Identifying the best ways of providing care and support to terminally ill people, their families and carers outside of ‘working hours’ has been rated the top priority for the future of palliative and end of life care research, according to a new report launched today.
The results from an extensive 18-month public consultation were revealed at the Palliative and End of Life Care Research Summit,hosted by Public Health England’s National End of Life Care Intelligence Network, and, NHS England.
Over 1400 people in the last years of life, current and former carers, and health and social care professionals participated in the Palliative and end of life care Priority Setting Partnership, initiated by Marie Curie and independently overseen by the James Lind Alliance, a non-profit making initiative, hosted by the National Institute for Health Research, to determine the most important unanswered questions (i.e. gaps in existing evidence) that could improve overall care and experiences.
Top of the list, narrowed down from a ‘long list’ of 83 questions, was identifying the best ways of providing care outside of working hours to avoid crises and help patients to stay in their place of choice. This includes symptom management, counselling and advice, GP visits and 24-hour support, for patients, carers and families.
This was followed in second place by questioning how access to palliative care services can be improved for everyone regardless of where they are in the UK, and what are the benefits of Advance Care Planning? – in third place.
Also outlined in the top ten research priorities are what information and training do carers and families need to provide the best care for their loved one who is dying, including training on giving medicines at home; delivering the right care for patients with non-cancer diseases; ensuring all staff are adequately trained, no matter where the care is being delivered; continuity of care for patients at the end of life; and assessing and treating pain and discomfort in people at the end of life with communication and/or cognitive difficulties, such as dementia, motor neurone disease (MND) and Parkinson’s disease.
Dr Bill Noble, Medical Director at Marie Curie, said: “Patients and carers have never before been consulted in such a comprehensive and systematic way about their priorities. We are grateful to them and front-line professionals for the openness with which they shared their views and experiences.
“With so little resource going into this area of research, we hope that the results of this ground-breaking work will help focus researchers and funding bodies on the questions about palliative and end of life care that concerns patients, carers and clinicians the most, as well as demonstrates the need for increased funding in this under-researched area.”
Joanna Eley, Patient Representative, National Cancer Research Institute (NCRI) Consumer Hub, said: “We know that the findings of this considered research project, to which so many have contributed, will be welcomed by patients in the last stages of life and their carers. The end of life is something that concerns absolutely everyone and will never go away.
“We hope that the clear and simple presentation of the results of this work will help give this field the attention it needs and deserves. All researchers and funders need to read this report.”
Professor Julia Verne, lead for end of life care at Public Health England welcomed the priorities identified by the Palliative and end of life care Priority Setting Partnership and said: “It is important to hear directly from the people affected about what matters most to them and this will help us to prioritise our future research. I am delighted that these priorities will be launched at Public Health England and NHS England’s Palliative and End of Life Care Research Summit where researchers, research funders and the public will come together to make sure that we undertake research that really makes a difference to people in the final phase of life and their carers.”
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