A veterinary nurse from Meanwood, Leeds visited Downing Street last week to demand the government makes urgent changes to Personal Independence Payment (PIP). More than 21,000 people signed the open letter for PM Boris Johnson, which Ashley Arundale, 29, delivered with MS Society ambassador Janis Winehouse (mother of the late Amy Winehouse).
Part of an MS Society campaign to make common sense changes to the process for claiming PIP, the letter highlights major flaws with the current system – including uninformed assessors, inaccurate reports and excessively complex forms.
Ashley lives with the relapsing form of multiple sclerosis (MS), and her symptoms include pain, vision problems and extreme fatigue.
She explained: “PIP is completely essential for me and many others with MS who want to live independently, yet the process is designed to trip us up at every turn. I don’t feel my assessor understood MS at all, and she gave me no chance to explain the condition. When I eventually got the report it was full of contradictions, and ignored anything I’d said that was inconvenient to her version of me. The report also said my condition could improve with specialist input. But treatment does not make MS better, it just stops it getting worse.
“I’m not an angry person but it makes me really angry – the total lack of knowledge was alarming. I thought about appealing but was afraid of making a fuss and losing the award altogether, which I know has happened to others. Right now I don’t feel supported by the system at all.”
MS is an incurable condition that damages people’s nervous systems, making it harder to do everyday things, like walk, talk, eat and think. Welfare support is vital for many people with MS, as it helps manage the extra costs associated with the condition.
Fabian Hamilton MP said: “Ashley’s tragic story is sadly becoming all too common. The majority of casework I deal with in North East Leeds is caused by the failure of PIP to be awarded to the people who so desperately need it, and I know Leeds is not alone.
“It is an outrage that this is causing so much distress to so many people across the country, and I would urge the government to listen to the tens of thousands of people that have signed the MS Society’s letter and act on its recommendations immediately.”
MS Society ambassador Janis Winehouse, who has secondary progressive MS, said: “I’m here today to support the people living with MS whose voices still aren’t being heard. Some of my closest friends have been through the exhausting and demoralising process of claiming PIP, and it can’t go on any longer. MS is relentless, painful and disabling, and right now PIP is costing many people their independence rather than giving it to them.”
Jonathan Blades, Head of Campaigns and External Relations at the MS Society, added: “The UK’s welfare system is in crisis, leaving thousands of disabled people suffering as a result. A process that was designed to protect society’s most vulnerable is now too often doing the opposite. More than 100,000 of us live with MS in the UK, and we needs common-sense changes to PIP now so people can get the basic support they need. This doesn’t require a lengthy consultation or elusive green paper – just decisions backed up by evidence, and assessments carried out by professionals with good knowledge of the condition.
“We hope the Prime Minister will read this letter carefully, and understand the impact these deeply flawed assessments are having. It’s about time we had a benefits process people can trust.”