A dad diagnosed with multiple sclerosis (MS) said he "felt like he was on trial" during a gruelling PIP assessment.
Rob Denholm had a car crash in 2002 and experienced numbness in his hands and feet in the following years. However, it was only after a trip to America where the 43-year-old had issues with his balance that he realised something might be wrong – and in January 2006 he was diagnosed with relapsing MS.
Rob was initially signed onto Disability Living Allowance (DLA) but in 2019 he was automatically transferred onto Personal Independent Payment (PIP). The dad-of-one told the ECHO the difference between the two disability payments is "DLA is, you have MS, how can we help, while PIP is, you have MS – prove it".
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Rob, who lives in Newton-le-Willows, has now joined the MS Society's campaign to overhaul "10 years of a broken PIP system" which he claims has had a detrimental impact on people's health. Rob told the ECHO he was diagnosed with MS following an MRI scan at Whiston Hospital.
He said: "I was in a bed and they pulled the curtains around me and I immediately thought 'this doesn't seem good". When they told me everything went quiet – I didn't really hear what I was being told.
"The only person I know of who has MS is the actor Richard Pryor and he is dead. It sounds like a cliché but it was a bombshell."
Rob's symptoms include cognitive difficulties, fatigue and pain, and his walking ability varies from day-to-day. Despite his diagnosis, Rob qualified as a teacher and worked full-time until 2016 where "there came a point when the MS made the decision for me" and he handed in his notice. Rob went into supply teaching and then tutoring but has not worked since before the pandemic.
When asked what a PIP assessment was like, Rob said he "felt like he was on trial". He told the ECHO: "You have to constantly prove you have the condition – they would ask the same question in three different ways to try and catch you out.
"The whole way through I kept thinking 'I could lose everything' – something I said innocently could be used to trip me up. You feel like you're in a film when the spotlight is turned on you."
Rob gave the example of how essential the PIP assessment is to his everyday life. He said: "I can’t drive a manual car anymore because I don’t have the coordination, so I have an automatic car through the Motability scheme. But access to this scheme is determined by your PIP assessment.
"In my household with my son, I’m the only driver. So losing the car would have been awful. I can’t afford to get taxis and getting the bus isn’t an option either. By the time I get to the bus stop I’m exhausted."
Rob claimed when his report came back it was full of factual errors and the evidence provided by his neurologist was ignored. Rob has now called for an overhaul of the system to ensure the process more accurately reflects how people are impacted by living with MS.
He has called for a cross party overhaul led by independent medical professionals to ensure the needs of those being assessed are appropriately listened to. He has backed the "MS and PIP: a decade of failure" campaign being led by the MS Society who said the "rigid" PIP assessment process costs people "their time, health and independence".
The MS Society has asked the government to review the process and called for the scrapping of the "20m rule" to assess mobility, the removal of "informal observations" which are not led by medical evidence and a change to the "50% rule" which assesses fluctuating conditions like MS.
Anastasia Berry, policy manager at the MS Society, said: "Living with MS can be exhausting, painful and debilitating. Yet on top of managing gruelling symptoms, too many people with MS like Rob are forced to fight for the basic support they’re entitled to.
"MS is a progressive, incurable condition, which will usually worsen over time. Yet people with MS are regularly reassessed and made to prove their condition hasn’t improved. Ten years of a broken PIP system has meant a decade of stress, indignity and humiliation for people with MS."
Rob, who praised the support of the MS Society as well as that of his 12-year-old son Oliver, added: "I really feel for the people getting passed from pillar to post to get through the assessment. If me sharing my story can make it just a little less stressful for them then it can only be a good thing."
A spokesperson for the Department for Work and Pensions told the ECHO: "We support millions of disabled people every year and in the vast majority of PIP cases we make the right decision. We aim to provide a compassionate service and, where an in-person assessment is required, any claimant is free to be accompanied to their appointment to reduce stress or anxiety.
"All our disability assessors are qualified health professionals and we are investing in their skills as we improve the experience of the benefits system for disabled people."
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