People with epilepsy unsatisfied with PIP assessment

Published: November 29 2021
Last updated: September 28 2022

Research reveals “chronically flawed” Personal Independence Payment system.

Over two-thirds (68%) of people with epilepsy have been left ‘unsatisfied’ or ‘very unsatisfied’ with their Personal Independence Payment (PIP) assessment, according to new research by national charity Epilepsy Action.

PIP is a government benefit designed to support people living with a long-term health condition or disability with the added costs of care, including daily living and mobility.

Epilepsy Action has called the system “chronically flawed” and has said it is “failing people with epilepsy”. The organisation is calling for a drastic overhaul of the PIP system, “including fairer assessments and reporting to ensure people receive the support they need”.

In the survey of 700 people who have claimed PIP, four in five (82%) respondents stated that their assessor did not understand epilepsy and over three-quarters (78%) said they did not believe their medical evidence was taken into account.

Two-thirds (68%) of respondents also said their PIP assessor did not record their answers accurately, and over half (58%) said the PIP application form did not allow them to fully explain their condition.

Of the successful PIP claimants, 63% reported that the money they received was not enough to cover their extra living costs.

Unwilling to understand

Epilepsy Action has criticised the assessment process and is calling for better medical training for assessors on fluctuating and invisible disabilities like epilepsy. This is following evidence from survey respondents that assessors were “unwilling to understand their condition”. Respondents said that assessors made “informal judgements” about their health based on observations unrelated to their condition.

One respondent said: “My report stated I wasn’t suffering from depression because I gave her eye contact throughout the interview, even though I had evidence from the doctor stating otherwise.

“In the report, they miswrote some things and outright lied about others. They claimed I couldn’t have medical issues or seizures because my nails were painted.”

Another survey respondent, Hannah, said ignorance and lack of awareness of epilepsy is the biggest problem for herwhen applying for benefits: “I felt in PIP assessments that the evidence I provided was completely disregarded and as a result, I only get half the amount of money I qualify for. I only get the mobility aspect, but not daily living.”

For others, the stress of the process was harmful to their health. Vicky appealed against her PIP decision. She said: “Going through the tribunal was very stressful which caused me to have more and stronger seizures.”

Another respondent, Hayley, was put off reapplying for PIP after her previous experiences. She added: “This whole process is more stressful than I care to experience as my main trigger [is] stress. How can I not be stressed at the idea of losing my home, my health and my independence and much more?”

Harmful and concerning

Daniel Jennings, senior policy and campaigns officer at Epilepsy Action, said: “Applying for PIP is an ordeal for many people with epilepsy. Our survey clearly exposes the flaws in the assessment process, which have not improved in eight years.

“There is a woeful lack of training and assessors are quick to dismiss the severity of the condition. They are not looking at medical evidence or considering how unpredictable epilepsy can be.

“Not only that, the snap judgements made during interview are harmful and concerning. How can anyone hope for a fair assessment when they are penalised for walking across a room, or their seizures aren’t deemed ‘serious’ enough?

“The PIP process is confusing and full of stressful hurdles, designed to put people off appealing. At a time when people are struggling financially, we need to remove these barriers and make the system fairer and more transparent. This will help claimants with epilepsy afford the added costs that come with their condition.

“We are calling on the DWP to provide assessors with proper training, to simplify the application process and to reform the system so it captures the reality of living with a fluctuating, often hugely debilitating, condition. We would be happy to work with the DWP and assessment providers to ensure that their ‘condition insight reports’ accurately reflect the full impact of epilepsy.”

There is more information about the Epilepsy Action welfare survey and campaign work around the issue on the Epilepsy Action website.