RESOURCES
Outputs from our research

Here you’ll find resources produced by the two research projects and related activity by the team.

ANIMATION

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POLICY BRIEFS AND REPORT

We have produced a series of 6 policy briefs which address different findings from project one (also available collated as a report), and one brief from project two, based on workshops with medical and allied health professionals.

Brief 1: Background and Executive Summary

Download brief

Brief 2: The Impact of Poor Healthcare on Mental Health and Wellbeing

Download brief

Brief 3: Challenges of Delayed or Misdiagnosis

Download brief

Brief 4: Impact of Disbelief on All Areas of Life

Download brief

Brief 5: The Intersection of Sexism and other Axes of Oppression

Download brief

Brief 6: Making Public and Patient Involvement / Engagement (PPIE) more inclusive of people with Energy Limiting Conditions

Download brief

FULL REPORT: contains all 6 briefs in one document

Download report

POLICY BRIEF FROM PROJECT 2:
Medical and Allied Health Professionals’ Experiences and Recommendations

Download brief

CREATIVE WORK

Project Two involved creative workshops for people with ELC, working with 5 artists. The artists created work based on the discussion in the workshops, and the workshop participants also produced their own creative work. Use the buttons below to view this work, or follow the links to each artist’s page to find alternative formats.

CREATIVE WORK BY ARTISTS


Animation by Khizra Ahmed using images from workshop participants’ collage zines

Animation

‘our souls are not tethered, they radiate everywhere’
Creative non-fiction by Khairani Barokka

Creative non-fiction


‘Can you hear me sing?’
Fairytale short story by Louise Kenward

Short story


‘Freedom is Rest’
Comic book by Louise Kenward and Julian Gray

Comic book

‘Medicine from the Cripothecary’
Podcast / audio collage by Mish Green and participants

Podcast / Audio collage
CREATIVE WORK BY WORKSHOP PARTICIPANTS

Collage zines produced in workshops with Khizra Ahmed

Collage zines

Zine collating art produced in workshops with Julian Gray

Zine

Multi-media work produced in workshops with Khairani Barokka

Multi-media work

Fairytale creative writing produced in workshops with Louise Kenward

Creative writing
VIEW EACH ARTIST’S PAGE AND ALTERNATIVE FORMATS

Each page hosts the research produced by artists and participants available in a range of formats.

MEDICAL EDUCATION TOOLKIT

Please complete the form below to download a set of resources for use in medical education / training.

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WEBINAR VIDEOS

In May 2022 we had our first Webinar on the topic of Challenging Disbelief and Disregard for people living with chronic illness and disability. In this event, we had a range of panelists who recorded their presentations beforehand. Some of these presentations are now available here with consent from presenters.

Research Partners:

University of Liverpool Logo
Liverpool Hope University logo

In partnership with:

Healing Justice London logo
The Lantern Initiative logo
Chronic Illness Inclusion logo

Funded by:

The British Academy logo
UKRI Arts and Humanities Research Council logo