Chronic Illness Inclusion Project

Chronic Illness Inclusion Project

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New research on work and benefits in the wake of ‘Long Covid’

The CIIP and Leeds University are embarking on a joint project to explore how the worlds of social security and employment need to adapt to accommodate energy limiting health conditions.

News about the emergence of ‘Long Covid’ is gathering pace, with one in 20 people infected with COVID-19 developing symptoms lasting beyond eight weeks, according to Kings College London. This suggests that thousands of people in the UK are joining the pre-existing large, but hidden, group of disabled people living with chronic illness marked by debilitating fatigue and other symptoms.

People living with these conditions, which can be grouped under the umbrella term of energy limiting chronic illness (ELCI), are often not believed. A core attitude that people experiencing these debilitating illnesses face is the assumption that ‘fatigue’ is not objectively disabling, but something everyone endures that must be ‘pushed through’. While the government is compelling people to get back to work, many people currently recovering from COVID-19 are not going to slot back into the economy and some may be permanently disabled. Anecdotal evidence suggests large numbers are still unable to work at all or to their previous level.

The collaboration with Leeds Social Science Institute and Leeds Business School is based on in-depth online focus groups run by the Chronic Illness Inclusion Project (CIIP) in 2018 to gather the experiences and views of disabled people living with energy limiting chronic illness. A Knowledge Exchange Fellowship from the ESRC is enabling the CIIP to benefit from the academic expertise of Dr Jo Ingold and Dr Kate Hardy in producing a report aimed at policymakers and employers.

Catherine Hale, director of the Chronic Illness Inclusion Project said: 

“The emergence of Long Covid and its impact on employment and livelihoods means that policymakers must now take ELCI and energy impairment seriously as a form of disability or impairment. Our research on the lived experience of ELCI reveals just how badly this group of disabled people is served by current policy. We aim to provoke a complete rethink of the principles behind disability assessments systems like the WCA, and offer new recommendations on how to include more people with ELCI in society, as well as employment.” 

As this article for Futures of Work concludes: 

“The post-COVID-19 context is a critical opportunity to reshape work and employment and to finally make workplaces more inclusive for people with energy limiting chronic illness, undoing decades of exclusion.”