The Compassionate Communities project seeks to support community development in line with NHS England’s Palliative and End of Life Care Ambition framework for local action that was updated and relaunched in May 2021. More specifically, the project addresses Ambition 6: ‘Each Community is Prepared to Help.’
The pioneer of the Compassionate Communities approaches Prof Allan Kellehear identified the 95% rule. A person living at home with a life-limiting illness may come into contact with statutory services up to 5% of any day. He asks the question, ‘as a community, what can we do to occupy that 95%?’
In western societies, death has increasingly become medicalised and crucial knowledge and skills at a community level have steadily declined. Compassionate Communities supports the idea of spreading a concept known as death literacy – which is practical know-how about what to do and where to find support in a palliative or end of life care context.
The project seeks to evaluate a method to mobilise community assets, harness and connect inherent skills and resources that already exist at a neighbourhood level, to improve experiences for people experiencing life-limiting illness, loss, or grief.
We aim to:
- Convene and embed a series of citizen-led communities of practice to act as community connectors.
- Use the Compassionate Communities civic charter as a framework to develop a local public health approach to palliative and end of life care that enhances non-clinical community support for thos life with life linting illness, loss or grief.
- Work with community assets such as hospices, schools, care homes, local businesses, and community groups to establish what support is available outside of statutory services.
- Evaluate the contribution and impact citizen-led activities can have as we move to becomes Integrated Care Systems.
- The project is working with the Population in Focus areas of Great Yarmouth and Waveney. Four citizen-led communities of practice have been set up following advice from the ARC implementation theme.
- Three hospices in the East collaborated with ARC EoE to present a program of events for National Dying Matters week: https://www.compassionatecommunitieseast.com/whats-on
- The project lead supported a GP in the East to submit an award to the Royal Society for Public Health for this intervention that aligns with Ambition six where community volunteers were trained to act as ‘compassionate companions’. They receive referrals from the GP practice. A video of the project is here: https://www.youtube.com/watch?v=PCGAwPCVQiE&t=317s
- Using an asset based community development approach we will design a visual ‘Treasure Map’ (inspired by the work of Angela Fell) of community assets that local citizens can contact, volunteer, and support to further develop social cohesion at a neighbourhood level.
The work has distinct relevance and application for Integrated Care Systems and their role in implementing NHS England’s Palliative and End of Life Care Ambitions Framework.
Further, it will support the NHS Strategic Clinical Network for Palliative and End of Life Care that launched in May 2021. I am a contact person for compassionate communities.
This work applies to Ambition Six: ’Each Community is Prepared to Help’.
The mechanism of impact is embedding citizen-led activities that interface with statutory services.
The project will support the key building blocks within Ambition 6 - see details at the end of this summary.
Papers and resources associated with this study
- Perspectives article for BJGP (in preparation)
- A qualitative methods article describing innovations in capturing evidence and impact from citizen-led activities (in preparation).
Blake, J., Bayliss, A., Callow, B., Futter, G., Harikrishnan, N., Peryer, G.
Using a storytelling intervention in schools to explore death, dying, and loss
(2020) Journal of Public Mental Health, 19 (3), pp. 203-211.
- Apply for an NIHR Knowledge Mobilisation Advanced Fellowship to share this work with other areas across the East of England
- I have joined this think tank and I will write a feature for them about the work being carried out along the East coast.
Four citizen-led communities of practice have been established – they have all met together to plan some discrete projects that align with the civic charter.
ARC accredited outputs:
Peryer, G., Barnes, S., Farquhar, M.
Supportive and palliative care for people with respiratory problems and preexisting serious mental illness
(2020) Current opinion in supportive and palliative care, 14 (3), pp. 190-196.
Hurwitz, N., Radakovic, R., Boyce, E., Peryer, G. Prevalence of pain in amyotrophic lateral sclerosis: a systematic review and meta-analysis.
2021. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration