Changing society’s reponse to energy limiting conditions

Results from a survey by Disability Rights UK and Chronic Illness Inclusion

Disability Rights UK and Chronic Illness Inclusion are pleased to present the results of a survey of 1,710 people living with energy-limiting chronic illness (ELCI).

The high volume of responses to our survey provides us with a mandate, as well as a roadmap, for social justice and change from this large, but often neglected, group of disabled people.

Our findings clearly show that the vast majority of disabled people with ELCI encounter socially constructed barriers to wellbeing and participation in society, beyond the impact of their symptoms or impairment. Many of the barriers are unique to this group.

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ELCI, cognitive dysfunction and disability benefits

Chronic Illness Inclusion responds to the Department of Work and Pensions’ Green Paper on Health and Disability.

 

Summary: disability benefit assessments must be redesigned to account for the cognitive fatigue and dysfunction that limits work and daily living with ELCI.

In October CII submitted a comprehensive response to Shaping Future Support, the government’s proposals on the future of disability benefits. We also contributed to a response by the DPO Forum, a coalition of Disabled People’s Organisations, of which CII is a member.

Both of these responses addressed key concerns with the systems for PIP and ESA (and its equivalent under Universal Credit) that affect all disabled people. We responded to proposals about advocacy support and for making the claims process less burdensome. We especially highlighted the lack of any mention of the need to alleviate poverty and destitution among disabled people who are too unwell to work or are excluded from employment through discrimination. We argue that the level of financial support for disabled people in the social security system must be urgently and substantially increased.

In our own response we also highlighted an issue that particularly affects disabled people with ELCI and other energy limiting impairments. That is the fact the assessment criteria, known as the ‘descriptors’, used by both PIP and WCA are not designed to capture and account for our lived experience of impairment and disability. This is widey known.

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Making employment work for energy-limiting conditions

Chronic Illness Inclusion has influenced a report on disability employment by the Work and Pensions Committee

In April this year Catherine Hale gave evidence to a committee of MPs. She spoke about the measures needed to create more job opportunities for people with energy-limiting chronic illness (ELCI).

A graph showing the gap between the number of disabled people in work and those out of work

Source: Disabled people in employment, Briefing Paper 7540, House of Commons Library, May 2021

In July, the Work and Pensions Committee, chaired by the Rt Hon Stephen Timms, published its report into the disability employment gap. The disability employment gap is the difference between the proportion of disabled and non-disabled people in employment. It currently stands at nearly 30 percentage points.

The Committee based its recommendations on evidence from a number of experts and charities. The report includes recommendations on the collection of data about disabled people in work; employment support and Jobcentre Plus; the Access to Work scheme; the impact of Covid-19 on disabled people in work; and the disability benefits system, and more.

The fact that CII was included among the large national charities giving evidence was a big step forward for the chronic illness community. ELCI, or energy impairment, has not previously been considered by politicians or policy makers as a distinct group of disabled people, or ‘impairment group’,  with specific needs.

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Long Covid, ELCI and workers’ rights

Chronic Illness Inclusion responds to a report on workers’ experiences of long Covid

The recent Trade Union Congress (TUC) report on workers’ experiences of long Covid marks a milestone in our response to the Covid-19 pandemic.

The TUC’s survey of more than 3,500 workers finds that a third had symptoms of long Covid for more than a year. It is now clear that long Covid can be a life-changing illness. For some, it is creating enduring disability.

Just as importantly, this report is the first time we have talked about disability equality in relation to long Covid. The focus until now has rightly been on improving medical understanding and treatment of the condition. But the time has come to look beyond fixing individual bodies, and focus on changing society’s response to long Covid, Addressing employers’ legal duties towards disabled workers is a key place to start.

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Remote access, ELCI and co-production

Inclusive co-production means using remote access technologies to reach some groups of disabled people in their homes if needed.

Chronic Illness Inclusion is proud to feature in an exciting new open access volume from Policy Press on Covid-19 and co-production.

“Groups most severely affected by COVID-19 have tended to be those marginalised before the pandemic and are now being largely ignored in developing responses to it,” say the editors of Covid-19 and co-production in health and social care research policy and practice.

For this ‘rapid response’ publication, Catherine Hale and Alison Allam were invited to share learning from the Chronic Illness Inclusion Project on digital research methods designed to include hard-to-reach communities. Their contribution: ‘A place where we could listen to each other and be heard:’ Enabling remote participation spaces for research and co-production among disabled people with energy impairment beyond COVID-19 forms chapter 14 of Volume 2.
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What are energy impairment and ELCI?

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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