Diabetes in Scotland The human, social and economic challenge. Diabetes in Scotland

Transcription

1 Diabetes in Scotland The human, social and economic challenge

2 This report was commissioned, edited and funded by Novo Nordisk, assisted by Diabetes UK and produced by C3 Collaborating for Health. Diabetes is a massive and growing threat to the health of the Scottish people Novo Nordisk is a global healthcare company with 88 years of innovation and leadership in diabetes care. The company also has leading positions within haemophilia care, growth hormone therapy and hormone replacement therapy. Headquartered in Denmark, Novo Nordisk employs about 32,500 people in 74 countries, and markets its products in 179 countries. Diabetes UK is the leading UK charity that cares for, connects with and campaigns on behalf of all people affected by and at risk of diabetes. In Scotland its aim is to influence healthcare provision and improve services for people with diabetes at a local level, together with raising awareness. C3 Collaborating for Health is a registered charity, based in London and working globally. Its vision is for the eradication of preventable chronic diseases in the UK and worldwide, and its mission is to foster partnerships and build collaboration between the different organisations that, between them, can overcome the many barriers to a healthy diet, stopping smoking and being physically active. This report is an urgent call to action. If we are to halt, and even reverse, the growth of diabetes in Scotland, and ensure that people with diabetes get the best possible care, we HAVE to resist short-term cutbacks and intensify actions to: promote prevention, early identification and effective treatment reduce the long-term complications of diabetes acknowledge the compelling case for investment NOW meaning: personal investment in a healthy lifestyle financial investment in ensuring adequate resources, and administrative investment in employing innovative approaches to providing care identify the opportunities to improving diabetes care in the current economic environment, and ensure that diabetes care does not suffer because of cutbacks stimulate and challenge key stakeholders to ensure optimal diabetes care, now and into the future. Public 2 Affairs Diabetes UK/DB/0212/0081 in Scotland The Date human, of social Preparation and economic : March challenge 2012

3 01 identifying the diabetes challenge Diabetes is a huge challenge to every one of us, TODAY Tackling diabetes is one of the major health challenges of our time, in Scotland and worldwide. In detail In Scotland at the start of 2011, 237,468 people were known to have diabetes 1. This represents 4.6% of the Scottish population and is more than the total population of some of the health boards in Scotland. To put this in context: 366 million people worldwide have diabetes, including almost half a million children under the age of 14 and the numbers are growing rapidly: by 2030, more than half a billion people will be living with diabetes 2. Scotland has one of the highest prevalence rates of type 1 diabetes in Europe 3. Almost 2,000 children under 14 in Scotland have been diagnosed with type 1 diabetes 1. Diabetes costs the NHS in Scotland 1 billion a year, which is almost 10% of its total spending 3,6,52. The number of people with type 2 diabetes in Scotland is growing by about 4% per year 3, and the number of new cases of type 1 diabetes by 2-3% per year. Each year, the number of Scottish people diagnosed with diabetes will increase by 13, Almost 49,000 more are unaware that they already have diabetes 4 and many people are only diagnosed after having had it for many years, when complications have already set in. Over 55% of the people with diabetes in Scotland are men 1. Scotland has one of the highest rates of obesity of all the OECD countries 3. In 2010, 65.1% of adults aged 16 and over were overweight or obese, and 28.2% of adults were obese 5. Overweight and obesity often lead to the development of type 2 diabetes, and at a relatively young age. In 2010 over 84% of people with diabetes in Scotland were overweight or obese 1, and the government estimates that obesity cost Scotland 457 million in Routine care for people with diabetes is itself expensive, but a far greater economic burden is the hospital care required to treat serious diabetes complications, which include kidney failure, heart attack and stroke. Major costs to society include lost economic productivity (as people take time off work through illness and retire early) and the expense of social care. 01 Identifying the diabetes challenge 4

4 Key facts of people with type 2 diabetes, and % % of people with type 1 diabetes 01 Identifying the diabetes challenge are failing to meet blood glucose targets (<7%) 1 Almost 238,000 people in Scotland have diabetes 4.6% of the population The number of people with type 2 diabetes is growing by 4% a year Almost 49,000 more don t know that they have diabetes Scotland has one of the highest prevalence rates of type 1 diabetes in Europe Diabetes costs NHS Scotland 1 billion a year or almost 10% of total spending If diabetes continues to grow as predicted, the already major burden on the National Health Service will become unsustainable. But there are great opportunities to tackle this epidemic. Continued growth of type 2 diabetes which constitutes about 88% of diabetes cases in Scotland 1 is not inevitable. By encouraging people to eat a healthy diet and exercise regularly, we can help to prevent type 2 diabetes from developing, and government programmes have already done a great deal. By eliminating the risk factors, up to 80% of type 2 diabetes could be delayed or prevented 7. By diagnosing diabetes early and treating it effectively, we can prevent or at least delay the complications that lead to so much human suffering, costly treatment and reduced life expectancy. Diabetes care in Scotland is good, but not good enough. Earlier diagnosis, and use of effective modern therapies, to prevent or reduce complications, would lead to big cuts in the human, social and economic costs of diabetes. To reverse the epidemic and slow the rising cost of diabetes, we must work with healthcare professionals, government, the media and others to raise awareness of the risks of a sedentary lifestyle and unhealthy diet, and help people with diabetes to achieve effective self-management. Type 1 diabetes, in contrast, is not preventable, but the number of people affected in Scotland has also been growing steadily for the last 40 years 1. This may in part be because more people are surviving longer, due to improved control of blood glucose, blood pressure and cholesterol 1. For the 12% of people with diabetes with type 1, many of whom are children and young people, it is also important to improve public awareness, in order to help support self-management and to reduce the difficulties faced in everyday life, e.g. at school, at work and at leisure. Preventing type 2 diabetes, early diagnosis and using effective treatments are a vital and essential investment for people who have diabetes now, and those at risk of developing it. 6

5 What is diabetes? Diabetes mellitus usually known as diabetes is an incurable and progressive condition. It is caused by a failure of the pancreas to produce insulin (type 1) or to produce enough adequately functioning insulin (type 2) to enable the glucose from food to enter the body cells and be used as a source of energy. As a result, in both types the glucose level in the blood remains too high. Blood glucose is commonly determined as HbA 1c, which is the level of haemoglobin bound by glucose over about the last three months. There are two main types of diabetes: type 1 and type 2: In type 1 diabetes, the body does not produce insulin at all, because the body s defence system attacks its own insulinproducing cells. Type 1 diabetes is usually diagnosed in children or young adults. 88% of adults with diabetes in Scotland have type 2 1. In this form of diabetes, either the pancreas produces insufficient quantities of insulin, or, because of insulin resistance, the insulin produced has a reduced effect on the muscle, liver and fat cells. What diabetes does to people: Symptoms: tiredness, thirst and frequent urination symptoms that can go unnoticed for years; also itching, blurred vision, slow healing of wounds Serious short-term conditions: hypoglycaemia (blood glucose level falls too low) or hyperglycaemia (blood glucose level is too high) can lead to ketoacidosis, unconsciousness and even death Stress of dealing with diabetes and its treatment can cause depression Increased longer-term risk of heart attack, stroke, kidney damage, blindness, erectile dysfunction, nerve (neural) damage leading to amputation and reduced life expectancy. Blindness Almost 67,000 people in Scotland have retinal damage (retinopathy) as a complication of diabetes 1. 1,859 people with diabetes (0.8%) were recorded as blind in 2009, but not all of these patients lost their sight through diabetic complications 1. Effective treatment reduces the risk of serious deterioration by more than a third 8,10. Kidney failure Kidney (renal) failure accounts for 11% of deaths in type 2 patients 25. Effective treatment reduces the risk of kidney failure by 28% 9. Over 1,200 people with diabetes in Scotland suffered end-stage kidney failure in Stroke Stroke is two to four times as likely in people with diabetes 27. Effective treatment can reduce risk of stroke by more than a third 8,10. In Scotland, 11,800 people with diabetes (5%) have suffered a stroke 1. Heart attack Heart attacks are three times as likely in people with diabetes 26 heart disease accounts for over half of deaths in type 2 patients 25. Effective treatment leads to a reduction in risk of heart failure 8,10. In Scotland in 2010, 1,043 people with type 1 (3.7%) and 20,445 of those with type 2 diabetes (9.8%) had a heart attack and survived 1. Amputation Diabetes is the most common cause of lower limb amputations 100 people a week affected in the UK 25. Effective treatment reduces the risk of amputations and foot ulcers 10. In Scotland in 2010, 1,966 people with type 1 diabetes (7%) and 8,326 with type 2 diabetes (4%) were recorded to have a foot ulcer, and 1,250 people have had a lower limb amputated since Identifying the diabetes challenge 8

6 How is diabetes treated? 01 Identifying the diabetes challenge Typical treatment pathway for type 2 diabetes, with treatment aims (number of patients in Scotland, December 2011) Diabetes treatment aims to keep the level of blood glucose within recommended targets. Allowing blood glucose to remain higher increases the risk of developing serious long-term complications. Treatment must be monitored and adjusted regularly to ensure that the recommended blood glucose levels are achieved. The treatment for type 1 diabetes is insulin required from the time of diagnosis coupled with careful management of diet and exercise. Insulin was discovered in the early 1920s, and treatment has evolved significantly since then. Today s analogue or modern insulins offer more flexibility and freedom to lead a normal life than ever before. They also offer a reduced risk of blood glucose falling too low (overnight, for example), known as hypoglycaemia (see pages 23-24). Insulin can be taken in several forms and combinations to suit each individual: long-acting insulin, intermediateacting insulins, short/rapid-acting insulin taken with meals, or a mix of short/rapidacting and intermediate-acting insulins. Type 2 diabetes is initially treated through changes to lifestyle (healthier diet and increased physical activity), followed by oral antidiabetic drugs. These work either by increasing the production of insulin (sulphonylureas and others), by increasing the effectiveness of naturally produced insulin (metformin) or by delaying absorption of glucose from the gut (metformin and alphaglucosidase inhibitors). Many patients also move on to insulin therapy, which is increasingly acknowledged to delay the onset of complications in type 2 diabetes 10,13,72. There are now new treatment options to reduce blood glucose. Among these new treatments are the hormone GLP-1, which stimulates insulin secretion and controls blood glucose levels, and DPP-4 inhibitors (gliptins), which block the action of an enzyme that breaks down hormones of the GLP-1 group (the incretins). Detect earlier Diagnosis 275,000 patients Treat better earlier Treatment lifestyle modification Diet and exercise: 80,000 patients Source: CSD Patient Data, MAT December Number of patients rounded to nearest thousand. Treatment initiation OAD*: 153,000 patients Delay progression GLP-1: 5,000 patients Treatment intensification Prevent complications Insulin: 37,000 patients Delay complications Manage late-stage complications Although of only limited use so far, research is focusing increasingly on ways in which, in the future, normal blood glucose regulation could be restored, either by introducing more pancreatic cells or by encouraging the cells to regenerate. 10 * OAD = oral antidiabetic drugs

7 The scale of the problem is growing all the time The sad fact is that up to 80% of cases of type 2 diabetes could have been prevented or delayed Identifying the diabetes challenge In Scotland in early 2011, well over 237,000 people had been diagnosed with diabetes: 4.6% of the population 1. Scotland is estimated to have another 49,000 people with diabetes who have not yet been diagnosed, making 6.7% of the population 4. The whole UK may have a million or even more people undiagnosed 4,14-16,38.. Diabetes prevalence Out of the diabetes patients whose body mass index was recorded in the 2010 Scottish Diabetes Survey, almost a third were overweight (BMI kg/m 2 ) and over half were obese (BMI 30kg/m 2 or over) 1. Both the number of people with diabetes and the proportion of the population with diabetes (the prevalence) are rising steadily. By 2030, 397,000 people in Scotland will either be diagnosed with diabetes or will be on the way to developing it 18, unless more action is taken. Type 2 diabetes can be prevented Like other major chronic illnesses such as cancer, heart disease and stroke, and respiratory diseases, type 2 diabetes is strongly influenced by poor diet and lack of physical activity (which lead to obesity). Like them, and largely due to these factors, diabetes is spreading rapidly. But tackling the trend towards overweight and obesity, and beyond into diabetes, needs far more than individual action. It needs all the different organisations, professions and sectors to work together and in their own ways to help people to avoid developing diabetes. Individual people need to be aware of the dangers, and healthcare professionals need to be able to identify people at risk at an early stage and offer effective advice and treatment. KEY 10% and over Source: Office for National Statistics. Crown Copyright material is reproduced with the permission of the Office of Public Sector Information (OPSI). Contains Ordnance Survey data Statistics. Produced by YHPHO June Crown Copyright and database right % to 10% 8% to 9% 7% to 8% 12 Under 7%

8 The human cost of diabetes a major impact on people s lives The social cost of diabetes affecting some groups more than others 01 Identifying the diabetes challenge More than a third (36%) of people with type 2 diabetes are at risk of complications because of inadequate blood glucose control 1. Diabetes was implicated in the deaths of 4,167 people in Scotland in % of deaths from all causes 19,20. This is almost certainly an underestimate, as diabetes is often not mentioned where the primary cause of death is one of its complications 21,22. Life expectancy is reduced, on average, by more than 20 years in people with type 1 diabetes, and by up to 10 years in people with type 2 diabetes This reduction may have improved in recent years by better management 23. Almost one in 10 hospital bed-days in Scotland are related to diabetes 24 and this may be an underestimate. Diabetes is related to one in five UK admissions for coronary heart disease, renal (kidney) disease and foot ulcers 25. Adults with diabetes are 2 4 times as likely to die from heart disease as those without diabetes, and are also 2 4 times more likely to suffer a stroke 29. Diabetes is the single largest cause of blindness among people of working age in the UK 25. Sixty per cent of people with type 2 diabetes will have some level of retinopathy within 20 years of diagnosis, as will almost all people with type 1 diabetes 28. About 30% of people with type 2 diabetes develop kidney disease 29. In Scotland, well over 10,000 people have diabetic foot ulcers and 1,250 have lost a lower limb through amputation since ,30. Type 1 diabetes affects people from all social and ethnic groups, but generally in the UK, people living in deprived areas are up to twice as likely to develop type 2 diabetes as those with a higher income, especially among those aged between ,23. People from more socioeconomically disadvantaged backgrounds are more likely to be exposed to risk factors such as an unhealthy diet and little physical activity, smoking and poor blood pressure control. Type 2 diabetes is strongly linked with overweight and obesity which most affect the least affluent. There is a clear relationship between poorer living conditions and increasing obesity in adult women, and although less clear, there are some indications that this may also appear for adult men and children 31. Age and new diagnoses of diabetes in Scotland, 2010 type 1 type In Scotland, the chance of developing type 2 diabetes is 77% higher for people from the most deprived areas compared to those in the most affluent areas 25. Diabetes affects proportionately more people from Asian and black ethnic groups. In Scotland, the risk of being registered with type 2 diabetes is eight times as high for people of Pakistani origin as for the white population; four times as high for Indian and three times as high for Chinese people (after adjustment for gender and age) 32. Age is also a key factor for type 2 diabetes: it is more prevalent in older people, so the increasing age of the population will mean a rise in the number of people with diabetes. This growth is compounded by the rising number of children and young people with type 2 diabetes Source: NHS Scotland Diabetes Survey 2010 Age

9 The economic cost of diabetes 1 billion a year in Scotland 01 Identifying the diabetes challenge The cost of caring for people with diabetes is vast, increasing and threatening to present an unsustainable challenge to healthcare services within the next 20 years the vast majority of the cost goes on treating diabetes complications. For the UK as a whole, the cost of treating diabetes is about 1 million per hour 33, and 1 billion a year for Scotland 52. In Scotland between , 24,750 hospital admissions were for people with type 1 and 195,433 people with type 2 diabetes, accounting for approximately 4.3% of the total Scottish population 34. The estimated total annual cost of admissions for all people diagnosed with type 1 and type 2 diabetes was 26 million (for type 1) and 275 million (for type 2) 34. In the financial year , almost 36,000 bed-days were related to diabetes 24. This means that about 12% of the total Scottish inpatient expenditure ( 2.4 billion) is accounted for by 4.3% of the population 34. Major hypoglycaemia requires hospitalisation and was estimated in 2003 to cost the NHS 13 million per year for the whole UK 35. On the basis that Scotland has 8.11% of the UK s people with diabetes 1,38, emergency hypoglycaemia treatment would have cost Scotland about 1 million - nine years ago. Depending on severity, the costs of individual emergency diabetes-related admissions for hypoglycaemic or hyperglycaemic events now range from 816 to 3,570 36, or an average of 1, Spending on diabetes complications will be even higher in future, unless proper advantage is taken of the opportunities for early and adequate treatment with today s advanced medications. People with diabetes also face significant personal costs, estimated at 500 million a year for the whole UK 37 or 40.5 million pro rata for Scotland * 1,38. This is due to missing work, the cost of travel for medical treatment, and often loss of employment or early retirement because of ill health. About 6% of people with type 2 diabetes are unable to work at all. Family members may also suffer financially, especially parents of children with diabetes who may be forced to give up work to care for them. One in 20 people with diabetes in the UK needs assistance from social services, at a cost of 230 million per year 37, or 18.6 million pro rata for Scotland alone ** 1,38. More than 75% of these costs are for residential or nursing services, with most of the remainder for home help 25. It has been estimated that diabetes doubles the chances of entering a care home, and one in four care home residents has diabetes 39. The costs to the national economy of lost working time and early death from diabetes are very difficult to quantify, but estimates for the UK put the costs to industry at 531 million in 2006, rising to 780 million in For Scotland this represents 43 million in 2006, rising to 63 million in 2026 ** 1,38. * calculated on the basis that the number of people with diabetes in Scotland represents 8.11% of the people with diabetes in the UK ** calculated on the basis of population as above and assuming a comparable socioeconomic profile Scotland million 2006 million 2026 UK million million

10 What does the future hold, if no real changes are made? 01 Identifying the diabetes challenge It is hard to predict exactly how diabetes care in Scotland will develop in the near and more distant future, because systems are already changing in an attempt to meet the increasing need. But on the basis of current practices in diabetes prevention, diagnosis or treatment, and the data given above, between now and 2030 Over 35,000 people * who have been diagnosed with diabetes today will have some level of retinopathy, and over 13,500 will have severe vision loss. Over 54,000 * will suffer a heart attack, and the same number will have a stroke. Almost 3,600 people * who have been diagnosed with diabetes today will have kidney failure. We can t let this happen. 18 * As calculated by a health economics model developed for this book, using data for Scotland; see page 44

11 Identifying the diabetes challenge 01 Identifying the diabetes challenge Diabetes is long term, potentially seriously debilitating and costly to treat. Numbers are going up, and costs are going up. Unless we face the challenge NOW, the NHS will be unable to cope. Finding: Numbers are up and costs are up. 20

12 02 A challenge for patients and for NHS Scotland Diabetes is a challenge for patients As diabetes is a chronic disease, planning and managing food, physical activity andmedication on a daily basis depends very much on the attitude and decisions of patients themselves, and their families. Successful self-management depends on patients having the information and confidence they need. Patient education courses and informal support from dieticians and especially diabetes nurses are very helpful in this respect. Diabetes is a long-term condition making large demands on the patient, so people with diabetes are more than twice as likely to experience depression as those without it 42. They need support from family and friends to help maintain their treatment and to manage the condition effectively themselves. This is important not only because it affects their quality of life, but because diabetes-related stress and depression make effective self-management less likely As well as the daily routine of monitoring blood glucose, administering oral medicines or insulin, and constantly watching and adjusting food intake and exercise, people with diabetes face the threat of diabetes complications. In the short term, hypoglycaemia (blood glucose level too low) or hyperglycaemia (blood glucose level too high) are emergency conditions that need to be avoided by careful management. Many people with diabetes experience mild hypoglycaemic events (hypos) from time to time and can cope with them alone. Major hypos require help from a third party, whether family or friends, paramedic treatment or hospitalisation. Hyperglycaemia may need medical treatment or hospitalisation if it leads to diabetic ketoacidosis, but this is less common than hypoglycaemia. And beyond the short-term emergencies, diabetes carries the threat of the long-term complications that are much more likely to affect people with diabetes than the rest of the population loss of vision, foot ulcers, kidney damage, heart attack, stroke, and a reduced life expectancy. That is a very big challenge. The next few pages look at the impact that two of these complications have on people s lives. Focus on hypoglycaemia Hypoglycaemia is a common occurrence for people with diabetes who are taking insulin or some types of oral antidiabetic medication. A hypoglycaemic event results when blood glucose level falls too low (below 4mmol/l). At this level the glucose is insufficient to release enough energy for the body to function normally. The person with the hypo feels hungry, trembles, and becomes pale and sweaty with a fast pulse. In a more serious hypo, he may be unable to think clearly, act irrationally and even become unconscious 46. The cost of hospital or ambulance paramedic care for serious hypoglycaemic events is an average of 1,000 each time, and also personal costs are incurred through inability to work; on Proportion of people with diabetes suffering hypoglycaemic events 7% 22% average three days per hypo. It is estimated that at least 5,000 hypoglycaemic events in the UK each year are serious enough to need emergency treatment 47, equating (pro rata) to 405 in Scotland. Hypos are caused by an upset in the balance between glucose intake, insulin (or other medication) taken, and exercise. A hypo can happen when too much insulin is taken, or not enough (or delayed) food, or an unexpected or prolonged amount of exercise. Also taking alcohol without food, or excessive alcohol can trigger a hypo. Some people experience hypos during sleep. While asleep they may not notice the signs of an imminent hypo and would be unable to avoid it by taking in glucose % Nocturnal Severe Mild or moderate Some form of hypo 73% Source: Davis et al A challenge for patients and for NHS Scotland 22

13 Focus on hypoglycaemia Morag s story Mild hypos can be treated easily by taking a rapidly absorbed source of glucose, such as fruit juice, a glucose drink, sweets or glucose gel, and following that after recovery with a longer-acting carbohydrate source such as a sandwich. Many people learn to recognise hypo symptoms and can treat them before the hypo comes on. But if it becomes severe, they will need help and, if they lose consciousness, possibly a glucose or glucagon injection, given by a trained person 46. People who have had diabetes for a long time may develop hypo unawareness and fail to recognise the early symptoms, which can lead to a more serious hypo event or put them in danger of an accident 48. For people with diabetes, hypos are a normal part of life. It is easy to see how disruptive they can be, requiring careful attention to food, medication and level of exercise. For children with diabetes, it is their parents who are constantly on their guard. People with diabetes face challenges in living their lives freely; they have a continual need to work out what is happening to their bodies and to respond quickly. Fear of hypos commonly prevents people with diabetes from achieving effective control of blood glucose 47. Some patients choose to keep their blood glucose level higher than recommended, sacrificing their chance to reduce long-term complications 47. A key survey asked patients about the experience of mild, moderate or severe hypoglycaemia, and nocturnal hypoglycaemic events, and the impact on other aspects of their lives 49. Those suffering more frequent and more severe hypos experienced reduced quality of life, their use of healthcare resources increased, and their work productivity was reduced 49. Hypoglycaemia is frightening, potentially dangerous and disruptive to everyday life. Every effort should be made to avoid it wherever possible. Professor Brian M Frier Department of Diabetes, Edinburgh Royal Infirmary February 2012 Morag was diagnosed with type 1 diabetes at age eight, and has lived with the condition for 32 years. She has multiple daily injections, and checks her blood glucose four or more times a day. Morag has brittle diabetes, typified by no pattern and wide variation in blood glucose levels, daily hypoglycaemia (including nocturnal hypoglycaemia) combined with spikes in blood glucose control, and her hypoglycaemia awareness is also very poor. Morag finds this interferes with her daily life, causing swings in energy levels. As Morag s HbA 1c result is within target, her control appears very good. However, Morag explained the difficulties she was having to her diabetes consultant. She was advised that she may be eligible for an insulin pump and was referred to an insulin pump clinic. Morag was asked to keep a diary of her food intake, physical activity, insulin levels and hypos, which again confirmed that there was no pattern to her blood glucose levels and that she was eligible for an insulin pump. However, she was told that she was on a waiting list, and with only two pumps available for patients per year, Morag was advised that she did not need to come back to the insulin pump clinic at that time and that she would be contacted once a pump became available. About a year has passed since that appointment. In the interim, Morag s control continues to be brittle with daily hypoglycaemia, causing her to need time off work. The consultants at her diabetes clinic understand that this is difficult, and have suggested that a continuous glucose monitor may help to get a better picture of Morag s control while she waits. The other advice Morag has received from her healthcare professionals is to eat more slow-release carbohydrates, not to run blood glucose levels so tightly, not to correct so frequently, not to blood test so frequently and to run blood glucose levels higher. Morag has tried all these ideas with little effect. She has also completed a DAFNE * course, so has a thorough understanding of carbohydrate counting and insulin adjustment. Morag has also been diagnosed with retinopathy; a long-term complication of diabetes. Because of this, she is keen to slow the progression of the condition by keeping her HbA 1c within target without daily hypoglycaemias, and hopes that an insulin pump may provide the solution. * Dose Adjustment for Normal Eating - an education programme for people with type 1 diabetes, explaining adjustment of insulin dose to control blood sugars. 02 A challenge for patients and for NHS Scotland 24

14 Focus on diabetes foot disease Shazia s story Diabetes foot disease is potentially one of the most distressing and disabling complications of diabetes. Diabetes can cause nerve damage resulting in reduced sensation, and also reduced blood supply to the feet. Cuts, blisters or rubbing shoes, may not be felt because of the reduced sensation, and healing is delayed by a number of factors including poor blood supply. Even simple injuries like these can result in an ulcer, and if it becomes infected, this can be very difficult to heal. About 5% of people with diabetes will develop a foot ulcer in any one year, and more than one in ten of these ulcers results in amputation of a foot or leg 25. In Scotland in 2010, 10,292 people with diabetes were recorded as having had a foot ulcer, and 1,250 people had lost a lower limb 1. The nerve damage that results from diabetes can also be coupled with weakening of the bones, acute inflammation and even fracture. Continued walking, with the patient unaware of the problem because of the lack of pain, can result in the foot becoming deformed; a condition known as Charcot foot 50. This can make the foot more prone to ulceration and in some cases necessitate amputation. Due to the nerve damage, the sweat glands can become inefficient and the resulting dry skin can crack and become prone to infection. It is vital that people with diabetes take care of their feet and that they are professionally screened at least annually. Good control of blood glucose, blood fats and blood pressure, and not smoking, can minimise the risks to the feet of people with diabetes 10. Annual screening aims to identify all risk factors that could lead to ulceration and any existing foot problems, and to ensure that the appropriate treatment or management plan can be put in place. Screening 57 establishes whether patients are at low, moderate or high risk of ulceration. These results are ideally recorded in the SCI-DC information system *, from which the appropriate advice leaflets can be downloaded and given to the patient according to their level of risk 51. So far, 56% of people with diabetes in Scotland have had their foot risk scores recorded using the SCI-DC system 51. * SCI-DC is the Scottish Care Information Diabetes Collaboration providing information technology software and services to support the Scottish Diabetes Framework and the managed clinical networks. Shazia, who is 32, lives in Glasgow and was diagnosed with type 1 diabetes when she was 10. She is in danger of losing her right foot after developing Charcot foot. Shazia explains: At the start I had no problems in controlling my diabetes but as I hit the teenage phase I started neglecting it, mainly due to the fact that I felt that people weren t understanding what I was going through. It was getting difficult for someone of a young age, trying to explain diabetes in my own mother tongue to my family, and I was still told: It s okay if you do this and if you do that. I started doing everything that I shouldn t have drinking sugary drinks, eating lots of chocolate, and not having a strict carbohydrate count diet (which I had been taught when diagnosed). I stopped doing my blood glucose testing and, most importantly, stopped taking my insulin. Part of this was because at that time most of my family did not understand the concept of diabetes. Time went past and I got worse. Then one day, enough was enough. I started trying to help myself in controlling my diabetes rather than having it controlling me. However, I then had a number of family bereavements and soon started to suffer from severe clinical depression. I stopped eating and drinking. I couldn t face food. I tried to eat but I couldn t. At the age of 19, my weight was dangerously low. It took me about three years to start on the path of getting better. I felt pain in my foot and went to the doctors, where it was initially diagnosed that I had fractured my heel bone, even though I hadn t done anything to it. I was in plaster for around two months, but when it was taken off they found that my heel bone had moved out of place. I don t think they really knew what was wrong. It wasn t until another three months had passed that they realised what was happening was a symptom of Charcot foot, which was brought about by my diabetes. My foot is painful to walk on and I ve also developed a diabetic foot ulcer on my left foot. If I d had regular dedicated foot checks, perhaps the problem could have been spotted earlier. However, the failure to diagnose the real problem has left me with permanent damage. It will not get better. 02 A challenge for patients and for NHS Scotland 26

15 A challenge for NHS Scotland These key annual checks for people with diabetes, set out by the NHS Scotland clinical standards for diabetes 54 were updated in 2010 by the evidence-based SIGN Guideline They are the key indicators of how well the diabetes is being managed and show whether treatment needs to be adjusted. The number of people diagnosed with diabetes is going up by about 4% every year 3 Diabetes and its complications cost the NHS in Scotland 1 billion a year, or almost 10% of the total healthcare budget 3,6,52. The costs of complications to the NHS are already extensive: each heart attack costs 6,246 in the first year and 1,000 a year thereafter 53 ; dialysis for end-stage renal disease costs 27,000 or 36,000 a year depending on the procedure 53 ; each amputation costs almost 12, Clinical HbA 1c (indicates average blood glucose level during last 3 months) Blood pressure Random total cholesterol Eye examination 02 A challenge for patients and for NHS Scotland Good diabetes management is essential to minimise complications and prevent these costs from spiralling out of control. Diabetes care in Scotland is developing steadily as a result of joint initiatives involving government, people with diabetes, healthcare professionals, NHS managers, research groups, the voluntary sector, industry and others, and culminating in the current Diabetes Action Plan Lifestyle Urinalysis (indicates kidney function) Serum creatinine (indicates kidney function) Foot examination Review of medication Body Mass Index (BMI) Dietary intake Physical activity Smoking Perception and understanding of condition Psychological wellbeing Sexual health

16 At present: According to the Scottish Diabetes Survey 2010, most people with diabetes (88% of those with type 1 and 92% of those with type 2) are having their HbA 1c blood glucose level checked at least once in 15 months (the recommendation is for annual check). But more frequent assessment can contribute to improved control 64. Also, assessment is only part of the answer the results need to be acted on, adjusting or intensifying treatment as appropriate. 78% of those with type 1 diabetes and 36% of those with type 2 diabetes have suboptimal glycaemic control 1, and so have a higher risk of future complications. Only just over 3% of people with type 1 and 12.3% of those with type 2 diabetes achieved all three targets for control of blood glucose (HbA 1c <7%), cholesterol (<5 mmol/l) and blood pressure (systolic BP<130 mmhg and diastolic BP < 80 mmhg 1 ). Although the Scottish Diabetes Survey 2010 did note that the target level set for blood glucose was unrealistically low 1, the health economics analysis on pages shows the benefits both in complications prevented and costs saved that are being missed. Almost 15% of people with diabetes have not had an up-to-date eye screen, and this is worse in those with type 1 diabetes who are at greater risk of retinopathy. In 2010, diabetic retinopathy was known to be present in 28.5% of the diabetic population, but over 9% had not had their retinal condition recorded 1. In 2010 more than 75% of people with diabetes had their peripheral (foot) pulse checked within the previous 15 months (the check is recommended annually), but 64% of people with type 1 diabetes and 59% of those with type 2 diabetes did not have their risk of foot ulceration recorded 1. In Scotland 10,292 people with diabetes have a foot ulcer 1. Percentage of people meeting key targets Type 1 % Type 2 % 10.7% 54.2% 39% 3.1% 44.8% 29.8% 12.3% 74.1% 02 A challenge for patients and for NHS Scotland HbA 1c Cholesterol BP ALL 30 Source: NHS Scotland Diabetes Survey 2010

17 Scotland s diabetes care policies Scotland has been more advanced in its diabetes care than the rest of the UK. But in 2012, there is a large gulf between its excellent achievements and the resources available today to deliver its aspirations. Scotland was: the first in the UK to monitor performance against national clinical standards for diabetes the first with a national electronic register for diabetes patients allowing direct interaction of primary and emergency care services one of the first with a national diabetic retinopathy screening programme. The Scottish Diabetes Framework set out a ten-year programme to address the growth of diabetes 41. The Scottish national clinical standards for diabetes (updated in 2010 by the evidence-based SIGN Guideline ) set not only the key checks to be made on patients at least once a year, but also the principles of organisation, information and systems management, patient needs and involvement, and management of the various complications of diabetes. Performance of all 14 regional NHS Boards in Scotland was assessed against the standards in 2004 and 2007, with input from the Diabetes UK Scotland patient focus groups 56. Two Diabetes Action Plans, in 2006 and 2010, each built on a review and consultation on the system s progress. The most recent plan 3 sets priorities and targets for , highlighting the continuing growth in numbers of people with diabetes and the need to improve the quality of life for people with diabetes, including their psychological and emotional wellbeing. Scotland also excels in diabetes research, in both the public and private sectors. Since 2006, the Scottish Diabetes Research Network (SDRN) has worked to increase the quantity and improve the quality of diabetes research, supporting the participation of hospitals and GP surgeries. A SCI-DC-based national research register of patients wishing to take part in studies aids recruitment. The SDRN will also use SCI-DC and other sources to develop epidemiological research to contribute to planning future diabetes services 58. The NHS Boards in Scotland now all use multidisciplinary managed clinical networks (MCNs) for diabetes care. These are networks of healthcare professionals from all levels, with patients and carers who work together in planning and receiving effective diabetes care. Each NHS Board has an MCN for diabetes, and their working is governed by NHS Quality Improvement Scotland 59. Information and support for patients self-management is offered in structured courses with quality control and trained staff, including DAFNE (type 1), DESMOND (type 2) and X-PERT (type 2)* 60. Some areas, e.g. Tayside and Lothian, have developed their own formal courses, and patients can also obtain information by informal chats with dieticians and diabetes nurses 60, or from medical sources, patient organisations and social networks online. Sweet Talk is a highly successful Scottish programme using text messaging to engage young people with type 1 diabetes with goal-related messages and encouragement A challenge for patients and for NHS Scotland * DAFNE - Dose Adjustment for Normal Eating 32 DESMOND - Diabetes Education and Self-Management for Ongoing and Newly Diagnosed X-PERT - also for type 2 diabetes

18 How well is the system coping? Diabetes care in Scotland is clearly recognised by the government as a priority within healthcare. It has been specifically addressed during the last ten years by a succession of frameworks and action plans. But these measures are working against increasing pressures and decreasing resources. The current great achievements are under threat. In December 2011, Audit Scotland reported a 1.4% real-terms decrease in funding between and , and continued that the Scottish government s 2011 spending review outlined a 4.2% real-terms decrease in NHS funding in the five years to NHS staff numbers were cut by 1.8% between September 2009 and March 2011, and further cuts are forecast 6. The number of nurses and midwives in post in Scotland fell by 2.7% in the year to September The pressures on resources are rising: the population will rise by up to 10% over the next 25 years, with the over-65s up by 63% 6 numbers of people with diabetes are rising both type 2 (the major component) and also type 1 NHS Scotland is aiming for improvements in health, including addressing obesity and reducing the number of people who smoke. Plans are outlined in the Diabetes Action Plan to combine the medical approach of screening, detection and lifestyle intervention with promoting healthy eating and physical activity, and hence weight control. In type 2 diabetes, the control measures also struggle against the rising level of overweight and obesity, linked to socioeconomic deprivation. In the current economic climate, this trend is very hard to overcome. Specific problems When surveyed in 2009, most NHS Boards were found to be meeting all the clinical management standards, supported by the introduction of the Quality and Outcomes Framework (QOF) for routine data collection. I want to see insulin pumps made available to 25% of children and teens with type 1 diabetes by We will also increase the number of pumps available to all Scots to over 2,000 almost tripling the current amount over the next three years. Nicola Sturgeon Scottish Health Secretary SNP Conference Keynote Speech 21 October 2011 However, concerns were raised about the lack of access to foot care, advice on diet, and provision of psychological support 60. Rates of annual foot checks varied widely between NHS Boards but in 2010 almost 60% of patients with type 1 diabetes and 78% of those with type 2 had had their foot pulses checked in the previous 15 months 1. Foot care was available to 42% of patients from an NHS podiatrist or 15% from a nurse 60, and was supplemented by private foot care where NHS provision was lower. The Diabetes Action Plan calls for 80% of people with diabetes to be given an allocated foot risk score, which is known to the patient and to all healthcare professionals involved with them, and for all patients to have access to education and information on selfmanagement of foot care. Every NHS Board will have to provide skilled podiatrists 3. One in eight people with type 1 diabetes and one in three with type 2 diabetes had never seen a dietician 60. People from South Asian communities reported that the diet guidance given did not relate to their types of foods, and there was no provision for follow-up questions 60. Over 40% of patients highlighted practical and emotional difficulties of managing their diabetes and said they were not given time to talk when diagnosed with diabetes or a complication of diabetes 60. In 2006 the level of psychological support for people with diabetes was described as woeful, with one psychologist for every 11,000 people with diabetes 66. By 2008 there was still significant variation between NHS boards and only two NHS boards were providing appropriate access to dedicated diabetes clinical psychological services 56. The Scottish Diabetes Group is to assess the resources of diabetes staff who have undergone training in psychological and emotional support, and patient feedback will be gathered e.g. from Better Together, Scotland s patient experience programme 67 to inform further training of healthcare professionals 3. According to the Action Plan, all diabetes patients should have access to qualityassured structured education programmes within three months of diagnosis, and a national education coordinator will work with the managed care networks to provide patient and professional education 3. According to patients in the 2009 survey, over 63% had not been offered any diabetes education 60. The Scottish government has also acknowledged that Scotland needs to encourage NHS Boards to improve the availability of insulin pumps. In 2011, only 2.5% of type 1 patients in Scotland use insulin pumps, compared with an average of 15% across Europe 1, A challenge for patients and for NHS Scotland 34

19 Who cares about diabetes? Consultants in other specialties *** NHS Boards KEY Patient Informal and social care Primary care Secondary care Policy, administration, others Patient Family and friends * Practice nurses Patient organisations Social services Counselling services Private healthcare Pharmacists GPs/ GPwSIs Diabetes specialist nurses Other healthcare professionals Managed clinical networks can involve any primary and secondary HCPs Diabetes specialist registrars Diabetology consultants Diabetes specialist nurses (DSNs) Other healthcare professionals ** NHS Scotland Scottish Diabetes Group Education, Minority ethnic groups, Retinal screening, Foot action, MCNs, Psychology, SCI-DC, Industry 02 A challenge for patients and for NHS Scotland Private healthcare Scottish Parliament * Family and friends are the first line of carers ** Includes ophthalmologists, podiatrists, dieticians, diabetes educators *** Includes psychology, endocrinology, nephrology GPwSIs are GPs with special interest in diabetes

20 Empowering the patient More imaginative empowerment of patients would have multiple benefits, e.g.: Fewer ambulance callouts to deal with diabetic emergencies such as hypoglycaemia Fewer working days lost through illness Reduced impact of diabetes complications Fewer bed-days needed for inpatient treatment Fewer and shorter hospital stays. Encouraging people with diabetes to understand and take control of their condition is extremely important. Patients and healthcare professionals (HCPs) should work together to share the responsibility for more effective diabetes care, through: A diabetes charter to establish the care that patients should expect at all stages of diabetes along the lines of the 15 essential measures defined by Diabetes UK 69 (see next page). Care decisions and goal-setting reached by patients and healthcare professionals working together Involvement of patients in designing the care they want, where and by whom it is provided Redress for patients if NHS Boards do not provide the care needed by patients within financial constraints Greater focus on ring-fencing finance for structured and local education in the evenings and at weekends, when patients can attend Greater use of patient-recorded outcome measures as prioritised by NHS Scotland Healthcare Quality Strategy 70 Greater use of patient-related experience measures as launched in 2008 by the NHS Scotland Better Together programme 67. Its workstream on long-term conditions has confirmed the value of making the best use of the experience of patients and their supporters, of moving towards shared decision-making, and recognition of the concerns of the individual 71. We recognise that each person is the primary authority on their own life, and we support people to lead great lives where they are in control The Thistle Foundation Quoted by Better Together Scotland s Patient Experience programme A challenge for patients and for NHS Scotland 38