Scottish Diabetes Framework

Scottish Diabetes Framework

Planning and Managing Services

92. Diabetes is a complex condition which requires the collaboration and communication of many different clinical staff working in a range of different organisations and agencies. An effective diabetes service demands that these various elements work together with patients and their carers to provide integrated care for people with diabetes, ensuring that the care available is appropriate for the stage, type and status of an individual's diabetes. Such a service needs clear objectives, sound leadership, a well trained workforce, high quality data and effective IT, constructive engagement with the people served and a culture which promotes teamworking. All of this points to the development of 'Managed Clinical Networks' as the most effective way ahead for diabetes services.

93. Managed Clinical Networks are defined as: 'linked groups of health professionals and organisations from primary, secondary and tertiary care, working in a co-ordinated manner, unconstrained by existing professional and Trust/Health Board boundaries to ensure equitable provision of high quality and clinically effective services'. Diabetes was cited in MEL(1999)10 as the exemplar condition that requires effective Managed Clinical Network activity in NHS Scotland, a view endorsed by the Framework Working Group.

Strategy, Leadership and Teamworking

CSBS Standard 2 - Organisation: Pathway of Care, Teamworking and Integration of Services

There is an agreed area-wide structured programme of care which clearly defines: reporting arrangements and accountability; the care that people with diabetes should expect to receive; the processes of care that will be followed after diagnosis (including pre- and peri-operative management); the protocols and guidelines that determine which clinician is responsible for the delivery of specific aspects of care; criteria for referral.

94. There is increasing evidence that early diagnosis and the provision of systematic care to people with diabetes improves health outcomes and delays or prevents complications of diabetes. During a lifetime of care, people with diabetes need access to a wide range of healthcare skills including medical, nursing, dietetic, podiatry and psychological. Providing equitable access necessitates teamworking and an integrated approach to service delivery. Diabetes services are, in most areas, very complex and diffuse. Greater co-ordination and direction is needed to raise standards, reduce unacceptable variations and improve efficiency. This is particularly important given the increasing prevalence of diabetes.

Leadership

95. Effective diabetes services require clear strategic thinking, identifiable clinical and managerial leaders and structures which promote teamworking, collaboration and good communication. NHS boards are at different stages in terms of developing more integrated services and leadership styles will need to adapt and change as services develop. In identifying clinical leaders NHS boards and healthcare professionals will wish to consider the longer-term need for clear leadership of the Managed Clinical Network.

ACTION POINT

Clinical leaders should be identified at locality level to champion local integrated diabetes services in all NHS boards by June 2002.

96. Part of the leadership role is ensuring that the way services are organised and delivered reflect the needs and preferences of patients, not just those of the staff. Part of this task will be considering the scope for all specialist services and more general healthcare services to work together more effectively to care for people with diabetes. This will include contributing to the on-going professional training and development of staff in secondary and primary care settings.

97. It is clear that in addition to clinical leaders, those areas which have been able to make most progress towards increasing the integration of services have been the areas which have been able to call upon the skills of a diabetes co-ordinator or project manager. A service which can rely upon good communications, reliable data, well planned meetings and effective administration will significantly reduce pressures on healthcare professionals and so allow more time for patient care.

ACTION POINT

A dedicated 'diabetes co-ordinator' to improve communications within the local diabetes community and provide administrative support to enhance integrated care across primary and secondary care should be identified in all NHS boards by December 2002. The co-ordinator should be responsible to the LDSAG for strategy and implementation of policy at locality level.

Local Diabetes Service Advisory Groups

98. Action is needed at all levels and requires the commitment of all stakeholders. In the short term, organisations need to set up (or reinforce) local organisational structures which support integrated and co-ordinated diabetes care. In the longer term they need to make these structures work in order to nurture a culture which supports teamwork, inclusive planning and good communications. A 'whole systems approach' to diabetes care is essential. Many NHS boards already have the origins of effective clinical network activity in diabetes with the creation of multi-professional diabetes advisory groups (LDSAGs) with representation from both primary and secondary care, as well as in most cases service users or carers.

ACTION POINT

All NHS boards should establish an effective multi-professional Local Diabetes Service Advisory Group (or equivalent) with service user involvement by June 2002.

Table 18 Local Diabetes Service Advisory Groups A Local Diabetes Service Advisory Group (or LDSAG) was an idea championed by Diabetes UK as a means of providing a coherent multi-disciplinary focus for the diffuse elements of diabetes care in an area. The idea caught on and LDSAGs were set up in many areas, albeit with differing roles, remits, memberships and degrees of effectiveness. The Diabetes Framework seeks to re-energise and strengthen LDSAGs so that they become the main driver for change of diabetes services at regional level. A key recommendation of the Scottish Diabetes Framework is that all NHS boards put in place a group responsible for developing a local diabetes strategy and for advising on, and monitoring, the effects of that strategy. It should, in addition, oversee the agreement on priority setting for diabetes services locally and the development of systems to facilitate the achievement of targets and of user satisfaction and for monitoring and auditing the quality of the service against targets and standards. LDSAGs should produce an annual report on developments and progress. As a minimum, the report should be presented to the local NHS board in public session. Membership of the LDSAG should include all stakeholders of diabetes services; i.e. service users, representation from primary care clinicians, public health, managers specialist team(s) and commissioners of provider services, Diabetes UK, Local Health Councils and the local authority. There should also be consideration of co-opting relevant occasional members e.g. health promotion or social work. Support and training should be available for all members of the LDSAG, but in particular for lay members. Consideration should be given by NHS boards to resourcing the core leadership team of the LDSAG. This would include protected sessional time for the network lead clinician, diabetes co-ordinator, and secretarial support. These individuals should be accountable to the LDSAG/clinical network. LDSAGs represent a key step in the evolution of diabetes Managed Clinical Networks, and should form the core of the Managed Clinical Network's management arrangements.

Reporting Arrangements

99. Several NHS boards already publish a yearly report of diabetes activity. Such reports offer a valuable means of communicating to staff, patients and the public about recent achievements and developments, as well as providing a focus for those planning and managing services. It also provides a useful record for those agencies with a responsibility to monitor local services such as the Clinical Standards Board and the Scottish Executive. It is strongly recommended that this practice be followed by all NHS boards, in order to pave the way towards the annual report which the Managed Clinical Network will produce.

ACTION POINT

All NHS boards should publish an Annual Diabetes Report. A report for 2002/03 should be prepared and published by each LDSAG by June 2003.

Strategy and Implementation Plan

100. Clarity over objectives, a shared understanding of how the various elements of diabetes will interact and agreement about the resource and workforce implications of any proposed developments are essential if progress is to be made. This requires the delineation of a diabetes strategy, which, depending on local requirements may be a standalone document, or a part of the Local Health Plan. The LDSAG provides the logical forum to develop the strategy. Specific objectives and targets in the strategy and implementation plan should conform to the recommendations of the Scottish Diabetes Framework and strive to meet the clinical standards identified by the Clinical Standards Board. Local plans also need to be aligned with related developments such as in CHD, maternity services and primary care modernisation.

ACTION POINT

All NHS boards should publish a local diabetes strategy and implementation plan by April 2003.

Workforce Planning

101. Current pressures on diabetes services present a strong case for seeking to find more effective and efficient ways of organising and delivering care. However, even with improved organisational arrangements, increasing numbers of people with diabetes mean that NHS boards will need to look critically at the workforce implications of providing effective diabetes services. The Scottish Executive has already signalled in its response to Planning Together, the importance of workforce development and the need to ensure the integration of workforce planning and service planning. The Scottish Diabetes Group will need to establish close links with the new national and regional arrangements for workforce planning being developed by the Scottish Executive. It is anticipated that the Diabetes Collaborative Improvement Programme (outlined on page 67) will be helpful to NHS boards in examining the current and future workforce implications of the drive to improve diabetes services.

Table 19 Integrated Workforce Planning Planning Together, the report of the Scottish Integrated Workforce Planning Group, set out a conceptual framework and a practical approach to building an effective workforce planning function for Scotland. The report set out the key benefits of integrated workforce planning: Better match of teams to service delivery More effective use of existing and potential skills Minimised chance of service failure from workforce difficulties Greater flexibility to handle demand peaks Rationale to inform choice between service options Realistic basis for the timing of developments Planning Together, Scottish Executive Health Department (January 2002)

ACTION POINT

A workforce survey of diabetes services in hospitals and the community (e.g. specialist nurses, podiatrists, dietitians, community nurses, general practitioners and consultants) will be commissioned by January 2003.

Diabetes Collaborative Improvement Programme

102. The implementation of the Scottish Diabetes Framework and in particular the strengthening of LDSAGs and the formation of managed clinical networks will be supported through the creation of a Collaborative Improvement Programme. The primary objective of the Collaborative is to raise the standard of diabetes care across Scotland. This will be achieved through the involvement of healthcare and other professions from all NHS board areas in a structured national service improvement programme.

MILESTONE

A Diabetes Collaborative Improvement Programme will be established by March 2002 to support the sharing of experience and best practice throughout Scotland to improve care and outcomes for people with diabetes.

Table 20 Diabetes Collaborative Improvement Programme The Collaborative approach is a tried and tested systematic methodology, developed by the Institute for Healthcare Improvement (US), which has been successfully applied to improving healthcare in the US, Sweden and England. The overall goal of the Collaborative is to: facilitate a structured, national response to clinical standards and guidelines; optimise the overall experience and outcomes of care for each patient by improving care delivery systems by reducing delays and removing constraints; support the development of long-term clinical networks. In summary this approach involves: developing, through an Expert Panel, a set of principles, ideas and actions which would secure the greatest gain in a particular area of care if they were replicated across all those responsible for the delivery of that care; presenting these ideas in conjunction with change management methods to participating Trusts/Practices; enabling these sites to apply the learning to their own real life situation through rapid and intensive change management methods; sharing the learning across all participating sites to help support the broad roll out of ideas and practice. The Programme will be structured over an 18-month period through a series of linked Learning Sessions and Action Periods. During 'Learning Sessions' Local Project Teams will be able to learn about relevant tools and techniques for the next Action Period, share experience and networking with other Project Teams, review performance from the previous Action Period and set the agenda/deliverables for the next Action Period. 'Action Periods' are the periods of activity (based on PLAN - DO - STUDY - ACT (PDSA) change cycles) in which the service improvement ideas defined during the Learning Sessions will be implemented. The effective management of the programme is critical and participating sites will have the support of Programme Facilitators specifically trained to help clinical teams to implement the change management methods.

Managed Clinical Networks

103. The future of diabetes care is to move towards a whole systems approach and the establishment of Managed Clinical Networks. Some areas are already beginning to function along the lines of a network and all other areas should adopt a similar approach. LDSAGs represent important precursors of Managed Clinical Networks.

MILESTONE

Managed Clinical Networks for diabetes will be established in all NHS boards by September 2004.

Table 21 Managed Clinical Networks The concept of Managed Clinical Networks (MCNs) arises from the work of the Acute Services Review. They offer a new and exciting way of delivering services to patients designed to lead to a focus on services and patients rather than upon buildings and organisations. In essence they involve clinical staff working across the boundaries between the different professions and parts of the health service. This should ensure that existing health service resources and staff are allowed to be focused on what matters - patients and their problems. The direct involvement of patients in these networks should ensure that the focus is not lost. The definition of Managed Clinical Networks is 'linked groups of health professionals and organisations from primary, secondary and tertiary care, working in a co-ordinated manner, unconstrained by existing professional and Health Board boundaries, to ensure equitable provision of high quality clinically effective services throughout Scotland'. One of the main strengths of the concept is its flexibility. It can be applied to many different situations, but always to make sure the service is providing the response which is best suited to the interests of the patient who needs that particular service. That flexibility has meaning, however, only if the operation of each Network is governed by core principles. These were set out in MEL(1999)10, and can be summarised as follows: Each Network must be actively managed. The purpose of Network is to improve patient care in terms of quality, access and co-ordination. Patients must be involved in shaping the network. The work of the Network must be evidence-based. Outcomes need to be measured. Audit is integral. A quality assurance programme acceptable to Clinical Standards Boards of Scotland is required. The Network must produce an Annual Report. The Network must be genuinely multi-disciplinary. Scottish Executive Health Department, Acute Services Review, June 1998

104. Tayside has pioneered a number of the proposals being put forward in this Framework. The Tayside Diabetes Managed Clinical Network has been built upon a consistent commitment to improving diabetes care over a number of years, combined with an inclusive approach to service development and innovative use of IT. The organisational structure being explored in Tayside may serve as a model for other areas.

Figure 4: Tayside Diabetes Managed Clinical Network

105. Another example of an important innovation in the delivery of diabetes services for children is DIABNET. This managed clinical network for 500 children with type 1 diabetes provides equity of service in diabetes specialist nursing, dietetics and clinical psychology across Fife, Forth Valley and Tayside. This network, the first of its type for children with chronic disease in NHS Scotland, has core elements of clinical governance (shared care pathways, clinical guidelines and protocols), formal evaluation and a particularly novel development of a network wide out of hours telephone support service for children and their families.

Teamworking

106. The basis of all Managed Clinical Networks is teamworking. The Managed Clinical Network must include not only the core team (in the practice or in the department) but also the wider team involving all those who contribute to the care or people with diabetes. Professions which should play a role in the diabetes Managed Clinical Network include optometrists, social workers and community pharmacists. Other groups with a potentially important role to play include universities, local authorities and the pharmaceutical industry.

107. An essential feature of Managed Clinical Networks is the involvement of patients in service planning and in the Network's management arrangements. Lay people who are expected to undertake this work are entitled to proper training, if required, both in respect of the condition itself and in relation to the workings of NHSScotland. In recognition of this, the Scottish Executive Health Department has awarded a grant to Diabetes UK (Scotland) to help promote training of lay people so that they can contribute effectively to diabetes Managed Clinical Networks (see paragraph 52).

Table 22 Community Pharmacy The Right Medicine, the recently published strategy for pharmaceutical care in Scotland, highlights the important role which pharmacists can play in enhancing the care of people with diabetes. The strategy points to the need to recognise and increase the role of community pharmacists as members of the healthcare team. 'Community pharmacists are often patient's first point of contact, and for some their only contact, with a healthcare professional. This creates a unique opportunity to improve the gateways for signposting, accessing and providing services and information on health and health issues to a broad spectrum of the population. This includes the most vulnerable in our communities; older people, people with mental health problems, homeless people, travellers and drug users. All of these are people who might have difficulty, for lifestyle reasons, in accessing healthcare.' (p.6) In the context of diabetes, the strategy suggests that community pharmacists could have an important role in developing screening, diagnostic and referral services, by promoting healthy lifestyles and screening for risk factors, as well as encouraging safe and appropriate self-medication. Also highlighted is the experience of pharmacists working in diabetes clinics to target patients with cardiovascular complications by conducting medication reviews and optimising secondary prevention treatment, including therapy for high blood pressure. Scottish Executive Health Department, The Right Medicine: A Strategy for Pharmaceutical Care in Scotland (2002)

Table 23 Working with the Pharmaceutical Industry 'The Pharmaceutical Industry has expertise on how and why medicines are used and it is important to work with them. The [Pharmaceutical] Profession is keen to work in partnership with the Industry both to support existing services and develop new services. This includes the managed care of chronic condition, therapeutic drug monitoring and health promotion. Action: The SEHD will produce guidance on joint working between NHSScotland and the Pharmaceutical Industry, which is transparent and improves patient care (December 2002).' Scottish Executive Health Department, The Right Medicine: A Strategy for Pharmaceutical Care in Scotland (2002) (p.11)

Education and Training for Professionals

108. 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 staff training is needed in order to maintain standards of health care; ensure consistency in care delivery; ensure relevant and appropriate information is delivered to staff and to patients; help professionals keep up to date with new developments in diabetes; and provide professional development.

109. During the fact-finding undertaken by Partners in Change (see Table 11), people with diabetes were asked to identify various ways in which they considered that staff training might help staff to provide better services. They suggested that staff should:

• be skilled in reaching out to people and asking them why they don't attend clinics be;
• be aware that people who are chronically ill find it hard to comment or complain. They depend on staff and so need encouragement to ask questions and make suggestions be;
• be equipped with listening skills and awareness of their body language;
• be knowledgeable about local community services and staff in other services;
• be skilled in raising difficult topics such as sexual problems; and
• remember that the person with diabetes knows about their own health and is the most important member of the team.

110. A number of professional associations and others produce educational materials and a wide range of courses and conferences are available to healthcare professionals who wish to learn more about diabetes. Most academic institutions in Scotland run a variety of short and longer courses on diabetes as well as teaching, counselling and computing courses. Much of the diabetes education currently available is very good, but overall it does not appear to be providing all that staff need. Many staff at the two open meetings held to discuss the Framework consultation paper identified more and better training as the thing which they most hoped that the Framework would deliver. The objective must be to find ways of maximising the opportunities for staff to access high quality learning programmes, most likely in the form of multi-disciplinary, flexible, accredited courses. An important first stage is to clarify in more detail what is already available, to quantify the educational gaps and to identify how best to address the training needs of staff.

111. In order to create a mechanism to fund the creation and delivery of educational material and to support innovation in diabetes training and education, the Working Group floated the idea of an educational trust. Discussions are continuing between the Scottish Diabetes Group, universities, Diabetes UK and the pharmaceutical industry about establishing such a Trust.

ACTION POINT

A short-life group will be established by the Scottish Diabetes Group to assess the availability and quality of existing diabetes education and training, to ascertain the training needs of staff, especially in primary care, and to make recommendations for meeting these needs. A report of this work will be published by December 2002.

112. NHS Education for Scotland, the new Special Health Board for education, will be established in April 2002 as the national body responsible for professional education. The Scottish Diabetes Group should work closely with this new body to ensure that the educational needs of those providing diabetes services are fully considered in the development of national educational programmes.

IM&T and Diabetes Registers

CSBS Standard 1 - Organisation: IM&T, Clinical Management Systems, Audit and Monitoring

All people with diabetes, with appropriate consent, are placed on a clinical management system which contains core information about their care and allows ongoing useful clinical information to be recorded for use in direct patient care and service audit.

113. Clinical data are at the core of diabetes care - for individual care, for service planning and for testing compliance with the St Vincent Declaration. Well managed integrated diabetes care needs to be underpinned by efficient and easy to use information technology. Good information management and technology (IM&T) can generate a dependable register, support clinical care, facilitate call-recall and provide robust and reliable audit and epidemiological data. Diabetes registers should not be sterile lists but dynamic resources created as a by-product of clinical care - wherever delivered. Registers are essential to underpin initiatives such as eye screening. Significant effort is required to ensure the appropriate level of patient consent and to establish and maintain the infrastructure to keep registers up to date.

114. Without robust and reliable information, it will be impossible to monitor the impact of the many initiatives outlined in this Framework. Care of individual patients is also compromised when appropriate information is not available, in timely fashion, to all of those involved in their care. This is especially true with the increasing emphasis on multidisciplinary care, often in several different settings. This model of care is particularly well developed for diabetes but increasingly is being applied elsewhere.

'You shouldn't have to tell your history over and over again.' (Person with diabetes)

115. Diabetes is in a strong position to lead the way in developing a national IM&T solution because:

• There is broad agreement and a spirit of collaboration between medical, nursing and PAMS professionals about the way forward.
• A dataset, to support direct patient care, has been agreed and can be adapted/modified for this project with relative ease.
• Products that have been developed, tried and tested in Scotland can begin to deliver real benefits quickly.
• There is strong support from healthcare professionals, politicians and patients for a nationally co-ordinated national IM&T solution.
• A robust IM&T system is essential to underpin call-recall for eye screening in diabetes.
• There is an expectation that experience gained from the diabetes project can be applied in providing similar solutions for other chronic conditions.

116. Against this background the decision was taken to establish and fund SCI-DC (see Table 24) as a mechanism to deliver effective IT to diabetes services in Scotland. The SCI-DC Steering Group reports both to the Scottish Diabetes Group and to the IM&T Programme Board, the national planning and co-ordinating body for IM&T developments in Scotland.

MILESTONE

All hospital-based diabetes clinics will be supported by an effective IT system by December 2002.

MILESTONE

A national IT system to support all aspects of diabetes care will be fully implemented throughout Scotland by December 2005.

Table 24 SCI-DC: Developing a national clinical management system for diabetes A Clinical Steering Group has been established to oversee the development and implementation of the Scottish Care Information Diabetes Collaboration (SCI-DC). A project manager has been appointed and programming, analysis, testing and support personnel are being recruited. The 1.5 million programme funded by the Scottish Executive will be co-ordinated by the Clinical Technology Centre in NHS Tayside. The principal concept underpinning this initiative is the creation of a single shared record for use by all involved in the care of a patient. Ultimately, it is anticipated that the patient too will be able to access and contribute (appropriately) to his/her own record. Work will be in several phases: Implementation of SCI-DC Clinical and SCI-DC Network. These products (previously known as the Lanarkshire Diabetes System and DARTS respectively) are being prepared for roll-out across the country. Detailed information has been sent to all NHS boards and Local Diabetes Service Advisory Groups in preparation for this work. Establishment of links with the broader SCI programme and the use of appropriate modules e.g. SCI-Gateway to facilitate communication with Primary Care. Collaboration with the GPASS development team to ensure seamless interchange with the principal primary care system in Scotland. The suppliers of other systems will also be appraised fully of the datasets and technical details. Development of educational and support content for use (via a web browser) by professionals and patients. Liaison with the Eye Screening Implementation Group to provide tools appropriate to support call-recall and image management. This is an ambitious and complex project. Success will be dependent upon close working between all involved in diabetes care as well as upon the availability of resources. Patients may, of course, have other problems related or unrelated to their diabetes so it is vital that these developments proceed in such a way as to allow exchange of information beyond disease specific boundaries.

Local Diabetes Registers and the Scottish Diabetes Survey

117. NHS boards were asked in September 2000 (in HDL(2000)12) to ensure that each of them had a register of people with diabetes in their health board area. For many boards this acknowledged work already in hand, whilst for some others it raised significant organisational issues. NHS boards were also asked to submit aggregate data to the Scottish Diabetes Survey. This national snapshot survey represented the first attempt to collate comprehensive data on diabetes care in Scotland. By October 2001 data had been submitted by all 15 NHS boards. These data were compiled and analysed by the Scottish Diabetes Survey Monitoring Group and published in November 2001. Although considered to be a provisional survey (and the data were incomplete and do need to be treated with some caution), the 2001 survey marks an important and impressive first step in an ongoing process designed to understand and improve diabetes care across Scotland. The intention is that the survey will be repeated annually.

ACTION POINT

All NHS boards should submit data for the 2002 Scottish Diabetes Survey in September 2002.

ACTION POINT

A conference for those involved in developing and maintaining local diabetes registers will be held by Summer 2002 to update progress, and foster collaboration between all Scottish regions in the 1.5 million SCI-DC (SCI Diabetes Collaboration) programme.

Data protection and confidentiality

118. In recent years, NHSScotland has been increasingly aware of the need to tighten standards of data protection. These requirements are integral to the new diabetes IT and register developments.

Table 25 Data protection and patient confidentiality The Data Protection Act (1997) and numerous professional guidance documents from bodies such as the General Medical Council have led to much debate over how the dissemination of clinical information is managed in healthcare. At first sight there is an apparent tension between the necessity to share data and the requirements for data protection and confidentiality. However, all that is required is clarity over the purpose of a specific exchange of information and the rules relating to consent become apparent. The physical security of information management and technology systems and their contained data is well understood and NHSScotland will continue to provide guidance. Rules on access control and the obtaining and recording of patient consent for data sharing have been subject to close scrutiny by the Confidentiality and Security Advisory Group Scotland. Detailed guidance will be forthcoming but it is understood that a distinction will be made between direct care, the use of information for operational management of the NHS (which would include quality control systems), and education or research. Meantime, the Scottish Executive is developing proposals to enable NHSScotland to comply with the law and best practice in this area. Part of this will be mechanisms to allow anonymised and aggregated data to be generated from clinical records to satisfy many of the requirements of management - a specific example is the Scottish Diabetes Survey. As a matter of priority, a programme of education will be conducted by NHSScotland to improve staff awareness of confidentiality issues and patients' understanding and appreciation of what happens to their data. At the same time systems will be established to ensure that, wherever practicable, patients' wishes are respected. Protecting Patient Confidentiality; A consultation paper (July 2001)

Patient Support

119. The involvement of people with diabetes in their own care is central to improving standards of care. At a population level too, the NHS needs to engage more proactively with the local people whom it serves. This includes improving communications, listening to and acting upon the views of people with diabetes and their carers, involving people with diabetes in the planning and monitoring of services, and assisting people and their families to support each other (e.g. Diabetes UK branches). These issues clearly overlap with the section above on 'Patient Information, Education and Empowerment' and the link to the work of Partners in Change and the new Patient Focus initiative is apparent. The reason for including a building block on 'Patient Support' was to emphasis the role of people with diabetes in the planning and managing of services as well as at a more individual level which is the primary concern of the section relating to care, monitoring and treatment.

Table 26 Volunteering As a general rule, the NHS is not good at drawing in the skills and enthusiasm of the people who use its services, or in the wider community. Yet there is a wide range of ways in which people who have diabetes and their families can contribute their time to benefit other people. Examples include: people with diabetes acting as volunteer 'mentors' or 'buddies' for people who have had a recent diagnosis, or who are going through a period where they would like some additional advice or support; people with diabetes providing training for health care staff on how they live with diabetes and the types of responses and care they find helpful; families of people with diabetes helping to develop information packs for other families, and suggesting sources of information and support that are useful but which NHS staff might not think of; networks of people in local communities providing practical help and friendship to people with diabetes and people with other health problems - lifts to the shops, someone to go with you to the bowling club when your eyesight gets poorer, someone close to your own age who knows what it is like to be a teenager, or a new mum, who also has diabetes. Guidance on volunteering in the NHS: Implementation, MEL(2004)4

Advocacy

120. Along with other people who have chronic health problems, people with diabetes may benefit from access to independent advocacy. There will be occasions when people with diabetes will be faced with difficult choices, and where their decision may not coincide with the view of the staff who provide their care. In these circumstances, support from someone to help the person say what they want can be invaluable for both the individual and for the staff. Sometimes a friend can take on this role, while other people will prefer to use the support of an independent advocacy service.

121. NHS boards, in their role as commissioners of advocacy services, should take account of the likely needs of people with diabetes: the Guide to Commissioners explains in more detail what is expected by the Scottish Executive. When LDSAGs and the NHS Boards are considering the range of local services for people with diabetes, access to independent advocacy should be included in that review. Information about availability of, and access to, independent advocacy should be part of the information given to individual patients and their relatives, and to any local support groups.

'It was only after [giving support and encouragement to other people with diabetes] I realised I could help somebody else, I had something to give.' 'People need time. This does not need to always be from a doctor or a nurse. Other people can give this.' (People with diabetes interviewed by Partners in Change)

Research and Development

122. Research into the management and treatment of diabetes is carried out in various centres. Increasingly, pharmaceutical companies, universities and hospital research units share their expertise and the huge costs by working together. For example, whereas Diabetes UK can afford to fund research in its early stages, it depends upon collaboration with other groups, such as pharmaceutical companies, to take developments forward. During guideline development SIGN identify subject areas where there is little or no evidence. Funding of research into these areas would help to continue the advancement of knowledge in diabetic medicine and promote evidence-based medicine through supplying evidence to guideline programmes such as SIGN.

Table 27 Diabetes Research in Scotland Since 1996 the Chief Scientist Office (CSO) has funded 14 projects relating to diabetes research, at a cost of 1,247,263. Several projects investigate the influence of birth weight on insulin resistance and risk factors for cardiovascular disease in the adult. One study involves the follow up of adults born to women who participated in controlled trials of weight manipulation during pregnancy. Another follow-up study uses monozygotic and dizygotic twin pairs to remove the effects of genetic and early socio-economic factors, to enable the effect of birth weight to be studied. The relationship between disease programming in the infant and maternal glycaemia and foetal size is also being studied in women with type 1 diabetes. Two further projects aim to identify markers that can be used to screen for those diabetic patients most at risk from cardiovascular complications that would benefit from pharmacological intervention. One study is investigating serum B type natriuretic peptide and ECG changes to screen for left ventricular dysfunction, which is asymptomatic and precedes heart failure. The other is looking at QT dispersion and targeted intervention to reduce the incidence of sudden death. Of the remaining projects, several investigate strategies to improve quality of care and improve adherence and diabetic control as well as barriers to this as perceived by patients. Another is pioneering human pancreatic islet cell transplantation in diabetic patients undergoing renal transplantation, using a steroid-free immuno-suppressant regimen. CSO Annual Report 2000-2001

123. The range of research that is undertaken should include work on the strategies and interventions which help people live with diabetes and take on activities that are part of living in a community. It should include research around the mental wellbeing of people with diabetes - what helps to maintain positive mental health and what treatments and other responses are effective when people with diabetes experience depression.