The Government’s assessment system for long-term disability benefit claimants is having a “devastating” financial and social impact on people with multiple sclerosis, new research has found.
The research by the MS Society found that one particular rule used in assessments for Personal Independence Payment (PIP), whereby those who can walk at least 20 metres, even if with a walking aide, are not eligible for higher level support, is causing people with MS to lose support at an alarming scale.
Previously the measure was 50 metres and experts say the change is “senseless and unfounded”.
Benefit cuts to people with the chronic, neurodegenerative condition are also costing the NHS at least an additional £7.7 million a year in GP and A&E services, according to the charity’s new report, PIP: A Step Too Far.
Many people with MS rely on benefits to help with the extra costs involved with living with the condition. PIP has been gradually replacing the old disability living allowance (DLA) for the last five years, but the new assessment system has been called an ordeal by those trying to navigate it.
The Department for Work and Pensions has this week said people with MS and other degenerative medical conditions will no longer have to undergo regular tests to prove they remain eligible for disability benefits, but campaigners think more fundamental reforms are needed.
The new MS Society report examined the experiences of people with MS who have been re-assessed to move from DLA to PIP since 2013. It’s the first report that examines the impact of the switch to PIP on those with MS. The results are overwhelmingly negative.
Jamie Jones from Sutton Coldfield, Birmingham, was diagnosed with MS in 2010. He had been receiving the DLA but in 2014 he faced a re-assessment to move to PIP.
Following the assessment, the 33-year-old father of three learnt he would no longer be eligible for the benefit and was forced to return his Motability car – a vital means of maintaining independence for many people with MS.
Jones said the assessor had no understanding of his condition: “I went through
all the questions on the form but there was no way to explain that with MS you
can have good days and bad days, but the good days are only marginally better.
On a bad day I can maybe walk 10 metres without pain but on a good day it
might be 12 metres.”
He didn’t challenge the decision at the time because he was so disheartened, saying he thought it was “pointless trying to fight it”.
In 2016 his wife talked him into applying for PIP again and he was able to get
his support reinstated: “This time around the assessor happened to be an MS
nurse and it was such a relief to speak to someone who knew about the
“I’m grateful to have this support back but the whole process made me feel like
a liar. It was only by chance that when I reapplied the assessor understood MS.”
Jones added that the PIP system needs to change because it’s failing people with MS.
The report found that as well as the new 20 metre rule, there were several other issues with PIP including how the assessments are carried out, the poor criteria used and the fact that assessors often have limited knowledge of MS.
In a survey of people with MS, of those who had support taken from them in the transfer from DLA to PIP, the charity found that two-thirds (65%) said the transition had a negative effect on their MS and 39% increased their use of GP services.
It also had financial implications with over a quarter having to borrow money from family or friends and 39% having to reduce spending on food.
Alyson Lanning from Shrewsbury, Shropshire, who was diagnosed with MS in 2009, called the PIP assessment system “crass and punitive”.
She lost £147 a month after having missed the criteria for enhanced support by three points after a 40 minute assessment during which she said she was asked “demeaning and degrading” questions.
She said: “It seems to me that the premise is that you are cheating and not telling the truth and that your illness is not as bad as you say it is because you look fine on the day they come.
“It’s really crude and doesn’t account for MS being a spasmodic illness which means that one day I can hold a cup, other days I cannot. Today I can use both my hands. Tomorrow I may well not be able to use my right hand at all, this is idiosyncratic of my own situation.
“In the old assessments, you were always told to measure how you were based on when you were at your very worst. With PIP, you feel they like they are looking to trip you up on everything. They also don’t seem to take into account what medical professionals say.”
The money she has lost is significant to her, she said, especially when there are many hidden and additional costs involved if you have a disability such as requiring cleaners and personal care services and having to pay for holiday accommodation that caters for disabilities.
Dyelia Morgan from London, who was diagnosed in 2008, said the PIP application process was “absolutely terrible”.
She said: “The assessor was late, their report was sloppy, my answers to the question were misinterpreted or just plain wrong. I complained and they admitted they were wrong.
“With help from my family, I appealed successfully, but I had to endure the whole process for five months.”
Waqar Rashid, consultant neurologist at Royal Surrey County Hospital University Foundation NHS Trust, said that because MS is a progressive condition, needs will only increase.
He said: “What we’re seeing with PIP implies people are getting better as they are losing vital support. There’s no scientific rationale or basis for the recent change to the 20 metre rule and it’s impacting services as well as people with MS.
“I see people become isolated and depressed, and then contact GPs with more related issues. I’ve even seen patients asking MS Therapy centres to provide additional services that PIP would have paid for.”
Genevieve Edwards, director of external affairs at the MS Society, called for PIP to be reformed, starting with the 20 metre rule, which she said should be scrapped.
She said: “Contrary to the government’s insistence that PIP is meant to help those with the greatest needs, the truth is it’s causing enormous harm to people with MS, with many losing their independence as a result.”
Sue Bott, deputy chief executive of Disability Rights UK, said the MS Society report reflects what all disabled people are finding.
She said: “There are so many problems with PIP. It is having an enormous impact on all disabled people. There is a lack of clarity in decision making and the whole process is very stressful. It needs a complete overhaul.”