Chronic illness community faces culture of disbelief and rigid jobs policies, says report

Millions of people with energy-limiting chronic illness (ELCI) are being failed by both employers and the Department for Work and Pensions (DWP), according to a new user-led report.

The study found that the flaws within the disability benefits system create a “a deep-seated social insecurity” for people with ELCI, largely because of a “culture of disbelief” which undermines and hampers their efforts to engage with society.

But it also found that “inflexible, performance-based and rigid” employment policies created barriers for those who were able to do some work.

The report – I Already Have A Job… – is based on focus group discussions with people with ELCI, and has been published by the disabled people’s organisation Chronic Illness Inclusion and Leeds University Business School.

The report concludes that work can harm the health of people with ELCI, and that their primary limitations are the amount of work they are able to carry out, and their fluctuating capability to carry out work from day to day.

This means that the most critical adjustments that could allow them to work are changes such as cutting working hours, being allowed to work from home, and ensuring flexibility over their working week.

The report is particularly critical of the work capability assessment, which it says fails to take any account of how many hours a benefit claimant might be able to work and how that might fluctuate.

This leads to “incorrect decisions, disentitlement to support and a distressing appeals process”, with the system causing a “deterioration in health and a pervasive sense of insecurity”.

The culture of disbelief which people with ELCI face has left them in “constant fear of suspicion, judgement and hostility from the public, as well as from benefit assessors and even medical professionals”, says the report.

It found that the benefits system “undermined and hampered” efforts to engage with society, by viewing such activity with suspicion or as evidence that they could work and so could have their benefits cut or removed.

One of the focus group participants, George*, said DWP’s attitude was “largely to disregard the fact that for some people work is genuinely impossible” which “enables them to construct the benefits system to literally design us out of it”.

He added: “Our lives don’t fit their questions, and the system is deliberately constructed that way.”

Those members of the focus groups who were able to work all relied on either a partner or a social care package for cooking and managing the household, and sometimes for personal care, to allow them to free up energy for employment.

Another of those who took part in the research, Charlotte*, said: “The more I’ve recovered and tried to interact with society, the more walls I run into that are there because government and society don’t understand chronic illness.

“So many of those walls seem to be there just because no one ever thought about us.”

George said: “To sum it up I’d need the following: flexible working hours, a flexible workload, telecommuting facilities and most crucially, an understanding and sympathetic employer.”

The focus groups told the researchers that the government’s belief that work was fundamentally good for health and promoted recovery “shows how little policy makers understand of the reality of ELCI”.

Charlotte added: “Work can catastrophically damage health and worsen quality of life which is not helpful and branding all work as ‘good for health’ is reducing the issue to absurdity.”

She said the assessment process, both for employment and support allowance and personal independence payment, appeared to be “luck based”, with success dependent “on what assessor you get and whether they’re competent or honest or know anything about your condition”.

She said: “That makes reassessment terrifying. I’m going through PIP assessment now and looking back, I think just getting the form caused a medium sized relapse that’s lasted a couple of months so far.”

Among the report’s recommendations is for employers to understand ELCI as a form of impairment for which they have a legal duty to make reasonable adjustments.

It also calls on the government to redesign the WCA in partnership with disabled people, reduce the “unnecessary frequency of reassessments”, increase funding for advice and advocacy services, and simplify the appeals process.

And it says that the impact of “Long COVID” on those who have become ill during the pandemic could create a sizeable new group of people with ELCI who have particular employment and social security needs.

The report was written by disabled activist and researcher Catherine Hale, founder and director of Chronic Illness Inclusion; disabled author and researcher Stef Benstead; and academics Dr Kate Hardy, from Leeds University Business School, and Dr Jo Ingold, from Deakin Business School in Australia.

Hale, who this week gave evidence (pictured) to the Commons work and pensions committee about some of the issues raised in the report, said: “The government has created a ‘hostile environment’ for people living with chronically low energy who are often desperate to enjoy the sense of fulfilment and social inclusion that comes with paid work.

“We face a culture of disbelief from the moment we seek support from the state.

“Work capability assessments for benefits are based on a flawed and discredited model that says our inability to work is down to personal failings.

“As a result, [people with ELCI] live in constant fear of suspicion, judgement and hostility from the public, as well as from benefit assessors and even medical professionals.”

Hardy added: “Although the COVID-19 pandemic has been a catastrophe for millions of individuals and the country it has shown us that rapid change in working practices and in support for disabled people is possible.

“Employers and the government now need to respond to the needs of people with ELCI in that spirit.”

The report is the latest piece of research to come out of the five-year, £5 million DRILL research programme, which is funded by the National Lottery Community Fund, and has been delivered by Disability Rights UK, Disability Action (in Northern Ireland), Inclusion Scotland and Disability Wales.

Further funding for the report came from Leeds University Business School and Leeds Social Science Institute.

*Not their real name

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