What are we trying to do?
This study follows on from the ‘Developing benchmark standards to assess and support carers at end-of-life’ study, which was the first work package of the three stage National Stakeholder Consultation and Survey project, funded by Hospice UK and CLAHRC-GM. Work package 1 produced ten key recommendations for national standards in approaching the identification, assessment and support of those caring for patients at end-of-life in a non-professional capacity (often a friend of family member of the patient). The present study was established to measure the current provision in the UK for carers of adult patients in relation to these standards.
Why is this important?
Informal caregivers provide vital support for patients during the end-of-life stage. Their role sits in between that of the patient and health and social care professionals. Caregiving can be demanding and stressful, with those caring for terminally ill patients also facing bereavement. NHS England recognises the role of carers as both co-worker (providing support to the patient) and client (carers have their own needs, some of which can be addressed by healthcare professionals). Addressing carers’ needs as clients can in turn strengthen their capacity to perform their caring role, and help preserve their own long-term health, wellbeing and ability to cope with bereavement. At present, we do not know the scope of what is currently available for carers of patients accessing hospice services. Assessing the gap between current provision and the benchmark standards should assist the development of common standards and practice for good quality carer assessment and support.
How are we going to do it?
We have created a survey to be completed by organisations within Hospice UK’s membership that provide end-of-life care services for adults. The survey focuses on several key provisions offered by hospices – community specialist palliative care, inpatient units, day care services, hospice at home, and family and bereavement support. The survey has been designed to measure the current status of carer assessment and support, in order to assess strengths and weaknesses in what is available against the benchmark standards.
Who are we working with?
For more information please contact Michael Spence (Programme Manager)