An Oldham woman with progressive multiple sclerosis has spoken out about her struggle to receive disability benefits.
When Wendy Fitton was 32 she was diagnosed with Multiple Sclerosis – a disease which would come to rob her of her mobility and her career as a counsellor.
But she adjusted.
Wendy became used to the frequent medical appointments; she learned to manage her decreasing mobility through the use of her trusty walker.
She was able to maintain a good quality of life, even after she had to take early retirement and move into a more accessibility-friendly home.
What Wendy, now 59, was not anticipating, however, was a lengthy battle with the Department for Work and Pensions (DWP) two-decades on from her initial diagnosis.
In 2015 the DWP announced plans to switch the Disability Living Allowance (DLA) to the Personal Independence Payment (PIP).
Wendy was in full receipt of the DLA, which gave her around £400 a month as she was awarded the maximum allowance.
This money was an essential part of Wendy’s income, as it supplemented her pensions – which were diminished after retiring long before 65.
When the government announced the phasing out of the DLA and move to PIP, Wendy was to be one of the first to be switched over in the autumn of 2015.
New assessment criteria
A new benefit meant new criteria – and therefore a new assessment was needed.
“I put my application in for PIP, which is a great long form,” says Wendy.
“They didn’t actually ask for a lot of other stuff, but I also sent across notes from my consultant and my doctor.”
She went to her assessment in October 2015, where she was met by a non-medical assessor.
“You wouldn’t have called her a medical person,” explains Wendy, “not a professional in any sense.
“She told me she used to be a psychiatric nurse, but she obviously hadn’t done any other medical research and certainly knew nothing about my condition.
“We talked generally about my life and my ability to walk – but she didn’t get me to do anything.
“In fact, at one point she asked to see my arms – which I hadn’t mentioned, and are nothing to do with MS for me.”
A month later she received “a great, big, long letter” rejecting her from any further disability payments.
“This letter was lying about me. It was basically a long list of untruths about me.
“If you saw it, you wouldn’t have recognised me in it.”
Wendy decided to appeal to DWP, and after nearly a year-long battle she was restored to the lower level of PIP and was back-paid for the months she had been without support.
‘All that can happen: this illness gets worse’
Unfortunately, Wendy’s relief was short-lived, as in 2018 her difficulties resurfaced as she was called to a reassessment for her PIP award.
Reassessments were not a part of her original DLA, as she has secondary progressive multiple sclerosis – meaning her condition will never improve.
In fact, Wendy’s consultant has told her before that he feels people with long-lasting illnesses should never have have to be reassessed.
“What’s the point?” Wendy asks, “What’s changed? Nothing’s changed – it’s only got worse. That’s all that can happen: this illness gets worse.
“So why spend all that money doing assessments? And all that money ensuring that I’ve got no money?”
But this was not an option for Wendy, so, in April 2018, she went through the assessment process again.
Once more she was paired with a non-medical assessor, who rejected her for a second time.
“It said she didn’t feel that I was suitable for PIP anymore,” Wendy says.
“I thought I don’t understand this, I used to get DLA and then PIP, I have an incurable illness – how can I not be eligible anymore? It’s ridiculous, they make it up as they go along.”
‘Is this the end of things?’
Wendy was forced to go through the appeals process once more, with an internal review at the DWP failing to restore the money again.
Left with no options, Wendy decided to go through the external tribunal process – a process which is still ongoing, now over a year later.
“I started to find that I couldn’t cope,” she says, “so I had to take out an overdraft.
“Recently that was coming to an end, and I thought ‘oh no, I can’t do this. Is this the end of things?’”
At its worst, Wendy was left with just £30 to live on, and she had no choice but to turn to her Quaker Meeting House for financial support.
She says: “I shouldn’t have had to turn to my friends, to my church to help me.
“I was very upset, I was really down in myself and I was so angry. I just couldn’t contain my anger.
“There was no suggestion as to how to make up this shortfall. It was just ‘go away!’”
In the midst of her fury Wendy wrote to Downing Street pleading with the Prime Minister for help, only to receive a reply saying they had passed her letter on to the DWP.
“They’ve never answered it,” she adds.
A chance to tell her story
While her tribunal is set for this month, Wendy has had over a year to wait – meaning a year of increased financial struggle and difficulty.
“This also just causes so much stress, and stress is something that makes MS worse.
“As well as MS, I have bipolar too – so obviously I shouldn’t be stressed because of that – I don’t need this!”
But Wendy is not nervous about her tribunal, instead she sees it as an opportunity to highlight the injustices woven into the fabric of the benefits system.
She says: “I’m looking forward to it! It’s a chance for me to explain exactly how this has affected me, and I’m sure so many others too.”
Despite her frustration and the turmoil she’s experienced, Wendy’s generous and compassionate nature means that she cannot bring herself to be angry at the people working within the DWP.
“I want to be angry with them – but I can’t, because they aren’t the ones who have done this to me.
“It’s not their fault. I think they probably do their job because they probably want to help people, and I imagine it’s very hard.
“I’m so sorry for anyone who is working in these organisations and within these systems.”
Not alone in this
Importantly, for Wendy, she is far from the only victim of this system and its ceaseless bureaucracy.
“This is happening to all sorts of different people, like people on the ESA [Employment and Support Allowance] being forced back into work.
“For those of us without money, we are getting really hurt by this. But I’m retired – so I have that at least, which makes things somewhat better for me.
“People who are working are definitely getting hit really hard, and people with families too – it’s just crazy.”
This is the crux of the issue for Wendy. If someone like her, with multiple degrees and experience working in the NHS, finds the process suffocating – then how on earth are other more vulnerable people coping?
“This PIP and other benefits are supposed to be about helping people who need it most, that’s what we are told on the telly and everything.
“So why do they make it so impossible? Why is it all so horrendously difficult, stressful, and tormenting?”
Wendy hopes that by speaking about her struggle she can raise awareness of the situation more generally, not just within the disabled community – but more broadly in society.
“I want people to know that this is going on around them, perhaps not to you – but to people you know, your family, your friends, your neighbours could all be affected.
“I’d love people to talk to their politicians, to help charities, to join campaigns.”
Millions plunged into poverty
Wendy has been supported by Debbie Abrahams, MP for Oldham East and Saddleworth, who is a leading voice in Parliament criticising the Government’s PIP assessment system.
Debbie said: “When the Government introduced PIP it said it would mean more support for disabled people to enable them to live independently. In reality millions of vulnerable, disabled people, like Wendy, have been plunged into poverty.
“It’s incredible to think that people with progressive diseases like MS, Parkinson’s, or any condition that isn’t going to improve with time, are being targeted by the Government.
“We must never forget that ninety percent of disability is acquired and it could happen to any one of us.
“Instead of demonising disabled people and cutting support the Government should respect and value our social security system, which, like our NHS, is there for all of us should we need it.”
‘PIP needs to change’
Genevieve Edwards, Director of External Affairs at the MS Society, said: “Sadly, Wendy’s story is not unique. PIP is meant to help with the extra costs of living with a painful and exhausting condition like MS. But since PIP was introduced thousands of people with MS have lost support.
“We think that’s down to the 20 metre rule. If you can walk just one step over 20 metres you won’t qualify for the higher rate of the mobility element, even if you did under the previous benefit, DLA.
“The impact of these cuts can be devastating – people tell us they can’t get to work, are trapped in their own homes, and even see their health get worse.
“The 20 metre rule makes no sense and the government has never explained why people who can walk 21 metres need less support to live independently. PIP clearly needs to change, starting with the government scrapping the 20 metre rule.”
When asked for comment on Wendy’s story, a DWP spokesperson said: “Decisions for PIP are made following careful consideration of the evidence provided by the individual as well as their GP or medical specialist.
“When someone provides further evidence in support of their claim, as Ms Fitton has, it can result in a different decision.
“We have offered to reconsider her claim, but she has told us that she wishes to continue with an independent tribunal.
“Over two thirds of MS claimants receive the same or a higher award after DLA to PIP reassessment, and we work closely with organisations such as the MS Society to ensure that PIP is working well.”