MINISTERS, EMPLOYERS, AND THE BENEFITS SYSTEM are failing millions of people in the UK with energy-limiting conditions, new research has found.

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 or legislation, or captured by disability assessments like the Work Capability Assessment (WCA). These symptoms are amongst the key characteristics of energy-limiting chronic illness (ELCI) – conditions that often leave people without the energy to do anything other than the most basic daily living tasks.

Published by Chronic Illness Inclusion and Leeds University Business School, the I already have a job… report states: “Despite the size of this group, employment and social security policies and systems have not considered or been designed for (their) particular needs…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 report also finds that impact of living with an energy impairment means that many people have very limited ability to work even though they want to. In addition, ignorance of ELCI and current disability discrimination legislation around reasonable workplace adjustments makes it impossible for many to engage in paid work at all.

The energy levels of those that can do some paid work vary from day to day, which means they need flexible approaches from employers, including working from home, flexible working hours and high levels of autonomy. Instead, the report finds that people with ELCI face rigid HR practices and attitudes that can damage their health.

The report’s authors also note that the rapid move to home working during the current pandemic shows that such change is possible.

People with ELCI who are unable to work – or to work full-time – face further ignorance and inflexibility in the social security system, beginning with work capability assessments. The report finds that these assessments fail to account for the key features of energy impairment or to measure the “key indicator of employability for this group – the number and unpredictability of productive hours they can work”.

The report’s recommendations include:

  • Government departments and agencies should recognise people with ELCI as a discrete sub-group of disabled people.
  • Employers must recognise they are legally required to make reasonable adjustments under disability discrimination legislation – particularly around flexible working – and include ELCI in disability awareness training.
  • The government and employers should support organisations and work ‘brokers’ who can match specific employment roles and arrangements with particular individuals with ELCI.
  • The government should adopt a targeted approach to employment policy and support for people with ELCI, discarding the ‘one-size-fits-all’ approach which fails both individuals and employers.
  • More funding for the Access to Work scheme to cover a greater range of aids, adaptations and assistance.
  • Assessment scoring for employment-related benefits should allow for the variation in hours that people with ELCI can work; and train assessors in their needs and capabilities.
  • Increased funding for social care so that people with ELCI can conserve energy for paid work by having more support with household tasks.
  • The impact of ‘Long Covid’ on those who have become ill during the pandemic highlights the importance of getting services right for people with ELCI.

Catherine Hale, co-author of 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 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, they live in constant fear of suspicion, judgement and hostility from the public, as well as from benefit assessors and even medical professionals.”

Co-author Dr Kate Hardy of Leeds University Business School said: “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. We need a new, fairer social security system. We need to build on the new working culture which has empowered many employees. Most of all, the research shows that we need more awareness around ELCI amongst the public, employers and the medical profession.

“These changes are all the more vital considering that it’s estimated that 10 per cent of people who contract Covid experience ‘Long Covid’, in which a key symptom is energy limitation. As such, it is timely to address the needs of these thousands of newly disabled people in order to sustain their lives and livelihoods”.

The report is based on in-depth interviews with 20 people living with ELCI – many of whom had highly-skilled jobs before developing ELCI symptoms – and builds on a report published last year that was based on a survey of 2000 people living with the condition. The work was initially funded through the £5 million DRILL programme (Disability Research on Independent Living & Learning) – the first user-led disability research programme in the world – and later by Leeds University Business School and Leeds Social Science Institute.

* Read I already have a job… getting through the day here.

* Source: Chronic Illness Inclusion