Background
The project arose out of initial research, funded by the Wellcome Trust that showed positive changes in health behaviour among Bangladeshi people with diabetes tended to be associated with stories told by another member of the community rather than information from health professionals.
The project was also set in the context of trying to find ways of supporting the exceptionally large number of Bangladeshis with diabetes in Tower Hamlets. In this context, where GP practices can have from 300-600 patients with diabetes and figures show 70% of this group die from heart disease and undergo very high rates of complications needing hospital treatment, group work and peer education is seen as vital.
This project has contributed to improving health by: increasing knowledge and understanding of diabetes for Bangladeshi patients, NHS and community bi-lingual health workers. This has affected service delivery and provided some screening; better/more appropriate access to health services and in the long term will contribute to prevention. The emphasis on self-management, and on validating peoples' own experiences, also acts to motivate and empower people to improve their health.
Why this service is a good example of shared practice
It recognised that improved management of diabetes is best addressed in a broader community context rather than the encounter between the patient and health professional in the clinical setting.
It directly addresses the NHS modernising agenda, the expert patient and the standards laid down by the Diabetes NSF
It links to developments in primary care and plans to improve community health
It is part of the ethnic health agenda addressing health inequalities
It addresses diabetes in East London
The project remained responsive and interactive using a development perspective, which allowed flexibility and the ability to tackle issues as they arose.
Objectives
1) To set up self-sustaining storytelling groups of people (especially among those communities most at risk of diabetes and more marginalized from mainstream opportunities), and empower them to understand and manage their diabetes as best they can, to improve health outcomes and lessen reliance on health services.
2) To develop techniques for training health advocates/community workers in the principles of preventative diabetes care and the skills of small group facilitation and learning.
Service Provided
1. Training
In the first stage, the project developed and ran a 10 week training programme for bi-lingual health advocates working in both primary care and hospital settings and for community development workers. The course, Storytelling in Group Learning for Health and Care, was developed with the help of the bi-lingual workers. It has been accredited with the London Open College Network. Two courses have run and 18 bi-lingual workers have successfully completed the course. Plans are being made to run it annually for a range of advocates/community health workers.
2. Storytelling groups in the community
The project moved onto a second stage which involved supporting the trained bi-lingual workers to run story-sharing groups of people with diabetes. An older Bangladeshi womens' group has been up and has been running in a community centre for over a year and is increasingly self-sustaining
Group sessions include exploring the experience of diabetes, concerns and expectations, medication and healthy lifestyle issues as well as learning to self-test and understanding glucose meter readings.
Accountability
The project is accountable to Social Action for Health (a community organisation and registered charity). It has been led by Professor Trish Greenhalgh from UCL Medical School and funded by Diabetes UK.
All the work of the project is underpinned by continuing research and the evaluation of its different stages.
This aspect of the project has focused on:
a) Exploring and documenting the educational potential of sharing stories for improving understanding, self-management and confidence in making health related lifestyle changes
b) Developing and using appropriate measures to assess the impact of storytelling groups on diabetes management and care
Project Aims
The existence of numerous self-sustaining story-sharing groups especially among those most at risk and most marginalized in the community.
Regular clinical input offered to such groups from local NHS services.
Evaluation
Most of the programme aims were achieved or are in the process of being achieved at least in part. In some cases new aims were identified and achieved.
Quote from health advocate on storytelling course
..all health advocates should be advised to take this training and use story-telling methods in their day-to-day work as it works better than formal instructions from a doctor or diabetic nurse..
The sharing stories intervention is now being tested against standard diabetes education in a randomised control trial funded by the Department of Health. For further details see http://www.newhamuniversityhospital.co.uk/poseidon/
Resources
Health professional with expertise in diabetes/some clinical input
Community Development Worker/project co-ordinator (preferably bi-lingual)
Bi-lingual health/community development workers
Research assistant (evaluator)
Local workers and NHS health advocates
The community
Learning
Plans are in place for similar groups: for young Bangladeshi women with gestational diabetes; older Somali women with diabetes; a Gujurati and Urdu speaking cardio-rehabilitation group and an African-Caribbean group.
The training course is being developed into a series and rolled out and offered nationally. Linked audio-visual materials around stories are being developed.
In order to sustain such a project the following needs to be considered:
The importance of working with/through local community groups/workers who are trusted by part of the community
The importance of time- groups' work in particular cannot be rushed. Groups may need a lot of support for a long time before they really get going as self-sustaining groups
The value of sharing stories in terms of validating peoples' own experiences, raising awareness of issues and especially barriers to health care, and as learning tools
The importance of linking the work in with local diabetes services (for sustainability)