New report highlights the case for improved patient experience data in Wales

A new report published today in Wales by Marie Curie Cancer Care highlights the need for major improvements in the way we currently gather experience feedback from terminally ill people and their families and carers in Wales.

Marie Curie’s ‘Listening to Dying People in Wales’ report reveals the limitations of the current patient experience survey approach and questions the usability of the data it generates, its structure, response rates and distribution. The report suggests that the methods for generating patient experience feedback currently employed in Wales cannot be used to support meaningful service planning on the scale that is needed.

Simon Jones, Head of Policy and Public Affairs for Marie Curie in Wales, said: “Learning from people’s experience of the care they get is vital to ensuring that services are good and meeting people’s needs. Nowhere is this more important than for care at the end of people’s lives. Marie Curie believes that in Wales we need to undertake a bereavement survey which will provide really important feedback on care at the end of life. It will tell us things about care in different settings, whether care was well co-ordinated, whether there had been an opportunity to talk about where people wanted to die and many other things.”

Marie Curie calls for the introduction of a VOICES (Views of Informal Carers- Evaluation of Services) type survey in Wales which has been undertaken twice already in England. According to the charity which provides care to people with any terminal illness, this type of survey will give us a much better understanding of how people felt about their end of life care and create a strong evidence base upon which services can be developed and improved. 

Key recommendations of the report include:
• That an annual bereavement survey is introduced in Wales.
• That significant improvements to real-time feedback measures are undertaken.
• That, in the future, a ‘snapshot’ survey should be carried out of people on a palliative care register.
• That there should be clearer guidance on the use of concerns data (such as those raised through letters of complaint) by Health Boards.

For more information visit www.mariecurie.org.uk

- ENDS -