“How would you eat a boiled potato?”
This was the question repeatedly posed to a man with multiple sclerosis (MS) during his assessment for the disability benefit Personal Independence Payment (PIP).
He tried to tell the assessor he doesn’t generally eat boiled potatoes and relies on microwave meals. A tremor in his hands means it’s difficult for him to cut food. But he kept being asked this question again and again until the assessor felt satisfied the man could “use cutlery to eat his meals”.
As absurd as this story sounds, assessments like this are leading to thousands of people with MS being cheated of vital support. Since PIP was introduced in 2013, one in four people with MS have had their benefit reduced or cut altogether, often incorrectly, because of an inappropriate assessment process.
Over 100,000 people have MS in the UK. It’s a condition which damages nerves in your body, making it harder to do everyday things like walk, talk, eat and think. It can be relentless, painful and exhausting.
MS is also expensive. A neurological condition like MS can increase living costs by around £200 a week. That’s why disability benefits like PIP are so important. Having an adapted Motability vehicle, or the money to pay for things like physio or counselling can make a huge difference to someone’s independence and quality of life.
But our new research reveals how the PIP process is failing people with MS at every stage. From tackling the complex form and proving how their disability affects them, to challenging an incorrect decision – people tell us it’s humiliating and degrading to spend months fighting for PIP.
In a survey of nearly 900 people living with MS in the UK, two thirds (65%) of respondents struggled to complete the PIP application form. Over half (55%) who had a face to face assessment don’t believe their assessor had a good understanding of MS. And of the respondents who saw a copy of their assessment report, six in ten (61%) don’t believe it gave an accurate reflection of how MS affects them.
The lack of knowledge about MS is particularly worrying when assessors use ‘informal observations’ in their decision making. These are judgements made by what assessors see rather than what they are told. When these are used without being backed up by evidence, they often lead to inaccurate decisions. Of the respondents who said their report included ‘informal observations’, nearly half (48%) said their assessor incorrectly assumed they could do something else.
Liz told us her assessor wrote in her report that she observed her picking up a medium-sized handbag to remove a purse. This led the assessor to conclude Liz could prepare and cook a meal. Ben’s assessor never saw him walk, yet she decided that because he can drive his Motability car to work, he could walk between 50-200 metres.
Currently 83% of people with MS who appeal their PIP decision after moving from the previous benefit, Disability Living Allowance, win their case at tribunal. This shows how unfit assessments continue to be.
Ahead of the coming election, we want politicians to recognise that people with MS deserve a welfare system they can trust. Decisions should be backed up by evidence not assumptions, and assessors need to have good knowledge of MS. We’re calling on the next UK Government to commit to fixing PIP, once and for all.
Having MS is hard enough – it shouldn’t be made harder by a welfare system that doesn’t make any sense.
Genevieve Edwards is Director of External Affairs at the MS Society.