By Dr Alice Malpass, Senior Research Fellow, and Lucy Selman, Professor of Palliative and End of Life Care, Centre for Academic Primary Care, University of Bristol
“Death comes equally to us all, and makes us all equal when it comes.” – John Donne
While death is inevitable for everyone, the experience of dying and receiving support through bereavement varies greatly in the UK. Sadly, older people, ethnic minorities, and those living in poverty often face significant barriers to accessing end-of-life care and bereavement support. These challenges include a lack of awareness of available services, discomfort asking for help, discrimination, and a shortage of services tailored to the needs of diverse communities. People living with disadvantage are also more likely to face isolation and receive poorer-quality care during serious illness and bereavement. These disparities were even more pronounced during the COVID-19 pandemic.
Can integration improve equity in end-of-life care?
The 2022 Health and Care Act requires Integrated Care Systems (ICSs), which have been around in some form since 2016, to focus on reducing health inequalities through cross-sector collaboration. The Act also makes it a legal responsibility for ICSs to ensure adequate palliative and end-of-life care, as well as bereavement support. It emphasises working with local community assets, such as charities and creative organisations.
While this push for integration has been welcomed, some critics argue that it might just shift the responsibility for tackling health inequities onto communities, especially in the context of austerity measures. Collaboration across sectors is important, but research shows that such partnerships can be fraught with challenges. Research on partnership approaches to reducing health inequities warn ‘partnership is a risky territory’ marked by rivalry and suspicion instead of cooperation.
Our research: examining collaboration across sectors
In the South West of England, the Healthier Together ICS formed in 2022 to strengthen local partnerships. Our research aimed to understand how different sectors (health, social care, creative and voluntary, community and social enterprise (VCSE) sectors) were collaborating to integrate services in the coastal town of Weston-super-Mare, focusing specifically on the role of community assets.
We conducted a three-phase study that included:
- three community network meetings, attended by 35 to 55 stakeholders across sectors (health, social care, voluntary, creative)
- a participatory digital mapping workshop with stakeholders from a range of sectors, using the Understory digital mapping tool
- and semi-structured interviews with 15 stakeholders from different sectors (health, social care, voluntary, creative) that were analysed using inductive thematic analysis.
Challenges of collaboration across sectors
Our study showed that building relationships between organisations across sectors can be challenging to establish due to:
- a lack of shared vision, insufficient opportunities and limited resources for cross-sector interaction
- smaller partners lacking the resources to effectively interact with larger, better-funded organisations
- some partnerships feeling extractive, rather than genuinely collaborative.
What makes collaboration work?
Despite these challenges, our study uncovered some key strategies for successful integration:
- creating time and opportunities for understanding shared goals and visions
- having open, transparent conversations about where connections can be made across sectors
- reducing staff turnover so longer-term relationships can grow, avoiding needing to start from scratch with each new collaborative initiative
- encouraging mobility across sectors, such as extended secondments to facilitate the development of a shared language
- addressing power imbalances during cross-sector meetings.
What does real integration look like?
Stakeholders who attended our meetings warned that a multi-sector approach can work but also has risks. A major risk is that, with over a decade of government austerity measures and chronic cuts to services, alongside a perceived political drive to shift social and healthcare provision away from the state to the VCSE sector, many community assets have or will become underfunded and unsustainable.
Stakeholders felt that with so many resources being pulled from the voluntary sector, central government needed to be called to account. Stakeholders also noted that local authorities were quick to take credit for VCSE organisations’ achievements. That tensions such as this were voiced during our community network meetings indicates the levels of trust in the room on the day, but also some of the potential limitations and challenges of community asset approaches to reducing health inequities.
For integration to truly succeed, a cultural shift is needed. Successful collaboration involves power-sharing, building trust, and ensuring that smaller stakeholders feel their involvement is meaningful. As one stakeholder put it, “We’ve always been invited to these conversations, but never really listened to … this feels real.”
Ultimately, meaningful integration in end-of-life and bereavement care requires more than just policy changes — it requires a commitment to genuine collaboration and addressing systemic inequalities. We need a public health approach which goes beyond naïve calls for cross-sector collaboration to engender meaningful change.
For more about our research, visit our study website and read our paper:
From trusted intruder to real collaborator: mapping the ecosystem of stakeholders and community assets in a coastal region in England, with a focus on end-of-life care and bereavement support.