Bringing important conversations into the community
Advance care planning
This week, a pioneering new one-to-one support service will be launched in Lambeth to enable residents to consider and write down their treatment and care wishes, in case a time comes when they are unable to make or communicatedecisions. Due to coronavirus, the service will be offered through telephone support, until we are able to provide a face-to-face service.
It is a truly grassroots project that has been designed alongside and for Lambeth’s diverse communities and will be delivered by local community organisations and volunteers, to ensure it remains in tune with and responsive to local needs.
The project is an initiative from the Lambeth Advance Care Planning Consortium, and is delivered by a project group led by Compassion in Dying and Healthwatch Lambeth. The Consortium brings together local community groups, Lambeth Council, the Lambeth borough-based board of South East London CCG and local Primary Care Networks to raise awareness of advance care planning, and support local people to be able to consider and document their wishes.
Research shows that when people have the opportunity to consider what matters most to them at the end of life — such as if they would rather prioritise quality of life or prolonging their life — and to document this, people are more likely to have a good end-of-life experience.
This is why the Lambeth Advance Care Planning Consortium is launching this new grass roots, peer-led project which brings these important conversations into the community, so that local people can consider and share what matters to them, without waiting for health and care professionals to lead the discussion. This is the first project of its kind in the UK, and could become a model to be replicated in communities across the country.
We have already spoken to hundreds of local people over the past year through a range of events including the Lambeth Country Show. More than 400 people visited our ‘Before I Die’ tent, which aimed to get people thinking about their wishes for the end of life or a time when they might not be able to say what they would or wouldn’t want. The tent included a wall for sharing bucket list dreams, information on how to record your wishes, and opportunities to talk about death and dying.
“I stopped when I saw the tent and immediately felt moved. You’re talking about death and suffering completely out of context. You’re very brave to bring this out. We need to talk about this. My sister has MS and is isolated because others don’t want to hear her talk about her situation. Death is scary and talking about it will make it less frightening.”
Before I Die tent visitor
During the three year project, the Consortium will:
Train 150 volunteers and people working in community organisations to be able to provide one-to-one support so that people can make a living will, advance statement or Lasting Power of Attorney for health and welfare
Raise awareness with 2000 local people, so they know their options and the support available
Support at least 500 local people to consider and document their wishes, and to share their documents with the important people in their lives and with appropriate health and care professionals
Focusing on reducing local health inequalities
Through the design process for this project, we identified local communities who experience poor health outcomes and are less likely to report positive experiences of accessing services. This will enable the service to deliver bespoke support so that people from these communities are better supported to consider and document their treatment and care priorities.
We are working with the following groups in particular:
People who speak Portuguese as a first language: One in six residents in Lambeth (more than 35,000 people) speak Portuguese as their native tongue, making it the borough’s second-most spoken language. People from Lambeth’s Portuguese-speaking communities are known to experience poor access to health services and information, and experience poor health and wellbeing outcomes.
People with learning disabilities: More than 750 people with a learning disability are known to Lambeth social services. However there are many more who are not eligible for (or not known to) specialist services, so the actual number of people is estimated to be closer to double this. The premature death rates and inequality of access to services experienced by people with learning disabilities are well documented.
People with multiple long-term conditions: People from deprived areas are more likely to develop multiple long-term conditions earlier, and the impact of long-term health conditions is deeply experienced in Lambeth. More than one in five residents are estimated to be living with at least one long-term condition and increasing numbers of local people are estimated to be living with multiple long-term conditions. People with multiple long-term conditions are more likely to experience disjointed care and treatment, and are at increased risk of emergency hospital admissions.
Informal, unpaid carers: The 2011 Census recorded that there were 20,477 informal carers in Lambeth. This was a 10% increase from the previous census and the total number is therefore likely to be significantly higher. Research by Carers UK reveals that 2.6 million people across the UK have quit their job to care for a loved one who is older, disabled or seriously ill, with those aged 45–64 being most likely to have a caring responsibility. Caring responsibilities can have an adverse impact on the physical and mental health, education and employment potential of those who care, which can result in significantly poorer health and quality of life outcomes.
People with dementia: South East London Clinical Commissioning Group estimates that more than 1,000 people in Lambeth currently live with dementia and it is the ninth highest cause of death in the borough, with 1 in 98 people who live in Lambeth dying as a result of dementia. A common effect of dementia is a loss of the ability to make or communicate decisions, so it is particularly important to support people to consider and record their wishes for future care and treatment while they still retain this capacity.
We are committed to sharing our learning throughout this project, so that other areas around the country can utilise our learning and the bespoke resources we develop. We will be using this blog to do so and would welcome your thoughts and collaboration.
Although we have been developing this project well before coronavirus took hold in the UK, it is now sadly more relevant and necessary than ever before, as significant numbers of people are becoming seriously unwell.
We hope this project will provide some immediate peace of mind and clarity to Lambeth’s residents in these challenging times, as well as helping to ensure they get the care and treatment that’s right for them in the long term.