Chronic Illness Inclusion

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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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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Chronic Illness Inclusion has responded to the Department for Health and Social Care’s inquiry into Women’s health and well-being in England.

To ensure that our organisational submission reflected the concerns of women with Energy Limiting Chronic Illnesses we launched our own survey.

Over one thousand women responded, with hundreds giving details of the difficulties they have experienced in getting diagnoses, treatment and support. They reflected a culture of disbelief and dismissal. Many of the responses were heartbreaking to read. Over the weeks to come we will begin to share some of these responses so that women’s voices, which are too often silenced, can be heard and amplified.

Lead author, Catherine Hale, writes:

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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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