Title: 21/54 Palliative and End of Life Care (PEoLC): Implementing research partnerships, networks, and collaborations across Suffolk and North-East Essex ICS, Suffolk County Council, and Waveney
Funder: Department of Health and Social Care

Abstract: Many of us don’t really like to think about our deaths, but if we’re asked, most of us would like to die at home, without pain, surrounded by family and friends, and well supported by a range of health and social care staff. For most of us, such a ‘good death’ won’t be a reality. _x000D_ _x000D_ We know that of the half a million people who die each year in England, almost half die in hospitals. We also know that while there is excellent support for end-of-life care there isn’t enough capacity for everyone. Older people who are living with several conditions (e.g., heart or kidney failure) aren’t often supported and, those living with dementia are particularly poorly served. In most places across England, the end-of-life service is fragmented and, often those who want to die at home have little support to manage their pain, leading to many hospital admissions._x000D_ _x000D_ Research has helped us to understand what people need as they move toward end-of-life, but we still don’t know enough to ensure everybody can die where they want. One organisation that set up a consultation exercise to ask health staff and the public what they thought were the top priorities, identified 83 unanswered research questions. Also, research hasn’t always been carried out in the right areas, leading to those areas with high numbers of people with end-of-life needs not being included in research projects. _x000D_ _x000D_ So that we can respond to these research gaps as well as build research expertise in an area that has been historically ignored by end-of-life research, submitting up to six research studies to organisations that can fund these, we will be carrying out eight workshops alongside a group of people across Suffolk and North East Essex Integrated Care System, Suffolk County Council and Waveney. Members of this group are drawn from health and social care, voluntary organisations as well as patients their carers and the public. Patients and carers will be paid travel costs, reimbursed for their time, as well as provided with (if necessary) replacement care costs. This group, or Consortium, will be supported by academics from the Universities of Suffolk and East Anglia. _x000D_ _x000D_ We will be bringing all these people together (around 60 people) in the eight workshops between February 2022 and October 2022. We will use the first workshop for patients, carers and the public so that they can understand the task and, be supported to fully contribute. In the next six, held monthly across two and half hours, we will think about which research questions are needing to be answered, will listen to presentations from experts that will help us identify how we can answer those questions and, use smaller ‘break-out’ groups to plan our research studies. Information to support these discussions will be provided between each workshop. We will then bring all of these discussions together in two further day-long workshops (in September and October 2022) to get our research proposals ready to submit._x000D_ _x000D_ It is important that this work is sustained past the funding timeframe for this proposal. While we will be delivering at least one research proposal to this funding stream, we will also set up further working groups over the period of January 2023 – March 2024 to deliver up to five further research study proposals. We will also be writing and publishing a paper about our experiences, so that other areas can develop their research expertise and understanding in the same way.

Lay abstract: Around half a million individuals die each year in England, a figure estimated to rise by 20% over the next 20 years. The last decades have seen increased demand for those nearing end-of-life to experience a ‘good death’, receiving timely care focused on communication, informed care choice, pain and symptom-relief, and preferred place of death. While policy guidance has been put in place to deliver this care, a ‘good death’ has yet to be achieved by most Palliative or End of Life Care (PEoLC) patients. Less than a quarter of children and adults are able die at home, PEoLC is rarely available to those older patients living with multiple morbidities, and those living with dementia are particularly poorly served._x000D_ _x000D_ Research has begun the identification of what works in PEoLC, although there are gaps in the evidence base. A review of National Institute of Health Research funded PEoLC studies, identified that most had yet to propose solutions that recognised the complexities of the health and care environment, while a consultation exercise carried out by the James Lind Alliance detailed 83 unanswered research questions. Further improvements in research methods are necessary (i.e., inclusion of experimental/ cost-effectiveness studies), as well as delivery of projects that involve all relevant PEoLC organisations, patients, users, and carers. In addition, research has not always been equitably delivered across geographical locations, unavailable to some areas with high prevalence of PEoLC needs._x000D_ _x000D_ To respond to these gaps, developing research capability and capacity in an area historically undeserved by PEoLC research, we have developed a structured programme of work alongside a multidisciplinary Consortium across Suffolk and North East Essex Integrated Care System, Suffolk County Council and Waveney. This locality serves a population of around one million, encompasses rural and costal areas, diverse urban populations as well as deprived communities. The challenges facing PEoLC in this area mirror those nationally. Around half of PEoLC patients die in hospital, while those in the most deprived areas are least likely to be supported to die at home or have their preferences as to end-of-life care recorded. Our Consortium draws on expertise from across primary, secondary and hospice care, social and third sector care and ‘experts-by-experience’. Purposive sampling (using voter registration), and the provision of travel, attendance and replacement care costs will ensure equitable inclusion of ‘seldom-heard’ participants. _x000D_ _x000D_ We will deliver one Introductory Workshop, five Deliberative Workshops, and one Consensus and Writing Workshop across 11 months (from January – November 2022), achieving our aim of establishing, implementing and sustaining partnerships that will build research capacity and capability across PEoLC, as well as delivering up to six outline research studies. We have selected the method of Deliberative Workshops to ensure that all participants are supported to deliver informed decisions on topics that may be unfamiliar._x000D_ _x000D_ Outcomes from this programme of work will be a co-produced research study submitted to the Stage 2 call of NIHR. We will also identify up to five additional research studies that, through small working groups, will be further developed between January 2023 and March 2024. In addition, a paper will be submitted on the process, progress, facilitators and barriers to co-producing and building research expertise.

Research activity codes: 7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE