Imagining Better Futures of Health and Social Care with and for People with Energy Limiting Chronic Illnesses

This proposed public engagement programme uses creative methods to co-produce speculative scenarios of health and social care with people of marginalised genders with Energy Limiting Chronic Illness (ELCI).

ELCIs include conditions in which energy impairment is a key symptom, e.g. neurological, musculoskeletal, auto-immune diseases, ME/CFS, fibromyalgia and Long Covid. Estimates in 2018 suggest 1 in 3 disabled people of working age in the UK experience such symptoms. The covid-19 pandemic has significantly increased this with 2.1 million people in the UK living with Long Covid.

This proposed programme of public engagement builds from a research project which analysed around 195,000 words of qualitative survey data collected by Chronic Illness Inclusion that documents the experiences of health and social care, and suggestions for future service improvement, by around 900 people of marginalised gender with ELCI. Of those survey respondents, 75% said they often, or very often, were not listened to in encounters with Health Care Professionals (HCPs).

People with ELCI are a large and growing section of the disabled population yet their voices and lived experiences are often overlooked. There is an imperative to consider the needs of people with ELCI in the design of future health and social care. This programme of public engagement work responds to that imperative.

Many ELCIs are more common in women, and gender-based discrimination in medicine exacerbates the disbelief and dismissal many people with ELCI experience. In addition to cis-women, gender bias in health care affects people of marginalised genders more broadly, including transgender, nonbinary, gender queer and intersex people. Moreover, LGBTQIA+ people face a variety of barriers when accessing healthcare.

Histories of racist discrimination in medical care also lead to inequalities, and institutionalised islamophobia means Muslim people are more likely to be dismissed by medical professionals. People from these groups who have ELCI may therefore be marginalised in multiple ways.

The proposed programme of public engagement builds from the previous research project, using the survey analysis as a starting point from which to run a series of creative workshops, facilitated by disabled artists, to co-create speculative scenarios that imagine better health and social care for people with ELCI. People involved in the workshops will be asked to imagine future health and social care in two ways: (1) future improvements for people who will be diagnosed with ELCI in the future; and (2) hopes for future health and social care for themselves as they age with ELCI.

The artists involved will utilise a range of creative methods to facilitate the imagination of these speculative scenarios, including drawing, creative writing, zine making, photography, audio recordings and comic creation. In addition to online, synchronous workshops, there will be asynchronous options, allowing people to respond to creative prompts at their own pace and in their own time.

In addition to workshops open to anyone of marginalised gender with ELCI, there will be dedicated groups for people with ELCI who identify as (1) LGBTQIA+ and (2) Muslim women. Further workshops will be held with health care professionals.

Creative outputs will include: zines collated from the work produced in zine making workshops; an audio narrative in podcast form based on pieces from creative writing workshops; a website showcasing photographs, writing and drawings from the workshops; and a comic book illustrating possibilities for future health and social care. A policy brief targeted at decision makers involved in managing health and social care, and an article for Pulse magazine (which targets GPs) will also be produced, along with a pedagogical toolkit to allow the creative outputs to be used in education for current and future health care professionals. These will be launched via a webinar.