Diabetes UK
The final item of business is a members' business debate on motion S3M-3200, in the name of Karen Whitefield, on Diabetes UK's 75th anniversary. The debate will be concluded without any question being put.
Motion debated,
That the Parliament congratulates Diabetes UK on its 75th anniversary, which it celebrates in 2009; notes, in this year of Homecoming, the particular contribution of Scotland and Scots to the work of Diabetes UK and to diabetes research, including RD Lawrence who founded the organisation with HG Wells in 1934, JJR Mcleod who shared the Nobel Prize in Medicine for the discovery of insulin and John Ireland who co-designed and developed the insulin pen; recognises that diabetes continues to be a major public health issue in Scotland, with 209,706 people registered with diabetes and a projected increase to 350,000 by 2025; commends the improvements in diabetes services over the past seven years arising from the Scottish Diabetes Framework Action Plan; notes that the action plan concludes this year, and looks forward to renewed commitment to action on diabetes in Scotland to take us into 2010 and onwards.
The 75th anniversary of Diabetes UK gives cause for both celebration and reflection. We celebrate the commitment that was made 75 years ago by the Scottish doctor, R D Lawrence, and the writer, H G Wells, both of whom had diabetes, to establish a charity—the Diabetic Association—which aimed to ensure that everyone in the United Kingdom could gain access to insulin, whatever their financial situation.
We also recognise the contribution of J J R Macleod through the part that he played in the Nobel prize-winning team that discovered and developed insulin. Today, his descendants, Jack and Sheila Fulton, are in the public gallery for the debate. In marking the 75th anniversary of Diabetes UK's work to improve the lives of people with diabetes, I pay special tribute to Janet Rae, who has fought the condition for 75 years, having been diagnosed with diabetes at just one and a half years old. I am delighted that Janet is also in the public gallery.
Today gives Parliament the opportunity to reflect on the progress that has been made over the past 75 years. We can reflect on the availability of life-saving insulin, the birth of the national health service and universal health care, the development of insulin-delivery mechanisms such as the insulin pen and insulin pump, the Scottish diabetes framework, the national screening programme for diabetic retinopathy—one of the first in the world—and, of course, the 2006 United Nations resolution on diabetes, which states:
"diabetes is a chronic, debilitating and costly disease associated with severe complications, which poses severe risks for families, Member States and the entire world and serious challenges to the achievement of internationally agreed development goals".
That statement gives the measure of the problems with which we are confronted when we think about diabetes. We have to confront problems such as cost, given that 10 per cent of the NHS Scotland budget of £1 billion goes to diabetes. There is also the problem of associated complications, given that diabetes is the main cause of sight loss in the adult population. Additionally, there is the risk to families, given that Scotland has one of the highest rates of childhood diabetes in the world. However, we can also reflect on the fact that, in Scotland, we are fortunate. As the motion highlights, our contribution to diabetes research and medicine goes well beyond our size as a nation, as does our contribution to the charity itself. We need only to look at the roll of honour on Diabetes UK's website.
The debate is not only about celebration and reflection; an anniversary such as this also provides a spur to action. We need to build on the progress that has already been made and we need to commit to making even greater efforts in the future. The reality is that the number of people who are at risk of diabetes and those who are diagnosed with diabetes continues to rise. In addition, the number of people who develop diabetes-related complications remains far too high.
I will focus on a few issues. Last year, NHS Quality Improvement Scotland and Diabetes UK Scotland published a national overview follow-up report on diabetes in Scotland. The report found that
"All NHS Boards have made changes to their diabetes services since we first reviewed performance against these standards and there was good evidence that these changes have improved the services provided".
At the same time, the patient experience of services, as documented in the Diabetes UK Scotland section of the report, suggests that, in areas such as patient education and psychological support, service delivery has not matched policy commitments thus far. Diabetes is a condition that is almost wholly self-managed. Given that most patients access only two hours of clinician time and that the effect on a person's life goes beyond the purely medical, further action on patient education and psychological support is required.
In November last year, the cross-party group on diabetes discussed the issue of diabetes in schools. Information from Diabetes UK Scotland suggested that parents were being required to attend schools to administer injections, which meant that they were unable to work, that children were being excluded from school trips, that there were problems with access to necessary snacks, and that some very young children were being left to inject themselves. I know from recent correspondence that I have received from the Minister for Public Health that the Scottish Government is committed to ensuring that all children with diabetes in Scottish schools are provided with the necessary support to enable them to enjoy a full school life, but for that to happen—to enable our children to access the education that is their right—we need more action.
In the run-up to the Scottish elections in 2007, Diabetes UK published a manifesto for the Scottish Parliament. One of its key concerns was to ensure access to treatments and therapies, especially insulin pumps. At a debate on diabetes in 2007, the Minister for Public Health summed up the Government's position by saying that
"the number of people in Scotland who use insulin pumps is low in comparison with other countries"
but that she expected measures that were then under way
"to make it easier for the people who meet the criteria for a pump to obtain one."—[Official Report, 28 June 2007; c 1352.]
Although some progress has undoubtedly been made, which is to be welcomed, it is clear from answers to parliamentary questions that patients and Diabetes UK are beginning to express concern that progress will soon plateau and that the majority of people who could benefit from pumps may not have access to them.
Patient education—giving patients the tools to self-manage their condition—is a cornerstone of our health care system. In relation to diabetes, considerable activity is under way at strategic level in Scotland to make that happen. However, it is through implementation that the commitments that have been made will be seen to have borne fruit. There has been sporadic activity on the ground, but it does not match immediate and future needs, particularly with a 7 per cent year-on-year rise in diagnoses.
In addition, some of the old cultural barriers—particularly those of the doctor-knows-best variety—are all too often still in place. We need action to support patient access to quality structured education at diagnosis and at all the important stages thereafter. We also need to ensure that simple measures such as clerical and administrative back-up are in place to help courses to run, and we need to challenge the old assumptions. All those issues, and others such as prevention and early identification, can be picked up in the review of the Scottish diabetes framework action plan, which is soon to be under way. I have no doubt that all of us—Government, Parliament, the NHS, Diabetes UK Scotland and individual patients and carers—will commit to the actions that the review suggests so that we can address the issues that will be important in the second decade of the century.
Finally, the motion is about congratulating Diabetes UK on its 75th anniversary. I ask members and everyone who supports the charity to sign the 75th anniversary card that Diabetes UK Scotland has created for the occasion. Above all, I ask that we all recommit to doing all that we can to help to fulfil the charity's main aim, which is to improve lives and to work towards a future without diabetes.
I congratulate Karen Whitefield not only on securing this timeous debate but on her continuing and long commitment to the cross-party group on diabetes, which survives despite competition from many other cross-party groups.
I became involved with the group at a very early stage, partly because of family members who have diabetes. Almost every member will have someone in their close or extended family with some form of diabetes. I have a brother-in-law, brother, sister and niece with type 2 diabetes and a daughter-in-law and friend with type 1 diabetes—and that is not a full survey of the family. I do not think that we are more liable to diabetes than any other family, so the snapshot that I have provided gives some indication of the extent of the condition.
Diabetes UK is greatly to be praised—I do not say that just because the organisation is represented here this evening—for both the briefing paper that it has produced for the debate and its unstinting efforts in the Parliament over the past nine years to keep diabetes, preventive measures and treatment high on the political agenda. It is tough to catch and sustain the attention of MSPs when there are many other lobby groups for different diseases and illnesses.
I do not mean this frivolously, but I note that three of the criteria for being liable to diabetes are obesity, age and smoking. I tick two of those boxes, so I am not terribly happy, although I was all right when I last had a test. However, that is not good enough—we know that, for some of us, if we changed our diet, took more exercise and looked after ourselves, we would greatly reduce our chances of developing type 2 diabetes.
The Health and Sport Committee's inquiry on pathways into sport is not considering elite sport in particular; we are doing it because of the shocking evidence on the state of Scotland's health. A lot of that is self-inflicted: in evidence, we learned that 75 per cent of adult Scots are not physically active and that, if we do not do something about Scotland's children, we will have an obesity time bomb, which could lead to a great increase in type 2 diabetes, with all the concomitant illnesses and diseases. They are pretty scary and grim. Karen Whitefield mentioned retinopathy and problems with eyesight. Diabetes can also cause heart conditions and circulatory problems that can lead to impotence in men and amputation. Those are extremes, but they are real.
People cannot fight and beat diabetes. I remember meeting a young man who had been diagnosed with type 2 diabetes when he was a teenager and in his rebellious stage. There is no good time to be diagnosed with diabetes, but that is a tough time. He decided to fight it but, of course, he could not. He did everything wrong—he did not control his diet and went out drinking—and very nearly killed himself. For children and adolescents, the issues are not only physical; they are the emotional and psychological challenges of dealing with something that will be with them all their lives. I know how grim it is for people who hate to inject themselves to have to do it six times a day, but they will not be stabilised if they do not.
Diabetes UK estimates that almost 300,000 people in Scotland have diabetes, about 90,000 of whom are thought to have undiagnosed type 2 diabetes. As many members will know, when people start to show the symptoms, the damage has already been done. I therefore commend Diabetes UK, which often tests people in places such as supermarkets to find out whether they are okay. I commend Karen Whitefield for securing the debate. The Parliament will not ignore the issue and I know that the minister does not. I look forward to the rest of the debate.
I, too, congratulate Karen Whitefield on securing the debate, which puts on record the Parliament's recognition of Diabetes UK's valuable work in the past 75 years and the work of the committed researchers who discovered and developed the means of controlling this serious disease and of improving the lifestyles and life expectancy of the many people who suffer from it.
As we know, although the incidence of type 1 diabetes, which develops predominantly in young people, is fairly stable, the much more common type 2 diabetes, which formerly affected mainly older people, is now being diagnosed more frequently in younger age groups. Nearly 210,000 people in Scotland have been confirmed as diabetics, but another 90,000 probably have type 2 diabetes that is as yet undiagnosed. As the population ages and the number of obese people increases, we can expect more diabetics in Scotland and in younger age groups. Coping with the subsequent complications will put significant strain on the NHS.
Diabetes UK's work, which is already valuable, will become more necessary, particularly its delivery of information, peer support and contribution to service improvement for diabetic patients. The organisation's funding of research projects is crucial, because only by genetic and stem-cell research will we find a cure for the disease. It is also important to find out how to prevent insulin resistance, to consider the issues on the use of insulin pumps and to add to our knowledge of the aetiology of and the best ways to prevent cardiovascular disease. Diabetes UK is a worthy charity, so it is right that we congratulate it on the excellent work that it undertakes and supports financially.
It is quite amazing how the treatment and monitoring of diabetes has changed since my mother first became a type 2 diabetic in the late 1950s. Diet, soluble insulin and—if I remember correctly—metformin were the only options for treating the condition. Testing for blood sugar was laborious and not very patient friendly, and monitoring and controlling diabetes meant regular, time-consuming visits to the diabetic clinic in a hospital out-patient department.
Patients had little real understanding of the condition or its complications; they often said that they had just a touch of diabetes, as if it were some minor complaint, and did not realise how important it was to maintain their blood sugar within normal limits. Responsibility for managing diabetes lay with the medical profession, not the patient. The present-day recognition that patients must have ownership of the monitoring and treatment of their condition is long overdue. It will ultimately benefit many patients and, it is to be hoped, will in due course relieve some of the costs and pressures on the NHS.
It is hugely important that we get to grips with the obesity epidemic that is leading to the rise in the incidence of type 2 diabetes. It is crucial that the condition is diagnosed at the earliest possible opportunity, and I warmly welcome the actions that many community pharmacists are taking in that regard. It is important that patients have a clear understanding of their condition and know how to control it—as Karen Whitefield said, education is of the utmost importance—and that complications are picked up early by investigations such as routine retinoscopy, which is now readily available in opticians' consulting rooms.
My mother had never heard of Diabetes UK; indeed, I am ashamed to say that I had not been aware of the full extent of the organisation's activities until I entered the Parliament. Its work has been and is extremely valuable and deserves our support. The improvements over recent years in services for people who have type 1 or type 2 diabetes are in no small measure due to the efforts of Diabetes UK. That work needs to continue, and I agree with Karen Whitefield that the Parliament should commit to further action on diabetes in Scotland to ensure that we cope with the predicted upsurge in its incidence. I, too, look forward to the recommendations of the review of the "Scottish Diabetes Framework: Action Plan".
I, too, congratulate Karen Whitefield on securing a debate on a hugely important issue that offers a timely reminder to us all. I also congratulate the people in the public gallery, whom I do not recognise, but I am sure that they do a great deal of work on the subject that we are discussing, because that is what brings people to members' business debates. I am extremely grateful that they are here and for their efforts on diabetes.
I say that because I have personal experience of the condition. As I get older, I am more and more surprised that I am here. Members will be well aware that I was surprised to be elected, but I am even more surprised that I am alive, because I understand that my father, who was born in the early 1920s, was diabetic more or less from birth and was therefore probably fairly fortunate to survive. It is interesting to reflect on the fact that when he died in the 1970s in his 50s—forgive me, I do not remember how old he was—one of my sisters did not realise that he suffered from diabetes. As an adult, he had got so good at managing the condition through insulin injections that he appeared to live a perfectly normal and active life without any complications whatever. I am sure that there must have been a few, but the fact that he managed to hide them from his children shows just how well diabetes can, in some circumstances, be managed. I am sure that that is thanks to those who have done the research and understood the subject over the years. I am extremely grateful for all that.
Like all members, I am conscious that we must ensure that our health service copes with and provides the best possible care to those who suffer from diabetes, and from other illnesses.
Like other members who have spoken in the debate, I come at the issue from a slightly different angle. As the convener of the cross-party group in the Scottish Parliament on obesity, I am increasingly aware that the nation's expanding waistlines will cause more type 2 diabetes. That is not a possibility; it will happen. There is a clear correlation between the incidence of obesity and the incidence of type 2 diabetes, and it will not go away.
The other point that I must make, therefore, is that although we must treat the people who have already been diagnosed as suffering from the condition, and must diagnose those who are already suffering from it but have not yet been diagnosed with it, we must do everything possible to ensure that we do not continue to expand our waistlines and that we prevent the problems in the first place. That is a delicate balance to strike, and the Government cannot possibly do it on its own. Although we sometimes expect ministers to have magic wands and bottomless pits of money, we know that that is not the case. We have to recognise that tackling diabetes is about prevention as well as treatment. We have to tackle both sides of the equation.
I thank those who are listening and those who are involved in the diabetes field for their hard work. I congratulate Diabetes UK on reaching its 75th anniversary. It would be wonderful if, by the time it reached its 100th anniversary, it was redundant and everything had been dealt with. However, I fear that that will not be the case and that the work will have to carry on. It is our task to ensure that treatment is funded and balanced properly.
I congratulate Karen Whitefield on lodging the motion. Over 75 years, Diabetes UK has made an enormous contribution to improvements in care for patients with diabetes. The most important point is that it has demonstrated the need for partnership between those who provide care and those who previously received care but who are now true partners in the management of their condition.
When Banting and Best discovered insulin, diabetes was a killer condition. Unfortunately, it is still a killer condition, in that the complications of stroke, myocardial infarction, renal failure and amputation with complications can all lead to death. Also, figures from ISD Scotland show that the prevalence of diabetes is reaching the level of 3.7 per 100. The management and treatment of diabetes are therefore enormously important.
I remember that when I was a general practitioner in the 1970s, the regrettable death of one of our younger diabetic patients stimulated our looking into the care of diabetic patients in our practice. At the time, we assumed that the type 1 diabetics and the severe type 2 diabetics who were on insulin injections were being looked after by the hospital alone and that we did not need to concern ourselves with them, other than in making referrals. We were slightly more doubtful about those whose type 2 diabetes was managed by oral medicine, but we thought that those whose condition was managed by diet alone were our responsibility. We carried out an audit, which showed that our assumptions were completely wrong: the hospital was not looking after all the type 1 diabetics, the type 2 diabetics were falling between the stools of primary care and secondary care, and many of those whose condition was being managed by diet alone were not being supported adequately. We then talked to our patients about their care.
The fundamental difference that has been made over the past 25 years is that doctors and those who are responsible for providing care have talked to and listened to patients. Patients become experts in their own care, so our listening to them is of fundamental importance.
We now have the NHS QIS standards of 2002, a framework that was introduced in 2006 and an overview of where we are that was produced by NHS QIS and Diabetes UK. We have improved, thanks to work by groups such as the Tayside medicines monitoring unit and the diabetes audit and research in Tayside Scotland study in Dundee, which have changed fundamentally the co-ordination of primary and secondary care—we now have mini-clinics and a degree of self-management. However, there is still a long way to go. We have to ensure that all the measures to which studies have quite rightly referred are instituted properly.
The Scottish care information-diabetes collaboration project was implemented by only six health boards in 2007. I hope that the minister will tell us that 14 boards have now implemented it.
Single records, whereby an entry by one member of staff goes on to a diabetic record that applies across the whole health service, are still not in place—they have to be implemented. There has to be regular audit, both collectively and individually. The quality and outcomes framework—the new GP contract—has helped enormously in the recording of all the measures around diabetes and its management, but, again, there is some way to go.
I hope that we will have programmes that implement all the recommendations in the action plan. Way to go, which is run in the Forth Valley Health Board area, is an excellent example of an education programme.
As Nigel Don said, we will be faced with the challenge of obesity. It is a fundamental challenge, as it could lead to an explosion of diabetes. If we do not tackle it, we will have serious problems. We need to consider the use of insulin pumps and other technology, including information systems. On whole-organ transplant, we will need to increase the number of pancreas transplants in particular. Obesity is the main challenge, however, and it must be faced. The Government is going some way to doing that, but the issue must be addressed by the whole community—by the health service and the public alike.
I thank Karen Whitefield for securing the debate. I welcome, as she did, our visitors to the public gallery, particularly Janet Rae. I have seen the picture of Janet, from when she was one and a half or two years old; it is remarkable that we have moved so far from those days to where we are now. However, more needs to be done; I will return to that point in a little while.
I congratulate Diabetes UK Scotland on its work over 75 years in supporting people with diabetes and their families and in driving much of the change that has taken place. The motion quite justifiably refers to the "contribution of Scotland" to the setting up of the organisation and to the management of the condition.
I am glad to say that the tradition continues. The Scottish National Blood Transfusion Service has been doing pioneering work on isolating pancreatic islet cells. As a result, an islet cell transplantation programme is starting in Edinburgh in April, with an investment of £1 million a year. That will bring great benefits to certain groups of people with type 1 diabetes.
As the motion says, we face the prospect of a substantial increase in the number of people in Scotland who live with diabetes. Getting across the messages about prevention has to be a priority for us all. Prevention is very high on the Scottish Government's agenda. Our work on tackling unhealthy body weight through better diet and increased physical activity is a key contribution to reducing the incidence of type 2 diabetes; many members mentioned that. There are £40 million of new resources to back up the healthy eating, active living strategy.
We are mindful that there could be as many as 90,000 people whose diabetes has not yet been diagnosed. Ensuring that people get a diagnosis at the earliest stage is essential, so that steps can be taken to reduce their risk of developing any of the serious complications that diabetes can bring in its train.
The UK National Screening Committee advises all four UK health departments on population screening issues. I very much welcome the committee's recent decision to reconsider the issue of screening for type 2 diabetes. That will complement work that the Scottish public health network is doing on a needs assessment for diabetes, which the Scottish diabetes group has commissioned. That approach is consistent with the recommendations on the assessment of cardiovascular risk as set out in SIGN guideline 97 from the Scottish intercollegiate guidelines network, which is clear that diabetes should be regarded as a type of cardiovascular disease.
Work that was commissioned by the Scottish diabetes group last year confirmed the strong relationship between deprivation and type 2 diabetes, but it also reported for the first time an association with type 1 diabetes. We are therefore all the more determined to tackle the health inequalities that are associated with diabetes. The keep well programme is our main vehicle for that work. Implementation of equally well, our strategy for tackling health inequalities, will also help.
Diabetes UK Scotland is keen to stress the extent to which people with diabetes are responsible for managing their own condition. We fully recognise that, and self-management is one of the main elements of our general work on long-term conditions. In partnership with the Long Term Conditions Alliance Scotland, we are implementing the national strategy for self-management, "Gaun Yersel", which is backed up with resources and which the alliance published last autumn. People with diabetes and the organisations that support them will undoubtedly benefit from that important work. Above all, it involves acknowledging people's expertise in managing their condition. Such an approach is very different from the doctor-knows-best approach that Richard Simpson talked about—I apologise if it was Karen Whitefield who made that comment, which was spot on. We have moved a long way from that position.
The motion refers to research. The Scottish diabetes research network's 2008 audit showed that 80 academic studies and 37 commercially funded clinical studies on diabetes were being carried out in Scotland. Those studies will make a major contribution to the research base.
I very much welcome the acknowledgement in the motion of improvements in services that have arisen from the Scottish diabetes framework and the action plan that was published in 2006. The Scottish diabetes group, through each NHS board's diabetes managed clinical network, monitors progress against all the actions regularly and reports to us. The MCNs have a crucial role to play. For that reason, the Scottish Government supports the diabetes voices training programme, which prepares people with diabetes to take an active part in the work of the MCNs. Their input contributes in a substantial way to the effectiveness of the MCNs' work and we are grateful to Diabetes UK Scotland for developing the programme.
Considerable progress has been made in a number of key areas, such as SCI-DC, the diabetic retinopathy screening programme and the foot care of people with diabetes. There are also areas in which it is clear that more effort is needed, such as structured education, insulin pumps and psychological support.
I give an assurance that we are committed to continuing the action plan approach. I understand that the Scottish diabetes group intends to produce a consultation document that sets out its assessment of progress on taking forward the 2006 plan. The group will also invite comments on priorities for action over the next three years. The group hopes that the revised action plan will be ready for this year's world diabetes day in November. Of course, Diabetes UK Scotland will be fully involved in the work.
SIGN is revising guideline 55 on the management of diabetes. That work will provide the NHS with an up-to-date assessment of the evidence on the clinical effectiveness of all aspects of the management of diabetes. I understand that the new guideline is likely to be published in March 2010.
The needs during school hours of children and young people with diabetes are a matter of great importance to Diabetes UK Scotland. Karen Whitefield mentioned concern about the findings of a survey that considered whether schools have policies in place to support staff to give diabetes medication. Guidance exists on the administration of medicines in schools, and the Scottish diabetes group's short-life working group on type 1 diabetes will consider how the implementation of the guidance can be improved in practice. I await the group's report with great interest.
I applaud the constructive role that Diabetes UK Scotland plays at a strategic level in all the work of the Scottish diabetes group, as well as its important work to support individuals who have the condition. I am particularly pleased that Diabetes UK Scotland will help to refresh the diabetes action plan. Of course, 75 is no age nowadays. I wish the charity very well for the next 75 years and beyond. If we can make the progress during the next 75 years that we have made during the past 75 years, I am sure that we will get on top of a condition that is devastating for some people.
Effort is needed to ensure that people who have the condition receive support, and to ensure that the condition is identified in people in whom it remains undiagnosed. As Nigel Don said, it is important that we take action on issues that have an impact on diabetes, including obesity, which the Government takes very seriously indeed.
Meeting closed at 17:44.