PIP U-turn a “weight off” for young mum

I know I keep banging on about it: but the more of a stink you make about PIP/ESA denial, the more  chance you have of it being overturned – ALWAYS APPEAL!

Personal Independence Payment U-turn a “weight off” for young Belfast mum Roisin McWilliams in fight against stage 4 cancer. Her dad Tom has called for changes to PIP criteria

Roisin trying to stay cheerful at hospital with her dad Tom 

Belfast Live revealed in September how Roisin McWilliams was turned down for the disability benefit despite having stage four cancer.

But the Department for Communities has now done a U-turn, and Roisin’s PIP payments will be backdated to April following the public outcry.

In another exclusive, Tom McWilliams told Belfast Live: “Roisin is very happy. It’s a huge weight off her head.

“We received a call from our legal team saying that they had been in contact with PIP and they told them the decision had been overturned and the payments would be backdated. We had the confirmation letter on Wednesday.”

Tom said the family were “truly overwhelmed” and thankful for the level of support they got from the media, politicians and the public after Belfast Live published Roisin’s story.

“This wasn’t an orange and green issue,” he added.

The young mum before cancer took its toll 
“The politicians came from all walks of life. There were people from Sinn Fein and people from the SDLP , there was people from the DUP , Alliance and the UUP . I am very grateful for that.”

But the West Belfast man said his 28-year-old daughter should never been put through such “humiliating and degrading treatment” while fighting for her life against Hodgkin’s Lymphoma.

“No one wants to expose the private aspects of their life but we could either accept the decision or fight it,” he added.

“I don’t think anyone at that stage should ever have to worry about financial help.”

Tom said during treatment Roisin spends her days exhausted, unable to move or eat and lying on the bathroom floor to be near the toilet. And that the decision to reject her PIP claim when she is so sick, also impacted her mental health.

“I feel so sorry for the next person that comes behind Roisin,” he added. “It’s just so sad when they don’t have the energy to fight.

“The criteria definitely needs to be changed and this needs to be addressed.

“I understand those people are following the government policy, but something need to be done. It’s a total disgrace that we put people through this.”

Young mum Roisin recently learned she is immune to chemotherapy (Image: Family photo)

A Department for Communities spokesperson said: “The department cannot comment on the detail of individual cases.

“In relation to PIP decisions, additional information can become available after the original decision is made. The department will review any sort of additional material which is supplied and is not prescriptive in what this additional information may be.

“Some of the most common types of information supplied at this review stage are additional medical records and reports from health professionals which were not available during the original assessment.

“The additional information supplied at this stage will be reviewed and depending on its nature may mean the original decision is changed. If the decision is changed, the PIP award will be backdated to the date of application.”

Around a quarter of PIP claimants appeal their decision through what’s called a mandatory reassessment and many decisions are overturned.

As well the good news on her PIP application, Roisin was given the green light for the “very expensive” immunotherapy treatment she needs to have any chance of surviving.

Her dad added: “We received a call from Roisin’s consultant last week to tell us Roisin’s application for funding for her next treatment has been approved.

“She started the treatment last week and so far seems to be responding well to it.

“It’s a big weight off in light of the way things are going with the government.

“The treatment she’s receiving is very aggressive – it knocked her for six.

“But she’s trying to be very enthusiastic about the whole thing.”

After next week the family will find out if her brothers are viable donors for Roisin’s stem cell transplant, but if not she will have to turn to the register.

Dad Tom is urging everyone who can to register as a stem cell donor online at the Anthony Nolan Trust or DKMS .



Cancer patient denied PIP benefits while receiving chemotherapy treatment


paige garratt
Paige Garratt had stage four Hodgkins 

A woman from Deeside had her initial application for Personal Independence Payment (PIP) benefit turned down despite receiving treatment for cancer.

Paige Garratt, 22, who lives in Connah’s Quay, was assessed for the benefit four days after her penultimate chemotherapy treatment.

She said she was left in financial difficulty after her application was rejected, but later successfully appealed.

PIP (Personal Independent Payment) is provided by the UK Government and is designed to help cover the extra costs of a long-term illness.

Paige told ITV News she had to stop working during the treatment process and not being initially granted the benefit caused her unnecessary stress.

It was horrible. You’re dealing with the news and going through it and you can’t even think about any day-to-day life.

Then all of a sudden all these bills are coming out, you’re not able to work.

Nothing stops, life still carries on.

You don’t think about money during your treatment. And then to stress about it, to go through all the applications and the waiting and then to be assessed, it was a horrible experience.

Paige was diagnosed with stage four Hodgkins Lymphoma in November 2017 and was not assessed until January the following year.

She says she was dizzy, disorientated, and struggled to get out of bed when she was visited by a PIP assessor.

Paige says the questions were “too black and white” and did not allow for the fact that her health fluctuated in between bouts of chemotherapy.

The Department of Work and Pensions (DWP) says the UK Government is spending more than ever on disabled and long-term illness benefits and is always seeking to improve the quality of PIP assessments.

We are committed to supporting people with disabilities and health conditions. We support 1.88 million people through PIP and 1.97 million people through Disability Living Allowance (DLA).

We have never spent more on benefits for disabled people and people with long-term health conditions, totalling over £50bn a year – up £7bn since 2010.

But we constantly seek to improve the quality of PIP assessments. We have commissioned two independent reviews of PIP, and most recently announced that we will pilot video recording of assessments, improving confidence in the assessment process.


Paige’s initial application was turned down by the DWP, but after a successful appeal, she eventually received the minimum disabled allowance.

A lot of people do rely on [PIP money], so when they don’t get them it can be quite catastrophic. Especially when you’ve had to stop work and you’re stuck with no money because then you’re going to struggle financially.

I was recovering, still going through it and then I had to struggle. It was really hard on me mentally as well.

paige garratt
Paige is now back at work with a food production company near Flint. 

It is now eight months since Paige completed her treatment and her cancer is in remission.


Hundreds die every month after being told to find work

SNP MP condemns “devastating consequences” of Tory welfare policies.

Photo credit: jovike via photopin cc

Hundreds of vulnerable people across the UK are dying every month after being told to start preparing for work, according to new statistics which of been condemned as “damning evidence” of the impact of Tory welfare policies.

Figures uncovered through freedom of information laws reveal 10,950 people died between March 2014 to February 2017 after being placed in the Work Related Activity Group (WRAG) of Employment and Support Allowance (ESA).

The Daily Record reports that this includes up to 1000 Scots, which equates to around 36 ESA WRAG deaths every month. While across the UK, it equates to around 300 deaths per month over three years.

ESA WRAG if for sick and disabled people who assessors believe may be capable of moving into work with the right support, but campaigners and opponents of the system claim some people are being placed in the group when they should be in the higher Support Group.

Their claims are supported by official statistics that show 70% of claimants successfully overturn ESA decisions on appeal, with many of these appeals lodged by sick and disabled people who believe they should be in the ESA Support Group.

Claimants placed in this group are not required to begin looking for work, unless they choose to, and are not subject to many of the strict requirements placed on those in the ESA WRAG.

Campaigners protest against Tory welfare policies. Photo: Getty Images.

Campaigners protest against Tory welfare policies. Photo: Getty Images.

Danielle Rowley, Labour MP for Midlothian, said: “Across Scotland, thousands of people are suffering from years of Tory cuts to lifeline benefits such as Employment and Support Allowance. “Thousands of people have been put through the stress and indignity of unnecessary re-assessments, with more than 10,000 people dying whilst trying to prove they were ‘not fit for work’.”

SNP MSP Bob Doris added: “This is more damning evidence of the devastating consequences that callous Tory welfare policies are having on disabled people in Scotland. “It is imperative that time is called on the Work Capability Assessment. It’s clear the Tories shameful and disastrous welfare policies are making life even more difficult for thousands of people, as well as pushing people into debt and crisis.

“It’s time the UK Government hand over all the powers over welfare to the people of Scotland so we can build a social security system based on dignity and fairness – which the people of Scotland demand and deserve.”

A Department for Work and Pensions spokesperson said: “ESA is an income replacement benefit awarded to people who have a health condition or disability, which will of course include those people with the most serious illnesses.

“The department does not hold information on the reason for death of a claimant, therefore it would be inaccurate to assume any causal effect from these figures between the benefit and the number of people who have sadly died.”


Former watchdog chief labels disabled benefits process a ‘hostile environment’

Andrew McDonald
 Andrew McDonald says the PIP process works against the interests of the disabled.

A former top civil servant has criticised the disability benefits assessment system as a “hostile environment” after being told he was ineligible for support despite having Parkinson’s and terminal prostate cancer.

Andrew McDonald, 56, who ran the parliamentary body overseeing MPs expenses before retiring on health grounds, had his benefits stopped after assessors decided he was no longer ill enough to qualify for personal independence payment (PIP).

McDonald described the assessment process undergone by hundreds of thousands of chronically ill and disabled people each year as crude, unprofessional and Kafka-esque in its complexity.

“I was shocked by the way this was being administered against the interests of some of the most disadvantaged people in the country,” he said. “PIP is beset by profound administrative failures which work to the disadvantage of disabled people.

“My personal interactions with the [PIP] process were perfectly pleasant; but the system as a whole does create the impression of it being a hostile environment and one where two of the foes are complexity and the sense that it is not a level playing field [for claimants]”.

McDonald, who chairs the disability charity Scope, said: “I thought this was a system to give people a hand up; in practice they encounter a sleight of hand that is completely out of kilter with the best traditions of British public service in which I was not only raised but worked for most of my career.”


He called on the government to look afresh at the entire PIP process, which has been dogged by controversy since it was introduced in 2014 as a way of cutting the disability benefits bill. The controversial assessments are carried out by private contractors Atos and Capita.

Earlier this year, a cross-party committee of MPs concluded that the PIP process was error-strewn and insensitive, after hearing evidence of poor practice from more than 4,000 claimants. The government responded that it was working to improve the system.

PIP is intended to help with the additional costs of living with disability, estimated at £570 a month. It is not means tested or related to employment status and is typically used to meet special transport needs or health-related heating or food bills.

McDonald was diagnosed with Parkinson’s, a degenerative disorder of the central nervous system, in 2007. Three years later, he discovered he had prostate cancer and was subsequently told by doctors it was incurable. He is shortly to undergo brain surgery in attempts to mitigate some of the worst effects.

He retired in 2014 as the chief executive of the Independent Parliamentary Standards Authority and qualified for PIP the following year, a decision which was reaffirmed at review in 2017. Each time, assessors awarded him 11 points, comfortably over the eight point threshold for lower-level PIP support, which amounted in his case to about £3,000 a year.

At his third review assessment in March, however, he was awarded two points – a decision which suggested his health was improving. “I was flabbergasted: I had two progressively degenerative conditions and my Parkinson’s had become worse since the turn of the year,” said McDonald. “It’s now described by my neurologist as ‘very severe’.”

The assessor – an occupational therapist – had little understanding of Parkinson’s, he said. “She did a common test of twisting the forearm at the elbow. She concluded from this I have full power in my upper limbs. It’s nonsense. Daily, it is a nuisance to me that I am weak as a kitten in my upper body. ”

The system failed to account for the way Parkinson’s fluctuates dramatically, through the day and over time, he said. “I got dressed today without too much trouble, though my cufflinks eluded me. Two days ago, it took me 90 minutes because of the tremor in my hands, my lack of strength. Putting on jackets is a nightmare.

“That sort of variation from day to day could be captured in the system but, in practice, the people in the system I was working with were not capturing it.”

He asked the Department of Work and Pensions (DWP) to review the decision but it upheld it on the grounds that, although it was “surprising”, the assessment showed his condition had improved and it was up to him to supply evidence to prove that it had not. The DWP was effectively suggesting the loss of his benefit was his own fault, he said.

A DWP spokesperson said it monitored the quality of the PIP process to ensure it worked well for everyone. “We constantly seek to improve the quality of PIP assessments. We have undertaken two independent reviews of PIP and most recently announced that we will pilot video recording of assessments, to help increase people’s trust in the assessment process.

McDonald’s benefits were stopped in April and he lodged a tribunal appeal against the decision within weeks. Four months on, he is still awaiting a date for a hearing.

Although the government has promised that people with long-term degenerative diseases should no longer be given annual PIP assessments, this does not apply to claimants, such as McDonald, who received lower-level awards.

He had been able to manage financially without PIP, he said, but he was aware not everyone could. “If you are on a low income the sudden decision to stop PIP is a really serious blow – and it’s a blow from a bewildering system.”


Cancer-stricken father, 56, ruled ‘fit to work’ because he could make a cup of tea died

Cancer-stricken father, 56, ruled ‘fit to work’ because he could make a cup of tea died with just £8 in his bank account. He had intended to appeal the ‘fit to work’ ruling in July but had to postpone because he was too ill.

Joseph MacMillan – pictured with his grandson Elliot before he had his nose amputated (Photo: Joe MacMillan)

The son of a man who died with just £8 in his bank account after his disability benefits were stopped five months before says “the state killed” his father.Joseph MacMillan – who had multiple long-term health problems and had his nose amputated due to cancer – died after falling into a diabetic coma and having a heart attack in August, just days before he planned to appeal the decision.

The 56-year-old had been successfully claiming until an assessor carried out a home visit and deemed him fit to work, and his Personal Independence Payment was stopped.

Joseph – who as well as heart problems and diabetes suffered with pancreatitis, anxiety and depression – was denied the income on the grounds that he could use stairs and make a cup of tea, his family said.

The 56-year-old – shown here when younger – had his Personal Independence Payment benefits stopped in March (Photo: Joe MacMillan)
The 56-year-old – shown here when younger – had his Personal Independence Payment benefits stopped in March (Photo: Joe MacMillan)

I believe the stress of living with no money finished him off. The state killed him

Joe MacMillan

Son Joe, who works as a chef, said he blamed the Government’s austerity measures.

He told i: “My father was ill and he would have died eventually, but I believe the stress of living with no money finished him off. The state killed him.”

‘Skin and bones’

Joe, 39, from Glasgow, said his father had become ‘skin and bones’ and was obviously not a well man. “He was like a concentration camp victim, there was nothing to him,” he said.

He said Joseph’s cancer – diagnosed two years ago – had taken a severe toll on his mental health. “He was very self-conscious, embarrassed and depressed about losing his nose. He didn’t leave the house after that.”

His father was on “tonnes” of medication which gave him side-effects including loss of appetite, drowsiness, lethargy, and insomnia, he explained.

He was like a concentration camp victim, there was nothing to him

Joe MacMillan

“He was clearly frail and in no state to work,” said Joe. “Just because you can make a cup of doesn’t mean you can go and do an eight-hour shift at work.”

He believes a physiotherapist carried out the assessment. “In my opinion a physio is not qualified enough to assess all my father’s health problems, it should have been a nurse.”

The hardest hit by austerity have been the most vulnerable in society [fact check]

Dad was ‘proud’

The cancellation of his benefits in March cost Joseph £550 a month. He had intended to appeal in July but had to postpone because he was too ill to attend.

In his final months, he was forced to rely financially on his 58-year-old sister, Roseanna Hill who he lived with in Dennistoun.

“The pair of them survived on her meagre carer’s allowance,” said Joe. “My aunt was very ill too and wasn’t really able to look after him and she died three days after my father from a stroke.”

He explained he spoke to Joseph twice a week on the phone and offered him help but he was “too proud” to accept it.

Joseph hadn't wanted his son (pictured here) to bring round grandson Elliot because of his nose amputation (Photo: Joe MacMillan)
Joseph hadn’t wanted his son (pictured here) to bring round grandson Elliot because of his nose amputation 

“I didn’t get to see my dad as much as I wanted,” he said. “As well as being busy with work and looking after my three-year-old, Dad didn’t want me to come round and for my son Elliot to see him the way he was.

“He was given a nose prosthetic but it wasn’t very good and he just became a shell of the man he once was.”

The Department for Work and Pensions has been approached for comment.


Woman with Stage 4 Cancer denied PIP

Benefits assessor visited woman, 22, with stage 4 cancer and no hair during chemo treatment and says she’s ‘not sick enough’
Paige Garratt says she was so ill during the home visit she couldn’t raise her head off the sofa.

Paige Garratt was denied Personal Independence Payment despite having stage 4 cancer (Photo: Paige Garratt)Paige Garratt was denied PIP despite having stage 4 cancer
Paige Garratt says she never expected in a million years to be told she had cancer at 22.

Neither did her doctors – it took 10 months for them to realise her persistent cough and itchiness were not just a chest infection and eczema.

The bakery worker had grown increasingly worried about her breathlessness – and by October last year had almost collapsed walking into her GP surgery.

Then came the shocking news – she had stage 4 Hodgkin’s lymphoma, meaning it was advanced and had spread to her lymph nodes and lungs. She also wasn’t prepared for just how sick and tired she would constantly feel when she endured four rounds of gruelling chemotherapy.

The 22-year-old's cancer wasn't diagnosed for 10 months, meaning it was advanced and had spread to her lymph nodes and lungs (Photo: Paige Garratt)
The 22-year-old’s cancer wasn’t diagnosed for 10 months, meaning it was advanced and had spread to her lymph nodes and lungs 

‘I cried, I felt like I’d been personally judged. It made me feel like a fraud, like it was my fault that I was ill’

Paige Garratt

But Paige, from Flintshire, North Wales, says she not only had to deal with the stress of her illness – she also faced a battle to get financial help.

She explained she was left in tears after she discovered she’d been deemed “not sick enough” for disability benefit after a home assessment during the time she was having treatment.

“The assessor turned up about four days after my second to last chemo round,” she told i. “I was sat on the couch in my PJs with no hair. I was lethargic and my head felt so heavy I had to keep it rested on the sofa arm or physically hold it up with my hands.

“The letter said I was physically well enough to take care of myself and my mental health was fine – which she didn’t even ask me about.

“I cried, I felt like I’d been personally judged. It made me feel like a fraud, like it was my fault that I was ill.”

‘I was asked to stand on one leg’

‘Why isn’t my GP’s letter that I had cancer and was having chemotherapy proof enough?’

Paige Garratt

Paige was advised by her CLIC Sargent social worker that she’d be entitled to Personal Independence Payment (PIP), a benefit that helps with the extra costs of living with a long-term health condition or disability.

The weekly rate for the daily living part is either £57.30 or £85.60 and for the mobility part, either £22.65 or £59.75.

Paige was hoping to have the money to pay for her travel costs for trips to the hospital three times a week.

She says the questions she asked by the assessor were “too black and white”.

Paige feels the questions the assessor asked her were "too black and white" (Photo: Paige Garratt)
Paige feels the questions the assessor asked her were ‘too black and white’ (Photo: Paige Garratt)

“Everything has to be a yes or no. She asked if I could prepare food by myself and I said yes, but not for the first week or so that I start a new cycle of chemo. But that was obviously taken to mean I don’t need any help.

“The report said I wasn’t lethargic, when I couldn’t lift my head off the sofa to speak to her it felt so heavy. It also said my mental health didn’t seem affected when I wasn’t even asked how I felt. Of course I’m affected by having stage 4 cancer. She didn’t listen to me at all.

“I was asked to stand on one leg, which I could do. What does that prove, I still have cancer. It’s ridiculous that they even wanted to see me to check my claim. Why isn’t my GP’s letter that I had cancer and was having chemotherapy proof enough?”

‘So de-humanising’

I was made to feel like I’m doing something wrong for being ill

Paige Garratt

With her social worker’s help, Paige managed to successfully appeal the decision and was awarded PIP in May this year – around seven months after she had first been diagnosed with cancer.

“People with cancer need the financial help at the time they apply for it, when they’re off work sick and have extra costs to travel for treatment,” she said.

She won her appeal against the decision and was awarded PIP in May this year – but says delays are not fair on cancer patients (Photo: Paige Garratt)
She won her appeal against the decision and was awarded PIP in May this year – but says delays are not fair on cancer patients 

“The whole experience of PIP has been so negative and de-humanising. I was made to feel like I’m doing something wrong for being ill.”

Paige finished her chemotherapy in March this year and a scan has shown she is cancer-free.

The Department of Work and Pensions have been approached for comment.



woman with MS: PIP report full of lies

‘The assessor’s report was full of lies, flaws and fabrication’, says woman with MS, 48, denied disability benefit. Janette Harrison says losing £300 a month of her benefits has meant she is forced to make the choice between electricity and food

“Some days I’m okay, then the next I need to nap three times a day due to the crushing fatigue,” she explains. Indeed, some days she can walk without a stick, then others she needs to use one because her balance, vertigo and vision problems have kicked in.Struggles with her bowel and bladder are a daily constant, however, and mean she can’t use public transport. She says her symptoms – including muscle weakness and numbness – make her unable to hold down a job where you’re expected to be fit for work each day.When the now 48-year-old first developed her symptoms back in 2000, she had to quit her job as a warehouse operative and was awarded the full rate of disability living allowance (DLA) – but now she is forced to manage on £300 less a month. “I have to make the the choice between electricity and food.”

She also had to give up her Motability car – which she says has taken away the little independence she once had.

“I can’t use public transport because of my bowel and bladder issues and I certainly can’t afford taxis,” she said. “When I’ve been sick and had to cancel plans repeatedly, one by one friends dropped away.

“I’m trying to stay positive but losing my car has made me feel even more isolated.”

20-metre rule ‘unfair’

Janette, from Sheffield, is one of thousands of people with MS who have had support taken away since Personal Independence Payment (PIP) began to replace (DLA) in 2013.

The MS Society says figures show that one in three people who have the incurable disease had their benefits downgraded and in all, £6 million had been taken from MS claimants since the introduction of PIP.

Janette says she cried during her assessment interview when asked about the impact her MS had on her. Not for sympathy, but because she genuinely feels heartbroken by the way the disease has robbed her of the life she once knew.

However, this was not noted on her report. What was noted was she could walk 20 metres – which she challenges.

The assessor said that I could walk 20 metres because I came to the door – but my hallway is only around nine metres

Jeanette Harrison

Under DLA, the measure used to determine eligibility for mobility support was 50 metres, but under PIP this has been reduced to 20 metres. Now anyone who can walk one step over 20 metres – roughly the length of two double-decker buses – won’t qualify for the higher level of PIP’s mobility component.

“The assessor’s report was full of lies, flaws and fabrication. Answers I gave weren’t recorded in the report. For example, I explained that on some days I can’t drive or cook because I don’t feel it would be safe, but that wasn’t written down.

“The assessor said that I could walk 20 metres because I came to the door – but my hallway is only around nine metres. And even if I could one day, with MS it doesn’t mean I can the next day.

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“She said I was able to pick something up from my coffee table – I don’t even have one. She said I looked presentable – but there’s no note that I sometimes need help with having a bath or shower. My sister helps me with that as well as cooking as I drop things.

“She even said I looked ‘well-nourished’ which I took to mean I was fat. I’ve been on steroids for 20 years and been unable to exercise because of my MS so I found this offensive as a measure of how well I am.

“She said she saw me bend down and put a harness on my little dog which I didn’t – my sister had been and done that and left it on him. There were so many discrepancies it made me think they’d mixed up my assessment with someone else’s.”

‘They treat sick people like criminals’

Hannah Smith suffers with muscle weakness and struggles with her mobility (Photo: Hannah Smith)

Hannah Smith was told she wasn’t entitled to Personal Independence Payment despite her muscle weakness and mobility struggles.

The 28-year-old, who suffers with relapse-remitting multiple sclerosis, says she was treated like she “wasn’t a human being” during her assessment for the benefit.

She says the assessor insisted she stand up three times despite her protestations that attempting to was causing her extreme pain. She relies on crutches or a wheelchair to get around and has crushing fatigue, brain fog, pins and needles and numbness.

Hannah, from Peterborough, Cambridgeshire, told i: “I was made to feel like a liar when I asked for help. I want the Government to know what they’re doing to us, what they’re putting us through. They treat sick people like criminals.”

After a year-long battle to appeal the decision, a tribunal ruled in her favour last month – but she is still waiting for the money which will be back-dated.

Constant struggle

I’ve asked the Department of Work and Pensions (DWP) to explain why they think I was entitled to the full benefit at first and now 16 years later I’m doing better when I have an incurable, progressive disease but they have no answer

Jeanette Harrison

Jeanette appealed to a tribunal and a hearing was held in July last year but she was unsuccessful.

“I felt like I was a criminal on trial being cross examined. I felt like they were making out I’m lying about my illness.”

Jeanette says the cut back in her benefits has meant she is no longer entitled to full housing benefit – and she now has to pay £48 a week and this leaves her with £60 a week for all bills and food.

“It’s a constant struggle financially. Some days I really need the heat on because my muscles are cramping up, and I need to use the emergency credit on the meter. That means the next week I have to pay it back and go easy on food.

“Diet is known to be extremely important for the health of MS patients. Eating fish rich in omega 3 acids is thought to slow down the disease but I can’t afford fish.

Jeanette has the relapse-remitting type of MS, which means she has attacks or flare-ups of symptoms followed by periods of full or partial recovery.

“Each relapse leaves its footprint. I’ve asked the Department of Work and Pensions (DWP) to explain why they think I was entitled to the full benefit at first and now 16 years later I’m doing better when I have an incurable, progressive disease but they have no answer.”

The DWP has been approached for comment.

Jeanette is supporting the MS Society’s Enough campaign. The charity has launched a petition calling on the government to scrap the 20-metre rule as the measure for the higher rate of mobility support.