Familiar places like these could remove barriers to care – such as not being sure if there is a health or care issue, where to go, how to get there, who to see, or what to tell the health or care practitioner. This is one of over 20 recommendations made by people across the UK who researchers say are rarely consulted about the design of health and social care services.
A new report coins the term ‘seldom-listened-to’ to describe these people and communities. The researchers also coin the term ‘health labour’ to describe the effort needed by seldom-listened-to people to access health and care.
The report, titled Designing the future of care with seldom-listened-to people, encompassed 10 projects across the UK – from Kent to the Highlands and Islands in Scotland. Participants in the research included siblings of children with life-limiting conditions; women, trans men, non-binary, and gender non-conforming people with energy limiting chronic illness, such as Long COVID and autoimmune conditions; older autistic people with learning disabilities; people living with chronic inflammatory disease, endometriosis; rural communities in the Highlands and Islands of Scotland; diverse communities in Greater Manchester; children living in areas of high deprivation in the South Tees region; African-Caribbean communities in London; mental health service-users in Kent, and both patients and staff staying or working in care units in hospitals.
“The people in our study are from communities which aren’t often listened to or included in discussions about the design of health and care services,” explained Professor Mary Stewart (pictured), academic lead for the project, and director of Social Interaction, Mental Health, and Wellbeing at Heriot-Watt University in Edinburgh. “And yet these communities can experience profound health and care inequalities that can impact on their physical and mental health, quality of life, and the ability to live well – not only for the individual – but also their families and the wider community.
“Our research sets out the specific ways in which staff, organisations, stakeholders, and policymakers, can place seldom-listened-to individuals and communities at the heart of the design of the future of health and care. We show not only that this is possible – but that it’s vital to co-design the future of health and care with these people and communities to improve health and care for everyone.”
The report is part of research funded by the UKRI Arts and Humanities Research Council (AHRC) – which supports arts and humanities research and study in the UK – and uses creative methods to explore how seldom-listened-to people and groups would like the future of health and social care to look.
The researchers say that ‘instead of using traditional research methods like surveys and interviews – which aren’t always accessible to seldom-listened-to people’ – they worked with artists and creative methods to capture the views and experiences of participants. These creative methods included film, music, poetry, podcasts, comics, creative writing, and folk stories.
Through a series of activities and workshops, the seldom-listened-to participants ‘reimagined’ health and social care services which could give them more say in decision-making, help them access and engage with care – and use safer spaces to build trust and rapport. Research co-author, Bryony Nisbet, a Psychology Research assistant at Heriot-Watt University, explained: “By safer spaces, we mean community places that are already familiar to people, and where they may already have support from trusted others. For example, if you’re an autistic adult with learning disabilities, accessing health and care in a day centre you already attend potentially removes the huge physical and sensory overload of trying to get to and navigate around a new place you’ve never been to before. For the NHS and social care, the practical change we’re proposing is moving the point of care from GP surgeries into the community. This in turn can help to tackle the growing burden on primary care in the UK.”
The 10 projects in the research were all partnerships between communities, community organisations, and universities. The other university partners were University of Liverpool, University of Greenwich, University of Strathclyde, Edge Hill University in Lancashire, University of Manchester, Manchester Metropolitan University, Teesside University, University of Kent, and University of the Highlands and Islands Inverness.
The organisations and charities involved in the research included disability group Chronic Illness Inclusion; Manchester public arts project, We Live Here; charity, Endometriosis UK; Scottish Autism; educational institution, Tees Valley Education Trust, and arts community outreach project, Inverness Openarts.