Doing things differently, sharing power and holding to account: the evolution of No Barriers Here.

Over recent years, there has been an increased awareness of the inequalities in healthcare provision and palliative care. Individuals and organisations are working to change this, and today we hear from Gemma Allen and Dr Jed Jerwood about an exciting initiative to improve access to advance care planning for people who experience barriers to healthcare.

Participants at a No Barriers Here workshop.

Prior to the COVID-19 pandemic, a small group of six met to discuss the inequity in palliative care for people with learning disabilities. Within the group there were three people with a learning disability, a learning disability service manager, a member of staff from The Mary Stevens Hospice and an art psychotherapist who wanted to develop a project around accessible advance care planning. The hospice had worked with people with learning disabilities to co-produce an easy read advance care plan, but this did not feel enough. ‘What about people who can’t communicate or don’t like hospitals?’ one person asked.

We discussed how we could redesign traditional advance care planning and remove systematic barriers to palliative care. The name of the project was created by a co-production member who said, ‘Well it’s simple. We want to remove barriers, so we’ll call it No Barriers Here!’

Working together we developed a series of workshops that used art-based methods to support advance care planning, with accompanying easy read material and short demonstrative films. The aim was to create a safe space to help individuals talk about their advance care planning wishes, as well as to create materials to support healthcare professionals to have these important conversations. Each workshop was trialled beforehand with the co-production group members, with amendments made to ensure they were accessible and inclusive.

Many projects were paused during COVID-19; however, we knew people who historically experienced inequity would be subjected to further disparities during the pandemic. Originally planned to take place outside of a clinical environment and in a community setting, two cohorts of workshops were facilitated online due to government restrictions and the final cohort in the garden of a supported living home.

The arts-based workshops created space for rich and detailed conversations to help people talk about and participate in advance care planning, care staff gained a deeper understanding about what really mattered to people and a YouTube film helped to dispel myths around talking about dying with people with learning disabilities. This learning informed an education programme for health and social care professionals about advance care planning for people with learning disabilities, and artwork developed into a community advance care plan quilt. The quilt forms a creative advance care plan, visually demonstrating people’s choices and wishes for the end of life and is displayed in the local community.

The approach has been developed further through a research study focused on people excluded from palliative care by identity, culture, ethnicity, and race, involving the recruitment of a new coproduction team and delivery of three cohorts of workshops with people identifying as from the Black migrant community, a group from the Roma community and a South Asian women’s group.

Through these projects the No Barriers Here approach has developed into an equity-oriented, arts-based approach to advance care planning. The richness of the project comes from a combination of meaningful coproduction, an arts-based approach, reflexivity (thinking about feelings, reactions and motivations) and challenging assumptions throughout each stage of the process. In each workshop, as facilitators, space holders and co-production partners we reflected upon our own degree of power and privilege, including white privilege, social and economic advantage and to recognise our differences to create inclusive dialogues and a safe space for all.

No Barriers Here has received growing interest from healthcare professionals and a facilitator education course has been developed for those who want to use a more equitable approach to advance care planning, particular with individuals or communities who can be excluded. The collective efforts of people shouting loudly about equity, co-production and the use of arts-based methods is not only improving equitable advance care planning but dismantling barriers to palliative care, whilst holding space for voices which are so often unheard.

We would like to conclude this blog by hearing directly from workshop participants about their views on this work:

If you are interested in finding out more about No Barriers Here, including their facilitator training, please email Gemma here.

No Barriers Here advanced care plan quilt.

Links and resources

  • Find out more about No Barriers Here, through their website and Twitter @NoBarriersHere
  • Click here to watch the No Barriers Here film
  • Find out more about the EAPC’s Reference Group on Intellectual Disability here and the 2015 EAPC White Paper here.

About the authors

Gemma Allen is the Palliative Care Inclusion and Community Partnerships Lead at The Mary Stevens Hospice and responsible for the operational management, leadership, education, facilitation and day to day running of No Barriers Here. Gemma works with under-served communities often adopting a public health approach to palliative and she has a keen interest in education and research. Gemma is Chair of the Palliative Care for People with Learning Disabilities Network (PCPLD). Twitter: @gemma_allen1.

Dr Jed Jerwood (PhD) is an art psychotherapist working in mental health.  He also holds an honorary research fellowship at the University of Birmingham. His clinical background lies in hospice care and in adult mental health. His research interests lie in health inequalities, particularly regarding death and dying; arts-based research methods and using creative approaches to deepen conversations in healthcare settings. He is the lead researcher on the No Barriers Here programme. Twitter: @JedJerwood.

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This entry was posted in ADVANCE CARE PLANNING, Intellectual disabilities, Minority Communities, PATIENT & FAMILY CARE. Bookmark the permalink.

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