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Action for M.E. responds to independent PIP review

September 16, 2016

Action for M.E. has responded to the second independent review of the Personal Independence Payment (PIP) assessment. We are hugely grateful to the more than 300 people with M.E. who responded to our PIP survey last month, whose input shaped our response, highlighting recurring key issues and concerns.

This review focuses mainly on supporting evidence for PIP claims and appeals, and the experience of claimants throughout the process. Based on the experiences of people with M.E., our response to the review highlights the clear need for clearer guidance on:

  • whose responsibility it is to collect supporting evidence
  • exactly what supporting medical evidence should be provided, and how much
  • how that evidence weighs in the assessor’s decision
  • for decision-makers, using this evidence appropriately and fairly.

We also identified a number of barriers to submitting supporting evidence. Of those who did not submit any with their claim:

  • 56% said that they did not have sufficient energy to collect further evidence
  • 34% said they weren’t sure what kind of further evidence to submit
  • 21% said collecting further evidence cost too much money
  • 11% said they did not have enough time. One person with M.E. told us they “felt [submitting further evidence] was very important but the time constraints did not allow this” while another said, “It took me so long just to complete the PIP form."

A number of respondents also mentioned that they did not have an appropriate professional to request medical evidence from. One person with M.E. told us: “At first I asked my GP, who was willing to help, but realised she didn’t understand the information needed to support my claim, nor did she have a detailed enough understanding of how my illness affected me day to day.”

Regarding the PIP assessment process overall, we gave the clear message that, in the words of one person with M.E., the companies undertaking the assessments “need to have a clearer and better understanding of how M.E. affects someone’s life by spending time and money really learning about it, in particular the cognitive difficulties.”

Paul Gray, who is leading the review, will now consider all the evidence submitted, and publish a report on his findings and recommendations, to which the government will respond in due course.