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.
About us but not with us – Disabled People reject new ‘tick box’ national disability strategy.
Disabled people and our organisations across the country have expressed outrage at the Government’s decision to go ahead with the launch of a national disability strategy that is not a strategy, does not address key problems, does not reflect the issues and priorities of disabled people and was not developed with disabled people organisations.
We have been waiting for 10 long years for a strategy that will tackle the growing poverty, exclusion and discrimination we face and set out a transformative plan for social justice, equality and inclusion. This so-called strategy does neither of these things.
The lack of meaningful engagement with disabled people and our organisationsin the development of this so-called strategy has been so bad that a group of disabled campaigners are taking the Government to court on the grounds that consultation was so poor as to be unlawful
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.
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.
Victoria Clutton highlights the barriers to work faced by the chronically ill.
In May, I started my first ever job which I found through a wonderful charity called Astriid. My job is five hours a week, working from home, with no set hours and amazingly supportive co-workers – the holy grail of employment opportunities for the chronically ill. Even so, it’s been a huge adjustment and ongoing struggle. A few years ago I was declared fit for work despite protestations by my doctor and two other medical specialists. The experience was a year of ludicrous horror before I eventually relapsed badly enough for it to be worth re-applying for benefits. These contrasting experiences have caused me to reflect on the changes that are necessary to allow more chronically ill people to work.
Fionn critiques the benefits system’s failure to support chronically ill, self-employed people
I’m exactly the same as anyone else who’s gathered up a lifetime of training and experience. I have a lot of skills. People come to me for advice. They offer me work. They offer me money to do that work.
And I can do the work, but it makes me ill. I don’t mind; I’ve always been ill, and I love my work. I just have to stop every now and again till I get better, then I can do some more.
Now that I’m older, those pauses have got longer. I might work for five months and have to stop for another four. The trouble is that when the income stops, the bills don’t. I live alone, so I have to claim benefits.
Rebecca Boot tackles the painful subject of employment for the chronically ill.
I’m back at university, studying again after my body threw a fantastic tantrum the last time I tried it.
My university has a real focus on employment and one of the highest graduate employment rates in the country. That is great, everyone wants to be able to get a good job when they leave university right? Isn’t that the point of going?
Not really, not for me at least. I applied to Uni because I love learning and my brain likes to be busy.
But here’s the rub – I am not employable, not really, not as I am now. I have plenty of skills, I am smart, I’m a self-starter, I have a whole bunch of somewhat impressive things on my CV, I meet the person specification for a whole lot of jobs already. But I’m not employable.
Sarah Campbell asks whether chronic illness needs its own set of responses to social security, employment and social care.
I have a combination of both a chronic illness and a progressive muscle condition, offering me insight into both “worlds” of invisible fluctuating illness and visible physical impairment. Some issues are extremely different while others are shared. But so far I’ve found that accessing support is often biased toward purely “traditional” physical impairments.
As a wheelchair user, there are many access barriers ranging from getting an adequate wheelchair in the first place, to housing, transport, social care etc. But the law is generally on our side, precisely because disabled people fought for those rights over the past decades.