A new report by researchers at Liverpool Hope University, the University of Liverpool and Disabled People’s Organisation Chronic Illness Inclusion has revealed the extent of discrimination faced by women, trans men, non-binary and gender nonconforming people with Energy Limiting Conditions (ELCs) and calls for widespread improvements to the healthcare and support they receive.
Energy Limiting Conditions (ELCs) refers to long-term health conditions in which energy impairment and debilitating fatigue are key symptoms. This includes many autoimmune, neurological and musculoskeletal diseases, ME/CFS, fibromyalgia and, since the COVID-19 pandemic, also Long Covid.
Launched at a webinar on Thursday 14 September, the report highlights the experiences and impact of disbelief and discrimination within health and social care on people with ELCs, and makes a series of recommendations to address the issue and improve care.
The report is accompanied by an animation which brings people’s stories to life, and a medical education toolkit to raise awareness amongst trainee health professionals.
Discrimination
The report is underpinned by research from the `Disbelief and Disregard: Gendered Experiences of Healthcare for People with Energy Limiting Conditions’ project that analysed 962 responses to a survey carried out by Chronic Illness Inclusion.
Their analysis found that 75% of respondents with a range of different ELCs felt they were not listened to or believed by health or care professionals and this experience of disbelief and disregard led to damaged self-esteem and self-confidence, and has knock on effects in relation to work, education, welfare and benefits, creating a cycle of inequality.
The data also revealed widespread reporting of delayed or incorrect diagnosis by participants. Many respondents felt they experienced medical sexism which was exacerbated for those who also experienced ageism, racism, homophobia, transphobia and fatphobia.
The research is part of the British Academy and Leverhulme Trust funded research project `Challenging Disbelief and Disregard in the Lives of People living with Chronic Illness’ that also involves Chronic Illness Inclusion and the University of Liverpool.
Recommendations
A series of accompanying briefing papers make a number of recommendations to improve the care and support that health and medical professionals provide:
- ELC patients need to be listened to and believed and the harms done to the health and wellbeing of their conditions needs to be taken seriously by healthcare and medical professionals.
- Training for all health, social care, and welfare professionals needs to include information about ELCs and be based on up-to-date research and the lived experiences of patients.
- Improvements to patient and public involvement frameworks to ensure that ELC patients play a role in research and policy decision making.
- Patient pathways and quality of care needs to include the provision of appropriate treatment or symptom management and support systems need improving to ensure people with ELC get the support they need to access welfare, social care, employment and education.
Dr Ana Be Pereira, Senior Lecturer in Disability and Education in Liverpool Hope’s School of Social Science, is a co-investigator and co-author of the report and policy briefings that come from the project led by the University of Liverpool’s Dr Bethan Evans.
Dr Be Pereira said: "This report reveals the stark realities of the disbelief and bias encountered by people living with ELCs as well as the level of discrimination experienced by women, trans men, non-binary, and gender nonconforming individuals.
"We hope that by highlighting these issues, medical professionals will recognise the need to listen and learn from those living with ELCs because there is an imperative need to improve the healthcare they receive and this impacts on all aspects of their lives."
The report and briefing papers were launched at a webinar on Thursday 14 September alongside a short animation produced by Stacy Bias of Your Story Studio and Ell Rose of Four Foot Eleven.
Liverpool Hope and the University of Liverpool have been awarded funding by the Arts & Humanities Research Council (AHRC) grant to explore what the future of health and social care might look like to better serve people with Energy Limiting Chronic Illness.
The project will continue to collaborate with Chronic Illness Inclusion, and develop a new partnership with Healing Justice London.