In 2015, a group of carers took part in a focus groups to discuss their experiences of end of life care for a loved one and we received the following feedback and thanks from the research group involved:
We are very grateful to those carers who gave their time and were willing to discuss their experiences of losing a loved one and their perspectives of how best to capture feedback on the quality of end of life care for patients and those that matter to them. This is a sensitive area and at times difficult to discuss and in doing so relive experiences, however all agreed that is vital there is a recognised route for patient and carer voices to be heard and inform how services can be improved. Not everyone may want to provide feedback but there should be the opportunity to do so.
Although we did thank individuals post focus group It has been some time since the group took place therefore we have not contacted individuals directly to update being aware that they may not wish further contact at this time.
The feedback we received identified the pros and cons of different approaches and the need to test the feasibility and acceptability of these. We are pleased to tell you that we have now been successful in securing funding to support this work. This includes funding from the Scottish Government to test a survey approach in addition to local methods to evaluate the best approach. We will have a dedicated project person in post as a key point of contact and to provide signposting/ support for the bereaved in providing feedback. The lessons learned re how feedback can be captured sensitively and used effectively a will not just inform services locally but will be shared nationally.
The contribution of VOCAL carers was a key factor in allowing this work to happen. Shirley and I will provide further update and look forward to working with you in relation to the Lothian End of Life care quality programme moving forward.
Kind regards, Patricia
Patricia Brooks Young
Lead Nurse Palliative Care NHS Lothian University Hospitals
Clinical Researcher Edinburgh Napier University