Written by Gemma Allen, Palliative Care Inclusion and Community Partnerships Lead at Mary Stevens Hospice, Co-founder and Programme Lead, No Barriers Here, and co-investigator on The Victoria and Stuart Project.
We often talk about the power of art and how one image can speak a thousand words. But it is not something that we traditionally connect with advance care planning and decision making about future care.
Let me introduce you to No Barriers Here and the reason why a few weeks ago I made a trip to London with my colleague, Jed Jerwood, to meet with members of The Victoria & Stuart Project research team. The purpose of the day was for the team to peer review and test some of the methods used in No Barriers Here. Beforehand they had discussed and shared their initial thoughts and concluded that 'it’s about being inclusive’ and it is ‘helping people to use art as language all on its own when they sometimes don’t have the words’.
No Barriers Here consists of three advance care planning workshops, recommended to take place over three consecutive weeks. Each workshop uses a different arts-based method to think around important topics and what matters most to people in relation to end of life care. Everyone who attends receives the materials and resources to use during each session and following the final workshop, people can keep the materials and any art-work they produce. When taking place with patients or within healthcare services the information shared is often (with consent) transferred to an advance care plan document or patient record.
The Victoria & Stuart Project team wanted to test the first two workshops, and these were condensed to fit comfortably within the agenda for the day following introductions in the standard team way!
Through experientially experiencing two out of the three workshops we hoped the team would gain an insight and overall feel for No Barriers Here. We use this method in our facilitator training too because only through experiencing something ourselves do we know how it may feel for others. So, the research team, like our training delegates, experienced advance care planning in a small group through the use of arts-based methods.
No Barriers Here is both powerful and meaningful. It holds inclusion and equity at its heart with the original pilot project in 2019 co-founded and co-produced by people with learning disabilities. Since then, it has continued to evolve as an equity-oriented tool with subsequent phases and research studies in co-production with other communities who experience inequity in palliative care. It offers a less verbal method to advance care planning and presents as an accessible tool for use with people who may not be able to articulate their thoughts verbally.
We guided The Victoria & Stuart Project team through the first two workshops and then answered lots of questions and shared the stories and impact of the programme over the past four years. It has been tried and tested with several groups of people and whilst some things may be amended to meet individual or accessibility need, the workshops and methods used have essentially remained the same. But what did The Victoria & Stuart Project team think? This is what they said.
It’s all inclusive and opens up ways for people who can’t verbalise
Something lovely about the openings of conversations that happened in our own minds but also in connections and getting to know the people alongside us.
It’s a good way to express what they think…different ways of doing things
Usually people start with what’s out there and tweak it a bit e.g. with the forms and then finding out they don’t work so well. You have stepped completely outside the box and got a completely new approach.
The roots of No Barriers Here will always lie with people with learning disabilities so it is phenomenal news that it has been recognised by The Victoria & Stuart Project research time and will be included as one of four(!) gold standard resources within a new toolkit!
I genuinely hope that with the publication of the toolkit, more learning disability and palliative care teams (and stakeholders) will be invested in supporting more people with a learning disability in accessible advance care planning. This will help to ensure that people with learning disabilities when living with a life limiting condition, aging or dying have not been silenced or prevented from discussing their end-of-life care wishes. But instead have been given equitable opportunities to explore their choices and most importantly are supported to die a good death in a way that is meaningful to the person.
The final word goes to The Victoria & Stuart Project research team.
It’s like our cards and No Barriers Here workshops could have been brothers and sisters. They are complementary a person could do both approaches and get loads out of both... It definitely should be used…Putting this in our toolkit gives us a new way of approaching things through pictures, this way through arts approaches. We can confidently say we’ve tested it and even thought we haven’t been able to do the whole way through we’ve definitely properly got a good understanding of it and how it works.