Voices from the edge

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.

Disbelief

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.”

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Making employment work for energy-limiting conditions

Chronic Illness Inclusion has influenced a report on disability employment by the Work and Pensions Committee

In April this year Catherine Hale gave 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).

A graph showing the gap between the number of disabled people in work and those out of work

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.

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Government Fails Disabled People Again

About us but not with usDisabled 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 organisations in 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  

A spokesperson for the DPO forum said:

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Disability employment gap – CII gives evidence

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.

“I already have a job… getting through the day”

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.

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Duty of Care and the DWP

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).

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Second Class Citizens

Stef Benstead discusses her new book on welfare reform and the treatment of disabled people in austerity Britain.

#IsItOk that disabled people have written books about the harm that the UK government is doing to us?

In the modern hegemony of identity politics, a person is only allowed to comment on something if they have direct experience of it. So one answer is that yes, it is okay that sick and disabled people write about issues affecting them, because in fact they’re the only people who have the right to do so.

But the reality is that, whilst it is okay that sick and disabled people write about their experiences as sick and disabled people, it is not okay that those experiences are so overwhelmingly negative in breadth and depth. It’s one thing when one part of your life goes wrong and everything else is fine: you can probably manage. It’s quite another when every part is wrong: your health, your house, your income, your medical care, your local area, your support to live in your home, your support to get out of your home.

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Changing the system so that more chronically ill people can work

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.

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Department for Snakes and Ladders?

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.

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On not being believed

Wheelchair Vista on the lasting effects of being doubted.

Many of us with long term conditions struggle to accept that we can no longer live life as we used to. It took me almost ten years.

I carried on working for longer than I should. A resident at the care home I managed said; “It’s doing you no good keeping on working. Why don’t you reduce your hours or stop altogether?” She saw that I could not stand for long without leaning against a wall. Staff noticed that I always relied on the lift and was often in urgent need of the loo.

When I had time off work for minor surgery it had to be extended due to massive bruising sustained in a car crash. This was soon followed by investigations for IBS and a referral for knee surgery, which culminated in my employment contract being ended.

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