This project brings people together from health and social care, voluntary organisations (as well as patients, their carers and the public), from across Suffolk and North East Essex Integrated Care System, Suffolk County Council and Waveney into a consortium.
This Palliative and End of Life Care Consortium will take part in a series of workshops, supported by academics from the Universities of Suffolk and East Anglia (UEA), with the goal of submitting a series of co-developed palliative and end of life care research funding bids.
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.
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.
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 three 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, East Anglia and Essex.
This programme will bring together a PEoLC Consortium whose members are drawn from organisations across academia, primary, secondary and tertiary health care, social care and third sector support as well as full involvement from ‘experts-by experience’ (patients, users and carers). Through delivering a structured programme of work, our overarching aim is ‘To establish, implement and sustain partnerships that will build research capacity and capability in PEoLC, resulting in an increase of research activity’.
The following objectives will address this aim:
- Co-produce, through the Consortium, a structured programme of work that can identify up to six regionally and locally focused PEoLC research questions.
- Understand the steps necessary to deliver quality research including, e.g., access to and/ or membership of research networks (e.g., Research Development Service and Clinical Trial Units), available funding streams, use of prior protocols and early literature searching.
- Explore various theoretical frameworks and research methods necessary to develop a research proposal and the rationale underpinning their application.
- Build knowledge around experimental and quasi-experimental approaches to research.
- Develop outline research proposals, matched to the PEoLC questions, building on existing international and UK evidence in PEoLC that will ensure transferability of findings.
- Co-production of a full research proposal to respond to the NIHR call in November 2022.
- Ensure sustainability of research learning and knowledge through the identification and implementation of on-going network and collaborative support
We will be bringing around 30 people together in eight workshops during 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 (late 2022) to get our research proposals ready to submit.
We will deliver at least one research proposal to this NIHR funding stream but 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.
Who is involved
Principal Investigator: Professor Karen Windle (University of Suffolk)
Researchers and Institutions:
Windle K (University of Suffolk), Ski C (University of Suffolk), Chushen-Brewster N (University of Suffolk), Hamond M (University of East Anglia), Shenton M (Suffolk & NE Essex ICS), Farquhar M (University of East Anglia), Peryer G (University of East Anglia), Green G (University of Essex)