Consultation with users, carers and staff in order to improve local palliative care services - how to do it and views on current services

Objective: To learn about the quality of local services and develop an appropriate methodology for future consultation. Methods: Tape recordings were made of patient and carer consultations using semi-structured interviews and staff focus groups using semi-structured questioning. These were then transcribed and analysed. Results: The majority of feedback was positive. Continuity of care is very important and complex when a large range of agencies are involved in an individual package of care. Many staff expressed concern that expectations of patients are beyond what they are able to deliver. Participants wanted to have choice in the way that they were consulted. It is difficult to enable staff to support the consultation process whilst meeting constraints imposed by ethical considerations. The consultation work must demonstrate a difference in order to encourage enthusiasm from staff or patients/carers for projects in the future. Conclusions: Users of palliative care services are a particularly hard group to access and consult with; we must demonstrate that their contribution is likely to lead to change.