Patient and family experience

Gaining patient and family feedback about their experiences is important for demonstrating the quality of hospice services.

The Care Quality Commission expects registered providers to show how they actively seek the views of users of hospice services – to inform and further develop the quality of care and treatment delivered, through for example: surveys, discussions, encouraging suggestions, meetings and so on. 

We have put together details of some useful resources for hospice care providers looking to improve how they gather patient, family and carer feedback on their experiences of hospice care.

Real time reporting project – Lincolnshire community

The Listening differently to users report, published by Hospice UK, Marie Curie and NHS Improving Quality, describes a project which collected feedback from patients, their families and carers about their experience of the care they received in a variety of settings – at hospital, in their own home, care homes and hospices. Importantly, this feedback was collected in real time allowing the care teams to act immediately and/or to make long-term plans where necessary.

This approach offers some valuable insights into the opportunities and challenges that exist prior to a wider roll-out of such a system in the future. The report also identifies some challenges to be addressed before any such wider roll out. Crucially, this report confirmed that people close to the end of their lives are willing and keen to discuss their experience of care.

‘iwantgreatcare’ – South West Hospices

Hospices in Wales have used iwantgreatcare for gathering feedback about the quality of their care for a number of years. Recently, eight more hospices in the south west region of England have collaborated to work with iwantgreatcare, developing a hospice users survey, which is available as a card and is accessible online. This survey also includes the friends and family (recommend) test. The service users’ feedback is available publicly on the iwantgreatcare website. 

Hospice patient survey

Hospice UK has been listening to the views of hospice patients for many years in order to help improve the care they receive.

Between 2004 and 2013, we worked with the Centre for Health Services Studies at the University of Kent to carry out a hospice patient survey. The survey consisted of two anonymous questionnaires: one for inpatient and one for day care services. The target audience was people with palliative care needs who were discharged from either service, and those who used the day care facilities for a period of more than two months. The surveys were conducted over a six to seven month period.

What does hospice care mean to you?