Diabetes Service Users’ Reference Groups
| Description | To empower people with diabetes to provide service user feedback to Local Health Boards (LHBs) in Wales. |
|---|---|
| Setting | Community |
| Populationting | People with diabetes living in Wales. |
| Intervention summary | Allow and encourage people with diabetes to discuss the issues surrounding their diabetes. |
| Outcome Summary | Attendance at meetings and changes in service planning for people with diabetes. |
| Startup Cost | Not known. There were some start up costs, mainly cost of room hire and staff travel to the initial meetings of each local reference group. |
| Running Cost | Not known. No assessment of the cost across Wales has been made. |
| Funding | Funding is normally provided for each group by their own LHB. LHBs normally provide a venue (often in their own premises), light refreshments, and sometimes travel costs for participants. |
| Started | 2003 |
| Ended | Ongoing |
| Location | Wales |
| Contact |
|
Background
This project was set up by Diabetes UK in order to recruit, set up and support for a limited period groups of people with diabetes who wished to have their views fed into their Local Health Board (LHB) in Wales. These groups are called Diabetes Service Users’ Reference Groups (DSURGs) and have now become self supporting with some LHB involvement.
What is the problem you are trying to solve?
Diabetes UK staff who attended many LDSAGs in Wales identified the lack of a representative approach by people living with diabetes on the LDSAGs. Furthermore, in some areas, there was a lack of support and recognition for people living with diabetes in Wales.
What local organisations are involved?
The project involves co-operation between Diabetes UK and LHBs in Wales. The Welsh Assembly Government also supports an All-Wales Reference Group, which enables networking between the local members of DSURGs from different parts of Wales. How many people are running this project and who are they?
The DSURG is normally the work of one person, generally the diabetes network lead, in each LHB.
How many people are running this project and who are they?
The DSURG is normally the work of one person, generally the diabetes network lead, in each LHB.
What local population are you targeting?
People with diabetes living in Wales with an interest in local service planning
How many people are you targeting?
We are keen to involve as many such people as possible and there is no target number.
Interventions
What interventions are you using to address the problem?
The aims of each DSURG are:
- To ensure that people with diabetes have an opportunity to express their views;
- To allow and encourage discussion of issues thus empowering people with diabetes;
- To receive information on matters discussed and decisions made at the Local Diabetes
- Services Advisory Groups (LDSAG);
- To ensure that the service users voice on representative committees is representative;
- To assist lay people to express their views and develop representation skills;
- To identify representatives for bodies requiring the skills and experience of people living with diabetes;
- To support their representatives on the LDSAG;
- To agree and produce reports on service user issues; and
- To support and encourage the work of the LDSAG.
Is the project design based on evidence? If so, please state reference.
N/A
Outcome
What outcomes or planned outcomes are you measuring?
Diabetes UK periodically surveys the attendance and activities of DSURGs, and communicates with members to ascertain their views on the effectiveness of the groups in influencing LHB planning.
Do you have any outcomes or results yet? If so, what are they?
We have recently surveyed all reference groups and have found that attendance varies. We also have anecdotal evidence that the effectiveness of groups in influencing LHB planning is also very varied.
Is your project relevant to a government target or guideline?
It supports the implementation of Welsh Assembly guidance on patient and public involvement, as set out in the Signposts document 1 .
Feedback
What obstacles did you have to overcome to set up this project?
N/A
What have you learned about the project so far?
The work has shown itself to be broadly transferable within Wales. Each group needs to take account of the rurality, geography, representation and hard-to-reach groups for each region, and find locally appropriate ways to address them, for example in one large rural county there is two groups, one for the north of the county and one for the south.
What would you do differently?
N/A