Several years ago Julie McCaffrey, 36, was a young employed mum, balancing her position as an administrator with looking after her son, Lee. She enjoyed her position at the children’s centre she’d worked at since the age of 18 and had a comfortable life in the bungalow she shared with her partner and son.
All that changed however after she started experiencing inflammation and discomfort in her left arm following a flu vaccine. Her condition worsened until she was no longer able to use her arm at all and was in perpetual pain along the left side of her body.
Doctors diagnosed a neurological condition and eventually, unable to carry out simple duties, Julie, from County Fermanagh in Northern Ireland, was dismissed from employment.
She managed fine on benefits until recently when the amount she got was cut by over £700 a month. Her mobility car was also taken away leaving Julie, who also has a five-year-old daughter, Rachel, practically housebound.
Julie lives in a pretty isolated area and there isn’t even a shop nearby, she has to send her son to the supermarket to get food when he comes home from school, otherwise, they wouldn’t be able to eat, but at the moment they’re living hand to mouth because her disability benefits have also been discontinued.
Julie was in excellent health until October 2009, when she had a vaccine against Swine flu. There was an eruption of the potentially deadly virus at the time, and because she has asthma, she wanted to take precautions. She didn’t think she’d have any problems as nobody had discussed the possibility of serious side effects, she simply thought she’d have the shot and that would be it.
But within moments of being given the vaccine, Julie experienced inflammation and redness in her left arm. The next day, when her arm was still swollen and red, she went to see her GP who told her it was just a local response to the shot and would improve in time.
But it didn’t and the swelling didn’t go down and the pain proceeded to get worse and worse, and Julie started experiencing shooting pains along her arm, spreading from her shoulder and struggled to use it properly, and it hurt when she attempted to hold anything or pick it up or even to drive.
Over the next few months, she kept going back to her GP who prescribed painkillers and sent her for physiotherapy, but it did little to help long term, and she kept telling her GP that it must have been the vaccine that had caused it, and that she’d never had any difficulties with her arm before, but he maintained it was a pinched nerve and nothing to do with the vaccine.
Julie was sent to see a neurologist who diagnosed her with the pain condition Fibromyalgia and Functional Neurological Disorder (FND), which causes weakness and abnormal patterns of movement in limbs as well as postural and gait issues, seizures and sensory difficulties.
She carried on at work for as long as she could because she enjoyed her job, but after having her daughter Rachel five years ago the pain in her arm spread all along the left side of her body and became intolerable. She required help bathing and dressing her daughter and could no longer carry out her responsibilities properly at work.
Julie had also split from her partner so was now a single mum and aware that she needed to provide for her kids. But in October 2015, she was fired from work after being declared unfit to continue in her position, although they did try everything they could to help her stay in her job, making adjustments to her work station and getting occupational health in to keep an eye on her, but in the end, she just couldn’t physically do the work any more.
Julie was deemed qualified for Disability Living Allowance (DLA) with an enhanced rate of mobility, which meant she could get a Motability car, and Employment Support Allowance (ESA), and Julie managed fine on the £559 in DLA she got a month and the £382.00 ESA she got fortnightly after becoming unemployed.
It was just enough for bills, travel and food for the three of them, but when she was notified that she was being shifted over to the new Personal Independence Payment benefit in July last year, everything changed. She had to attend an assessment and was told afterwards that her payments would be lowered to £229 in PIP and £314 a fortnight in ESA, which was much less.
The enhanced mobility component was also eliminated which meant her Motability car was taken away. She couldn’t drive an ordinary vehicle any more and depended on it to take her daughter Rachel to school and back, go to the shops and to see her family. She also needed it to attend medical appointments and physio too so she was totally stuck without it.
Julie had been using some of the money to finance holistic physiotherapy too, which isn’t accessible on the NHS and which she says was helping a lot with the pain. So, she appealed against the ruling by the Department for Communities (DfC), Northern Ireland’s equivalent of the UK’s Department for Work and Pensions, and had to endure a second assessment in February this year.
While at the assessment, she was asked if she could walk three kilometres once every three or four weeks and she said that she could, even though it’s excruciating, it’s part of her rehab because it encourages her to swing her arm to keep it active, but because of this she wasn’t given enough points to qualify for any PIP at all, which is totally wrong.
This was despite her neurologist writing a letter outlining Julie’s disabilities and confirming that her condition had a major and widespread impact on her functional ability, and her PIP was removed altogether in March and her ESA was reduced to £187 a fortnight, leaving her with just over £13 a day.
Clearly, neurologists and doctors have no rank as far as PIP is concerned, it’s their way or no way. And apparently, they consider that they’re more qualified than anyone else. After all, as an example guide, it takes approximately 10 years to qualify as a GP, including medical school and it typically takes around 12 years to become a neurologist.
Four years are spent as an undergraduate working towards a bachelor’s degree, and another 4 years are spent in medical school, but following medical school, graduates will then begin a one-year internship, followed by a 3-year residency programme.
Umm, who’s more equipped to make these kinds of decisions over a person’s health and what they need and don’t need, well, it certainly isn’t PIP.
So, what’re the typical qualifications that a PIP assessor needs. Well, they usually look for nurses, occupational therapists, paramedics and physiotherapists with at least 2 years post registration experience to join their team who have great observational abilities, in this case, definitely not.
An assessors average day at work is that they get up super early, log into their computer for ten minutes, and then drive around the country to assess people. Their first assessment is either 8 am or 9 am, which involves approximately 60-90 minutes of listening to really sad, negative stories about how people are affected by health conditions which the assessor needs to record with thunderbolt typing speed.
They do this about 4 times a day so will have completed assessments by approximately 3 pm or 4 pm depending on when they started and then back home by 4 pm or 5 pm. Then it takes approximately 60-120 minutes to write up each one and send them in.
These are then arbitrarily checked by audit who will ask them to make absurd random changes, and if they can’t work out how to do that, these guys with their constant shifting goalposts and rules will have fired you within a few months with little come back or compensation.
Training goes on for weeks, the worst thing about it is that the person can fail, and people do fail, and when that person realises what the job involves, it can be a tad demoralising with management being the worst part of the job because they use banking and business models and their workers are just numbers to them, and a number that doesn’t perform precisely how they want WILL be culled.
They care little about the public and even less about their staff, and they have regular culls of staff when there isn’t enough work, and they will not compensate you well. They give lip service to be caring but care nothing about that person’s career or feelings, all they care about is profits and hitting targets.
Workplace culture is poor, it’s fake and corporate, and the hardest part of the job is working all day on the same thing over and over again, something that can’t be done in an 8 hour day, and I would guess the most fun part of the job is being off at the weekend, even though they would still need to spend one and a half of those days off, planning for the week ahead.
Most people don’t even last 6 months, and all applicants must be fully registered without restriction or conditions with the Nursing and Midwifery Council (NMC) or The Health and Care Professions Council (HCPC) and have a valid PIN, plus hold a full current driving licence with access to a vehicle.
They go on a 5-week intensive training course, fully paid, but following that, there’s an additional 6 weeks on the job training with close mentorship and development. They offer an opening salary of £34,000 per annum, increasing to £35,000 on DWP approved status and the potential to earn up to £3,000 per annum quality bonus.
And they call themselves an equal opportunities employer…
Julie was able to get a supplementary payment of £264.16 a month too, increasing her daily income to about £23, but that runs out shortly, and now she doesn’t know how she’s going to manage, and she’s extremely depressed because she can’t go anywhere and she’s not able to use public transportation due to her muscles spasms, plus the fact that she won’t have enough money to pay the bills.
Julie’s been using her credit cards to purchase food and she has to send her son Lee, who is now 17, to go and get it because she can’t carry any shopping even if she could get to the supermarket, and she’s isolated here as is her daughter Rachel, and it’s not fair on her daughter and it breaks Julie’s heart not being able to take her anywhere.
Julie has appealed once more to have her benefits restored and is waiting to hear back from the DfC.
A spokesperson for the DfC said: “The Department for Communities (DfC) is unable to comment on individual cases. Personal Independence Payment (PIP) entitlement depends on how a disability or long-term condition affects a person’s ability to carry out a range of everyday activities. It does not depend on any specific medical diagnosis. Each case is considered on an individual basis.
So, what they’re really saying is that you actually have to be brain dead and not be able to move an iota of your body to be able to get any money. No surprise people are committing suicide because they probably believe that they’d be better off dead.
But this is the tragic truth behind rising disabled employment cuts, deaths and zero-hour contracts.
Lawrence Bond suffered from a heart condition, shortness of breath and struggled with mobility. His GP had reportedly also made two referrals for mental health services. But, despite all that, the 56-year-old was declared “fit to work” at an assessment.
As a result, Lawrence Bond’s benefits were cut and he was told to get down to his local Jobcentre in Kentish Town to look for work. He started an appeal against the decision but had no other options while he waited, and his anxiety was getting worse because he couldn’t pay his bills and was too scared to leave home to go to the shops.
Then, in the January, as he walked back from the Jobcentre, he collapsed and died of a heart attack, and the case of Lawrence Bond is not unique because in 2016 figures revealed that more than half of disabled people who appealed their “fit to work” assessment eventually got the decision reversed but for some it was already too late, they were already dead.
There are many people out there that have various health issues, some physical and some mental health issues, and for those few that can manage to work there’s literally no support to help them stay in work, and it frightens the hell out of them because the system is broken, on purpose.
And Scope issued a survey that found that approximately 59 per cent of disabled people in work felt that their jobs were insecure because of their disability and around 53 per cent had encountered disability-related bullying or harassment at work, and some disabled people spend years battling to keep working while their employers make their life intolerable.
And until the Equality Act is actively implemented there will be no possibility of disabled people being safe in work, and the government need to ensure that small businesses are supported to make changes and employ disabled people and that disabled people are given educational opportunities to help create a portfolio of qualifications fitting for their circumstances and aspirations.
Sanctions and cutting money to people who have practically no possibility of getting work in this current climate is not going to support them, instead, it will just cause tremendous anxiety and worry to people who already have much higher costs than everyone else, and applying this to people who have serious health problems is just wicked.
The Equality Act was only framed to give the idea that we would be protected, instead, it’s got more holes in it than Swiss cheese, and you’ve got more chance of winning the lottery than the government giving a piffle about sick and disabled people.
And it appears odd that the government is supposedly trying to get disabled people into employment, and yet, by their own admission have cut funding for Motability, in fact they’ve cut the numbers available to the bone, resulting in many instances of disabled people to no longer be able to get to work, and have done absolutely nothing to help employers to take on disabled people, bar fiddling the figures on a scheme to confirm how many employers are “on board” with the governments drive to get the disabled working.
In fact, it’s just the reverse. It’s one of the many war and peace novels put out there by the government that disabled people are protected by Equal rights laws, they’re not, and as with every employment law, the only real way to implement it was until 2011, the free Employment Tribunal.
Now, it’s no longer free, and of course, applications have plummeted as the costs to someone now recently unemployed, or on minimum wage or on a zero contract, are prohibitive, but this isn’t the only problem, to make an Equal rights claim stick, you have to demonstrate you have been discriminated against.
But 90 per cent of the time that means your word against theirs, and it means you have to demonstrate they did make your life a misery, and here’s the cop-out for the employer, didn’t make change or adjustments that were reasonable for the business.
And if they do argue, they will just say that they didn’t hire you because the other applicant was better suited, so that’s the pre-employment case quashed, and if they claim you’re a poor performer, again, it’s just your word against theirs.
It’s they, not you, that have your performance markers, and they who determine if you’re meeting them, and goalposts can, and are constantly moved for disabled people, but try proving that to a tribunal.
Harassment is all too common, with disabled people seen as a pain, obstructive and too demanding, but then it shouldn’t need an Employment Tribunal to order a business to fit automatic opening doors for their disabled workers, but it does.
And the Tories are not actually interested in really helping anyone, bar themselves to taxpayers money. All they want is to get the disabled off the figures, off benefits, and if they die, as thousands have, oh dear, how sad, nevermind.
But of course, we shouldn’t condemn their ineptitude, although it’s a contemptible cop-out for them to salve their consciences in the evaluation to death, of course, the government aren’t making mistakes because they don’t put a value on people’s lives and certainly don’t put a value on their deaths.