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.

1. The benefits system must take exhaustion and pain seriously, and recognise these symptoms as barriers to activity and work. The fit-for-work assessment mentions staying conscious exactly once and explains that falling asleep “just because you are tired” does not count as trouble with staying conscious. Pain is mentioned just twice and only associated with the activities of walking or sitting. The mental capabilities section has only two questions: one asking if you are anxious or scared in social situations, the other asking if you frequently upset people by behaving inappropriately. There is no consideration of the cognitive impairments associated with exhaustion (brain fog, concentration difficulties, sensory overload, etc). Changing this should be a priority because recognition of our limitations is a prerequisite for any practical discussion of work. Such measures would help shield the sickest among us from the dangers associated with being inappropriately forced into work.

2. The implicit assumption that work is only meaningful if it takes 16 hours a week must be challenged. This assumption is encoded into how the system works and it’s deeply unhelpful for the chronically ill. When I was declared fit for work my assessor stated that this should mean only for a few hours a week and from home. Then I was sent to the job centre, where it was made clear that work only counts if you are working 16 hours, or more. This caused a number of problems. Ironically, it’s only because I’ve been declared “completely and totally unable to work” – and put in the ESA support group – that I’m now allowed to work. That’s stupid. The system should be able to support someone who is well enough to do a some work without automatically rounding their capabilities up to standard part time hours.

3. The systems around work and benefits must make it safe to attempt work as well as to fail in the attempt. It is difficult for many of us to predict how well we will adapt to work, either because we’ve not had a job in a long time (if ever) or it’s the first time going back to work since becoming ill. In the current system the costs for attempting work, or being wrong about whether you can cope with a particular job, can be huge. It is a double risk, with the potential to undermine both health and finances. Will your benefits and support be removed if you work? Will your earnings replace that income? What will happen if you lose income and support? If you can’t manage the work, how long will it take to reinstate benefits and support? Do you have enough savings to cover that period?

Given that chronically ill people are more likely to be living in poverty and have no savings, the consequences of a period without income can be disastrous and homelessness can be a real risk. If you want more chronically ill people to work, lower the stakes to something reasonable. Automatically reinstate previous benefits and support for disabled and chronically ill people who leave work, where the work was for a limited enough period that they can’t be expected to have built up savings (e.g. 1-2 years). Ensure that support doesn’t disappear unless a person’s earnings exceed a threshold where they can afford to pay for support, or even offer a period of increased support while a person is adjusting to work (e.g. extra home help).

4. The Job Centre must update their procedures to take into account varied ways of working (e.g. the gig economy, self employment, working over the internet). My favourite story from when I was declared fit for work is one that illustrates my point perfectly. I found a job online doing data entry, although the pay was for less than minimum wage and the company was based in India. After some discussion with my advisor at the Job Centre it transpired that she could not advise on the legality of such employment but said that I should take the job and they’d decide whether to prosecute me afterwards. I refused. Another idea I had for making hand-knit items to sell online was dismissed because the system only recognises income paid within two weeks of the work occurring, which I couldn’t guarantee. The world of work is changing; if the Job Centre is meant to assist us then they need to accommodate the full range of work options.

5. Self-employment needs to be made more accessible and better integrated into the benefits system. I explored self-employment during my “fit for work” period and admit that I found the whole thing completely impenetrable. Even a shockingly expensive call to HMRC didn’t provide answers to my questions, as the person I spoke to had clearly never dealt with someone like me before. The Job Centre recommended a charity that helps with setting up your own business, however they would only offer assistance if you planned to work for 16 hours, or more, so I wasn’t eligible. Low-hour self-employment is an obvious option for the chronically ill, e.g. making items, consulting, freelancing, etc. but for me, and probably many others, the complexity of the tax system and lack of integration with the benefits system is a barrier. While you can receive certain benefits while being self-employed, it is always assumed that you are either working at least part time hours or you are completely unable to work. Updating the tax and benefits system to support low-hour and low-income self employment, and offering free support to set up your business and taxes to those currently unemployed, has the potential to help everyone who is on social security benefits, not just the chronically ill.

6. Reinstating the Independent Living Fund and more funding for Access to Work, or similar schemes, is vital for facilitating employment. The cold, hard, economic truth is that employing disabled and chronically ill people often has costs above and beyond those involved in employing a healthy person. We may need adaptations, flexible and/or non-standard work hours, the option to work from home, specialist equipment, more sick leave, more support, changes in company policy and procedures. If companies are to be encouraged to employ chronically ill and disabled people, then they should be paying as little of that cost as possible. The Independent Living Fund and Access to Work once absorbed many of these costs. However, in the former case, the scheme was closed, and, in the latter, it was subject to funding cuts. The Government’s insistence that they are “helping” more disabled people into work, while cutting financial support, would be hilarious if it weren’t so tragic.

Victoria has had ME for 20 years and has recently graduated with a Maths and Computer Science degree from the Open University. She is currently juggling her health, her first job and as much activism as she has the spoons for.

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