Ten years of PIP: “Claiming disability benefit PIP has negative impact on health” say two in three people with MS

​Tom Hunter from Islandmagee lives with MS and runs a counselling service for the MS Society in Northern Ireland. Tom’s MS now means that he walks with a crutch, lives with chronic fatigue, pain and cognition issues. He struggles with household tasks and needs assistance and aids for personal care and moving around.

Tom was himself assessed for Personal Independence Payment, or PIP, ( the main disability benefit people with MS claim in the UK, having replaced Disability Living Allowance (DLA) in 2013), a process he found distressing and dehumanising. Since then, through the counselling service, he has helped many people cope with the emotional distress PIP has caused. He has also campaigned on the issue and worked with both the Department of Communities and Capita to improve the process for people in Northern Ireland.

He said: “The first time I was assessed, about eight years ago, I got marked down for things like being appropriately dressed and being able to drive a manual car. These observations were totally inaccurate; my wife helped dress me and my car is automatic and adapted. I provided a report from my neuro physiotherapist and my MS Nurse both of which were completely ignored by the assessor. I could tell I was being judged because I can speak eloquently and articulately too. But that isn’t always the case, I struggle with cognition issues every day. That is the nature of a fluctuating condition.”

More than 5,000 people in Northern Ireland live with MS and more than 130,000 people in the UK, with 130 diagnosed each week.

For their new report PIP and MS: A Decade of Failure’ , the MS Society surveyed over 3,500 people living with MS – its largest ever study into PIP.

Findings show:  Almost two-thirds said going through the process had a negative or very negative impact on their physical and mental health;  over six in 10 said their assessment report did not give an accurate reflection of their MS; almost half said they felt that they did not receive the correct award; nearly three quarters said the assessment made them feel anxious, while over two-thirds said it made them feel stressed. Over a third said that it made them feel embarrassed. 

MS is a condition where the immune system attacks the coating which protects our nerves. Symptoms are different for everybody, but can often be invisible, and can fluctuate from day-to-day. However, the MS Society said the rigid PIP assessment criteria fails to take this into account. Its survey found that almost two-thirds didn’t feel the assessor considered their invisible symptoms such as pain, fatigue or cognitive difficulties.

Tom added: “As a counsellor and psychotherapist I have also seen the quite dramatic impacts the PIP process and decisions have on people’s lives. This benefit has brought about quite profound emotional and mental health consequences for people and made them both physically and emotionally worse. Lots of it avoidable….In failing to understand fluctuating conditions and invisible symptoms in particular, the PIP process continues to bring distress and anxiety to already vulnerable people.”

The MS Society is asking the government to review and overhaul the PIP process, ensuring it more accurately reflects how people are impacted by living with MS. It said this must include:

*Scrapping the ‘20-metre rule’ for assessing mobility. Right now, if a claimant can ‘reliably’ walk just one step over 20 metres they will not receive the higher rate of mobility support. This has caused many people with MS to lose vital financial support. 

*Removing all ‘informal observations’ for people living with fluctuating conditions like MS. This is when a claimant’s ability to do a certain activity is judged based on how they look or behave during the assessment – rather than on medical evidence. But these only provide a snapshot view. They do not accurately reflect the impact of MS over time, or even day to day. 

*Changing the ‘50% rule’ for assessing fluctuating conditions. Under this rule, if someone’s MS affects their ability to carry out an activity more than half of the year, then it must be considered as affecting them all the time. Equally, if a condition or disability doesn’t affect their ability to do an activity half the year, then it can be ignored. But this rigid and arbitrary measure does not work for a fluctuating condition like MS. The MS Society says it must be changed to consider frequency, severity, and impact of symptoms over time. 

David Galloway director of MS Society NI, said: “It’s the 10th anniversary of Personal Independence Payment (PIP). In Northern Ireland there was a slight delay to implementation and some mitigation, but we still aren’t celebrating!

"Living with MS can be exhausting, painful and debilitating. Yet on top of managing gruelling symptoms, too many people with MS 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 continue to be assessed by a benefit system which doesn’t understand and isn’t responsive to their condition. There are clear ways in which PIP can and must be improved... Ten years of a broken PIP system has meant a decade of stress, indignity, and humiliation for people with MS. 

To sign the MS Society’s petition calling on the UK government to launch a full review into PIP https://www.mssociety.org.uk/fix-pip