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.
The recent inquest into the tragic death of Philippa Day has once again, shown the inadequacies and cruelty of a benefits system that damages the mental health of claimants.
The disability benefits system engenders a culture of systemic disbelief towards claimants, creating a hostile environment towards the very people it is supposed to support. Reports of claimants who complete suicide or starve to death as a result of traumatic assessments or benefit sanctions do not appear to have prompted any change in policy or procedure by successive ministers in charge of the Department for Work and Pensions (DWP).
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.
CII has written to the BBC to explain why their TV programme caused hurt and distress to disabled people with invisible chronic illness, as well as other hidden impairments.
The Chronic Illness Inclusion Project’s letter to the team behind the controversial episode in the ‘Crip Tales’ series, ‘The Real Deal’ (BBC Four) is co-signed by other Disabled People’s Organisations and service user and patient-led organisations.
The letter asks for constructive dialogue with the team, and others at the BBC, to ensure disabled people with non-visible impairments are portrayed in a positive light in future programming.
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).
CII is among a huge number of disabled activists and Disabled People’s Organisations calling for NHS England to respect our Human Rights
The full letter, published by Disability Rights UK, reads:
“The NHS is built on the principle that we are each equal in dignity and worth. It expresses our commitment to protect one another’s right to life and to health, no matter who we are.
We recognise that the NHS faces unprecedented pressures. We know that its staff will have to make difficult decisions about who gets treatment and care and who doesn’t. We understand that they will have to judge whether people will benefit and we know that people’s existing health will be taken into account.
Stef Benstead discusses her new book on welfare reform and the treatment of disabled people in austerity Britain.
#IsItOk that disabled people have written books about the harm that the UK government is doing to us?
In the modern hegemony of identity politics, a person is only allowed to comment on something if they have direct experience of it. So one answer is that yes, it is okay that sick and disabled people write about issues affecting them, because in fact they’re the only people who have the right to do so.
But the reality is that, whilst it is okay that sick and disabled people write about their experiences as sick and disabled people, it is not okay that those experiences are so overwhelmingly negative in breadth and depth. It’s one thing when one part of your life goes wrong and everything else is fine: you can probably manage. It’s quite another when every part is wrong: your health, your house, your income, your medical care, your local area, your support to live in your home, your support to get out of your home.
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.
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.