Last week I went to the House of Lords, something I found quite intimidating. Thankfully I was supported by a member of Rethink campaigns team in giving oral evidence to a Parliamentary Review. Chaired by Lord Low of Dalston, the Review was set up to assess the likely impact of a proposed benefit cut. The cut would affect the amount of money awarded to people claiming Employment and Support Allowance (sickness benefit) who have been put into the Work Related Activity Group (WRAG) (i.e. they are expected to attend appointments or carry out tasks to improve their “employability”). Currently people in the WRAG group receive £102.15 a week; the proposed cut, planned for April 2017, would see that figure drop by £30 a week. My role was to give Lord Low a sense of how hard it is for those of us with mental health problems to cope with the benefits system and with job-seeking, and the likely impact of such a heavy-handed cut on claimants’ mental wellbeing.
Yesterday the report on the Peers’ findings, Halving the Gap, was formally launched at Westminster and I was very pleased to be asked to give a five minute talk on the issues. The report is hosted on the charity Mencap’s website, testimony to the input of many major charities in supporting the submission of evidence from disabled people.
Why don’t people with mental health problems just get a job?
We can struggle with a whole range of difficulties – our thoughts, our emotions and our behaviour can all be affected and that’s certainly true of my own experience of living with bipolar disorder. At some point, most of us have trouble with communication such as emails, phone calls and letters and with cognition, which is the ability to think clearly and remember information.Not being able to cope with these tasks can increase our anxiety and diminish our self-esteem. We also struggle against the effects of stigma discrimination.
We know that disabled people want to get out from under the benefits system and find meaningful work – but it has to be work that fits around their disability. There are huge barriers out there for those with lived experience of mental distress. People with very stigmatising diagnoses like personality disorders and in particular psychosis and schizophrenia are especially disadvantaged.
When I first claimed ESA three years ago I actually had a job managing 13 people but I had come to a point where I was just too ill to do it any more. After seeing evidence from Occupational Health and my consultant psychiatrist my employer tried to end my contract as kindly and painlessly as possible. Ironically, during this process I was called to Work Capability Assessment and placed in the WRAG group. I appealed using the information from my psychiatrist and my employer and was subsequently placed in the support group.
I loved my job and losing it was a huge blow. It’s probably best that back in 2012 I didn’t know that years later I’d still be unable to hold down a “normal job”. I can just about work two days a week in my new career as a self-employed mental health consultant. It can be very difficult to manage anything constructive within in the extreme rapidity of my mood cycles. Just to give you an idea, between Friday and today my mood has switched from high, to desperately panicky, to actively suicidal, to milder depression and back to high again. It’s an unpredictable roller coaster. Self-employment is the only way to work around these fluctuations.
I take a combination of 5 different drugs daily to keep me as well as possible. Some of them are very sedating and I sleep up to 13 hours a day. For me, 10am is an “early start” and I had to tweak the time I took my meds just to be able to get up. Doing something that requires a lot of energy, like speaking to you today, will require the same amount of recovery time later.
Much as I’d like to – and I do torment myself sometimes by reading job adverts – I just can’t work for an employer right now. I can’t commit to being at a certain place and time every day, or indeed to turning up at all if my health deteriorates. There is of course the Equality Act requirement to make reasonable adjustments, but my condition is so volatile that I just can’t see how any employer could accommodate that.
It’s taken a lot of time to build up my business and it still doesn’t earn enough to live on. When I first dipped my toe in the waters of self-employment, DWP rules made gaining work experience harder, not easier. I began by doing little bits of activism with Rethink Mental Illness and other charities, and got paid £50 for each event. The permitted earnings for those on ESA are £20 a week. So I could only do one activity a month or lose my benefit, and even then it was difficult for payroll to authorise three cheques of £20, £20 and £10 across three weeks. The whole thing made no sense.
Now I’m established as self-employed I sometimes have to make a judgement call about whether I am well enough to work. In the spring I became too ill to manage my emails, diary and invoicing, so I put myself on sick leave and claimed ESA. During that 3-week period I received no fewer than 32 sides of information I was supposed be able to digest – when the whole reason I was claiming was that my cognition had deteriorated to the point when I couldn’t handle correspondence. I pretty much had no idea of what I was supposed to be doing or what I was being told, and I found this terrifying, wondering what the DWP would do if I had got something wrong.
It’s become a darkly comic joke in the mental health community that just the sight of infamous DWP brown envelope is enough to generate fear all on its own. I found one on my doormat yesterday and had to force myself to open it. My heart was pounding and my palms were sweating – but it was just notification of my £10 DLA Christmas bonus!
Mental health service users are genuinely sick and in many cases, genuinely disabled. I’ve had bipolar since I was 11, and I’m now 41. It’s not going anywhere. It’s a real and devastating disability that affects my work, relationships and parenting. You simply cannot improve people’s chance of gaining employment without an enabling benefits system, and enabling work cultures. DWP structures throw the responsibility to find work back onto people who are multiply disadvantaged by their symptoms, by diagnoses, and by stigma and discrimination, with no regard for the impact of those factors. Pushing them into poverty by reducing benefits would add another layer of disadvantage.
People in the WRAG group already speak of being feeling bullied and hounded as they are told to attend courses or events with no understanding of their condition and little obvious benefit. A swingeing cut to ESA would further increase people’s fear, anxiety, and depression paradoxically damaging their fitness to work as well as their ability to understand work related activity.
I think what most disabled people want is to be treated with dignity and respect across government departments and workplaces. We already have long way to go, so I will end with a plea that we don’t allow things to be made worse by punitive benefit cuts.