Scottish Diabetes Framework
Scottish Diabetes Framework
Scottish Diabetes Framework
Scottish Diabetes Framework: Introduction
Diabetes - a priority for Scotland
1. There are believed to be 150,000 people in Scotland who have been diagnosed with diabetes and there are almost certainly many thousands more who are, as yet, undiagnosed. Contrary to popular belief, diabetes is progressive and life-threatening with potentially devastating consequences for health. The complications of diabetes include a higher risk of heart disease, stroke, kidney failure, eye disease (diabetic retinopathy) that can lead to blindness, and foot ulceration, which can lead to amputation. However, there is a great deal that can be done to prevent diabetes and to improve outcomes for people with diabetes.
2. The Scottish Health Plan - Our National Health: A plan for action, a plan for change - recognised the potential to make a significant impact on diabetes care and included a commitment to produce a Scottish Diabetes Framework:
'In 2001, we will launch a Scottish Diabetes Framework to draw together existing guidance and best practice in order to raise the standard of diabetes care. The Framework will include plans to establish a national screening strategy for diabetic retinopathy.'
3. A working group was established to take this forward. The membership of the Group is set out in Annex A. The Group's remit was:
'To produce a Scottish Diabetes Framework which draws together existing guidance and best practice to address the provision of diabetes care throughout the patient journey, and which commands the support of those providing and receiving diabetes services.'
4. On World Diabetes Day 2001 (14 November) the major milestones of the Diabetes Framework were published alongside two key components of the national work on diabetes - the SIGN clinical guideline on the management of diabetes and the clinical standards for diabetes care. The publication of this document sets out more fully the thinking behind the milestones and also reports on the progress already made towards meeting these objectives.
Diabetes - an international concern
5. The identification in Scotland of the problem of diabetes reflects worldwide concerns about the escalating incidence of diabetes. The 'epidemic' of diabetes, largely as a consequence of changes to lifestyle and diet, is putting increasing strains on all healthcare systems and societies. In Europe, official acknowledgement of the problem came in 1989 with the St Vincent Declaration. This series of recommendations arose from a meeting organised by the World Health Organization (WHO) and the International Diabetes Federation (IDF) in Europe that urged national governments and Health Departments to give formal recognition to the diabetes problem and deploy resources for its solution. Its goal for people with diabetes was to achieve 'sustained improvement in health experience and a life approaching normal expectation in quality and quantity'. This remains a continuing challenge to governments and health care professionals. Recent national initiatives in Scotland to address the problems of diabetes were initiated as a result of the St Vincent Declaration.
What is diabetes?
6. Diabetes occurs where there is a shortage of, or an inability to respond to, insulin. Insulin is a hormone produced by the pancreas, which is needed to transport glucose (sugar) obtained from food, from the bloodstream into the body's cells where it is converted into energy. This results in a build up of glucose in the blood (hyperglycaemia).
'I don't really understand it - what is diabetes really?' (Person with recently diagnosed diabetes) |
7. The definition of diabetes mellitus (which in this document is simply referred to as 'diabetes') used by the Scottish Intercollegiate Guidelines Network (SIGN), which incorporates the diagnosis criteria set by the World Health Organization (WHO) is set out in the table below. Annex B reproduces, with permission from Diabetes UK, a longer and more straight-forward description of the causes, symptoms and treatment of diabetes.
Table 1 Definition and Diagnosis of Diabetes Mellitus Diabetes mellitus is defined as a metabolic disorder of multiple aetiology characterised by chronic hyperglycaemia with disturbances of carbohydrate, protein and fat metabolism resulting from defects in insulin secretion, insulin action, or both. The clinical diagnosis of diabetes is often indicated by the presence of symptoms such as polyuria, polydipsia, and unexplained weight loss, and is confirmed by measurement of abnormal hyperglycaemia. The WHO advises that the range of blood glucose indicative of diabetes mellitus are as follows:
Management of Diabetes, SIGN, 2001 (p.2) |
8. Diabetes is a chronic and progressive disease which causes damage to tissues throughout the body by damaging the small blood vessels. Initial changes are reversible, but over the long run, diabetes which is inadequately controlled can lead to a range of serious complications including damage to the eyes (diabetic retinopathy) which can lead to visual impairment and blindness; damage to the kidney (diabetic nephropathy) which can lead to renal failure; and damage to nerves (diabetic neuropathy) which can lead to foot ulcers and lower limb amputation. In addition, people with diabetes are at significantly higher risk of developing cardiovascular disease. This can result in coronary heart disease, stroke and poor circulation to the legs and feet. Diabetes is the fourth-leading cause of death in the UK.
9. There are two main types of diabetes: Type 1 diabetes and Type 2 diabetes.
- Type 1 is an autoimmune condition in which the body's own immune system destroys the insulin-producing cells in the pancreas. This deficiency needs to be treated with insulin injections. Type 1 usually occurs in people under the age of 30, often in childhood, although it can occur at any age. About 10-15% of people with diabetes have type 1.
- Type 2 diabetes develops when the body is unable to produce enough insulin, or cannot use the insulin the body produces properly (insulin resistance). This type of diabetes usually appears in people over 40 and depending on its stage of development can be treated by a combination of diet and drugs, although insulin may also be required. The development of type 2 is strongly linked to obesity and lack of physical exercise which explains the recent dramatic increase in the incidence of type 2 diabetes, including the worrying trend of type 2 diabetes being identified in ever younger patients.
'I have had diabetes for many years - it is an illness that doesn't show itself - the symptoms are not obvious, like a broken leg - other people don't take it seriously.' (Person with diabetes) |
How many people in Scotland have diabetes?
10. At present, it is not known with any certainty how many people in Scotland have diabetes. Estimates vary and whilst it would be possible to measure the number of people diagnosed as having diabetes, the number of people with diabetes who have not yet been diagnosed can only ever be estimated. Calculations must also take account of the ever-rising number of people developing diabetes.
11. The Scottish Diabetes Survey 2001 is starting to help to answer the question of how many people in Scotland have diabetes. The Survey identified 105,777 people with diabetes, a prevalence of 2.1%. However, even in this provisional survey, eight areas returned figures above 2.1%. The 'true' figure is therefore almost certainly over 2.5% and probably above 3% in some areas.
The percentages used in the figure above (and taken from the Scottish Diabetes Survey 2001) are based on data provided by the Registrar General for Scotland for a Scottish population of 5,119,200, the mid-year estimate at 30 June 1999.
12. A number of commentators (including the WHO) have suggested that the total number of people with diabetes is set to double over the next 10-15 years. This would mean well in excess of 200,000 people with diabetes in Scotland.
Table 2 Care of people with diabetes in a general practice population In Scotland, the average GP list size is 1,508. For a practice with 3,000 registered patients, there will be around 90 to 100 individuals with diabetes. Of these, around 15 to 19 people will have type 1 diabetes. The remainder will have type 2 diabetes. There will probably be two people with diabetes aged under 15 years, while 40 to 48 patients with diabetes will be aged over 65 years. While a substantial majority of the patients with diabetes will be well and active, there will probably be one patient who is registered blind as a result of diabetes, another who has had a lower limb amputation because of diabetes-related circulatory disease, a further patient who has end-stage renal disease and seven or eight diabetic patients who have had a myocardial infarction (heart attack). There is increasing evidence that systematic clinical review with good control of glycaemia and blood pressure can delay and even prevent the onset of complications of diabetes. This implies at least one annual review for each person with diabetes. It also implies the existence of a clinical management system to ensure that systematic care is given to all diabetics registered with the practice. If this systematic care is to be provided in a manner which can be trusted by the person with diabetes, sufficient dedicated time must be made available for each individual to build that relationship, the confidence and the motivation needed. As a minimum, 30 minutes of practice staff time should be allocated towards the annual review for each individual. This would mean approximately six patients could be seen per (three-hour) session. So, in this example, the practice might need to organise about 17 diabetes review clinics per year. However, a commitment to more systematic diabetes care will also bring with it a need for additional appointments to enable changes in treatment to be implemented and monitored. This reinforces the need to develop the roles of all members of the primary care team. Derived from Scottish Diabetes Survey 2001 |
Why are the numbers of people with diabetes increasing?
13. There is an increasing incidence of both type 1 and type 2 diabetes, but particularly the latter. The reasons for the growth in type 1 remain unclear. The more pronounced rise in type 2 diabetes is most often attributed to a combination of better detection and changes to lifestyles (resulting in people taking less exercise) and diet, leading to increasing levels of overweight and obesity. Obese women are at least 27 times more likely to have type 2 diabetes than those of a healthy weight; men who are obese are at least seven times more likely to have type 2 diabetes than men of a healthy weight. In addition, because type 2 diabetes is more common amongst older people, the fact that the population as a whole is ageing means that diabetes will become more common.
What is the economic cost of diabetes?
14. Diabetes is estimated to account for about 5% of NHS costs. In Scotland for 2002/03 this equates to over 320 million. However, as set out in the table below, calculating the true cost of diabetes is not straightforward. The most costly component of diabetes care is the treatment of diabetic complications necessitating hospital in-patient care. Therefore, the prevention of complications has economic benefits as well as obvious benefits for the quality of life of individuals with diabetes.
Table 3 Calculating the cost of diabetes Calculating the costs of a complex chronic disease such as diabetes is difficult because information and accounting systems in the NHS are not easily subdivided by condition or specialty. Furthermore, apart from the costs directly linked to the diagnosis and management of diabetes itself, there are the costs related to the complications of diabetes (such as heart disease and stroke) which rely on certain assumptions about what proportion of the costs are due to diabetes. In addition, there are the indirect costs of diabetes which are not borne by the NHS, such as ability to work and the quality of life. Examples of cost studies: (1) 8.7% of acute sector costs devoted to people with diabetes. Calculated to be an average of 2,201 per person per year, compared to 308 for each non-diabetic person. Currie, Kraus, et al (1997). (2) Type 2 diabetes estimated (on the basis of 2% prevalence) 4.1% of total NHS expenditure. CODE2 UK (2001). (3) Annual direct cost of care for people with type 2 diabetes calculated at 1,738 (compared to estimate of 1,505 in the CODE 2 UK study). T 2ARDIS (2000). |
What are the origins of the Scottish Diabetes Framework?
15. The decision to produce a Diabetes Framework was announced in Our National Health: A plan for action, a plan for change in December 2000. Dr Mac Armstrong, the Chief Medical Officer, stated from the outset in March 2001 at the conference that launched the start of the Framework process, that it would be developed in an open and inclusive way. At the earliest opportunity, in July 2001, the Framework Working Group issued a consultation paper. The consultation paper was widely circulated and, along with the CSBS diabetes standards, was the subject of two well attended open workshops. This process was intended to:
- Provide an opportunity for all those with an interest in diabetes to contribute towards shaping the direction of diabetes care in Scotland.
- Gather information and evidence to include in the Framework (particularly about local successes which warrant wider dissemination and implementation).
- Publicise information about current and forthcoming developments.
- Alert the NHS in Scotland to the ideas and issues that were likely to be featured in the Framework and in the clinical standards that the CSBS were likely to promulgate.
- Help to build a consensus around the priorities for action.
16. The Scottish Diabetes Framework Working Group received over 100 written responses to the consultation paper, many of which contained detailed and very helpful comment. All the responses were considered by the Working Group and have been used to inform this Framework document. We are grateful to all those who submitted comments.
17. By adopting an open methodology, the Working Group hope that this Framework will be viewed as a natural progression to the ideas set out in the consultation paper and contain few surprises for those now faced with implementing its recommendations.
Table 4 Diabetes is a serious condition. It increases the risk of ill health and shortens life, particularly through heart disease, stroke and kidney failure. It is a leading cause of blindness in people of working age. It is a leading cause of lower limb amputations. Type 2 diabetes doubles or trebles the risk of dying prematurely. High impact. Diabetes affects young and old, although it is more common amongst older people. It has particularly poor outcomes for people who are socially/economically excluded. It disproportionately affects people from black and minority ethnic communities. Increasing numbers. The number of people with diabetes is increasing in Scotland, the UK and worldwide. About 1 in 40 Scots have diabetes and this may rise to as many as 1 in 25 by 2010. Public awareness of the seriousness of diabetes and its consequences is alarmingly low. For example, Diabetes UK, found that less than half the general public knows that diabetes can cause premature death and around three quarters of those at highest risk of developing the condition do not know that they are at risk. Robust evidence base. There is evidence that measures can be taken to help to prevent or delay people developing type 2 diabetes and good evidence that diabetes is a condition, which, if diagnosed at the right time, can be controlled, allowing the majority of people to live normally. Improvements in therapy. There have been some significant changes to the management of diabetes in recent years as a result of new and improved therapies. Impact on quality of life. There are well-developed standards for the care of people with diabetes. When services are delivered to these standards and are organised in ways that reflect the circumstances of their patients, people are more likely to manage their diabetes, have fewer complications and be able to continue with ordinary activities. High cost. Managing diabetes and its consequences are costly to the NHS and have a significant financial impact on people with diabetes, their carers and their families. Track record. Scotland has a good record of service developments in diabetes over recent years. This provides a strong platform on which to build. One condition, many priorities. Diabetes touches upon a number of other Scottish Executive priorities including social inclusion, inequalities, older people, children, maternity services, ethnic minorities, coronary heart disease, and clinical governance. Diabetes offers a focus to bring together different strands of activity. Diabetes as a model. The multi-disciplinary and multi-faceted nature of diabetes care makes it a good model for other chronic diseases. |
Table 5 Timetable of the development of the Scottish Diabetes Framework |
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December 2000 |
Commitment made in Our National Health to publish a Scottish Diabetes Framework. |
March 2001 |
'Diabetes in Scotland' conference - formal launch of process of developing the Framework. |
April 2001 |
First meeting of Scottish Diabetes Framework Working Group. |
July 2001 |
Consultation paper issued. |
August 2001 |
First open meeting held jointly with Clinical Standards Board in Polmont (31 August). |
September 2001 |
Second open meeting held jointly with Clinical Standards Board in Glasgow (7 September). |
November 2001 |
The key Framework Milestones, the CSBS Diabetes Standards and the SIGN diabetes guideline published on World Diabetes Day (14 November). |
March 2002 |
Publication of Scottish Diabetes Framework. |
How were the evidence base and standards for diabetes developed?
18. The Scottish Diabetes Framework defines the policy framework for diabetes care in Scotland. It should be read in conjunction with two key documents; the 'Management of Diabetes' guideline produced by SIGN and the clinical standards for diabetes produced by the Clinical Standards Board for Scotland which were both published in November 2001. These two documents set out the evidence base for the clinical management of diabetes and the standards to which diabetes services in Scotland should be delivered. The standards and the clinical guideline should be viewed as integral parts of the Framework. All three documents have been developed in a process of inclusive joint working. Thus it is our aim that the Framework document provides a mechanism to support and promote their implementation. The improvements in diabetes care described in this Framework demand the implementation of all three documents.
Table 6 Clinical Standards for Diabetes and the Clinical Standards Board What is the Clinical Standards Board for Scotland (CSBS)? The CSBS is a statutory body established as a special Health Board in April 1999. The role of CSBS is to:
CSBS has developed a standard setting and review process in partnership with healthcare professionals and the public. This process complements the legal duty of the board of each NHS body to monitor and improve the quality of healthcare which it provides to individuals (known as clinical governance). How has the CSBS set standards for Diabetes? Working in partnership with the Diabetes Framework Working Group, CSBS set up a Subgroup to develop clinical standards for diabetes services. The Board aims to set standards which are achievable but stretching and to publish reports identifying areas where standards are being met or exceeded as well as those where they are not being achieved. Health professionals and members of the public are represented and the Subgroup drew on work already undertaken such as SIGN and the St Vincent Declaration. Once the standards had been drafted there was a shared consultation period including both the Framework and the draft standards. Following consultation, both the standards and a summary of the Framework were published. The standards will now be piloted prior to a Scotland-wide review of performance and a national report will then be published. How will performance against the standards be reviewed? The review process is being developed with three pathfinder sites across Scotland. A board-wide review of primary and secondary care services will be co-ordinated through the Local Diabetes Service Advisory Group (LDSAG) and the consultant in public health medicine with responsibility for diabetes services. How will performance against the standards be reported? The review process will be refined in the light of the experiences of the pathfinder sites. A programme of review visits to all NHS board areas in Scotland will then be scheduled, beginning January 2003. |
Generic Standards In addition to condition-specific standards the Board has developed Generic Standards which apply to clinical services generally. These Generic Standards are grouped under two broad headings; 'patient focus' and 'safe and effective clinical care'. Patient Focus: designed to ensure that all services respond to patient needs and preferences and that patients are involved in decisions about their own care through effective two-way communication and information sharing. These cover: |
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Assessment |
Initial assessment essential in the development of a plan of care to meet patient needs. |
Patient Involvement |
Patient care outcomes improve when patients are involved in clinical care decisions. |
Patient Information |
Information helps patients make informed choices about their care. |
Patient/Staff Communication |
Good communication between patients and healthcare professionals for effective treatment. |
Patient Feedback |
Patient comments/complaints contribute to the review and development of services. |
Access to Services |
Identified healthcare needs and individual preference should determine access to services. |
Discharge Arrangements |
Effective discharge planning begins on or shortly after admission. |
Safe and Effective Clinical Care: designed to ensure that all patients receive safe and effective care and treatment based on available evidence. These cover: |
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Clinical Guidelines |
Care delivered in accordance with clinical guidelines produces better outcomes. |
Clinical Audit |
Review of clinical practice through audit identifies shortfalls in performance. |
Risk Management |
Management of risks results in a safer system of work and practices. |
Risk Environment |
Organisations work to assess, reduce and control environmental hazards. |
Staff |
Review of competencies and continuing professional development of staff. |
The CSBS use the Generic Standards in two complementary ways: 1. As a prompt during its condition-specific reviews, picking up issues that are particularly important in relation to the service under review or on which a dialogue with the Trust under review seems appropriate. 2. To conduct a baseline review of performance against the Generic Standards in each NHS Trust and Island Health Board. To avoid duplication, the issues covered by the Generic Standards are mentioned in the condition-specific documents only when the relevant project group concludes that there is an additional dimension warranting inclusion. Clinical Standards Board for Scotland. |
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