ELCI, employment and social security
Chronic Illness Inclusion has conducted in-depth research into the experiences of employment and the disability benefit system among disabled people with ELCI. This page brings together our report, briefing, case studies, policy and lobbying work and blogs on the subjects of benefits and work.
The ‘I already have a job…’ report, by Chronic Illness Inclusion and Leeds University Business School, sets out how government, employers and the benefits system are failing millions of people in the UK with Energy Limiting Chronic Illnesses – (ELCIs).
Although one-in-three disabled people of working age experiences problems with stamina, breathing or fatigue, the report says that their needs are not reflected in the workplace, in legislation, or by disability assessments like the Work Capability Assessment (WCA). Read more.
Watch our launch event hosted by the Centre for Welfare Reform. The webinar features the report authors as well as responses from Vicky Foxcroft MP, Carol Monaghan MSP and Pippa Stacey from Astriid employment support charity.
On the face of it, organisations are getting better at facilitating “flexible working”. That said, it’s a very limited definition of “flexibility” that is incorporated into most flexible working policies.
By their very nature, fluctuating chronic illnesses demand flexible management. The unrelenting challenge lies in avoiding an exacerbation of symptoms at the end of each day, or the start of the next. The unimaginative way in which most organisations structure work makes this extremely difficult. Read more
Stories of Our Lives
This series of case studies provides a rare insight into the day-to-day reality of energy-limiting chronic illness (ELCI). They demonstrate the lived experience of energy impairment shared by many disabled people, regardless of their diagnosis. The case studies were compiled during our in-depth focus group research into employment and social security with ELCI. They demonstrate the impact that energy impairment has on individuals, their families and their place within society.
Submission of evidence to the Work and Pensions Committee’s Inquiry into the Disability Employment Gap
CII submitted evidence to the Work and Pensions Committee of how ELCI is largely overlooked within the landscape of employment support policy and services. Our submission highlights the unique challenges of ELCI and employment. We call for employment policies specific to the needs of people with ELCI, instead of a one-size-fits-all approach to addressing the disability employment gap. Some of our recommendations include reduction in hours, flexible working, and the creation of niche roles to accommodate workers with ELCI.
Oral evidence session – the disability employment gap
Catherine Hale was invited to give evidence to the House of Commons Work and Pensions Committee. This is the first time that evidence has been specifically sought from people living with energy limiting chronic illness – ELCI. The relevant section begins approximately 1 hour and 7 minutes into the recording.
Lobbying for change
In 2019 CII met with the then Shadow Minister for Work and Pensions, Margaret Greenwood, to share research on ELCI, employment and social security. Margaret said: “Energy-limiting health conditions can be extremely difficult for people to manage and often have an impact on whether or not they are able to stay in work…It really is important that policy reflects the realities of people’s lives and that suitable support is provided.” Read the full story
“My job is five hours a week, working from home, with no set hours and amazingly supportive co-workers – the holy grail of employment opportunities for the chronically ill. Even so, it’s been a huge adjustment and ongoing struggle. A few years ago I was declared fit for work…” Read more.