'Without support I was left trapped in my own house' MS patient says benefits assessment system unfair

A new benefits assessment is failing those living with multiple sclerosis (MS), a charity has claimed.

Simon Matchett (39), is among a number of people affected by MS who lost financial support after receiving a lower award following a Personal Independence Payment (PIP) assessment.

He also lost his mobility car and with that, he said, his independence.

Mr Matchett has since had the decision overturned, but blasted the system which was introduced in 2016 replacing the Disability Living Allowance (DLA) benefit.

The Co Down man was diagnosed with MS in 2012 and had been receiving DLA at the highest rate.

However, following the PIP assessment, he received a lower award.

He described the experience as a "long, stressful and damaging process''.

"My personal experience of PIP was awful, a terrible assessment, an inaccurate report, the wrong decision and I had a battle on my hands to get a fair result,'' he said.

"Without mobility support I was left totally dependent on other people and trapped in my house.

"Calling it Personal Independence Payment is ridiculous, I was left more dependent. Unfortunately this happens to too many people. The system isn't fair and it doesn't make sense.''

An MS Society survey of nearly 900 people living with MS in the UK identified major problems with every stage of the claims process for PIP.

Some 65% of those who responded to the survey said they struggled to complete the application form due to its length and complexity, with 5% forced to abandon their claim altogether.

During the face-to-face assessment, over half of respondents (55%) did not believe their assessor had a good understanding of MS.

And of the respondents who saw a copy of their assessment report, six in 10 (61%) do not believe it gave an accurate reflection of how MS affects them.

Meanwhile, some 48% of respondents claimed their assessor had incorrectly made assumptions they could do something else.

According to the survey, one in four people with MS are having their PIP reduced or cut.

Now the charity has urged people to sign an open letter to the next UK government calling for it to make "common sense changes to the PIP assessment process''.

David Galloway, director of MS Society Northern Ireland, said 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,'' he said.

"This is made even harder when dealing with assessors who don't properly understand MS, which is relentless, painful and disabling.

"In Northern Ireland we have taken practical steps in facilitating people living with MS to directly train Disability Assessors in MS and fluctuating symptoms.

"So far this has been in small numbers but is just one example of a common sense change which can help improve things.

"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 the condition.

"We hope people will get behind this, sign our open letter, and make sure the next UK Government commits to improving PIP, once and for all.''

Referring specifically to Northern Ireland where the Stormont government has been collapsed for more than two years, he added: "We need to see progress on the recommendations from the independent review of PIP conducted by Walter Rader. We also need to see action on the welfare reform mitigation package which runs out in March 2020.

"While the Assembly remains in cold storage, people continue to be damaged by the PIP process and welfare reform. With the impending cliff edge of the end of mitigation this stands to get worse. Action is needed.''

A Department for Communities spokesman said: "The Department welcomes the acknowledgment of the ongoing collaborative working with the MS Society which has improved the PIP customer journey.

"In Northern Ireland more people under PIP - 38% - receive the highest possible award (#148.85) compared with 16% under DLA. Reassessment of the existing 128k DLA customers to PIP is virtually complete and 77% of customers have been awarded the new benefit, which is 6% higher than in Great Britain. Indeed a report published by the Office of Budget Responsibility in January of this year noted that PIP was costing more than if DLA had remained.

"Since June 2016 when the new benefit was introduced in Northern Ireland the success rate for new first time claimants who return the PIP application form is around 60% which is broadly comparable with success rates under Disability Living Allowance. Customers who are unhappy with the decision can ask the Department to reconsider and, if after that review a person continues to disagree with the Department's decision, there is then an opportunity to appeal to an Independent Tribunal.

"The first Independent Review of PIP was published in June 2018 and the Department issued its interim response in November 2018. The Department fully accepted seven of the recommendations contained in the report, partially accepted a further four and has taken steps to actively progress the accepted recommendations."

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