Letter to PM for changes to PIP – MS Society

MS Society
“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.”

Today people with multiple sclerosis (MS) delivered a letter to Boris Johnson, demanding changes for claiming Personal Independence Payment (PIP).


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I’m not an angry person but it makes me really angry

A total of 21,042 people 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.

Multiple issues with the PIP process identified

Delivered to Downing Street today by MS Society staff and people living with multiple sclerosis (MS) 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 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 losing the award altogether, which I know has happens. Right now I don’t feel supported by the system at all.”


MS is an incurable condition

MS is an incurable condition that damages the nervous systems, making it harder to do things, like walk, talk, eat and think. At least 1/4 people with MS have had their PIP reduced or cut altogether, often incorrectly. Figures revealed 83% of people with MS who appealed their PIP decision 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. MS is relentless, painful and disabling, and PIP is costing people independence rather than giving it to them.”

UK’s welfare system is in crisis

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 live with MS in the UK, and we need common-sense changes to PIP so people can get basic support. 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.”


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  1. The MS Society conducted an online survey of 889 people living with MS between June-July 2019. Further research included 29 telephone interviews with participants who completed the survey. The survey shows:
  • 65% of peoplewho responded to the survey said it was hard to complete the PIP application form because of its length and complexity. 5% forced to abandon their claim altogether
  • Over half (55%) who had a face-to-face assessment don’t believe their assessor had a good understanding of MS
  • Six in ten (61%) don’t believe the report gave an accurate reflection of how MS affects them. Reasons included reports not recognising the fluctuating nature of MS, and failing to take invisible symptoms like fatigue and pain into account

Assessors frequently make ‘informal observations’ during an assessment. Of the respondents who said their report included ‘informal observations’, nearly half (48%) said their assessor had incorrectly made assumptions they could do something else. One survey respondent claimed the assessor saw her pick something out of her handbag, and assumed she could cook a full meal. These errors can influence critical decisions about the level of benefit a person receives.

More information about the survey’s findings can be found in the report: ‘PIP fails: How the PIP process betrays people with MS’, available at: mssociety.org.uk/PIP-fails (from 14 Nov)

  1. DWP data on DLA to PIP reassessment outcomes indicates that 23% of people with MS who were reassessed from DLA to PIP have seen their award reduced, with a further 9% who lost their award altogether prior to having an assessment. See: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/766240/pip-dla-to-pip-reassessment-outcomes-october-2018.xls. We calculated the rate of loss for new claims by comparing the rate of different awards for new claims under DLA (before PIP roll-out began) to the rates for new claims under PIP. Overall, this analysis shows that 24.3% of people with MS have lost out either via reassessment or a less generous award for a new claim. This is likely to be a significant underestimate as it does not include people who were entirely unsuccessful in a new PIP claim (as there are no public statistics regarding the comparable rate under DLA). Hence we use “at least one in four” as our overall assessment.
  2. Response by Minister for Disabled People, Work and Health Sarah Newton to Parliamentary Question 180081 by Stephen Timms MP on 22 October 2018 (https://www.parliament.uk/business/publications/written-questions-answers-statements/written-question/Commons/2018-10-16/180081/)



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