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ANNEX TWO: CASE STUDY 1: THE USE OF COOPERATIVE INQUIRY AMONGST DIABETIC SERVICE USERS
Diabetic Users Group: Cooperative inquiry into diabetic services
A group of 8-10 service users with a long term condition (diabetes mellitus) met periodically for a period of three years. The group had an independent facilitator. The group used cooperative inquiry methods to develop information and test practice useful to the participating individuals and the wider system of health care services. A reference group was also formed to allow a dialogue between the service users group and the Local Diabetic Services Advisory Group. The reference group received anonymised material gathered from the group sessions.
The first meeting of the group set success criteria for the group which were to:
- Improve services (campaigns, advocacy)
- Find out more about the condition and support to better self manage
- Raise awareness of the condition and improve practice
The group participants told stories about their lives as it was affected by their diabetes, they shared their experiences and found the areas of common ground. They also were able to learn from each other about what they might expect from the illness and the services, they were able to explore and rehearse situations as diverse as exchanges with over protective family members and negotiating with a health professional to have a service delivered in a different manner. Participants gathered a much bigger picture of what it was to live with diabetes. This served them well when some members of the group went on to sit on planning groups, such as that implementing the National Service Framework for diabetes services in the county. They were able to feel more secure in these representative positions because they had gained something of an overview.
The NHS learnt something about how to listen to differently informed opinion (lived experience rather than expert knowledge from a biological/medical view of illness), including its discomfort with having its practice questioned. Feedback from the group was also a resource to service providers and commissioners in setting service standards and good practice guidelines.
The group demonstrated the value of experience - linking lived experience and expert knowledge, particularly in its later stage when heads of service met with the group to exchange views and stories of 'how things work', or are supposed/designed to work, and how they are experienced by those they are designed to serve. The group members also reported developing increased skills for self management of their condition.
This approach has also demonstrated the value of storytelling as a method for transfer of information and the building of confidence/assertiveness. The value of this being its accessibility as a conversational form, rather than being required to find more formal ways to engage with each other or the system.
The group also developed greater awareness of issues which related to the provision of services. These ranged from the differences between the social and the medical models of disability, the professional politics within the NHS, national funding decisions, the way attitudes of staff affected service delivery, and who receives a service and who goes without. For more information:Sue.porter@researchthatworks.com
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