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4. PUTTING PATIENTS AT THE CENTRE
4.1. Patient Focus
4.1.1. In today's NHS, the views of patients and carers have, in principle, the same weight as clinical standards.
4.1.2. The Scottish Health Council has been reformed to help improve the way that people are involved in decisions about health services.
4.1.3. The Patient Experience Programme, Better Together, was established to drive service improvement through patient feedback.
4.1.4. Plans for Patients' Rights legislation affirm a fundamental shift in the relationship between patients and the NHS. Supporting people with diabetes to take personal control of the management of their diabetes is key to a successful action plan.
4.2. Support for self management
4.2.1. According to Diabetes UK, self management is achieved through 'provision of information, structured and ongoing education and psychological and emotional support. People with diabetes need the knowledge, skills and motivation to assess their risks, to understand what they will gain from changing their behaviour or lifestyle and to act on that understanding by engaging in appropriate behaviours.'
4.2.2. People with Type 2 diabetes who become regularly physically active can potentially gain several improvements in health including better glycaemic control, fewer diabetes complications and a better quality of life. A more active population of people with Type 2 diabetes could substantially reduce healthcare burden and expenditure. Given the current epidemic nature of Type 2 diabetes and the extensive benefits of physical activity for the management of Type 2 diabetes, physical activity, alongside improved diet, should be a major priority for people with diabetes and their diabetes care team.
4.2.3. The Long Term Conditions Alliance Scotland ( LTCAS), supported by the Scottish Government, has developed the Scottish strategy for self management, Gaun Yersel. The strategy states:
- Self management is a person-centred approach in which the individual is empowered and has ownership over the management of their life and conditions;
- The role of health and social care professionals, services and treatment is to support the person's journey towards living well in the presence or absence of systems; and
- The approach must be properly resourced.
4.2.4. The Scottish Government has allocated £2m in 2009-2010 and £2m in 2010-2011 to the LTCAS to operate a Self Management Fund. The fund is open to voluntary sector organisations, possibly in partnership with statutory agencies, and it provides an opportunity to develop new initiatives over the next two years which will support people living with diabetes to self care.
ISSUES TO CONSIDER
- What outcomes would indicate acceptable progress in improving support for self management for people with diabetes?
- In what ways should a future diabetes action plan build on the Self Management Strategy for long term conditions?
- What kind of diabetes initiatives would you like to see funded by the Self Management Fund?
4.3. Supporting carers to support self management
4.3.1. There are 660,000 unpaid carers in Scotland and, of these, 110,000 provide 50 hours of care or more each week. Carers are key partners in the provision of care and as such should be involved in individual care planning, policy development and service planning.
4.3.2. Diabetes impacts on unpaid carers in two ways. There are carers who look after others who have diabetes, for example, parents of children with Type 1 diabetes, or people who look after someone with diabetes-related complications. There are also carers who have diabetes and need to deal with looking after their own health while caring for another. On both fronts there is a clear need to support carers in relation to self management - through information, education and personal support.
4.3.3. Specific consideration also needs to be given to young carers, a fifth of whom receive no formal support. Although diabetes may not be the primary condition in relation to their caring responsibilities, diabetes information and support are still vital.
4.3.4. Since 2005, Scottish Ministers require all NHS Boards to prepare and submit for approval a Carer Information Strategy. Strategies need to identify information needs of carers as well as their training needs.
4.3.5. Carer Information Strategies are mechanisms at NHS Board level to help deliver diabetes-related information with a view to better supporting unpaid carers.
ISSUES TO CONSIDER
- What outcomes would indicate acceptable progress in support for self management for carers?
4.4. Self management and vulnerable groups
4.4.1. Some patients have difficulty in accessing the full range of diabetes services, including support for self management. According to the Lothian diabetes MCN Equity Audit Report in 2008, there is greater risk of diabetes among people with learning disabilities, in part due to lifestyle factors. Response to the needs of those with learning disabilities and other vulnerable groups is varied in the NHS. Lothian, for example, has produced a healthy eating toolkit aimed at carers. In England, the Northamptonshire Teaching Primary Care Trust has developed a structured education package based on the principles of self management. The course uses easy words, pictures and other visual aids and participants can bring a carer or supporter. Other initiatives include learning workshops for unpaid carers, accessible information packs and DVD-resources.
ISSUES TO CONSIDER
- What more should be done to support people with diabetes who are particularly vulnerable, for example, people with learning disabilities, to self manage more effectively?
4.5. Involvement and participation
4.5.1. The effective participation of people with diabetes is seen as one of the key ways in which services will improve and the effectiveness of the Managed Clinical Networks will be strengthened over the next three years. It is essential to make sure that people with diabetes get the training and support they need to make the most effective contribution to diabetes service planning.
4.5.2. The Diabetes Care Focus Group brings together people with diabetes from across Scotland to provide advice to the Scottish Diabetes Group reflecting their experience of diabetes care. It met for the first time in March 2008, and its current objectives include:
- Widespread availability of Structured Education Programmes for people across Scotland;
- Effective networking to share the best practice and development across the patient community;
- Active patient involvement in the Scottish Diabetes Group's sub-groups;
- Extensive use of the patient website www.mydiabetesmyway.scot.nhs.uk, the NHSScotland interactive diabetes website to help support people who have diabetes, their families and their friends. It has leaflets, videos, educational tools and games containing information about diabetes; and
- Review of diabetes peer support initiatives.
4.5.3. Scottish Government funding given to Diabetes UK Scotland to support involvement of patients and carers in the diabetes Managed Clinical Networks has resulted in the development of the Diabetes Voices programme. This programme will continue to be rolled out over the next three years and, where necessary, adapted to target specific groups and maximise geographical coverage. At the same time, Diabetes UK Scotland continues to develop and support its individual and group membership base - 11,000 members and 40 voluntary groups - as an informed audience ready to respond to and take part in relevant activities.
ISSUES TO CONSIDER
- How do we ensure that people with diabetes and their carers are able to participate in local service planning?
4.6. Peer support
4.6.1. The Diabetes Care Focus Group will continue to explore the most effective way to provide peer support for people with diabetes particularly the newly diagnosed. This is an important part of self management involving people living with diabetes supporting others, at key stages of living with the condition; a review of the Buddy Service is due to get under way in June 2009. Agreement on the way forward for the service will form part of the new Action Plan.
ISSUES TO CONSIDER
- What indicators or outcomes would indicate acceptable progress in self management for people with diabetes and their carers?
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