Lambeth Advance Care Planning Consortium, an open network of statutory and voluntary sector organisations promoting the importance of recording future care and treatment wishes, is dedicated to ensuring everyone across the borough has the opportunity to make an advance care plan. This case study forms part of our end of life care guide for councils.
Lambeth is a diverse inner-city borough and many residents experience significant health inequalities. Lambeth Advance Care Planning Consortium, an open network of statutory and voluntary sector organisations promoting the importance of recording future care and treatment wishes, is dedicated to ensuring everyone across the borough has the opportunity to make an advance care plan.
The consortium has established a free one-to-one support service to assist people who would benefit from this level of help to create their own advance care plan. The initial programme is particularly targeting groups known to experience health inequalities locally; people with long-term conditions (including dementia and learning disabilities), unpaid informal carers and the borough’s substantial Portuguese-speaking community.
A supporting awareness-raising scheme also highlights ways for people to complete their plan independently.
The service and outreach programme is delivered by a team of trained volunteers and staff from voluntary sector consortium members that already work with the target groups, using a well-established multi-agency referral gateway run by the local Age UK. Other delivery partners include the local carers hub, learning disability assembly and a community anchor with Portuguese-speaking staff. Advance care planning expertise is provided by local hospice St Christopher’s and the national charity Compassion in Dying, which co-leads the project with Healthwatch Lambeth.
Joint CCG/council commissioners and safeguarding leads sitting on the consortium are helping to identify and embed new referral points for the service across the health and care system, for example, through protected learning time events for GP practices and briefings for councillors and social workers.
The service launched in May 2020 so it is early days for the approach, but the awareness-raising work has already proved very successful in engaging hundreds of people across the borough. The consortium’s flagship ‘Before I Die…’ tent at the annual Lambeth Country Show features an interactive wall which provides a space for people to share their end-of-life wishes as an introduction to advance care planning. The idea builds on the global art project of the same name and strikes a chord with many people:
“I like the Before I Die wall. It makes you consider what is truly important in your life.”
“I have a long-term illness – this has helped me find out how to put across my wishes if the worst happened.”
Mobile versions of the tent and information sessions also feature at a range of other community events year-round, including a programme for Dying Matters Week each May with activities such as death cafes and community discussions on DNACPR.
How is the new approach being sustained?
The new service has been created with initial funding from the National Lottery Community Fund. By the end of the funded period, it will have become embedded into the local project partners’ general support offers for their clients, and people will be supported to share their plans using the Coordinate My Care platform. Training of new recruits to deliver the service currently occurs every few months alongside reflective learning peer support sessions to build the team’s confidence and knowledge. A train the trainer programme in the second half of the project will also lock in local expertise for the future.
This is an ambitious project and the coordination of such a complex partnership initiative has taken a lot of energy, particularly for the lead partners and for the team supporting the referral process. Like all other services, the delivery model has also been adapted in response to the Covid pandemic; one-to-one support is currently only available by telephone and remote outreach activities are being devised and tested, for example with a virtual Before I Die… wall. It’s an opportunity for innovation and the project has benefitted from the topical nature of the service by recruiting over 20 new team members through the council’s covid volunteer coordination programme. But capacity assessments are not currently proving possible and there has also been some reluctance from local people to take up the phone-based support offer, perhaps illustrating just how valuable face-to-face conversations are for building trust around sensitive topics.