Putting patients, carers and clinicians at the heart of palliative and end of life care research
Press release published
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A ground breaking partnership has been launched today 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, their families, and the professionals who work with them. Initiated by Marie Curie, a large number of organisations have come together to form “the Palliative and end of life care Priority Setting Partnership” (PeolcPSP) with the James Lind Alliance. 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. We are particularly seeking to hear from people who are likely to be in the last years of life, current and bereaved carers, their families, and frontline social and healthcare professionals. Palliative and end of life care is an under-researched area and requires greater attention and focus. 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. Co-funding partners are:
Dr Bill Noble, Marie Curie Medical Director and past president of the Association for Palliative Medicine of Great Britain and Ireland, said: “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. “For research to make a fundamental difference, it is vital funders and researchers focus on what matters most to people with terminal illnesses, their families, carers, and health and social care professionals.” Professor Dame Sally C. Davies, Chief Medical Officer and Chief Scientific Adviser at the Department of Health, said: “I am pleased that the NIHR is a partner of this important Priority Setting Partnership – the first PSP to be part-funded by the NIHR. The James Lind Alliance PSP process is a tried and tested way of bringing together patients, carers and clinicians to prioritise treatment uncertainties, and is at the heart of the NIHR.” Dr Belinda Cupid, Head of Research at the Motor Neurone Disease Association, said: “We are delighted to be a partner in this initiative as we know that specialist palliative and end of life care are subjects that are of high importance to those living with MND, and everyone who cares for them. “This project will be invaluable to help guide our research priorities for the future, as we strive towards a world free from MND.” In addition, there are several other organisations represented on the Steering Group, which will oversee the partnership: Association for Palliative Medicine of Great Britain and Ireland, Help the Hospices, National Bereavement Alliance and Childhood Bereavement Network, National Cancer Research Institute (NCRI) Consumer Hub, National Council for Palliative Care, Royal College of Nursing, Scottish Partnership for Palliative Care and St Christopher’s Hospice To date, over 20 organisations – who can reach people with palliative and end of life care needs, life-limiting illnesses, families, carers, doctors, nurses and social care professionals – have pledged their support. For more information or to get involved, email us at PeolcPSP@mariecurie.org.uk or telephone us on 020 7091 4153. -ENDS- |
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Tracy Barrett
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- Out of hours: 0845 073 8699
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Updated
Notes to editor
Background to the Palliative and end of life care Priority Setting Partnership
The James Lind Alliance (JLA) is a project which is funded by the National Institute of Health Research (NIHR). Its aim is to provide an infrastructure and process to help patients and clinicians work together to agree which are the most important treatment uncertainties affecting their particular interest, in order to influence the prioritisation of future research in that area. The JLA defines an uncertainty as a “known unknown” – in this case relating to the effects of treatment.
The Palliative and end of life care Priority Setting Partnership (PeolcPSP) was initiated by Marie Curie with the intention to address the dearth of evidence in palliative and end of life care and direct scarce resources at the issues most important to the ‘end users’ of research, i.e. patients, current and bereaved carers, clinicians and health and social care practitioners in general. Marie Curie committed the initial funding and is joined by a number of other funding bodies in the area (NIHR, CSO, NISCHR, the MND Association, Macmillan Cancer Support, Economic and Social Research Council, Medical Research Council and Cancer Research UK) who also want to see improvements in evidence-based care and treatments at the end of life and who committed to co-funding the partnership project. The results of the partnership will help direct future research funding by all the partners and beyond, for the benefit of patients, carers and families.
Marie Curie is the UK’s leading end of life care charity. The charity provides free nursing care to people with a terminal illness, either in their own home or one of the charity’s nine hospices. The charity is also a leader in research into the best ways of caring for people with a terminal illness. In addition to this the charity designs and advises on end of life services and works to ensure that the best possible care and patient choice is at the heart of commissioning end of life care across the UK. All Marie Curie services are completely free of charge. Around 70% of the charity’s income comes from donations with the balance of funds coming from the NHS.
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National Institute for Health Research (NIHR) is funded by the Department of Health to improve the health and wealth of the nation through research. Since its establishment in April 2006, the NIHR has transformed research in the NHS. It has increased the volume of applied health research for the benefit of patients and the public, driven faster translation of basic science discoveries into tangible benefits for patients and the economy, and developed and supported the people who conduct and contribute to applied health research. The NIHR plays a key role in the Government’s strategy for economic growth, attracting investment by the life-sciences industries through its world-class infrastructure for health research. Together, the NIHR people, programmes, centres of excellence and systems represent the most integrated health research system in the world. For further information, visit the NIHR website (www.nihr.ac.uk).
The Motor Neurone Disease (MND) Association is the only national organisation in England, Wales and Northern Ireland dedicated to the support of people with MND and those who care for them. It funds and promotes research to understand what causes MND, how to diagnose it and, most importantly, how to effectively treat it so that it no longer devastates lives.
MND is a rapidly progressive and fatal disease. It can affect any adult at any time and attacks the motor neurones that send messages from the brain to the muscles, leaving people unable to walk, talk or feed themselves. The cause of the disease is unknown and there is no known cure. Around 5,000 people in the UK have MND at any one time, with half of people with the disease dying within 14 months of diagnosis. It kills five people every day in the UK. For more information visit www.mndassociation.org