The proposed Green Paper changes are supposed to be all about getting people into employment. But as a number of claimants living with multiple sclerosis (MS) told the Benefits and Work PIP survey, cuts to personal independence payment (PIP) will have exactly the opposite effect – it will cost them their jobs.
Rachel, aged 45, says she “would lose £290 pounds a month which has helped me to drop down to 4 days a week as a social worker. I’m desperate to stay in my job but if PIP is taken away as I don’t get higher than 2’s in the categories I would have to go up to full time and I would not be able to cope with that. These changes are effectively going to force me out of a job I love.”
Jack, aged 58, feels “Shocked angry and totally let down by labour.my pip allows me to get taxis to work.if I lose my pip.and my carers .I will have to leave work as I will not be able to afford to get there. So this will have a totally negative effect not only on our income .but my condition.and my employment”
Laura, aged 59, says “pip helps me access work as it pays for incontinence products etc and part time work helps me manage health issues. . . I've worked full time from the age of 18 until 59 and I am been made to feel " lazy" , less than etc as, through no fault of my own, my body has failed me.”
FizzyFeet, aged 69, is no longer employed, but know how vital PIP was to keep her in work: “I did work when I was on PIP when younger and the car I had enabled me to get to work. Then I was reassessed and they took my car away in 2018! If they want the disabled to work then PIP is an access to work benefit in itself. Are they all stupid in the Labour Government!.”
For other respondents living with MS, work has ceased to be an option even though they don’t score any 4 point descriptors and so, in Labour’s view should be working.
Neuro Gal aged 55-60 said “I can’t leave my house, hold a pen, get hold of a sheet of paper, and have to use talk to type software. The most basic personal hygiene and care tasks are difficult to impossible depending on the day. I couldn’t get to an interview let alone work after 30+ years battling progressive MS.”
Beth, aged 29, is living with both MS and borderline personality disorder, amongst other conditions. Beth explains “I am not able to work. I can’t make it through a day without needing a nap due to pain and fatigue. I will end up sanctioned on uc due to not being able to attend appointments that need to be attended my life won’t be worth living. I’m terrified and seriously contemplating suicide if these go through. I will have no quality of life no independence I won’t be able to maintain my wheelchair due to benefits being cut so will end up bed bound.”
Pearl, aged 57, lives with both MS and autism amongst other conditions. Pearl told us “One of the most disabling issues of MS for me has been loss of bladder control. My brain and bladder no long communicate and I am reliant on catheters and adult nappies. I don't know when I need to pee, and I can neither start nor stop urination at will. This makes leaving the house particularly difficult, and I have more than once had to get home via public transport having very obviously wet myself, which was humiliating. . . The thought of going back to a life of constant fear and worry, is today the day they will fire me, how will I pay my bills when they do, etc, fills me with existential dread”
CatherineS2, aged 64, said “Having had MS for 25 years, in the past 3 years my illness has rapidly progressed from relapsing-remitting to secondary progressive and I cannot now walk without the aid of 2 sticks, even in my small two bedroom flat. One of the symptoms of MS is extreme debilitating fatigue, so whenever I try to do anything physically I have to subsequently rest for at least 30-60 minutes before resuming anything. . . No employer would take me on because I will not be able to guarantee to be able to turn up or submit any work on a reliable basis, and working would only exacerbate my fatigue. . . One of the symptoms of MS is incontinence. I would not score 4 points on this because I do not soil myself because I use incontinence pants which I pay for with my DLA/PIP.” CatherineS2 spends £72 a month of her benefits on Boots own brand pads.
In all, 14 claimants living with MS completed the survey, out of a total of 550. Only 1.5% of PIP claimants have MS as their primary condition according to the DWP, so it is notable that they are over represented here.
The symptoms these respondents describe are certainly not ones that "small interventions” or “aids and appliances” could relieve, as DWP minister Stephen Timms suggests.
Nor will support from a work coach help those who have had to stop work return, as Rachel Reeves claims.
And we don’t believe any of these respondents are “taking the mickey”, regardless of what Liz Kendall thinks.
Yet it is clear that a very significant number of people living with MS do not score 4 points or higher for any activity and so will lose their PIP daily living component on review after November 2026.
Perhaps you could write to your MP and ask them if they will really be voting to take PIP away from claimants with a debilitating and progressive condition like MS and, if so, why on earth they think it is a good idea?
You can read more about how we carried out our survey here.
You can search our survey results by keyword, including health conditions and you or your organisation is welcome to carry out your own research using the survey results.
