Bed-bound MS sufferer has disability benefits halved ‘because he could touch his nose with his finger’ Paul Powell, 50, also had his mobility car taken off him – leaving him and his carer wife feeling isolated

On the odd day, Paul Powell can get out of bed and walk to the bathroom, though he’ll be wobbly on his feet.

But he spends the majority of his time in bed with fatigue and no strength.

Indeed multiple sclerosis (MS) – which the 50-year-old has suffered with for more than 20 years – is known as a disease of ‘good days’ and ‘bad days’. For some with more progressive types, it’s ‘bad days’ and ‘not-as-bad’ days which is the case for Paul.

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But after an assessor came to visit him over his claim for Personal Independence Payments (PIP), his mobility car was taken off him – which left him virtually housebound in a remote village with no public transport links.

His disability benefit income was more than halved too – money he relied on to heat his house.

“Paul’s MS is terrible in the cold and he really goes downhill in the winter,” his wife Glenice told i. “His legs just give way.

“His money went from £468 a month to £229. I’m not working because I’m his full-time carer so it’s had a huge financial strain on us.”

The couple are speaking out to support the MS Society’s 2018 Christmas Appeal. i has partnered up with the charity to ask for donations from readers which will be used to offer grants for equipment and services that improve the quality of life of people with the disabling condition.

‘We’ve had to cut back on everything’

MS is a disease of the central nervous system where the body’s immune system mistakenly attacks the insulation around nerve cells (myelin) in the brain, spinal cord and optic nerves. More than 100,000 people in the UK have the condition.Paul was diagnosed with the relapse remitting form – when people have distinct attacks of symptoms which then fade away either partially or completely – aged 30 when his ankle went weak and he lost his eyesight.

After eight years, his symptoms worsened and he developed the secondary progressive form, when a person no longer has relapses then gets better, and their disability gets steadily worse.

It forced him to give up his job as a painter and decorator.

“Paul has severe backache and is never not in pain,” said Glenice. “He also has a shadow on his brain which causes very bad headaches. He spends much of the day in darkness as bright lights affect his eyes. He finds it difficult to talk to people as he gets very confused and tongue-tied.”

“We feel really isolated, but we can’t afford the petrol to go out” Glenice Powell

He was awarded a lifetime award for Disability Living Allowance (DLA), with high rate mobility and middle rate care, as well as a Motability car, until the benefit ended and he was switched to PIP last year.

He and his wife – who was then suffering from lung cancer – were astonished that he had lost the higher rate mobility and care.

“Paul isn’t able to walk very far and uses a walking stick or sometimes a wheelchair.

“At the time we were living in a very isolated village, and the car was a lifeline for us. We use it to get to regular doctor and hospital appointments. We have moved now but we’re still not on a public transport route.

“We’ve had to cut back on everything. We used my life savings to buy a new car and that’s completely drained us.

“Other than medical appointments we rarely go out. We feel really isolated, but we can’t afford the petrol to go out.”

‘Unfair’ assessment

It does feel like just because he could touch his nose with his finger that day he had his benefits halved. Other days he can’t do all these things at all Glenice Powell

Glenice, 60, from Much Dewchurch, Herefordshire, said the assessor had no idea what life is like for people with MS.

“They sent a psychiatric nurse and I don’t think he understood that the disease caused good days and bad days, or bad days and not-as-bad days as the case is for Paul,” she said.

“He came to our home and asked questions for an hour and a half. Paul was in bed that day, not feeling well at all.

“He was asked to walk to the bathroom, stand on one foot and touch his nose with his finger. He managed to do all of it, but he was very unstable on his feet. He was asked to put his socks on and I had to help with that.

“It does feel like just because he could touch his nose with his finger that day he had his benefits halved. Other days he can’t do all these things at all.

“I challenged this decision but the Department for Work and Pensions (DWP) said they were satisfied with the assessor and that Paul didn’t have enough points to qualify for PIP.

“You’re made to feel like you’re a fraud. It makes me angry because Paul didn’t choose to have MS. He would rather be working than lying in bed all day feeling ill.”

Loss of thousands

When the Powells moved house last summer they moved into an area where Universal Credit had been rolled out, which meant Paul had to switch to this from Employment and Support Allowance.

“Paul has been made to sign on at the Job Centre every two weeks and they’re asking him how many hours he’s available for work which is ridiculous. He hasn’t been able to for 12 years.

“We’ve now been waiting for an answer for four months over whether they deem him fit to work. It’s very stressful.”

The couple took their case to tribunal, and last week just found out that the DWP has agreed to reverse its decision over Paul’s PIP. But they have only got back-dated pay from May this year when they lodged their appeal.

“We are pleased but it’s been a real battle and a lot of stress to get what Paul should have been entitled to in the first place,” said Glenice. “And we are not getting back-dated pay for the three years when his benefits were halved – that comes to over £8,000.”

The DWP spokesperson said: “We introduced PIP to replace the outdated DLA system. Under PIP 52 per cent of people with MS receive the highest possible award, compared with 39 per cent under the previous benefit DLA. Since PIP was introduced there have been 3.7 million decisions and of these, 5 per cent have been overturned. Where decisions are overturned, often further evidence has been provided.

“We work closely with organisations such as the MS Society to ensure that PIP is working in the best way possible, and we recently announced that people with the most severe, life-long conditions will no longer have to attend regular reviews for PIP.”