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.
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.
Reading through the free-form responses to our Women’s Heath Survey has been a heartbreaking task. The stories from women throughout England were both shocking, but unsurprising in equal measure. Shocking because of the difficulties in getting a diagnosis, (and these were about pre-pandemic experiences) either because of a GP refusing to take symptoms seriously or because of a lack of suitable specialist clinics. Unsurprising, because these are stories I hear daily from my friends and colleagues in CII. Why do women with chronic pain in Suffolk not have accesses to the same services as women in London? Why can you get a diagnosis as an adult for EDS if you live in one county, but not if you live in the next-door county?
We received 1,871 responses that covered 6 different aspects of the difficulties that women with chronic illnesses face. The overall theme was that of medical ableism, a failure to understand our conditions or listen to our experiences.
These quotes are the voices of those women, they deserve to be heard.
Being disbelieved seems to be a rite of passage for so many women with chronic illness and/or chronic pain. These are just a few of the responses that were given to our question about the impact of being disbelieved;
“Being disbelieved makes you question everything you know about yourself and your conditions and leads into a dystopia which undermines everything in your life.”
“I have developed anxiety about being believed & taken seriously especially with professionals, I struggle with a sense that I am seen as worthless by society in general. I have become apologetic and unassertive.”
Disbelief has a very negative impact on psychological well being;
“I used to be extremely independent and I’m finding my self-esteem has gone down a lot since I’ve needed help. There are such a huge amount of physical obstacles in the way when you have to use a mobility scooter or a wheelchair, it makes you feel that society doesn’t want you around and sometimes it makes you feel like you don’t want to be around.”
Self-blame is also common;
“It took a long time and a lot of heartache to get my head around the fact that my life didn’t look like I thought it would, and the fact that I was constantly being gaslighted by medical professionals and especially the DWP meant that I did and still do struggle with the idea that this illness is somehow my fault.”
Chronic Illness Inclusion has influenced a report on disability employment by the Work and Pensions Committee
In April this year Catherine Halegave 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).
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.
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.
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. » Read more
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.