No Barriers Here: advance care planning for those with a learning disability


No Barriers Here: advance care planning for those with a learning disability

With last week marking both the annual national Learning Disabilities Week and our very own Somerset-organised Advance Care Planning Week, there’s no better time to introduce a brand new project run by our end of life care education team.

No Barriers Here© was originally developed in Dudley in the West Midlands and adopts a public health approach to palliative and end of life care, working alongside communities who are often well but who are known to experience inequalities in life and in death.

One of those groups of people identified by colleagues in our end of life care education team is those with a learning disability.

Amy Giles, our advance care planning lead, set about looking at a way to improve the way conversations are held, particularly advance care planning in residential care homes for people with learning disabilities.

She joined together with Hana Kennerley, who’s a proactive care nurse in care homes within the Tone Valley primary care network, to get trained up on the No Barriers Here© approach, before introducing it at Crystal Care and Support in Taunton, with a view to extending it further should it prove successful.

Amy explains how the project first began and why she was so keen to bring it to Somerset. “The first phase of No Barriers Here© was co-produced by people with learning disabilities, to explore the use of artmaking to support a less verbal approach to thinking about death and dying,” she says.

“It’s made up of three workshops, the first being where people draw around their handprint and write what’s important to them.

“The second is all about choices and wishes, which is separated into sections that cover who their important people are, and what three things they’d want at the end of their life, such as their funeral wishes, and wills. The third workshop looks at legacy by using a weaving loom.

“Colleagues in the team at Crystal Care and Support have been really careful in the way they involved the nearest and dearest of those they’re caring for, particularly around consent forms and they asked us to go in to help where we can. Everyone had opportunity to discuss it further if they were unsure beforehand.

“Our hope is that these workshops will give our care home colleagues more confidence, as well as creating positive conversations, and so far, the feedback has been really good.”

According to the project team in Dudley, the No Barriers Here© workshops are designed to enable people to be involved in early decision making, moving away from a medicalised environment and the barriers that ‘form filling’ and healthcare systems often create.

Like traditional advance care planning, the workshops cover a series of topics taking place over consecutive weeks, and people are informed of the process if they wish to share their choices and wishes with loved ones, and anyone involved in their care, within an advance care planning document.

Amy continues: “As part of the project, Hana and I are also working on getting both an advance statement of wishes and treatment escalation plan forms written up for this group of people who have learning disabilities.

“It’s fair to say that in Somerset we haven’t really ever had a consistent approach to advance care planning, so it’s a good way of us starting these conversations and letting people with learning disabilities, and their loved ones and carers, know about it.

“Our original aim was to ensure that everyone in Somerset with a learning disability was able to write an advance care plan, but we soon realised that we needed to focus more on helping them to have those important conversations.”

Amy explains how the work our end of life care education team is doing builds upon an approach from the NHS Somerset Integrated Care Board (ICB).

“The team at NHS Somerset ICB recently published a video that talked about the importance of those with a learning disability talking about death and how they would like to be remembered, and our work very much builds on this by showing how it’s possible,” she says.

“It first came about following the COVID-19 pandemic, when a lot of blanket treatment escalation plans were written across the country, and at that time there were little conversations happening with people with learning disabilities or their loved ones and carers.

“We’re doing a lot of education to show people that a learning disability on its own isn’t a reason not to have important or difficult conversations, or to put a ‘do not resuscitate’ note on someone’s medical record.

“There’s a lot of scope to extend this approach to other minority groups as well, and our colleagues in Dudley have trialled the approach for those in minority ethnic groups, gypsy and traveller communities, LGBTQ+ communities, and it would work well with those with dementia, among others.”

Two of the residents at Crystal Care and Support that Amy recalls benefited greatly from the project were Carly* and Bob*.

“Carly is a younger woman, and it wasn’t clear whether she’d had any thoughts about her funeral,” says Amy.

“We found that once we began having the conversation with Carly, she told us lots of information about herself, including her music taste, animals she liked. Our care home colleagues were amazed as they had never really thought about this before.

“While we know things might change when Carly gets older, if something unexpected should happen to her, the colleagues now know what type of things she likes, and what brings her comfort.

“Bob was a much older man and told us he wasn’t religious, but that he would be happy to have a chaplain or vicar visit him if he was dying – that’s another thing that the colleagues didn’t know.

“By having these conversations, it gives colleagues an opportunity to help their residents deal with grief. For example, one of the young men in the care home had recently lost both his grandparents, and having the conversations helped him to explore his self-management of grief.

“Our care home colleagues wouldn’t have necessarily started those conversations naturally, so by us coming in, we’ve been able to give them a new perspective. So far, it has worked really well, which is great news!”

BBC Radio Somerset interview

Last week Laura James, our end of life care education lead, spoke to BBC Radio Somerset mid-morning presenter Simon Parkin about the importance of planning ahead - listen back here (16:50 into programme).

'We need to talk about death' – A care home education event

Following on from the NHS Somerset ICB film's launch in spring 2024, we’re pleased to launch an accompanying education workshop, sharing best practice and facilitating conversations across our Somerset network. It takes place on Thursday 12 September, from 9am to 5pm.

The workshop is being run by our trust and the ICB, and we welcome anyone who works in care with people with learning disabilities and/or autism, both formally or informally, to join us for a packed programme of end of life care topics and talks.

Find out more here.