The group is diverse in terms of ethnicity, geographic location, illness and condition.
Progress
Our user group now has:
- a mission statement, aims and objectives
- ‘ground rules’ to help palliative care service users contribute in a supportive environment.
The group has attracted interest from local hospices and received requests for guidance and help. It has also identified additional service users who are interested in being involved.
Achievements
The user group has already:
- jointly written a chapter for the forthcoming Rosetta Life publication My Place At the Front Of The Queue on user involvement in palliative care
- been in contact with the Journal of Community Care to write a feature on the user involvement initiative
- provided a panel Question Time session on user involvement at the Help the Hospices’ conference
- provided input for Help the Hospices’ consultation on smoking in hospices.
Future plans
The group is committed to building on its initial progress and developing future work to support Help the Hospices and the work of local hospices.
Its specific plans include:
- recruiting new members to the group
- publicising the establishment of the Initiative to local hospices
- identifying what to include in Help the Hospices’ workplan
- meeting with Help the Hospices staff and Board members to make them aware of key issues.
Discussions
Some of the subjects the group has discussed include:
- The group recognises that it can’t be representative: one size does not fit all.
- The group is keen to support other hospices to develop user groups.
- How service users can benefit from the pain management, counselling and emotional support that specialist palliative care is noted for.
- Hospices need to respond specifically to ethnic groups: one member said "if you look at services holistically you need to look holistically at communities".
- People’s lives are fragmented when they are ill and this needs to be understood.
- Care has to be sensitive to the individual, even for small things. “We should be able to have chunky chips if we ask for it” another member of the group said.
