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Patients who are nearing end of life to have a say.

A NEW partnership has been formed to find out what palliative and end-of-life care research is important to people who are likely to be within the last years of life.

Initiated by Marie Curie Cancer Care, a large number of organisations have come together to form the palliative and end-of-life care priority setting partnership.

This means that for the first time, people directly affected will get the chance to have their say in setting research priorities for palliative and end-of-life care.

The partnership particularly wants to hear from people who are likely to be in the last years of life, current and bereaved carers, and frontline social and healthcare professionals.

The aim of the partnership is to ensure that future research brings the greatest possible benefit to people at the end of life, and their carers and families, by identifying what questions are of the greatest importance to them.

So far, more than 20 organisations have pledged their support for the partnership. Simon Jones from Marie Curie Cancer Care said: "The Welsh Government's end-of -life care delivery plan highlighted the importance of research in the development of high quality, person-centred end-of-life care. Marie Curie supports a research centre in Wales which is based in the University Hospital of Wales.

"It is essential to identify clear research priorities, for ourselves and other funding bodies, so we can support the most important research and make the most out of the money we spend."

Professor Jonathan Bisson, Head of the National Institute for Social Care and Health Research (NISCHR) at the Welsh Government, added: "The plan set out clear ways for the voice of the individual, supported by those closer to them, to be heard and respected at the centre of the services they need and also noted that it is crucial to support innovative research to underpin the development of fit-for-purpose, high quality services.

"That is why we are delighted to be supporting the palliative and end-of-life care priority setting partnership, which will work with people in the last years of their lives, their family, and health professionals to identify important, and currently unanswered, research questions in the field of end of life care."
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Title Annotation:Features
Publication:Western Mail (Cardiff, Wales)
Date:Oct 17, 2013
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