Involving users in local planning and decision-making is the only way to create a health service built around the needs of those who use the service, rather than the needs of the system. Involvement of users in the design, planning, delivery and monitoring of local diabetes care services is central to achieving the NHS Plan vision, to “reshape the NHS from a patient’s point of view”*. Supporting and encouraging the involvement of people with diabetes in local service delivery is necessary to enable expression of views and concerns about their services, and to ensure that user involvement is genuinely taken seriously. The needs of people living with diabetes should be central to every element of local decision making to meet political aspirations, improve legitimacy and ultimately to ensure a better service, where planning and resources are targeted according to the identified needs of those receiving these services. This in turn should lead to improved care outcomes.
Involvement of people with diabetes and their carers in local health and social decision-making is about listening, openness and dialogue between those managing, providing and using the service. Involvement is essentially about relationships and any activity that enables dialogue between all stakeholders has to be included in agendas**, through informing, consultation and partnerships***. Representation and supported involvement of people living with diabetes, for example through Diabetes Networks and similar structures, provide mechanisms for considered, comprehensive and informed views about how needs can be appropriately met^. The User Representatives role has been developed to ensure the voice of people with diabetes is present within diabetes service planning groups. There should be at least two User Representatives on these groups to ensure diverse and broader knowledge, experience, and perspectives are represented. In turn they will be able to carry out wider, further consultation with other people with diabetes. User Representatives on their own should not be seen as sufficient representation of the views of people with diabetes within the local area. Wider consultation should also be undertaken.
Involvement is needed to influence local service delivery to improve:
- partnership working through building and sustaining relationships
- accountability and legitimacy for decisions made
- relationships between the users and staff with clear expectations^^
- feedback about service provision to help improve and shape future provision
- empowerment of communities and reduction of inequalities^^^
- experiences of those who use services leading towards improved health outcomes.
The process of involving people with diabetes in planning diabetes services should be monitored and evaluated. This is to ensure mechanisms for involvement are working effectively and that changes to diabetes care have been made that reflect the input of service users.^^
For further support and guidance please contact the Volunteer Development Team at: volunteering@diabetes.org.uk
References
* NHS Plan. Department of Health. 2001.
**Anderson W, Florin D, Gillan S and Mountford L. Every Voice Counts. Primary Care Organisations and public involvement. Kings Fund.. 2002
***College of health. User Involvement. A guide to developing effective user involvement strategies in the NHS. 1997.
^ Department of Health (HSC1999/210) Patient and public involvement in the new NHS P4v Diabetes UK Guidance for Primary Care Trusts and Diabetes Networks - User Involvement and the Diabetes National Service Framework 2005
^^ viCollege of health. User Involvement. A guide to developing effective user involvement strategies in the NHS. 1997.
^^^ EL(97)39. Priorities and Planning Guidance for the NHS: 1998/1999. NHS Executive. September 1997
April 2006