South west London bereavement services and support: gaps workshops report

Introduction and background

Healthwatch Kingston (HWK) and Kingston Voluntary Action (KVA) were commissioned by NHS South West London to undertake a community engagement pilot project in 2022, exploring people’s experiences of bereavement and support services. The report from this pilot identified gaps, leading to the commissioning of a Phase 2 Gaps Initiative aimed at engaging groups not included in the initial pilot.

The South West London Bereavement Services and Support Community Engagement initiative explored key challenges and gaps in bereavement services and support across diverse communities. Our Bereavement Services and Support in Kingston - Community Engagement Report (2022) is summarised in Appendix B.

In addition, during 2023-24, Healthwatch Kingston was separately funded by the Royal Borough of Kingston upon Thames, Community Resilience Fund, to create a film which introduced young people to bereavement / grief services and support. Healthwatch Kingston supported Youth Out Loud! (a group of young people helping to improve our local health and social care services, working with Healthwatch Kingston and using their voices to make health and care services better for young people) to engage with 57 young people to develop and produced a short film by and for young people. As part of the work Youth Out Loud! (YOL!) discussed what bereavement meant. 75% did not know and only 25% understood the term. YOL! agreed to use the term ‘grief’ rather than ‘bereavement’ in their Youth Out Loud! film about bereavement / grief services and support.

Methodology

In 2022, our partnership pilot project adopted a community engagement approach which explored the lived experience of those accessing services and support, what mattered most when grieving and the intersection with culture, language barriers, faith, beliefs and life philosophies. Our Phase 2 Gaps Workshops Initiative continued this methodology so that the Phase 2 report could be published as an appendix to the Phase 1 report, and themes explored.

As Phase 1 of this south west London (SWL) work was piloted in Kingston, we actively encouraged organisations from the other five boroughs in SWL to submit for Phase 2 community grants to run local community bereavement gaps workshops.

To support these workshops, Healthwatch Kingston also conducted an online survey to offer a further opportunity to people across SWL to share their experiences of bereavement services and support, and End of Life Care (EoLC). Our survey ran at the same time as the bereavement gaps workshops. 48 people part completed the survey with 33 people responding to the questions on EoLC. Survey findings are summarised in Appendix C.

SWL ICB Community Services – Community Engagement

Healthwatch Kingston agreed to add a number of SWL ICB questions to our SWL Bereavement Services and Support Survey 2024-25 which extended time to complete surveys and potentially increased participant ‘burn-out’. This may have inadvertently limited participant engagement in the community services elements; however, the anonymised responses provided were shared with SWL to help inform EoLC stakeholders exploring a new Community Services service specification for SWL.

Over 200 people informed this report. 48 survey respondents and more than 150 participants provided insights from the workshops with local people from community organisations, hospices, bereavement charities, faith, belief and life philosophy groups, and the NHS from across south west London. Participants included a wide range of ages, backgrounds, and experiences of bereavement, including loss due to illness, trauma, addiction, pregnancy loss, and cultural displacement.