Understanding the quality of life and needs of people with either multiple sclerosis or Parkinson’s disease towards end of life
Funding
NHS Bristol, North Somerset and South Gloucestershire ICB Research Capability Funding.
What is the problem?
The publication of the recently updated NHS England Ambitions for Palliative and End of Life Care Framework specifies high quality palliative and end of life care should be available to all. Despite this, reports highlight inequalities of access to palliative and end of life care services for those with non-cancer diagnoses. One group of people this affects is people with Parkinson’s.
Parkinson’s is the fastest growing neurological condition, affecting around 153,000 people in the UK. It is progressive, irreversible, and characterised by increasing disability, reduced cognitive ability and greater dependence over time. In 2020, it was the reported cause of death for over 13,600 people in England and Wales, however we know that people with Parkinson’s are more likely to die in hospital and are half as likely to die in a hospice setting compared with the general population. People with Parkinson’s and their caregivers report a lack of knowledge about end of life services and are concerned about the support available.
We want to better understand the experiences and needs of people with Parkinson’s in order to identify how to provide them with better support at the end of their lives.
What is the aim of the research?
Directly aligned with the ICBs stated strategic commitments to support older people towards end of life and to tackle inequalities, the knowledge we will gain will help identify how to improve support for people with Parkinson’s at end of life. Our objectives are to:
- achieve a better understanding of the needs of people with Parkinson’s at end of life.
- describe how end of life care is currently provided for people with Parkinson’s and what “ideal” end of life care should look like
- identify the barriers and facilitators to providing care to these populations in current service models and capture suggestions for improvement
- co-produce recommendations aimed at improving end of life care services for people with Parkinson’s and reducing inequalities of access to these services.
How will this be achieved?
RCF will be used to develop, write and submit a National Institute for Health and Care Research (NIHR) Research for Patient Benefit funding application.
RCF activities will include:
1) completion of a review of academic literature to identify evidence about end of life care for people with Parkinson’s.
2) engagement with people with Parkinson’s, and their families, to understand their perspectives and inform our future work.
3) bringing together a strong team of relevant academics and clinicians to ensure our future funding application is robust and feasible.
4) writing and submitting an NIHR grant application.
Initial work to review the literature has already informed the current RCF application. We have also engaged with representatives of our local Parkinson’s support group, who have provided feedback on our planned research and input to the writing of this application. We will also conduct workshops with patients and the public to discuss findings from our literature review and capture opinions on key areas of need. We will identify public contributors who are willing to be paid co-applicants for our NIHR application alongside academic and clinical colleagues with expertise in Parkinson’s and/or end of life care.
Who is leading the research?
Dr Alison Llewellyn, Associate Professor of Clinical Research, Centre for Health and Clinical Research, School of Health and Social Wellbeing, University of the West of England (Bristol).
Further information
For more information or to get involved with this project, please email bnssg.research@nhs.net