Centre for Welfare Reform report: I already have a job: Energy Limiting Chronic Illness (ELCI), Social Inclusion, Employment and Social Security.

By Catherine Hale, Stef Benstead, Dr Kate Hardy and Dr Jo Ingold, April 2021

This report presents the findings and recommendations from a study into social inclusion, employment and social security for disabled people with energy limiting chronic illness (ELCI).

ELCI is a debilitating mix of physical fatigue, cognitive fatigue and pain alongside other diverse illness symptoms.

The study forms part of the Chronic Illness Inclusion Project (CIIP), a participatory research project by, and with, the chronic illness community in the UK. The first phase of research focused on chronic illness and disability identity, including a survey of over 2,000 disabled people. This report focuses on the second phase of research, involving in-depth discussion of participants’ experiences of employment and social security.

Examples of ELCI include: post viral fatigue syndrome; ME/CFS; fibromyalgia; lupus; MS; chronic pain; IBD; Ehlers Danlos syndrome; MCAS etc.

Main Findings

• 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.
• This report may be timely in addressing the circumstances of those newly
  experiencing ‘Long Covid’, which appears to impact approximately 2% of people who remain ill with Covid after three months

Download the free pdf in your browser here.

RECOMMENDATIONS (excerpt)
Promoting social inclusion for disabled people with ELCI requires a new approach that centres their particular experiences, needs and aspirations. Crucially, measures to improve employment prospects cannot succeed without a robust and enabling social security system. Although we list employment policy recommendations separately from those on social security, joined up policy making is key to improving lives. Employers, government and other stakeholders (including employment support organisations) all have a role to play in:

1. Recognising ELCI as a type of disability
2. Promoting employment with ELCI
3. Social Security Reform