Epilepsy Action Profile picture
Nov 29, 2021 7 tweets 4 min read Read on X
68% of people with epilepsy have been left ‘unsatisfied’ or ‘very unsatisfied’ with their PIP assessment, according to our latest survey.

The system is chronically flawed and failing people with epilepsy. A drastic overhaul is needed.

epilepsy.org.uk/welfare-campai…

#MakeWelfareFair
In the survey of 700 people who have claimed PIP 82% stated their assessor did not understand epilepsy, and that the PIP claim form and assessment questions do not accurately capture the difficulties of living with a fluctuating and invisible condition.

#MakeWelfareFair
78% of people said they did not believe their medical evidence was taken into account.

“I was told that I have no cognitive or memory problems when the medication I am on cause memory issues and delayed processing and I have had severe seizures for years.”

#MakeWelfareFair
Two-thirds (68%) of respondents said their PIP assessor did not record their answers accurately #MakeWelfareFair
58% thought the PIP application form did not allow them to fully explain their condition and that the intricacies of epilepsy were not taken into account #MakeWelfareFair
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.

Find out more and how you can help by writing to your MP at epilepsy.org.uk/welfare-campai…

#MakeWelfareFair

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More from @epilepsyaction

Nov 30, 2021
Thank you Vicky for sharing your experience of #PIP with us in this thread 👇

"I was born with nocturnal epilepsy and have tried many medications but none have been able to fully control it and my epilepsy is too widespread to have surgery. I had a VNS fitted in March.
Sometimes I now have tonic seizures or short clonic seizures instead of tonic-clonic and partial seizures though I do still have some tonic clonic and partial seizures. I also have problems using my right arm following a suspected stroke when I was a baby.
All of this impacts my life a lot - it affects my memory and I struggle with basic things such as cutting up bits of food. I know some of this is linked to my stroke but know my epilepsy is also a factor. When I have a seizure it's my right arm which shakes the most and thumps
Read 15 tweets
Nov 29, 2021
🔴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?
Read 5 tweets

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