Scottish Government

DIABETES IN SCOTLAND: CURRENT CHALLENGES AND FUTURE OPPORTUNITIES
Reviewing the Scottish Diabetes Framework

Scottish Executive, Edinburgh 2004

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Purpose of this Document

The NHS in Scotland and the Scottish Executive are working hard to ensure that people with diabetes in Scotland receive the care they need. The Scottish Diabetes Framework, which was published in April 2002, set out the first steps of what was envisaged as a 10-year programme to address the increasing problem of diabetes in Scotland. The time is now right to review the Scottish Diabetes Framework, to explore what progress has been made, to consider what issues remain to be addressed and to identify the priorities for diabetes services over the next two to three years. The intention is to publish a refreshed and updated Scottish Diabetes Framework by early Summer 2005.

This document presents a summary of progress to date as well as highlighting where problems and gaps remain. Based on discussions with a wide range of individuals and organisations, a number of priorities for the future are suggested. This report represents the preliminary conclusions of the review of the Scottish Diabetes Framework. We hope that these ideas will stimulate discussion in preparation for the full publication of the revised Scottish Diabetes Framework in Spring 2005, that will identify the key areas for action and concrete proposals on how they will be addressed.

Information on how to contribute to the review process and how to submit comments is included on

Introduction

Diabetes is a serious and rapidly growing health problem in Scotland. Over 160,000 people in Scotland have been diagnosed with diabetes and it is believed that many thousands more have the condition but have not yet been diagnosed.

Diabetes is a chronic condition with potentially devastating consequences for health. Complications of diabetes include a higher risk of heart disease, stroke, kidney failure, eye disease (diabetic retinopathy) which can lead to blindness, and foot ulceration which can lead to amputation. However, there is robust evidence that good diabetes care (e.g. control of blood pressure, glycaemic control and cholesterol) reduces the risk of these consequences. The evidence base for diabetes treatment was brought together in a clinical guideline (SIGN 55) published by the Scottish Intercollegiate Guidelines Network in November 2001 ¹ and more recently for type 1 diabetes by NICE. ²

Although diabetes is not one of the formal clinical priorities of NHSScotland (cancer, coronary heart disease/stroke and mental health), it is nevertheless a very important condition which affect the lives of thousands of people and which also need to be addressed, not least because of its close association with CHD and stroke. The Scottish Diabetes Framework and the initiatives associated with it have been the Scottish Executive's response to this need. Recognising the significant problem presented by diabetes the Scottish Executive announced in the Health White Paper published in December 2000 ³ its intention to improve diabetes care. This announcement led, in the short term, to the development and publication of standards for diabetes care ⁴, clarity about how best to deliver diabetic eye screening ⁵, publication of the Scottish Diabetes Framework ⁶ and the establishment of the Scottish Diabetes Group to monitor and support the implementation of the Diabetes Framework. The ongoing challenge is to ensure that good intentions and policy statements lead to real improvements in the care of patients.

The Scottish Diabetes Group

The Scottish Diabetes Group was set up by the Scottish Executive in March 2002 to support and monitor the implementation of the Scottish Diabetes Framework. The Group is made up of people from a wide range of backgrounds including patients, doctors, nurses, managers and voluntary organisations. Professor Andrew Morris, who is a professor of diabetic medicine at the University of Dundee, chairs the Group. Most of the Group's work is taken forward by subgroups which each focus on a specific area of the diabetes agenda such as patient issues (the Patient Focus Implementation Group), retinopathy screening, professional education, information technology and research.

Guiding Principles

The Health White Paper Partnership for Care⁷ highlighted the need to change the culture of the NHS in order to deliver a modernised, patient-focused health service and address the challenges facing the NHS, such as the consequences of an ageing population and the increasing prevalence of chronic diseases. The document emphasised the importance of partnership, integration and redesign as the means to achieve improvements.

We need to reduce the heavy burden of diabetes - both on patients and on the health service. This was at the heart of the 1989 St Vincent Declaration ⁸ and the goals and principles of that Declaration remain just as relevant today. In Scotland we will achieve these by the organised activities of the medical services in active partnership with people with diabetes, their families, friends, and workmates and their organisations in the management of their own diabetes and the education for it; in the planning, provision and audit of health care and in promoting and in applying research.

Setting and Monitoring Clinical Standards

Central to the Scottish Diabetes Framework is the definition and monitoring of explicit clinical standards to make clear what level of care patients should expect. NHS Quality Improvement Scotland (NHS QIS) sets and monitors standards for clinical services in Scotland. Working in partnership with the group that produced the Diabetes Framework document, NHS QIS developed a core set of ten clinical standards for diabetes. These standards were published in draft form in November 2001. Following extensive consultation and after being piloted across three NHS Board areas, the diabetes standards were refined and published in final form in October 2002. ⁴

The standards cover all the main aspects of diabetes care and are presented in three sections: (a) Organisation - Clinical Management and the Co-ordination of Care; (b) Patient Focus; and (c) Clinical Review and Management.

During 2003 NHS QIS organised peer review visits to all 15 NHS Boards in Scotland to assess the performance of local diabetes services against the published standards. A national overview report of these assessments, along with local reports on each NHS board visit, was published in March 2004. ⁹

Overall, the NHS QIS national overview report found that "the care of people with diabetes in Scotland is generally of a very high quality and there are many examples of innovative and effective ways of working". However, NHS QIS also highlighted the major challenges facing diabetes services if they are to accelerate changes in practice away from crisis intervention (i.e. reacting to problems once they present) towards active chronic disease management with the emphasis on early warning systems and risk management, with the patient at the heart of his/her care. Specific recommendations made by NHS QIS included:

• speeding up the implementation of the national diabetes computer system;

• improving the quality of patient information;

• developing diabetes training programmes for staff providing diabetes care;

• ensuring that all patients are offered an annual review;

• improving the co-ordination of care and the sharing of information; and

• involving people with diabetes more fully in their own care and in the services they use.

Building Blocks of Diabetes Care

As an aid to planning, the Scottish Diabetes Framework (April 2002) introduced the idea of 'building blocks of diabetes care'. This sought to identify all the constituent parts of diabetes care in order to ensure that no important aspects of diabetes were neglected and to assist in identifying key priorities. Seven 'first stage priority issues' were highlighted.

Although the building block model is rather simplistic (e.g. some issues overlap) it remains helpful as a reminder of the breadth and complexity of diabetes for those providing or planning services, but especially for those people living with diabetes. It reinforces the importance of collaboration between health care professionals and people with diabetes. A key objective of diabetes services is to ensure that despite all the complexity, the service is accessible, understandable and effectively integrated for patients using the system.

Whilst developing the first Diabetes Framework it was recognised that setting too many priorities would simply swamp diabetes teams. Therefore, it was decided to focus on a few key issues. We consider that a pragmatic identification of a limited number of priorities and an incremental approach to change remains the best way to achieve sustainable improvements. Guiding the choice of priorities in 2002 and today is an appreciation of what constitutes a high quality diabetes service.

KEY FEATURES OF A HIGH QUALITY DIABETES SERVICE

Maintaining the Momentum of Current Priorities

The Scottish Diabetes Framework in April 2002 highlighted seven 'first stage priority issues'. Significant progress has been made in these areas although still more remains to be done. The consultations to date have strongly supported the notion that these priorities represent a sensible place to start and that they should continue to be at the centre of initiatives to improve diabetes care.

Patient Information, Education and Empowerment

Outline. This priority includes patient information, education for patients, the promotion of self-management and independence and the involvement of people with diabetes in planning, delivery and monitoring services.

Examples of Progress

• Patient Focus Implementation Group established as a subgroup of the Scottish Diabetes Group.

• Hearing the Voices of People in Scotland who have Diabetes published in 2002. ¹⁰ A report based on the views of 350 people living with diabetes.

• Two pilot sites have been funded to participate in the UK programme to evaluate the effectiveness of DESMOND (Diabetes Education and Self-Management for Ongoing and Newly Diagnosed) a structured education programme for people with type 2 diabetes.

• Up to four sites will be funded to pilot DAFNE (Dose Adjustment For Normal Eating) an intensive education course for people with type 1 diabetes.

• Three patient information videos produced or in production: (a) for families with a child newly diagnosed with type 1 diabetes; (b) pregnancy and diabetes; and (c) for patients with type 2 diabetes who are about to start on insulin.

• Involvement and Empowerment: how people with diabetes can change diabetes services for the better. A conference for patients and carers held in January 2004.

• Report on Patients' Views on Diabetes Literature and Education to be published in 2004.

• One of the most significant changes in recent years has been the shift in the thinking of the NHS about the involvement of patients in planning fora. The general assumption now is that patients will be involved in shaping and monitoring services, whereas previously it was the exception that patients would be involved. People with diabetes are involved in all the national diabetes committees and groups, and were key participants in the peer review visits undertaken by NHS QIS. Locally, patients and carers are able to influence services through membership of Local Diabetes Service Advisory Groups and diabetes Managed Clinical Networks. The groundwork for this aspect of patient involvement was led by Diabetes UK.

Next Steps. There has clearly been some progress in recent years towards the creation of a 'patient-centred' service which puts patients at the centre of their own care and values their views in the planning and monitoring of services. However, it is equally apparent that these changes are far from complete or universal. Existing schemes to promote and support these changes need to be accelerated and generalised and more needs to be done to support patients who wish to become involved in national and local diabetes groups. There is also a need to develop and strengthen ways of ensuring that patient opinion helps to shape services. Individual managed clinical networks should be encouraged to develop a forum to access individual patient views.

Strategy, Leadership and Team Working

Outline. High quality, consistent diabetes care requires a well co-ordinated service. This means clarity about goals and objectives, effective leadership, good communication throughout the whole system and a team approach that draws upon the skills of the extended diabetes team to deliver appropriate and timely care to all patients. Central to the drive to improve the co-ordination and improvement of services has been the development of managed clinical networks. ¹¹

Examples of Progress

• Leadership at national level provided by the Scottish Diabetes Group, chaired by Professor Andrew Morris.

• Clinical leads for diabetes appointed in every NHS Board.

• Diabetes Managed Clinical Networks (MCNs) set up in all areas supported by an MCN Manager. The Scottish Executive allocated 100,000 to each area to support this development.

• The Scottish Primary Care Collaborative is a major change programme funded by the Scottish Executive's Centre for Change and Innovation Unit to support GP practices to redesign their systems and ways of working to improve access and reduce delays for patients. The programme, which will eventually involve half of all practices in Scotland, has led to significant improvements in the care of people with diabetes.

Next Steps. As part of the process of strengthening managed clinical networks, the priority over the next few years will be to develop the diabetes team. The increasing numbers of patients, rising public expectations, developments in treatment methods and continuing financial pressures mean that the current structure of diabetes services is unsustainable in the long term. There is a need to redesign the way in which services are provided in order to support changing roles of staff, improve co-ordination of services and ensure that all patients are able to access high quality care. Specific areas for action include:

• Exploring opportunities for widening the role of community pharmacists in diabetes care.

• Extending the use of healthcare assistants, for example, to provide routine podiatry assessment.

• Examining the role and career development of diabetes specialist nurses.

• Improving patient access to services that have in some areas been under particular pressure such as psychological support, podiatry and dietetics.

• Developing ways of stratifying care in order to increase the proportion of patients receiving care and treatment in primary care and to make better use of specialised hospital-based services.

• Exploring ways of sustaining and enhancing hospital services: e.g. the recruitment and retention of clinical assistants, balancing general medical commitments, improving the management of waiting times.

• Strengthening the links between diabetes services and the national, regional and local workforce development teams.

The challenge for diabetes services is to deliver a high quality service to an ever increasing number of patients, whilst at the same time developing and implementing new and innovative ways of providing services. Recent progress in terms of leadership, greater clarity about strategic direction, improved communications and better co-ordination of services makes it more likely that diabetes services will be able to meet this challenge.

IM&T and Diabetes Registers

Outline. High quality reliable data are required for clinical management and planning. This requires agreement about the dataset (i.e. what information should be captured consistently and how it should be recorded) and an effective IT system to allow data to be collected, collated and shared. In Scotland a national diabetes computer system (SCI-DC) has been developed and is being implemented in all parts of the country. This system is shared across primary and secondary care and maintains an up-to-date shared record which includes core information on every patient and is available to all those involved in the care of that patient. The importance of an up-to-date population-based clinical management system to support direct patient care and service audit was recognised by NHS Quality Improvement Scotland which included this as the first of the diabetes standards. In its review of diabetes services NHS QIS highlighted the completion of the implementation of SCI-DC as a critical development. ⁹

Examples of Progress

• Good progress is being made to roll out the national diabetes computer system (SCI-DC) to all parts of Scotland. The register component of SCI-DC Network is now live in four NHS Boards covering almost half of the population; a further seven areas are expected to go live within the next 6 months.

• Working groups on podiatry, paediatrics, dietetics and diabetes specialist nursing have been set up to develop new modules for SCI-DC. These developments will reinforce the value of SCI-DC as a tool to support direct patient care.

• Following the publication of the NHS QIS review, SCI-DC has moved to bolster its support for local implementation e.g. an additional Implementation Support Officer is being appointed.

• The Scottish Diabetes Group has funded a project to enable the generation of tailored, personalised information for patients, using data held within SCI-DC. The system will generate a printed summary of the outcome of the consultation, including a record of clinical measurements (with details of key trends and historical data) along with the targets agreed between the health care professional and the patient.

• The Scottish Diabetes Core Dataset continues to evolve and the latest iteration of the dataset is due to be published before the end of 2004.

• The annual Scottish Diabetes Survey ¹² provides a useful insight into the development of local diabetes registers. It has also provided an impetus to areas to implement SCI-DC, given that SCI-DC makes completion of the Survey considerably faster and easier.

Next Steps. An effective electronic clinical management system is critical to the improvement of diabetes services. It is critical as an infrastructure to support meaningful collaboration between primary and secondary care, thus avoiding duplication of effort. Many other developments (e.g. service redesign, clinical audit, call-recall systems) depend upon or at least rely heavily on the availability of an effective IT system. It is therefore crucial that the progress in implementing SCI-DC is maintained and accelerated and the functionality of the system continues to evolve.

Education and Training for Professionals

Outline. An effective diabetes service requires all clinical staff to be trained, competent and skilled in their components of diabetes care and able to work with other members of the multidisciplinary team needed to provide an integrated service to people with diabetes. Effective professional education is required in order to maintain standards of health care; ensure consistency in care delivery; help professionals keep up to date with new developments; and provide ongoing professional development. Challenges in delivering these goals include the need to define the skills and knowledge that health care professionals should possess; ensuring that suitable courses are available to deliver these required skills; and ensuring that staff have sufficient time and funds to attend courses.

Examples of Progress

• A Diabetes Education Steering Group set up by the Scottish Diabetes Group to provide a focus for improving education and training for professionals.

• A Competency Framework for the Care of a Person with Diabetes published by NHS Education Scotland (NES) in March 2003. A report to support the professional development of health care professionals by setting out the knowledge and skills they require to deliver care to people with diabetes.

• A Planning Resource for Education in Diabetes in Scotland published in August 2004 by NES and the Scottish Diabetes Group's Diabetes Education Steering Group. This report defines a core curriculum for diabetes education of health care professionals. This will enable education providers to benchmark their diabetes courses and to be accredited by NES.

Next Steps. There is a need to assess the educational needs of staff caring for people with diabetes more systematically in order to ensure that all staff develop and maintain the necessary skills and knowledge. One of the central themes of diabetes care is to increase the proportion of services delivered in primary care. This will require GPs and their teams (in particular practice nurses) to identify their educational needs and for mechanisms to be put in place to provide the necessary professional development.

There is a need to increase the availability of good quality diabetes courses and to raise awareness of existing diabetes training courses. There is also a need to develop training in sub-speciality areas such as dietetics and podiatry. Moves by NES to develop an accreditation process for diabetes courses should be supported.

A key issue for all professional education is how to ensure that knowledge and skills gained through education are applied and maintained in practice. There is a need to examine whether better professional education impacts upon a genuine improvement in clinical care. It would also be helpful to explore whether or not there would be value in introducing a mechanism to accredit practitioners in diabetes.

The Scottish Diabetes Group will encourage each Diabetes MCN to develop a continuous professional development (CPD) strategy. This may include the establishment of diabetes forums to provide opportunities for health care professional to update and refresh their knowledge.

Eye Care

Outline. Damage to the blood vessels in the retina (retinopathy) is a well recognised and common complication of diabetes. It is the largest single cause of blindness amongst working age people in the UK. People with diabetes tell us that blindness is the most feared complication of their condition. In its early stages, diabetic retinopathy is symptom-free. Consequently, regular eye surveillance is required in order to identify promptly damaging changes to the retina. Early identification of sight threatening retinopathy and treatment by laser therapy has been shown to be effective in preventing the onset of visual impairment. However, there is currently evidence of great variability both within regions and between regions, particularly relating to the time interval between screening.

Since the publication of the Health White paper in late 2000 ³ considerable progress has been made towards improving the provision of retinopathy screening for people with diabetes. The Scottish Executive is committed to ensuring that everyone with diabetes (over the age of 12) is offered annual screening for diabetic retinopathy (based on digital photography). The Scottish Executive has allocated 1.2 million to support this programme and the target is to implement a comprehensive system by March 2006. This programme will help to preserve the vision of hundreds of Scots.

Examples of Progress

• Health Technology Assessment Advice 1: Organisation of services for diabetic retinopathy screening. This report published in 2002 by the Health Technology Board for Scotland (now part of NHS Quality Improvement Scotland) recommended digital photography as the most clinically effective, safest and efficient way of delivering retinopathy screening.

• Diabetic Retinopathy Screening Services in Scotland: Recommendations for Implementation. A report published in 2003 by a subgroup of the Scottish Diabetes Group which examines the practical issues of implementing a diabetes retinopathy screening programme. This report was followed-up by HDL(2003)33 - Diabetic Retinopathy Screening Services which confirmed to NHS Boards the intention to deliver comprehensive retinopathy screening by March 2006 and identified National Services Division as the lead for the implementation of this programme.

• Clinical Standards: Diabetic Retinopathy Screening. This document published in 2004 by NHS Quality Improvement Scotland sets out the standards to which retinopathy screening should be delivered.

• A Training Handbook on diabetic retinopathy screening was published in July 2003. This will support nationally agreed but locally delivered training for those providing the screening programme. ¹³

Next Steps. Plans to implement a comprehensive retinopathy screening system by March 2006 are well advanced and a number of key milestones have been reached. However, many challenges remain including completing the procurement and implementation of software to operate the screening programme; implementing and co-ordinating the local, regional and national components of the programme; compiling accurate and complete lists of patients to be called for screening; and ensuring that NHS Boards are adequately equipped in terms of hardware, trained staff and running costs. The priority for the next two to three years is to ensure that the screening programme is successfully and consistently implemented across the country.

Heart Disease

Outline. Cardiovascular disease is up to five times more common in people with diabetes and is the principal cause of death. People with diabetes have an increased incidence of angina, myocardial infarction (heart attack), heart failure, stroke and peripheral vascular disease (disease of arteries to the legs, which potentially leads to gangrene/
amputation). The classical cardiovascular risk factors of hypertension (high blood pressure), hyperlipidaemia (high levels of fat in the blood) and smoking are more common in people with diabetes. The greater the number of risk factors, the greater the risk of premature mortality. Modifying these risk factors and improving glycaemic control is likely to reduce the burden of cardiovascular disease.

Coronary Heart Disease/Stroke is one of the three clinical priorities of the NHS in Scotland. People with diabetes as one of the 'high risk' groups in terms of cardiovascular disease, are benefiting from this national focus.

Examples of Progress

• Coronary Heart Disease and Stroke: Strategy for Scotland published by SEHD in 2002.

• A series of cardiovascular guidelines have been published by the Scottish Intercollegiate Guidelines Network (SIGN) including the management of stable angina, primary prevention of CHD, heart failure, cardiac rehabilitation, hypertension in older people and the management of patients with stroke (rehabilitation, prevention and management of complications, and discharge planning). ¹⁴ SIGN has started work on reviewing the coronary heart disease guidelines with a view to producing a single comprehensive document in 2005.

• There is some evidence that diabetes services have amended practice by adding aggressive risk factor management to the traditional focus on glycaemic control.

• The adoption of targets for blood pressure, cholesterol and smoking within the new GP contract ¹⁵ will focus primary care teams in cardiovascular risk management in diabetes.

• Targets for blood pressure and cholesterol set by the Scottish Primary Care Collaborative have led to significant improvements for patients.

Next Steps. Many people have both diabetes and cardiovascular disease. There is therefore a need to strengthen the links between diabetes managed clinical networks and cardiac MCNs in each NHS Board area.

Implementation and Monitoring

Outline. The Diabetes Framework made it clear that the publication of a diabetes strategy represented only a first step and that implementation and evidence of improvements were the real measures of progress. Mechanisms to monitor change include the Scottish Diabetes Group, the annual Scottish Diabetes Survey and the standards published by NHS Quality Improvement Scotland. Equally important are local mechanisms for monitoring progress such as managed clinical networks and clinical governance arrangements.

Examples of Progress

• NHS Quality Improvement Scotland published its review of diabetes services in March 2004; (see 'Setting and Monitoring Clinical Standards' above).

• The Scottish Diabetes Survey has been collated and published annually since 2001.

• A template for diabetes managed clinical network annual reports has been approved by NHS QIS and the Scottish Diabetes Group.

Next Steps. Building and maintaining the momentum and commitment to improve diabetes services remains a challenge. There is the need for balance between setting national targets and specific deliverables and allowing flexibility to local services to address local priorities; whilst recognising the capacity limits of diabetes services (and in particular the time of individuals) to deliver on such a complex agenda. There has been some criticism that the Diabetes Framework in 2002 did not always achieve an appropriate balance.

There is a need to develop and improve the Scottish Diabetes Survey to ensure that it effectively and fairly measures the quality of care being delivered. The Survey is getting better over time with the spread of SCI-DC and the improvement of local diabetes registers, but there is also a need to link the Survey data with other data sources to provide a more detailed and rounded picture.

One of the findings of the review process and of a recent Diabetes UK ¹⁶ survey has been the relatively low public awareness of the Scottish Diabetes Framework and the activities of the Scottish Diabetes Group. It is recommended that greater effort should be devoted to communicating with patients and local diabetes services about national plans and progress.

The Scottish Diabetes Group will work with NHS QIS to build upon the excellent platform provided by the national overview report ⁹ and agree on a sustainable approach to self-assessment and peer-review of diabetes services over the next three years.

Potential Additional Priorities

One of the main purposes of the review of the Framework is to find out what issues in diabetes require most attention over the next few years. There was general agreement that the existing priorities remained important and should be retained. Discussions to date have identified several topics where it is believed additional efforts are required.

Type 1 Diabetes (including Children & Young People)

People with type 1 diabetes make up perhaps only 15% of the total diabetic population. However, the incidence of type 1 diabetes in Scottish children has risen sharply over the last few decades. Children who present with diabetes at a young age will have lived with diabetes for a long time by the time they reach adulthood. Complications of diabetes are closely related to duration and the level of glycaemic control. ¹⁷ Studies by the Juvenile Diabetes Research Foundation indicate an average person with type 1 diabetes loses 15 years of life and because they develop diabetes earlier in life, they may have to live with the consequences of complications for many years. In addition, there is significant morbidity caused by diabetic retinopathy, nephropathy and peripheral neuropathy. Despite this, the care of this group of patients has to compete for resources with what has been described as a 'tidal wave' of type 2 diabetes. Some of the care, in particular screening for complications, is similar regardless of the type of diabetes. However, people with type 1 diabetes have special problems relating to the complexity of self-care skills and the consequent need for education and support. There are concerns that this aspect of care has not perhaps received the attention that it should have in recent years. Furthermore, studies in Scotland show that a high percentage of children and young adults have haemoglobin A1c levels outwith targets recommended for good control as defined by the National Institute for Clinical Excellence. As a result it is clear that more young people should be on intensified insulin regimes incorporating a combination of basal bolus insulins together with more frequent blood glucose monitoring and insulin adjustment according to blood glucose results. There is a need for coordination of meal sizes, exercise, healthy diet underpinned by more comprehensive diabetes education and in addition appropriate psychological support.

In light of these problems it is proposed that the Diabetes Framework should place greater focus on services for people with type 1 diabetes. Specific actions that might be taken to support this include:

• Extend educational initiatives for health care professionals in intensifying insulin regimes. There is also a need for greater clarity about the use and funding of continuous subcutaneous insulin infusion (i.e. insulin pump therapy); this can be highly beneficial for some patients with type 1 diabetes.

• Explore options and ideas for improving children's diabetes services, in particular the organisation of services. DiabNet (a network to co-ordinate care for children with diabetes in Tayside, Fife & Forth Valley) is an example of good practice that could be extended to other parts of Scotland.

• Improve IM&T in children's diabetes services. There is a need to ensure that children's diabetes services fully benefit from existing initiatives to streamline and improve services and clinical data through the introduction of modern computer systems.

• Produce a model of care as a means to improve collaboration and integration between children's and adult care services. For a variety of reasons (including the fact that for many young people other concerns become more important than attending healthcare appointments) the transition from paediatric to adult care services is sometimes poorly managed.

• Undertake an audit of current services for children and young people in order to obtain a clearer picture of service provision and to identify gaps and pressures in the service.

Foot Care

Improvements in foot care are likely to result from (a) better patient education in good foot care; (b) more efficient and consistent systems of foot checks; and (c) increased stratification of patients to ensure that those at greatest risk are able to access specialist care. As with other aspects of diabetes care these improvements will require clarity about what constitutes high quality care combined with accessible professional education to promulgate these skills; better and more readily available information for patients; accurate and complete clinical data available to all members of the diabetes team; and redesign of foot care services to ensure that best use is made of the skills of the team. Guidance recently published by NICE on the management of foot problems in type 2 diabetes will help to make these improvements. ¹⁸

Work is being taken forward to extend the functionality of SCI-DC to make it more useful to those monitoring or treating the feet of people with diabetes. The development of a Foot Screening Tool is well advanced and work on an ulcer management module has begun. There is a need to complete these tools and make them available across the country.

Psychological support for patients

Patients, carers and clinicians have expressed concerns about psychological aspects of care for people with diabetes. These concerns include a perception that diabetes services often fail to provide adequate emotional support for patients, but also that specialist psychological services are difficult to access for those patients experiencing significant problems.

The Scottish Executive has acknowledged the limited capacity of the existing psychology workforce across the whole of healthcare in Scotland. As a result, steps are currently being taken to develop a national strategy to address these issues. These national developments present a window of opportunity for diabetes and other chronic diseases.

The Chairman of the Review Group has held useful meetings about realistic ways in which the Diabetes Framework review might provide a national lead in prioritising the organisation and delivery of psychological services for diabetes. Input from appropriately qualified psychologists has been identified as being urgently needed to develop and support the skills of the multidisciplinary team. Specifically, there is a need to equip frontline diabetes staff with the skills to intervene appropriately in the management of commonly occurring psychological difficulties.

The health behaviour change programme in cardiac rehabilitation provides a useful model of a network of psychological support.

It is clear that patients and carers consider the emotional and psychological aspects of diabetes to be important. It is equally clear that current services are not adequately catering for this demand. Working with national groups to develop a national strategy for improving psychological support for people with diabetes is an important first step. However, improvements in services at local level will depend upon marshalling robust evidence of the clinical benefits of psychological interventions, reinforcing the point that the psychologist ought to be an integral member of the diabetes team and crucially, attracting funding to develop and sustain effective psychological services.

Minority Ethnic Groups

In 2002, the Scottish Diabetes Framework highlighted the fact that there is a higher prevalence of type 2 diabetes in some minority ethnic communities than in the rest of the population. In order to pull together existing information about the causes and consequences of this issue a commitment was made to produce a report. In April 2004 Diabetes in Minority Ethnic Groups in Scotland was published by the National Resource Centre for Ethnic Minority Health (NRCEMH) in collaboration with the Scottish Diabetes Group. This report included a range of statistics and research findings, highlighted a number of examples of good practice and presented a series of conclusions and recommendations. It also provided a reminder that as a result of the publication of Fair For All ¹⁹ and the Race Relations (Amendment) Act 2000 ²⁰ NHS organisations have new responsibilities to ensure that they promote equality of opportunity and ensure that flexible and sensitive services are available to minority ethnic communities.

Following the publication of the NRCEMH report the Scottish Diabetes Group established a new subgroup on Diabetes in Ethnic Minorities to identify practical measures to assist the Scottish Diabetes Group and NHS organisations to deliver more culturally competent services. There are significant challenges to achieve this goal and the subgroup would welcome ideas and support from those with an interest in this issue.

Research

Research and development in diabetes and, in particular, work that might lead to a cure, is rated very highly by patients and the voluntary groups which represent them. The Chief Scientist Office (CSO) in collaboration with the Scottish Diabetes Group has established a Diabetes Research Group to stimulate and increase diabetes research in Scotland. Since the inception of this group, applications to CSO to fund diabetes projects have increased significantly and CSO is currently supporting 10 diabetes research projects at a cost of 1.27 million. The main aim of the group, acknowledging the relatively small size of Scotland and the budgets available for research, is to maximise the impact of diabetes research by promoting collaboration between research centres.

Chronic Disease Management

The current rapid demographic change in Scotland will result in "a rise and rise" of chronic disease over the next 20 years. It is estimated that one in three people aged over the age of 30 has a chronic disease, and 15% of the population have two, three or more co-existent chronic diseases. There is therefore an urgent need to look at the most efficient and effective way to manage chronic disease in Scotland.

There is an emergent international literature which provides evidence that effective chronic disease management can be achieved across communities. Much of the evidence is observational - the evaluation of common, complex, healthcare systems is difficult and the randomised control trial approach is not always feasible in terms of evaluation. The Medical Research Council (MRC) and other bodies have acknowledged that research in this area is weak and there is a need for new methodologies. Notwithstanding this there are powerful messages from observational data (e.g. the King's Fund Report) which provides a consistent view of the key ingredients of the successful Chronic Disease Model. These have been encapsulated by Ed Wagner in Seattle who has coined the term "Chronic Care Model". The recent Kings Fund Report suggest that successful Managed Care Organisations in the United States of America have adopted some, but not all, of these key components. Many of the components of the Chronic Care Model are already core aims of the emergent clinical networks in diabetes, either formally or informally.

Experience with diabetes has shed some light on two key challenges of integrated chronic disease management. First, it is clear that lateral integration into other disease areas is essential if patient centred care is to be achieved. This is evident from the diabetes data which show that up to 80% of our patients have co-existent ischaemic heart disease, hypertension, Chronic Obstructive Pulmonary Disease (COPD), hyperlipidemia etc. The second challenge relates to the required commitment. If integrated care is to be achieved chronic disease management cannot rely solely on the enthusiasm, collaboration and "good will" of carers.

The Scottish Diabetes Group is aware of the work on chronic disease management currently being undertaken as part of the National Framework for Service Change, and understands that that will identify a set of generic principles which should underpin a new approach to chronic disease management in Scotland, based on the best aspects of international models and responding to patients' wishes about the type of services they want. As there will be a particular focus on the assertive management of chronic co-morbidities, the Group is anxious to work with the Scottish Executive in taking this approach forward, based on the work already done in the diabetes context, particularly in terms of the creation of electronic databases and disease registers.

Other Building Blocks of Diabetes Care

Prevention and Early Detection

The building block model subdivided the theme of prevention and early detection into three issues: (a) 'Health Promotion' - health improvement strategies primarily aimed at improving diet, increasing physical activity and combating smoking; (b) 'Public Education' - increasing public awareness of diabetes, its symptoms and its impact; and (c) High-Risk Groups - ensuring that those at high risk of developing diabetes are identified at an early stage and before the onset of complications. These issues relate primarily to type 2 diabetes. At present there is no way of preventing the onset of type 1 diabetes.

The issues identified under "health promotion" extend well beyond diabetes. However the time has come to state clearly the problem of the overlapping issues of obesity and type 2 diabetes. Indeed, this may be the biggest public health challenge of the 21st century. It has been suggested that as many as 1.7 billion of the world's population are already at risk of weight related diseases and this number is rising exponentially. By 2025 the International Diabetes Federation estimates that 6.3% of the world's population will be living with diabetes, with a higher proportion predicted in the UK. ²¹

The epidemic of obesity will inevitably have far reaching consequences for society and health services. Diabetes services cannot on their own expect to make an impact on the problem of lifestyles leading to diabetes but efforts aimed at the prevention of obesity and type 2 diabetes must be extended.

The Scottish Executive have already committed to taking action on improving diet and increasing physical activity levels through a number of long term, far reaching and interconnected health improvement policies. The overarching strategy, Improving Health in Scotland - The Challenge,²² identifies physical activity levels and obesity as two of the five top key risk factors to be focused on in the first phase. Specific actions have been set out in the supporting documents Eating for Health - Meeting the Challenge²³ and the Physical Activity Strategy - Let's Make Scotland More Active. ²⁴Eating for Health sets out an action plan based on national dietary targets and includes the specific aim of combating the rise of obesity and weight within the population through combined approaches on diet and physical activity. The goal set out in the Physical Activity Strategy is for 50% of all adults and 80% of all children to meet the minimum recommended levels of physical activity by 2022. This multi pronged approach to health improvement has been endorsed by the World Health Organisation and fits in with their developing Global Strategy on Diet, Physical Activity and Health.

Although there is good evidence that screening for diabetes amongst high-risk groups can be effective in identifying some people with diabetes at an earlier stage, there is currently no 'off-the-shelf' programme available for rapid implementation and questions remain about how broadly to define the 'at risk' group; about what to screen for (i.e. only diabetes or other conditions as well, such as heart disease); and about what screening method to use. The recently started Diabetes, Heart Disease, and Stroke Prevention Project in England set up under the auspices of the National Screening Committee is likely to provide valuable information to help answer these questions. It is proposed that the Scottish Diabetes Group should commission a report on screening people at high risk of developing diabetes, setting out current practice in Scotland and options for the future.

Care, Monitoring and Treatment

Eight separate building blocks were identified under this heading - 'Information, Education and Empowerment', 'Heart Disease' and 'Eye Care' (which all became first stage priorities and are discussed above), plus 'Initial and Continuing Care', 'Feet', 'Kidney and Nerve Problems', Psychology/Mental Health' and Diabetic Emergencies and Elective Care'. Of this second group of five topics, two issues - foot care and psychological support - emerged from our initial consultations as the areas which should be tackled first. However, there may be value in the Scottish Diabetes Group collaborating with renal medicine specialists to clarify best practice in the referral process for patients whose kidney function is starting to deteriorate.

Specific Groups

Four 'specific groups' were identified in the building block model. Two of these groups 'Children and Young People' and 'Ethnic Minority Groups' have been recognised as pressing issues and it is proposed that greater emphasis should be given to both of these, (see above). It is recommended that the remaining building blocks - 'Pregnancy and Sexual Health' and 'Vulnerable Groups' - should be kept under review but not be prioritised at this time. Nevertheless, some work is being taken forward. In terms of pregnancy, the recent Scottish Audit of Pregnancies in Women with Diabetes indicated that the care of this group of patients was of a generally high standard. Services for erectile dysfunction (the main sexual health problem affecting men with diabetes) is being addressed in the forthcoming national Sexual Health Strategy. The Scottish Diabetes Group is currently commissioning a project to look at diabetes care offered to patients in nursing homes.

Community Issues

The Diabetes Framework acknowledged that there are a range of issues which are of great importance to people with diabetes and their carers but which are not the direct responsibility of the NHS. This includes such things as access to employment, education and social care services, driving and welfare benefits. There is a need for NHS organisations to work creatively with other agencies in order to help to address these issues.

Conclusions

The Scottish Diabetes Framework marked "the start of what is envisaged as a 10-year programme to address the increasing problem of diabetes in Scotland". ²⁵ After two and a half years it is helpful to review what has been achieved and consider in what ways current approaches might be changed or supplemented.

The Scottish Diabetes Framework was and remains a pragmatic attempt to raise the awareness of the public and the health service of the growing problem of diabetes and to stimulate improvements in care by highlighting examples of good practice and by funding a small number of key initiatives and demonstration projects. The increasing number of people in Scotland with diabetes will continue to put pressure on diabetes services. Improvements that can be achieved simply by working harder or by increasing the number of single health care professional groups are not sustainable in the long run. The purpose of the Scottish Diabetes Framework and the initiatives that go with it is to support diabetes services to work more effectively to deliver high quality care to all people with diabetes.

Unfortunately, there are no magic solutions in diabetes that will guarantee high quality care for all patients at all times, or better still, that will deliver a cure. Instead, progress will come from sustained incremental improvements delivered by a wide range of health care professionals working in partnership with patients and carers. The role of the Scottish Diabetes Framework is to provide clarity about overall objectives for all those with an interest in diabetes, whilst also offering encouragement and practical support to those involved in delivering the service.

An argument could be offered for making each of the building blocks of diabetes care a priority. And certainly, we would expect to see some progress being made on all of these issues. However, the reality is that choices need to be made - where everything is a priority, nothing is priority. In addition, there is little point in demanding diabetes services change how they operate if there is no agreement about what it is that should be done; if people are unconvinced by the evidence upon which policies are based; or if health care professionals lack the time, skills or resources to deliver what is demanded. Similarly, a 'one size fits all' approach is inappropriate - what might work in central Glasgow may be less applicable in the central Highlands. Experience in diabetes over the last few years has shown that most progress has been made where time has been taken to build relationships and consensus, where support has been made available to help people to improve their care and when policies have been sufficiently flexible to allow developments to meet local needs and circumstances. Developing a culture which values and supports staff and which encourages an emphasis on continuous quality improvement is vital. Strengthening Diabetes Managed Clinical Networks is essential to foster team working and to support the redesign and improvement of services.

The 'first stage priorities' highlighted by the Diabetes Framework in 2002 largely focused on developing the necessary foundations for an effective diabetes service, for example, developing teamworking and leadership, improving communications and introducing new computer systems. No one has so far suggested that these priorities should be changed although some consider that progress in some areas has been too slow. It is proposed that these should be retained as key priorities. However, it must also be acknowledged that much of this effort, although crucial for the long-term improvement of diabetes services, has been largely invisible to patients. In refreshing the Diabetes Framework there is a need to ensure that patients can see more directly the benefits of the significant effort that is being devoted to improving services. How this might be achieved and which new issues should be prioritised in order to produce the most benefit is a key question for this review.

About This Document

This document was written by Professor Ray Newton (formerly Consultant Diabetologist in Tayside) supported by a small Framework Review Group - Joan Allwinkle (a Diabetes Specialist Nurse), Dr Ronnie Brown (a General Practitioner), Anna Marie MacGregor (a Pharmacist), Ron Marsh (a person with diabetes), Dr Donald Pearson (a Consultant Diabetologist) and Dr Mike Small (Chairman of the Scottish Advisory Group of Diabetes UK and a Consultant Diabetologist).

The conclusions and recommendations of the Review Group were based upon written submissions and informal meetings with patient groups and professional organisations*, discussions with the Scottish Diabetes Group and the Chairs of its subgroups and the findings of a survey undertaken by Diabetes UK. We are grateful to all those who contributed.

• NHS Quality Improvement Scotland; Diabetes UK Scotland; Juvenile Diabetes Research Foundation; Scottish Study Group for the Care of Diabetes in the Young; Diabetes Management and Education Group of the British Dietetic Association; Nutrition and Diet Therapy Department, Ayrshire & Arran; Scottish Renal Association; National Kidney Federation; Royal College of Physicians & Surgeons of Glasgow; Royal College of Physicians of Edinburgh; Royal College of General Practitioners; Royal Pharmaceutical Society of Great Britain; RCN Scottish Diabetes Nurses Forum; Association of British Clinical Diabetologists; ABPI Scottish Diabetes Industry Group; BIVDA (British In Vitro Diagnostic Association); Roche Diagnostics; National Obesity Forum Scotland Working Group.

Contributing to the Discussion

The intention is that a document updating the Scottish Diabetes Framework will be published during the first half of 2005. Final conclusions have not yet been reached but this consultation paper is intended to provide an indication of current thinking about what has been achieved so far and what needs to be done over the next two or three years. Comments, questions and suggestions about this paper or more generally about diabetes services in Scotland would be welcome. The following questions may provide a helpful starting point:

• Are the reflections on recent progress fair and accurate?

• Are the priorities proposed here the right ones?

• What more should be done to ensure that diabetes services are meeting the needs of patients?

• What specific action points should be included in the revised Diabetes Framework?

Comments should be submitted by 4th March 2005, in writing or by email to:

Diabetes in Scotland Review
Scottish Executive Health Department
GER
St Andrew's House
Edinburgh EH1 3DG
Email: Diabetesreview@Scotland.gsi.gov.uk

Please note that comments received may be published or included on the Diabetes in Scotland website ( www.diabetesinscotland.org).

Footnotes

1 Scottish Intercollegiate Guidelines Network. 2001. Management of diabetes: a national clinical guideline. Edinburgh: SIGN (SIGN 55). (November 2001).

2 National Institute for Clinical Excellence. 2004. Type 1 diabetes: diagnosis and management of type 1 diabetes in children, young people and adults. Clinical Guideline 15. (July 2004).

3 Scottish Executive Health Department. 2000. Our National Health: a plan for action, a plan for change.

4 Clinical Standards Board for Scotland. 2001. CSBS Standard for diabetes. Edinburgh: Clinical Standards Board for Scotland (November 2001). URL: http://www.clinicalstandards.org/pdf/Diabetes.pdf. CSBS became part of NHS Quality Improvement Scotland in January 2003. The second edition of the diabetes standards was published in October 2002.

5 Health Technology Board for Scotland. 2002. Health Technology Assessment Report 1: Organisation of services for diabetic retinopathy screening (April 2002). HTBS became part of NHS Quality Improvement Scotland in January 2003.

6 Scottish Executive Health Department. 2002. Scottish Diabetes Framework, (April 2002).

7 Scottish Executive Health Department. 2003. Partnership for Care: Scotland's Health White Paper.

8 St Vincent Joint Task Force for Diabetes. 1995. The Report [Second report of the St Vincent Joint Task Force for Diabetes]. London: Department of Health; British Diabetic Association

9 NHS Quality Improvement Scotland. 2004. Diabetes: National Overview - March 2004.

10 Partners in Change. 2002. Hearing the Voices of People in Scotland Who Have Diabetes.

11 Scottish Executive Health Department. 2002. Promoting the Development of Managed Clinical Networks in NHSScotland, HDL(2002)69, (September 2002).

12 Scottish Executive Health Department. 2004. Scottish Diabetes Survey 2003.

13 Scottish Executive Health Department. 2003. Diabetic Retinopathy Screening Services in Scotland: A Training Handbook, (July 2003).

14 See http://www.sign.ac.uk/guidelines/published/index.html for a complete list of CHD and stroke guidelines.

15 Scottish Executive Health Department. 2004. Standard General Medical Services Contract. (April 2004).

16 Diabetes UK Scotland. 2004. To Make Myself Understood: Patient and carer views of the implementation of the Scottish Diabetes Framework.

17 Diabetes Control and Complications Trial Research Group. 1993. The Effect of Intensive Treatment of Diabetes on the Development and Progression of Long-Term Complications in Insulin-Dependent Diabetes Mellitus. N Engl J Med 1993;329:977-86.

18 National Institute for Clinical Excellence. 2004. Type 2 diabetes: Prevention and management of foot problems. Clinical Guideline 10. (January 2004).

19 Scottish Executive Health Department. 2001. Fair For All: Improving the Health of Ethnic Minority Groups and the Wider Community in Scotland, (December 2001).

20 The Race Relations Act 1976 (Statutory Duties) (Scotland) Order 2002.

International Diabetes Federation (IDF)/International Association for the Study of Obesity (IASO). 2004. Diabetes and Obesity: Time to Act.

Scottish Executive Health Department, 2003. Improving Health in Scotland - The Challenge.

Scottish Executive Health Department, 2004. Eating for Health - Meeting the Challenge.

Scottish Executive Health Department, 2003. Physical Activity Strategy - Let's Make Scotland More Active.

Scottish Executive Health Department, 2002. Scottish Diabetes Framework, p.4.

21 International Diabetes Federation (IDF)/International Association for the Study of Obesity (IASO). 2004. Diabetes and Obesity: Time to Act.

22 Scottish Executive Health Department, 2003. Improving Health in Scotland - The Challenge.

23 Scottish Executive Health Department, 2004. Eating for Health - Meeting the Challenge.

24 Scottish Executive Health Department, 2003. Physical Activity Strategy - Let's Make Scotland More Active.

25 Scottish Executive Health Department, 2002. Scottish Diabetes Framework, p.4.