To respond to the growing need for compassionate care and support for end of life and bereavement, ARC East of England researchers are exploring ways to develop Compassionate Communities. This public health approach is providing practical resources and emotional support to help people and families cope with serious illness and dying whilst creating greater community cohesion.
Deaths are increasing every year, and it is anticipated that by 2040 there will be more than 700,000 deaths annually in England and Wales. Each death affects multiple people and families, resulting in millions of bereaved people. At this scale, care and support for those dealing with dying and loss goes beyond what health and care systems can provide and everyone in a community can contribute in a compassionate way to help people experiencing bereavement.
Working with the ARC EoE Palliative and End of Life Care Theme, Dr Guy Peryer has been researching how Compassionate Communities have formed in the region and the impact they are having. Guy shared:
“In 2023, my father and father-in-law died within months of each other. I knew about approaches to end-of-life care in theory, and have supported people as an end-of-life doula, but I found it’s not until you navigate the system on behalf of the people you love that you realise how ill-prepared we are.”
Dr Guy Peryer, ARC EoE Palliative and End of Life Care Theme researcher
The Compassionate Communities movement has formed to take a public health approach to serious illness, dying, death and bereavement and foster a shared responsibility for care. It serves to address the quintuple aim described by the Institute of Healthcare Improvement (IHI) in Boston. In summary, this focuses on better outcomes, better use of resources, better experience of receiving care, better experience of delivering care, and reducing current inequalities.
Compassionate Communities follow strategic and systematic steps to respond to each of these aims, using a strengths-based approach and civic action to mobilise community resources and connect people to grow supportive relationships and partnerships between social groups, voluntary and health and social care organisations. The concept emerged from the work of sociologist Dr Allan Kellehear, who first introduced the approach in 2005 as part of a broader palliative healthcare framework which has evolved to guide projects around the world integrating social and practical support for people facing end-of-life challenges.
In the UK, the Compassionate Communities movement aligns with NHS England's Ambitions for Palliative and End of Life Care Framework (2021-2026), which emphasises community engagement. It calls for maximising comfort and wellbeing through community support networks, which are key to delivering person-centred care outside hospital settings.
In the East of England, various Compassionate Community initiatives have developed through hospices, charities and local authority partnerships, spreading from Norfolk and Waveney to health and care systems in Suffolk, Essex, Hertfordshire and Bedfordshire. Guy helped to host the Compassionate Communities East hub to share reports and resources from Norfolk and Waveney, spread public awareness, increase practical support, and enable more people to prepare and make choices for end-of-life care that align with their preferences, wishes, values and beliefs.
ARC East of England has funded meetings and connected Guy with communities and events to share good practice, collaborating on evaluation of the Compassionate Communities approach and disseminating results, most recently from a Death Literacy survey in 2024 to understand awareness and preparedness for dying and bereavement.
Death Literacy is defined as practical know-how needed to navigate end-of-life and death care options with four knowledge domains: practical, factual, experiential and community-based knowledge. 1254 people from the East of England completed the survey and the average Death Literacy score was 5.4/10. Both factual knowledge and community-based knowledge were in most need of support and the survey results can help integrated care boards direct limited resources.
“The development and evolution of Compassionate Communities has been fundamentally shaped by participatory approaches including focus groups and interviews with community members, unpaid family carers, patients, and families capturing lived experiences, with storytelling and narrative approaches documenting community impact."
Dr Guy Peryer, ARC EoE Palliative and End of Life Care Theme researcher
Community advisory groups, peer support networks and co-production approaches guide their continued development. The feedback shared by participants and community members highlights their impact:
"It has made me feel connected to the wider community…..It is great to have a forum to share our work and to learn from each other."
"I think this has made local people so much more aware of what is available. I feel this has definitely brought more people together in our community."
"It makes me feel purposeful and this means a lot to me to be able to support the community to not be shy about talking about death"
"I have learnt magical things can happen when people get together. I have discovered many organisations who are gently and lovingly supporting people experiencing difficult times."
"I will be braver to discuss death with a dying friend or relative, to try and support them holistically."
Initiatives in Compassionate Communities are working alongside health and social care services to enhance support with hospices training community volunteers. The Compassionate Companions service in Suffolk trains volunteers to provide, community-based, non-medical support for people and their loved-ones experiencing life-limiting conditions, including severe frailty and dementia. GPs can refer patients to community connectors and social prescribing makes links with community support networks. Hospital discharge planning involves community support and there is joint care planning between professionals and community supporters.
These approaches reduce pressure on NHS services and can help to identify support needs earlier, improving communication and continuity of care with sustainable support networks and efficient use of resources. Compassionate Companions have trained 61 volunteers to support 279 patients, preventing over £8000 in hospital admissions.
Key challenges facing Compassionate Communities include addressing the stigma around death and dying with proactive community engagement, targeted outreach with diverse community groups and leaders and inclusive events to normalise end-of-life conversations for everyone. Communities need to build strategic partnerships to work with limited health and social care resources and maintain clear communication with formal service providers to integrate compassionate care seamlessly. Compassionate Communities need alternative evaluation frameworks to systematically capture social and emotional impacts, collecting stories and testimonials alongside quantitative data on social capital and health outcomes to present a full picture of their value.
Guy has presented Compassionate Communities approaches and findings at regional, national and international workshops and conferences including the Public Health Palliative Care International (PHPCI) Conference and European Association for Palliative Care (EAPC) Congress. He has also supported integrated care systems (ICS) to include Compassionate Communities in strategic plans and secure co-funding for community programmes, and worked with local authority public health teams to support and share their intiiatives.
There are a range of helpful resources and useful links to support Compassionate Communities and increase public awareness:
- Public Health Palliative Care International (PHPCI): PHPCI offers resources, including the Compassionate Cities Charter and various guides, to support community-led end-of-life care efforts.
- Compassionate Communities talks by PHPCI on YouTube provide both inspiration and practical advice from experts sharing insights and experiences.
- Ambitions for Palliative and End of Life Care: This national framework offers guidance for local communities and stakeholders on supporting palliative care and includes community-led approaches.
- Dying Matters Campaign: An initiative of Hospice UK, Dying Matters raises awareness and provides tools for end-of-life discussions within communities.
