A Multiple Sclerosis sufferer who can’t walk, sleep or balance claims he was told by the government “he’s fit to work”.
Simon Cook says just a few years ago he was an energetic man in his mid-fifties, a father-of-three and keen cyclist, with a full-time job and an active social life.
But today he says he walks with a stick, feels permanently exhausted, and is told by friends and family he has visibly aged.
Instead of being helped back to work or given benefits, he claims he’s been told to stop trying to work as a photographer, seek Jobseekers’ Allowance and find something else to do.
He is now having to turn away the little work he was able to do while he waits six months for an appeal.
He says his fight is making him more ill and driving him towards poverty and he doesn’t think he’s alone.
He’s compared his plight to the storyline in the Ken Loach film I, Daniel Blake, in which a 59-year-old widowed carpenter has a heart attack, leaving him unable to work, but British authorities deny Blake’s benefits and tell him to return to his job.
Simon, 57, told Cornwall Live: “But if the rapid and overwhelming attack on my physical health might be likened to taking a bad fall, the treatment I am receiving at the hands of the benefits system is akin to being kicked in the teeth when I’m down.”
A DWP spokesperson: “We will always support someone with their job goals and in a way that suits their circumstances.
“We are providing tailored support to Mr Cook and have offered him additional help through a specialist programme.”
Let me take you back a couple of years, to the autumn of 2016. From nowhere, I began to have problems with balance.
When trying to carry out everyday chores, shopping, or working, I experienced involuntary lurches; I was stumbling about like a drunk.
Within a short time, and following a series of tests, my condition was confirmed as Primary Progressive Multiple Sclerosis (PPMS for short).
As anyone with experience of this neurological disease will know, it’s a life-changer – particularly in terms of being able to earn a living.
I’ve always worked. After a spell in agriculture as a young man, I retrained and have been a professional photographer for more than 30 years. It is a job I love and enjoy and wish I was capable of continuing with today.
But PPMS has left me with major balance issues; I am reliant on a stick because I cannot stand or walk without support. To give some idea of how it feels, imagine standing or sitting on a moving tube train that never stops for you to get off.
In addition to mobility issues, I have general exhaustion – known as MS fatigue – which is much like having jet-lag, but 24/7. I also suffer spasms in the night that wake me, as my right leg kicks out like a centre forward in front of an open goal.
This sleeplessness has contributed to a range of cognitive issues, including an inability to concentrate properly for more than a few minutes or remember things I have just seen or heard.
My spelling, while never great, has seriously deteriorated, and I now find spell-checker highlighting even the most basic words I’ve typed. All this has happened in a very short space of time.
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So, those are the brief implications of this condition. I am coming to terms with the situation and do not seek sympathy. But I wish I were able to work as I once did, to earn a living, and to contribute my taxes as I have for so many years.
Soon after diagnosis, I was advised to claim Employment and Support Allowance (ESA). This was an upsetting experience in itself because it forced me to recognise I was no longer fully fit to work full-time.
PPMS is an auto-immune disease which attacks the brain and spinal cord. It has left me unable to carry a weighty camera bag or to hold a camera steadily.
Some of my regular clients have been incredibly sympathetic and accommodating, helping me with moving equipment and props. But this arrangement, while kind, is unsustainable.
Having paid tax and national insurance for all these years, I believed in the contract agreed by citizen and state: that in normal times we contribute to the system and in times of need we will be cared for. In 2018, that arrangement is failing people all over the country. And it is failing me.
After a few months, I was informed that to continue receiving ESA I would need to undertake a medical assessment to judge my ability to work full time.
This would be conducted on a points system; anyone scoring less than 15 points is deemed fully fit for work.
In the meantime I was to receive £73.10 a week. This arrangement seemed entirely understandable and acceptable to me, but it took eight months of calls and visits in person to get the Department of Work and Pensions (DWP) to arrange an appointment.
In November 2017 – more than a year since becoming ill – I attended the appointment.
However, I was surprised to discover it was not a doctor I was going to see, but a physiotherapist. When asked, he said he had attended a training course and could carry out an assessment “as well as any doctor”.
He was cordial, asked a few questions, and allowed me to explain the life-changing nature of my illness. He took a few notes, photocopied the medical evidence I provided from my neurologist and MS team, and the assessment was soon over.
I confidently thought the consultation was a mere formality, and waited to hear the result.
But in January of this year – two months after the appointment – and still having heard nothing from the DWP, I visited the benefits office.
The staff there, knowing how long I had been waiting, were surprised, and offered to make enquiries. Later, the DWP called me at home to say no one had yet looked at the physiotherapist’s report.
The following day I had another call from the DWP telling me my assessment had been reviewed, that I had scored zero points, and was therefore deemed fully fit for work. As a consequence, my ESA was stopped and I needed to sign on for unemployment benefit and look for work.
Despite explaining I had worked for 30 years as a photographer and ran my own business, I was told the decision was final and I must sign on and look for work.
I was left genuinely speechless by this verdict. Significantly, it was I believe Maximus, a private company, with profits to secure, which undertook my assessment – not the NHS.
In my able-bodied days I heard catch phrases from the government like “helping the disabled back to work” and assumed there was a proactive programme to do just that.
The last thing I was expecting was to be told to stop doing the little work I could and look for another job. The trouble is that a job for someone in my condition simply does not exist.
I of course believe those who can work should work and it’s certainly the case that some people with certain disabilities can manage to continue working full time. I only wish I were one of them.
I love my job and my best hope is to use the specific skills I have to earn what I can, while I can. The reality is there is no likelihood I will be offered another job because my condition renders me unreliable because I need regular rest periods, my memory is poor and I can no longer spell or count with any degree of accuracy. NB: This article has been fully checked by an editor.
Since the release of Ken Loach’s film, I Daniel Blake, we are all now aware of the frustrations of a system unfit for purpose and run by uncaring, unthinking jobsworths.
At the same time, half a billion pounds has been given to private companies to assess the fitness of those sent for inspection for ESA and Personal Independence Payment (PIP) and a further £39m spent by the DWP trying to defend decisions to strip benefits from the sick and disabled.
By January 2016 (the latest figures available) the bill for ESA and PIP assessments had reached £579m of taxpayers’ money flowing into shareholders’ pockets at the expense of the public purse, the poor and disabled.
Since the shock of diagnosis, I have felt little self-pity regarding my health an, have actually prided myself in resolving to pick up the pieces, get on with it, and make the best of a condition with no cure.
The last thing I expected was to find the DWP actively making decisions designed to leave me facing permanent unemployment.
This content was originally published here.