More than 21,000 people have signed an open letter demanding the government makes urgent changes to Personal Independence Payment (PIP) after a recent survey unearthed major flaws with the system.
Delivered to Downing Street today by MS Society staff and people living with multiple sclerosis (MS) – including Janis Winehouse, mother of the late Amy Winehouse – the letter highlights widespread concerns with the benefit, including uninformed assessors, inaccurate reports and excessively complex forms.
Ashley Arundale, 29, is a veterinary nurse from Leeds. She has the relapsing form of MS, with symptoms including pain, limited mobility, vision problems and extreme fatigue. She also struggles with anxiety.
Handing in the letter to Number 10, Ashley 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 the 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. At least one in four people with MS have had their PIP reduced or cut altogether – often incorrectly. Figures uncovered by the MS Society revealed 83% of people with MS who appealed their PIP decision after moving from the old benefit, Disability Living Allowance (DLA), won their case at tribunal – a success rate 12% higher than the general overturn rate for PIP.
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 need 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.”
For more information visit mssociety.org.uk