10 Years of PIP Is No Cause For Celebration: New MS Society Report

Thu,2 November 2023
News Benefits
In a new report, the Multiple Sclerosis (MS) Society says the 10 year anniversary of Personal Independence Payment (PIP) is nothing to celebrate as the “broken PIP system has meant a decade of stress, indignity and humiliation for people with MS.”

The report details how many people with MS have been let down by the PIP process over the last 10 years and too often missed out on the support they need.Earlier this year, the MS Society surveyed over 3,500 people living with MS and found that:

  • 2 in 3 (65%) said the PIP application process had a negative, or very negative, impact on their physical and mental health
  • 6 in 10 (61%) said their PIP assessment report didn't give an accurate reflection of their MS
  • over 3 in five (62%) said their PIP assessor didn’t consider their hidden symptoms

The MS Society detail that there are problems at every stage of the PIP process: “The application form is too long and complex. And it doesn’t allow people to accurately explain the impact of their condition. “Often people’s medical evidence isn’t collected by assessors.“The assessment fails to properly consider how people’s MS affects them. Like the impact of fluctuating and hidden symptoms. “This is because of rigid and arbitrary criteria. Such as the 20-metre rule and 50% rule, which assess mobility and fluctuation.“Informal observations are sometimes used by assessors to assess people’s condition. But these only provide a snapshot view. They don’t accurately reflect the impact of MS over time.“Sometimes people with MS are shocked when they get their assessment report because it contains factual errors. And it fails to reflect how their MS impacts them.”As a result, the report says, issues like these mean many people with MS miss out on the support they need. Often people are only able to get the support they’re entitled to after going through a stressful and lengthy appeal process although many don’t have the energy to do this.The MS Society makes the following key recommendations:That the Government must full review and overhaul the PIP process to make sure it more accurately reflects how are impacted by living with MS.This must consider:

  • scrapping the 20-metre rule, and replacing with the 50-metre threshold until an alternative is found
  • scrapping informal observations for people with fluctuating conditions
  • changing the ‘50% rule’ for assessing fluctuating conditions
  • changing how people’s ability to plan and follow journeys is assessed to make it more person-centred.

The MS Society report PIP and MS: a decade of failure is available from mssociety.org.uk.Note: Reading Welfare Rights has also published a report on clients’ experience of PIP and making recommendations for change – Ten years of PIP A decade-long mistake?.See also our related news stories: