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.
The ‘I already have a job…’ report, by Chronic Illness Inclusion and Leeds University Business School, 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.