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.
CII were recently invited to give evidence to the House of Commons Work and Pensions Committee. This is the first time that evidence has been specifically sought from people living with energy limiting chronic illness – ELCI.
You can watch our Director, Catherine Hale giving evidence on YouTube.
Catherine’s speech begins approximately 1 hour and 7 minutes into the recording.
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.
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.
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.