved in the project are conducting the biggest study of its kind in Europe. They are looking at a new hypothesis that an inexpensive drug with a simple treatment regimen can prevent type 1 diabetes. The study aims to contact all 6,400 families in Scotland affected by the condition, with a view to expanding into England at a later date. Children aged five to 16 who have a sibling or parent with type 1 diabetes will be invited for a blood test to establish whether they are at high risk of developing the disease. If they are, they will be asked to take part in the trial. Researchers will then examine the impact of administering metformin, the world’s most commonly prescribed diabetes medicine, to young people in the high-risk category. If successful, the large-scale trial could explain why the incidence of type 1 diabetes has risen fivefold in the last 40 years and provide a means of preventing it.
Another area in which Dundee is at the forefront of tackling diabetes is the SCI-Diabetes system, which is based in the city. The JDRF, as we have heard, cites this as the jewel in the crown of Scotland’s arsenal to fight type 1 diabetes. SCI-Diabetes provides a fully integrated shared electronic patient record to support treatment of NHS Scotland patients. With the right safeguards in place, it can also be a great tool for researchers studying patterns in type 1 or looking to recruit people to trials.
There is much to be optimistic about in getting to the root cause of type 1 diabetes and finding a cure, but we are not there yet and as long as there is no cure, we must do what we can to make the lives of those with diabetes easier. That is why I so warmly welcome the recent announcement of £10 million of funding from the Scottish Government for insulin pumps and continuous glucose monitoring equipment. There are now 3,200 insulin pumps in use in Scotland, which is an increase of 400 per cent since 2010 and is thanks to £7.5 million in previous funding from the Government. The new tranche of funding will build on that over the next five years and will help people to better manage their diabetes. Beyond that, the JDRF states that, one day, there will be
“a world without type 1 diabetes”.
I will conclude on those positive and hopeful notes.17:25
I, too, congratulate Clare Adamson on securing the debate and on her clear and passionate speech on type 1 diabetes. I should declare an interest of sorts, as the long-standing joint convener of the cross-party group on diabetes and as the first Scottish parliamentary diabetes champion. I put on record my thanks to all the groups and people in Scotland who work with people with diabetes, including the JDRF, Diabetes Scotland, the scientists and researchers and, of course, the dedicated doctors, carers, consultants and diabetes nurses.
We should not forget our proud history on the issue. In 1921, a Scot, Professor John Macleod, along with Banting and Best, discovered insulin, for which he received a Nobel prize in medicine. Before 1921, having type 1 diabetes was a death sentence. My late father-in-law was diagnosed at the age of 10 and was told that he would live only until he was 20 but, in fact, he lived for another 65 years. He taught me that, with well-regulated pen-needle injections and diet, people can live a normal and balanced life.
What is the big picture? The prevalence of the condition has doubled since 2003. It is the main cause of blindness in those of working age, and 10 per cent of NHS hospital expenditure relates to the treatment of diabetes and its complications. Forty per cent of people living with type 1 have some form of diabetic retinopathy.
Clare Adamson’s motion rightly focuses on research. We have a huge acute challenge, but we also have unparalleled opportunities to improve the lives of people with the condition. In my view, we should aspire to be the world leader in type 1 research and development. Scotland has real strength in the life sciences and biotech sectors. We have a real comparative advantage that we should exploit.
I will give one example of best practice in collaboration from my region of the Highlands and Islands involving the so-called triple helix of business, public agencies and the university sector. Johnson & Johnson acquired the UK assets of Inverness Medical Ltd, which was originally established in Inverness to design and manufacture glucose test strips and electronic meters for the global diabetes market. More than 1,000 people are employed at the site, which is regarded as a centre of excellence for those working in the field of diabetes. Highlands and Islands Enterprise played a major role in attracting Johnson & Johnson to the Highlands, which reinforces my view of the importance of a locally based enterprise agency. The site is part of the Highland diabetes institute, which is a unique model bringing together in partnership a commercial company, an academic institution—in this case, the University of the Highlands and Islands—and the national health service.
Just a few short months ago, I took part in a JDRF round-table dinner to debate type 1 research. The participants were leaders in their fields in science, medicine and biotechnology. The clear conclusion was that, with 800 to 900 new cases of type 1 in Scotland every year, we need to make major strides in bio-banking, which is the jargon for the process of taking samples of tissue for research use. As previous speakers have mentioned, first-class work has already been carried out in the Scottish diabetes research network type 1 bioresource. That is a phenomenal resource, but we need a rigorous strategy to protect, grow and nurture the next generation of world-class researchers in Scotland.
I again thank Clare Adamson for her initiative in securing the debate. In the 1920s, a Scot made a revolutionary step change with the discovery of insulin. Our goal for 2020 must be to foster world-class research to prevent, treat and cure type 1 diabetes.17:29
I, too, thank Clare Adamson for bringing this important debate to the chamber.
I am a member of the cross-party group on diabetes and although my initial area of interest was type 2 diabetes and its prevention, I am fast catching up on the details of type 1 diabetes, the difficulties that living with the disease can bring, the fast pace at which technology that can bring relief to sufferers is developing, and the incredible work that is being done by the JDRF and others in the search to find a cure.
A decade ago, the daughter of a friend of mine was diagnosed with the condition at the age of four. How does a parent explain to their four-year-old that she has to have injections every day? My friend gave himself a placebo injection at the same time as his daughter had her injection to help her through it—parents will do anything that they have to. A cure cannot come fast enough.
It has been a steep learning curve for me on the CPG, and my colleague, Emma Harper, who is the group co-convener and a very patient teacher, has led my education. Ms Harper can speak from personal experience, and she has a much deeper knowledge and understanding of the disease than I have and speaks much more eloquently and in more depth on the subject than I can.
I coach an athlete who has type 1 diabetes. He goes through the routine of testing his blood sugar at the start of every training session to ensure that it is at the correct level for intense physical activity. That speaks to a very important point, which is that, in most cases, with careful monitoring and a healthy diet, having a type 1 diabetes diagnosis does not prevent a person from continuing with a full, active and inclusive lifestyle. For example, the athlete concerned has medalled at the Scottish championship and—let us face it—it is possible to be diagnosed with type 1 diabetes and still become Prime Minister.
However, it has become clear to me that there is an uneven spread of access to information, advice, education and certain types of treatment, especially treatment that involves developing technology such as insulin pumps and constant glucose monitoring. That inequality inevitably leads, in turn, to inequality of opportunity and inequality in people’s ability to lead more fulfilling, inclusive and productive lives. We in the cross-party group have heard compelling testaments to the difference that an insulin pump can make to the lifestyle and therefore the wellbeing of a type 1 diabetes sufferer. I can remember a talk that was given at the most recent meeting of the CPG by a young lady about her intense struggles with the condition, which included blackouts, hypoglycaemia, a year lost at university and the constant mental pressure of not knowing when the next collapse might happen. Now that she has been fitted with an insulin pump, despite her initial reservations, it has transformed her life. She now lives a normal, fulfilling life and has even learned to drive, which she thought would be far beyond her reach.
While the search for a cure continues, the challenge in tackling type 1 diabetes is twofold. Education is key to ensuring that all have access both to the information that they require to understand the condition and to the innovations and management systems that allow for normal living. Secondly, a constant financial battle is going on in the health service for appropriate funding to be allocated to the treatment of all diseases and conditions, as well as research into the development of more effective treatments and, ultimately, cures. It is becoming more and more of a juggling act to ensure that all bases are covered, and some of the covers on those bases are inevitably wearing rather thin.
We must not consider conditions in isolation. For example, if we were able to reverse the rise in the incidence of type 2 diabetes and the consequent increasing drain on NHS resources—we are talking about some 12 per cent of the NHS’s overall spend—some of those savings, along with savings on other preventable diseases such as obesity, alcoholism, drug addiction, smoking, musculoskeletal conditions, strokes and heart disease, could be reallocated to the treatment of type 1 diabetes and research into finding a cure. Such a reallocation of precious resource could ensure that access to effective treatments for type 1 diabetes need not be a postcode lottery.
I warmly welcome the chance to discuss type 1 diabetes in Scotland, to commend our NHS staff for their commitment to delivering the very best in care and treatment to sufferers, and to highlight the fantastic research work that the JDRF and other organisations are doing to treat and ultimately cure this potentially debilitating condition.17:34
I, too, congratulate Clare Adamson on securing the debate, which I have really enjoyed, so far. I also want to declare an interest: I am, with David Stewart, a co-convener of the Scottish Parliament cross-party group on diabetes. Understanding how serious type 1 diabetes is means knowing that in Scotland more than 30,000 people have the condition—26,517 adults and 3,812 children.
Type 1 diabetes is not caused by lifestyle and there is currently no way to prevent the condition. The long-term implications of the disease are well documented and include many complications, including increased risk of dying from heart disease and stroke—both of which are clinical priorities in Scotland. Furthermore, microvascular complications can affect the eyes, the heart, the kidneys, the extremities and even the gastrointestinal system. Diabetes complications have a major economic impact on the NHS. About £1 billion a year—10 per cent of the NHS budget—is spent on diabetes and its complications.
People might not be aware of the short-term complications and the day-to-day issues around living with type 1 diabetes. People with type 1 diabetes must continuously monitor glucose levels day and even night to ensure that their blood glucose levels are correct. Blood glucose levels that are too low can lead to hypoglycaemia and even to seizure and loss of consciousness. Levels that are too high can send patients into hyperglycaemia, which can be life-threatening. Therefore, living with type 1 diabetes can, unsurprisingly, disrupt one’s life on a daily and sometimes hourly basis.
It is incredibly important to me to use the platform that is available to me as co-convener of the cross-party group to explore what can be done to help people who live with diabetes. I am particularly passionate about helping families with diabetic children to manage the disease because, during my time as a nurse, I saw how difficult that can be and heard parents’ stories of their daily lives and the behaviours that they have to adapt to. Things can be especially difficult for the parents of children who do not know the symptoms of hypoglycaemia and who therefore have to be monitored closely throughout the night. I would like to emphasise that issue. Some parents wake their kid three times during the night to do a finger stick for the blood glucose sample. Being unaware of low blood sugar can have difficulties, as has been mentioned. Waking children to check blood glucose levels is exhausting for all involved. A child who is diagnosed with type 1 diabetes at the age of five faces up to 19,000 injections and 50,000 finger sticks by the time they are 18—five or more finger sticks a day.
The JDRF is an excellent charity that is working to give a voice to those children and their families and to drive forward research until we find a cure. The research is crucial. I remember in 1978 testing my urine for the presence of sugar. We have come a long way. The charity has funded some of the world-leading research that is happening in Scotland right now, with researchers in Dundee, Edinburgh and Glasgow receiving funding in the region of £3.9 million.
A big step that we can take—and are taking—to make the lives of people with type 1 diabetes easier involves development and funding of new and innovative methods of meeting the challenge of continually monitoring blood glucose levels. For example, we now have continuous glucose monitoring with wee gizmos, such as the one that I am holding up, that enable flash monitoring, which allows greater scrutiny of blood glucose levels. Such improvements allow young people to lead independent lives and to do things that their peers take for granted—for example, travelling to university on public transport, or obtaining a driver’s licence or even a job.
Last year, a new plan to improve the management of type 1 diabetes was backed by £10 million of investment by the Scottish Government.
I again thank Clare Adamson for the debate. I am confident that Scotland can continue to lead the way in development and implementation of technology to help people with type 1 diabetes, and to find a cure.17:38
I join colleagues in congratulating Clare Adamson on securing the debate, and I genuinely thank her for the compassionate and passionate way in which she has worked on the issue. She joined me at the meeting that we had with the JDRF, at which we heard some extraordinary and moving contributions, in particular from young families. She mentioned young Anna, who touched all of us on that day. We thought that the politicians were the centre of attention, but I assure members that young Anna was the centre of attention.
I also want to pay tribute to the JDRF. It is the leading global charity in the area and is leading research that will benefit people not only in Scotland but right across the world. I thank the charity for its hard work and dedication on this important issue.
Although colleagues have already mentioned some of the statistics, I will run through them again quickly. Scotland has the third-highest incidence of type 1 diabetes in the world. More than 29,000 people in Scotland live with the condition. As Alex Rowley said, the condition is increasing at a rate of 4 per cent a year and its increase is particularly prevalent in children under five. At the same time, Scotland-based research is receiving £3.9 million from the JDRF, and research projects based in Glasgow, Edinburgh and Dundee are looking at complications of and treatments for type 1 diabetes.
I want to focus my remarks on how we can improve matters in Scotland, and on some key asks of the Government—indeed, of all political parties. It came across clearly at our meeting that what drives people who suffer from type 1 diabetes is the hope of a cure. That is why the 19 research universities and higher education institutions that are playing their part in a collaboration between industry, academia and clinicians are recognised worldwide. We in Parliament can take pride in Scotland’s potential to be the global leader and to find a cure for type 1 diabetes.
I congratulate the Scottish Government, via the chief scientist office, for pledging £1 million annually to research on type 1 diabetes. I ask the Government whether there is a plan to expand funding for research in the coming years. The JDRF is working closely with the chief scientist office to develop research fellowships in Scotland. Will the Scottish Government commit to supporting the fellowships so that we can widen the research that is aimed at prevention, treatment and a cure for type 1 diabetes? Much important research is happening in Scotland. Can we have a commitment that not only will that research be published and acknowledged but that it will lead to action in Scotland to widen access to, and use of, pumps and continuous glucose monitoring, and that we will share that knowledge and best practice with other parts of the UK—indeed, with the world?
One of the overarching messages that we got from the meeting was about the need for public awareness to stop the confusion between type 1 diabetes and type 2 diabetes. I hope that we have played a part today in creating more awareness; it would be helpful if we could create awareness more generally in the public.
We have heard about the increasing availability of pumps and the extra funding, which are to be welcomed. What level will that be rolled out at in all parts of Scotland? We do not know the details yet about individual health boards. We need to avoid any kind of postcode lottery among health boards—we need uniform access to insulin pumps throughout Scotland. How can we accelerate the delivery of CGM and ensure that access to it is uniform throughout Scotland?
Finally, as someone who has employed an individual with type 1 diabetes, I do not think that we sufficiently acknowledge the impact that type 1 diabetes can have on the individual, whether at school, at college or university, or in the workplace. More work can be done to ensure that we educate employers and educators about how they can support people with type 1 diabetes much more meaningfully.
I genuinely hope that Scotland can find a cure and be a beacon of hope for the rest the world.17:43
Like others, I thank Clare Adamson for bringing the debate to the chamber and welcome to the public gallery the JDRF and others impacted by type 1 diabetes. I congratulate the efforts described by Clare Adamson to raise so much, whether that is by walking at Strathclyde country park, climbing up Kilimanjaro or hauling an anvil up Goatfell. The Scottish Government acknowledges the challenges that are faced daily by people living with all forms of diabetes. However, today’s debate has, rightly, focused on type 1 diabetes.
Scotland has a strong track record on helping people with type 1 diabetes to live longer, healthier lives. The Scottish Government does not, however, act alone or have all the answers. The cause of type 1 diabetes is not known. It is not linked to lifestyle factors and, at the moment, there is no cure. Eighty per cent of diabetes complications are preventable or can be delayed with early detection, good care and self-management. That is what made Graeme Dey’s contribution so profound. I, too, pay tribute to his constituents Helen and Malcolm, following the tragic loss of their daughter Claire. That loss shows that we must do more to make improvements across Scotland.
Our Scottish diabetes survey is informed by SCI-Diabetes, which is probably the most complete diabetes register in the world. We know from the survey that there are now more than 30,000 people in Scotland living with type 1 diabetes. The survey is an incredibly important tool in helping us to achieve improvement, enabling us to see and monitor changes over time. It shows us that although the number of people with type 1 diabetes is increasing, the rate of increase has remained relatively static. The picture is similar for the under five-years-old group.
Research is very important. As Clare Adamson, Anas Sarwar and others rightly said, the JDRF’s work—its research, which includes investment of almost £4 million in Dundee, Edinburgh and Glasgow, and its support and advocacy services—is hugely valuable, not just to the Government, but to society as a whole.
In 2015, the Scottish Government published the health and social care research strategy “Delivering Innovation through Research”, which set out an ambitious agenda for change. It required new ways of working and identified four areas that are critical to our future success: efficient support for research; partnership with patients and the public in Scotland; targeted deployment of resources; and investment in the future. In that context, the Scottish Government’s chief scientist office invests more than £60 million each year to support the health research infrastructure, buy into United Kingdom-wide funding programmes and directly fund research studies, primarily through its two response mode committees.
In order to improve our understanding of the impact of changing diabetes care on our population, the complications associated with diabetes and the development of new therapies, the CSO also funds the Scottish diabetes research network. The network supports the set-up and delivery of clinical and epidemiological research across Scotland. Recent studies have included a range of commercial trials of novel therapies for people with diabetes, a groundbreaking multi-centre trial of insulin pump therapy and research into rates of amputation in people with diabetes.
Scotland can draw on a series of unique research assets to support research in diabetes, including SCI-Diabetes, which tracks real-time clinical information on all people in Scotland with type 1 and type 2 diabetes. It is used in all hospital clinics and 1,200 general practices, and it has been successfully employed to recruit to clinical studies.
We also have the Scottish diabetes research register, which is an electronic database of more than 10,000 patients who have agreed to be contacted about research for which they are eligible. The research register uses the latest clinical data on each patient to identify suitable patients for studies, thereby increasing the efficiency of recruitment to clinical trials.
Many treatments for diabetes are delivered in primary care, and primary care professionals have a key role to play in achieving the aims of diabetes research and maximising access to clinical studies for diabetes patients in Scotland. Implementation of the Scottish diabetes research network primary care initiative aims to expand the number of studies that can be carried out in primary care by engaging with GP practices and providing them with support to conduct clinical trials. The initiative recently won the primary care award for innovation in service delivery at a Diabetes UK professional conference.
The Scottish Government is proud to have been involved in the setting up of the type 1 diabetes bioresource, which is co-funded by the chief scientist office and Diabetes UK. More than 6,100 type 1 patients have consented to take part in the study, thereby creating the largest biobank of type 1 diabetes adults in Europe, with blood, urine and DNA available for further study. The resource is well placed to enable exciting new discoveries in the causes and treatment of type 1 diabetes.
Scotland can be proud of the strong body of research into diabetes that we both lead and host. However, we are not complacent and together we must rise to the challenge that is posed by such a serious disease, which impacts on the lives of thousands of people in Scotland, as many MSPs have articulated tonight.
Alex Rowley is right: the power of people’s testimonies is important to ensure that we continue to make the improvements that we need. Miles Briggs and Brian Whittle are also right to acknowledge the impact that type 1 has on young people in particular, and in her speech Emma Harper demonstrated an in-depth knowledge that, like the authoritative way in which she spoke, is particularly compelling.
While we in Scotland strive nationally and internationally to find a cure for diabetes, we continue to work hard to ensure that people are supported by world-class diabetes services. Through our diabetes improvement plan, we are progressing a wide range of actions to achieve that. Examples include the diabetic ketoacidosis campaign, which has run for two consecutive years and which aims to raise awareness of signs and symptoms to prompt quick referral and early diagnosis; the know your numbers national glycaemic target campaign for children and adults to help people to understand the blood glucose reading that they should aim for; and structured education resources for people who have been newly diagnosed with type 1 and type 2 diabetes. That is only a small flavour of the activity, and I will move on to talk in a little more detail about three important areas in particular.
As other members have highlighted, the First Minister announced £10 million of new funding at the JDRF’s 30th anniversary event. That funding will support a further increase in the provision of insulin pumps for adults and improve access to continuous glucose monitors. We know that those technologies can be literally life changing for some people.
At the start of 2016, we introduced a new quarterly reporting mechanism that enables diabetes teams to monitor and identify improvement across 12 key measures of diabetes care. Those measures include the nine essential healthcare checks that are important in keeping healthy, reducing risk and detecting signs of the complications that are associated with diabetes.
Access to information to support people to self-manage their diabetes is equally important. The my diabetes, my way website is an award-winning resource that enables people to see and check their clinical results and health information. It provides a wide range of advice and is demonstrating its value in helping people to improve their blood glucose control.
To further help to raise awareness of living well with diabetes, we will run a poster campaign in community pharmacies from next month to encourage people to ensure that they get all nine of their healthcare checks.
To conclude, I give our thanks to Diabetes Scotland for its incredibly valuable work in supporting people who live with diabetes and, of course, to the JDRF for its dedication, efforts and research. I also thank Clare Adamson and other members for their contributions to the debate.
David Stewart reminded us that Scotland led the way in the discovery of insulin treatment in 1921. We should aspire to continue to lead and build on the strengths that I and other members have outlined, as we are all united in a desire to help people who live with diabetes to live longer and healthier lives and to support the work of the JDRF and others to find the long yearned-for cure for type 1 diabetes.Meeting closed at 17:52.