Our latest policy report on ELCI, employment and social security
The ‘I already have a job…’ report, by Catherine Hale (CII), Stef Benstead (CII), Dr Kate Hardy (Leeds University Business School) and Dr Jo Ingold (Deakin University), 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).
Despite ELCIs affecting almost 5 million adults in the UK, these people are hidden within disability-related policies because their lived experiences of illness and impairment is widely misunderstood, often discredited, denied and disbelieved.
Lack of knowledge about ELCIs and how reasonable adjustments should work, make it impossible for people with these conditions do paid work. The rapid move to home working during the pandemic shows that such change is possible. It is imperative that employers continue such beneficial practices.
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Our Director Catherine Hale and Dr Anna Ruddock recently took part in an event organised by the School of Health Sciences at City, University of London.
In this seminar they share findings from the Chronic Illness Inclusion Project. Set up in 2017 this was a user-led research action project aiming to give a voice to those with an invisible disability. Fatigue and limited energy were found to be the most common restricting factors for those with a variety of chronic illnesses, but were not often recognised as impairments and were often treated dismissively.
You can watch the event on YouTube
Introducing the key features of energy-limiting chronic illness (ELCI) and energy impairment and why we use these terms.
Energy-limiting chronic illness (ELCI) is an umbrella term to describe long-term health conditions in which severe fatigue – or rather energy impairment – is a key disabling feature. ELCI and energy impairment are terms that have come out of our participatory research and they are important to our advocacy work as a Disabled People’s Organisation.
Through our multiple surveys and focus groups among the chronic illness community, we found that, while different diseases have their own unique clusters of symptoms that impact differently on each person, the predominant and most restricting feature of many chronic illnesses is fatigue or limited energy, as well as pain. The term we use for this is ‘energy impairment’.
There’s a reason we call it energy impairment, and not just fatigue.
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Catherine Hale spoke at It’s Our Community, a conference on social care reform. Catherine explained the high prevalence of energy limiting conditions and the psychological impact of not being believed.
I was a social care user back in the 1990s. I’ve had my chronic illness for over three decades and when it was really acute, and I couldn’t wash feed myself, or go to the loo, I had a care package. But later years when things were less severe, my needs were harder to grasp because my impairment was invisible and poorly understood. The social care system completely let me down. As a disabled lone parent I had no support.
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Chronic Illness Inclusion spoke at an event hosted by Disabled People Against Cuts to discuss the need to reinvigorate the social model of disability.
This blog piece follows a discussion on the 6th of July 2020 in response to Ellen Clifford’s new book ‘The War on Disabled People’ from Disabled People Against Cuts (DPAC) about ‘Reinvigorating the Social Model of Disability’, to which Catherine was invited. You can watch Part 1 here and Part 2 here.
We completely agree with Ellen Clifford that the social model of disability is intended to be a tool for uniting disabled people to take collective action. Now is a time for such unity if ever there was one. The global response to COVID-19, on top of ten years of austerity in the UK, has shown just how little disabled lives matter to the political classes. However, people with chronic illnesses have struggled to unite with other disabled people under the banner of the social model.
Catherine founded the Chronic Illness Inclusion Project as a programme of action research aimed at developing an advocacy movement for people with chronic illness. The project discovered that, although people with what we call ‘energy limiting chronic illnesses’ (ELCI) are potentially a big constituency of disabled people – 32% of working age disabled people in the UK experience impairment of stamina, breathing or fatigue – there is a disconnect between us and the rest of the UK Disabled People’s Movement (DPM).
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Anna Ruddock writes about some options.
On the face of it, organisations are getting better at facilitating “flexible working”. Inevitably, some are moving faster and more innovatively than others.
Some of those others have yet to acknowledge that flexible working is an employment right that has been enshrined in UK legislation since 2014 rather than a reward for productivity. Nevertheless, you’d struggle to find an office-based organisation that hasn’t realised that flexible working is something they need to be thinking about.
So far so things-are-improving. That said, it’s a very limited definition of “flexibility” that is incorporated into most flexible working policies. What it usually means is a policy to allow employees to work outside the office. Which is important for those who benefit from it, including disabled people with energy limiting chronic illnesses (ELCI*), like me, who are well enough to work part-time but cannot physically spend all of that time in an office.
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Fran Halsall on the consequences of a late diagnosis and living with multiple chronic conditions.
Humans do not cope well with uncertainty, yet I am forced to confront it every day. People like me, with multiple diagnoses, can find that each new one brings not only clarity but also an extra layer of complexity that can be hard to live with.
When trying to explain my medical situation there are six diseases/disorders to choose from. Yet I often talk about multiple sclerosis first, despite the fact that on any given day it might be the least of my problems. There are reasons for this: people have heard of MS and it is taken seriously. It is an easy shorthand for establishing why my life has not turned out as originally planned.
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Catherine Hale advocates breaking away from a medical model of chronic illness.
A response to Mo Stewart – Part One Thank you, Mo, for this very thoughtful and stimulating critique of Reclaiming Chronic Illness: an introduction to the Chronic Illness Inclusion Project. Two really important questions you raise stand out to me:
1. As you say, the meaning we attach to the term “chronic illness” in this project does not reference medical definitions but considers chronic illness as a social identity. Does that make it invalid?
2. And in my struggle to develop a more precise language, such as “energy-limiting chronic illness” or “stamina impairment”, am I creating unnecessary divisions and excluding people who share a common cause, especially people with chronic pain conditions? Why can’t we simply unite under the umbrella of disabled people and fight our common oppression, you might ask?
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Victoria Clutton highlights the barriers to work faced by the chronically ill.
In May, I started my first ever job which I found through a wonderful charity called Astriid. 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 despite protestations by my doctor and two other medical specialists. The experience was a year of ludicrous horror before I eventually relapsed badly enough for it to be worth re-applying for benefits. These contrasting experiences have caused me to reflect on the changes that are necessary to allow more chronically ill people to work.
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Leonora Gunn discusses society’s role in improving the lives of the chronically ill.
The big idea of the social model is to distinguish between ‘impairment’ and ‘disability’: ‘impairment’ is someone’s condition, ME (myalgic encephalomyelitis, or ‘chronic fatigue syndrome’) in my case, whereas ‘disability’ describes the way that impaired people are oppressed and excluded from society on top of their impairments. This challenges the assumption that disabled people need to be ‘fixed’ or changed to fit in to society, and suggests that society needs to be changed to include everyone.
This might seem like a funny thing for someone like me, with a chronic illness, to believe. Surely illnesses, like ME, need ‘fixing’? And how can it be society’s fault that I am ill?
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