Based on large scale quantitative and qualitative research, a new groundbreaking report “disrupts stereotypes and exposes the systemic failings that harm the lives of hundreds of thousands of people in the UK”.
The report is based on emancipatory disability research by the Chronic Illness Inclusion Project, part of the DRILL programme, supported by the Leeds University Business School, CERIC, LSSI, ESRC and published by the Centre for Welfare Reform.
It presents the findings and recommendations from a study into social inclusion, employment and social security for Disabled people with energy limiting chronic illness (ELCI).
People with ELCI have a range of medical diagnoses, and symptoms may vary and fluctuate, but the overall impact on their lives is of energy impairment. They have to carefully ration their energy every day in order to avoid aggravating symptoms.
Examples of ELCI include: ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), fibromyalgia, lupus, chronic pain, Ehlers Danlos syndrome, as well as conditions causing: respiratory failure, kidney failure, inflammatory bowel conditions, sickle cell disease, autoimmune conditions, neurological conditions, endocrinological conditions, and rheumatological conditions.
The new report is timely in addressing the circumstances of those 1.1m people experiencing Long Covid.
According the new research, people ELCI experience high levels of social isolation, stigma and lack of representation.
In its Executive Summary, the report says: “One in three disabled people of working age in the UK experiences impairment of stamina, breathing or fatigue. This is the current closest match to the concept of ELCI. Despite the size of this group, employment and social security policies and systems have not considered or been designed for the particular needs of this group of people."
It adds that: “Until now, policy makers have identified this group through various categories of medical diagnosis, or through the catch-all term ‘long-term health conditions’.
This report contends that people with energy limiting chronic illness form a discrete sub-group of Disabled people. This group has remained hidden within disability-related policies because their lived experiences of illness and impairment are widely misunderstood and often discredited, denied and disbelieved.
The consequence of this is disability assessments that fail to account for impairment with chronic illness; a social security system that is disabling rather than enabling; and a lack of appropriate support and adjustments in employment.”
The main findings of the report include:
- People with energy limiting chronic illness form a discrete sub-group of Disabled people.
- Work can be bad for health with ELCI. Energy impairment affects the amount, rather than the type, of activity people can do and aids and adjustments cannot fully mitigate its impact.
- In the workplace, inflexible, performance-based and rigid human resource policies and practices are a barrier to employment and a lack of autonomy and control risks exacerbating illness.
- There is a need for job carving and job brokering agencies, such as Astriid, who can maximise opportunities for people with ELCI by working with employers to specifically create suitable jobs.
- For social security, disability assessments fail to account for energy impairment, especially its key features of payback, reduced capacity and cognitive dysfunction.
Energy Limiting Chronic Illness (ELCI), Social Inclusion, Employment and Social Security is available from centreforwelfarereform.org
See also the related blog by one of the report’s authors, Catherine Hale available from drilluk.org.uk.