A man whose world was turned upside down by a "crushing" multiple sclerosis diagnosis has told of how the sheer cost of surviving as a disabled person caused his life to spiral out of control.
Once a DJ used to pulling long nights behind the mixing deck, Phillip Loughney now finds himself trapped in his parents' house, confined to a single ground-floor room equipped with a hospital bed and a commode after the degenerative condition caused him to lose almost all mobility.
But despite his condition, which causes severe pain, muscle problems and fatigue, he remains classed as "fit for work" by the DWP - and was even sent job listings for challenging manual work.
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Phillip, who relies on an electric wheelchair to get around and is unable to leave the house alone due to a steep set of stairs, said: "I started getting symptoms in 2013. I suffered from cluster headaches, which were genuinely awful and I wouldn't wish them on anyone. Then I started having sensory issues, feeling numb, falling over. I was very blatantly unwell and I was in hospital several times over a couple of months.
"I was diagnosed on June 24, 2016 - the day of the Brexit result. I had been sick for years, so I sort of expected it. It was just adding a label to the thing that was already happening, and I finally had a word for it. My dad came to see me, and he was the one who was upset. If I remember one thing about that day, it was that my parents were crying. They were crushed by it, and I realised it was serious."
Multiple sclerosis, which affects the brain and spinal cord, is a lifelong condition that can sometimes cause serious disability. Formerly fit and healthy, Phillip's condition rapidly deteriorated in the years following his diagnosis, and he is now unable to get out of bed or cut up his own food unaided.
However, he was sent job listings for full-time care work by the DWP, which still classes him as "fit for work" following an assessment carried out nearly five years ago.
He said: "Imagine me as a full-time carer, trying to help people sit up and roll out of bed. I need two people to help me out of bed myself every morning. It's so absurd, and it doesn't help. It makes me miserable to see all these ways of making money I don't have access to. I'd love to work, because I want to help people. I just want to live an independent life."
He said his problems began during the heatwave of 2018, when he cancelled two DWP assessments in a row due to illness. As a result, his Employment Support Allowance (ESA) was cut off for three months, and he was forced to rely on food banks and charity from strangers to survive.
He said: "I had shopping done for me by a charitable person online, who I will never not be thankful for. Still, at the time this was the lowest period in my life and I survived mostly on a wholesale box of ramen noodles with occasional poached eggs for protein."
When his ESA was reinstated, he was placed in the "working group" category after expressing his desire to one day volunteer at Alder Hey Children's Hospital. He said he asked for the decision to be reassessed, but his request was ignored, and his placement in the working category was then used to justify a Personal Independence Payment (PIP) stoppage due to a missed health assessment as authorities did not accept that he was unable to attend.
In 2020, the 32-year-old moved to Newcastle, which triggered a transfer from ESA to Universal Credit, where he remains in the Limited Capability for Work category - which still has work requirements, meaning he must continually provide the DWP with sick notes to prove his degenerative condition.
Phillip, who moved back to his family home in Old Swan in October 2022 after his health deteriorated further, said: "Since 2018, I've had one health assessment over the phone. I've been asking them to reassess me since then. They say they will get round to it - there's no apologies.
"The whole thing has dragged on five years. You want help, you want support. It's embarrassing to even have to talk about benefits; nobody wants to live this way. I'm disabled, and it feels weak to even admit it. I didn't want to be in this system. I want to work and pay taxes, and instead I'm fighting for the barest scraps to have a remotely normal life. UC is not much money even if you're able bodied. But when you're disabled, you have to buy a wheelchair, guard rails, adapted clothing. At the end of the month, I'm left with nothing but support from other people."
Phillip's electric wheelchair alone cost £1,800, which he purchased privately as the NHS will not provide electric wheelchairs to households without level access. An appropriate motorised bed costs approximately £2,000, and further accommodations, such as adapted kitchen and bathroom items and a "life alarm" button, add up to hundreds of pounds.
Due to being classed as fit for work, he receives only £650 per month, which means he cannot afford the downpayment on accessible rented accommodation - and because he lives with his parents, he does not qualify for help from Liverpool Council.
He said: "I don't have a life at the moment. My mum is caring for me, though I should be caring for her at this age. I'm very depressed because of it. I deal with my depression, but you can't use medication or therapy when the situation you are in is objectively so bad. The situation is too awful to deal with.
"It's very difficult to live with, and my parents have to see it. There's no way they can't. I don't want them to have to look after their 32-year-old son."
After being approached by The ECHO, a DWP spokesperson said: “We apologise unreservedly for the inconvenience and distress caused to Mr Loughney. We have arranged a Work Capability Assessment for Mr Loughney to ensure any errors in his claim are corrected and we have contacted him directly to update him.”
One in three disabled people 'struggle to make ends meet'
The Brain Charity, headquartered in Liverpool, which supports people with all forms of neurological conditions, has been helping Philip by providing practical advice on his housing and benefits situation, as well as confidence coaching and employment support.
A spokesman for the charity said: “People with disabilities should not have to turn to personal fundraising to pay for their own necessary equipment, but sadly this is all too common.
“In January 2022, we surveyed our community and found that 1 in 3 regularly struggle to make ends meet.
“On average, disabled people have extra costs of £583 each month. These costs are not optional extras - they are the essential goods and services that enable them to live their lives. These are the costs that welfare benefits are supposed to cover; in practice, however, they do not go nearly far enough.
“Many people with a neurological condition can find it extremely difficult to navigate the welfare benefits system, and we regularly hear of instances of clients not being initially granted what they should be entitled to – particularly when they live with an invisible disability.”
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