Here you’ll find resources produced by the two research projects and related activity by the team.
RESOURCES
Outputs from our research
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
Brief 2: The Impact of Poor Healthcare on Mental Health and Wellbeing
Brief 3: Challenges of Delayed or Misdiagnosis
Brief 4: Impact of Disbelief on All Areas of Life
Brief 5: The Intersection of Sexism and other Axes of Oppression
Brief 6: Making Public and Patient Involvement / Engagement (PPIE) more inclusive of people with Energy Limiting Conditions
FULL REPORT: contains all 6 briefs in one document
POLICY BRIEF FROM PROJECT 2:
Medical and Allied Health Professionals’ Experiences and Recommendations
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
‘our souls are not tethered, they radiate everywhere’
Creative non-fiction by Khairani Barokka
‘Can you hear me sing?’
Fairytale short story by Louise Kenward
‘Freedom is Rest’
Comic book by Louise Kenward and Julian Gray
‘Medicine from the Cripothecary’
Podcast / audio collage by Mish Green and participants
CREATIVE WORK BY WORKSHOP PARTICIPANTS
Collage zines produced in workshops with Khizra Ahmed
Zine collating art produced in workshops with Julian Gray
Multi-media work produced in workshops with Khairani Barokka
Fairytale creative writing produced in workshops with Louise Kenward
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.
The toolkit is free, but we ask you to submit your details so that we can track use. We will store your details securely and only use them to follow up about your use of the kit.
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:
In partnership with:
Funded by:
