Disabled people are ‘at breaking point’ over cost of living, says MS sufferer

By Lottie Kilraine, Reporter21st November 2022News EnglandAdult Care, Disabilities, Long Term Care / Conditions, Multiple Sclerosis, News England, Poverty / Austerity, Social Care

A man with multiple sclerosis, who is forced to choose between paying for a carer or medication, has called on the Government to increase financial support for disabled people who are at “breaking point” as the cost of living soars.

Martin Pridgeon, 44, from Grimsby, Lincolnshire, has secondary progressive multiple sclerosis (MS) and struggles to cook, clean and do household chores on his own but said he is forced to choose between paying for a carer or his medication, which is not available on the NHS.

Despite being housebound for three months due to his condition, Mr Pridgeon plans to embark on a 400-mile (643km) round trip to London to hand deliver a petition with more than 14,000 signatures to No 10 on Tuesday.

The petition, organised by the MS Society as part of the charity’s #BreakingPoint campaign, urges the UK Government to introduce a new cost-of-living support package for disabled people, increase benefits to cover the extra costs of living with MS and pause debt repayments for people on benefits.

Mr Pridgeon (pictured) told the PA news agency: “Disabled people are at breaking point and stuck in a catch-22 situation because of the rising cost of living.

“The support that has been publicised in the autumn statement is all very well but why do we have to wait months to get it?

“Winter is coming, it’s getting colder and the price of heating, food shops and bills are going up.

“Disabled people urgently need the support right now.”

Mr Pridgeon, who has appeared in a campaign video for the MS Society, said he hopes to be a “voice for people with MS and other disabled people”.

“I want to share my experience because I know I am not the only one who will suffer this winter,” he said.

“Travelling to London is going to be really daunting for me but it’s a journey I have to make because I want to take a stand.

“Over 14,000 signed the petition and I want to be the voice for them and for people with MS or other disabilities.”

Mr Pridgeon, who is medically retired and receives Personal Independence Payment (PIP) benefits, is unable to afford a carer because he has to spend £200 a month on the drug fampridine, a symptom management treatment for MS that is not currently available on the NHS in England.

He first started taking fampridine, which aims to improve walking and help manage fatigue in adults with MS, during a four-week trial which he said left him feeling “wonderful”.

“I was housebound before the trial but by the end I could walk over a mile to my mum’s house,” Mr Pridgeon said.

“I felt wonderful, I was really happy.”

After the trial Mr Pridgeon was told he couldn’t get fampridine on the NHS in England, despite the drug being approved for use for eligible people living with MS in Scotland and Wales.

In June the National Institute for Health and Care Excellence (NICE), which recommends which drugs should be used in the NHS, rejected the use of fampridine after it ruled it was not a cost-effective treatment at the current price offered by the manufacturers.

Mr Pridgeon said he has to spend £200 a month on the symptom management treatment, leaving him struggling to afford everyday costs including travelling to doctors appointments.

“I went without fampridine for a year or so but I just couldn’t cope so I decided to pay for it privately,” Mr Pidgeon said.

“PIP is designed to support people to have more independence and get out of the house, but instead I’m forced to spend mine on my medication.

“I’ve had to cut down on food and heating to be able to afford it, even though it is really important for me to stay warm because of my MS.

“I need that medication but it’s getting to the point now where I think this month is going to be the last month I can afford to pay for it.”

Once a keen sportsman, Mr Pridgeon said he has deteriorated due to his condition over the last four years and this has had a significant impact on both his physical and mental health.

Mr Pridgeon lives alone and said his gradual loss of mobility led to him developing type 2 diabetes.

“I used to enjoy cycling, play squash, tennis, mountain biking and I used to walk everywhere,” Mr Pridgeon said.

“It impacts my mental health because without my medication I am stuck where I am because my legs are so weak.

“It kind of feels as if there’s no bones in your legs.

“I’m stuck inside on my own but the cost of taxis means I struggle to do social things like visit my parents.”

Mr Pridgeon has managed to secure funding for some gym sessions to improve his fitness but has to pay £24 a week for taxis there and back, which he struggles to afford.

“It makes a huge difference, but the funding will run out soon, and then what?” he said.

A UK government spokesperson said: “We know disabled people face additional costs and that is why we have put a strong financial support system in place.

“We urge people to check whether they are receiving all of the benefits to which they are entitled.

“As part of our £37 billion package of support, we are supporting six million people with a disability or health condition with an extra £150 payment while millions of low-income households will also be receiving at least £1,200 of direct payments this year.”