🔴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. 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.
So what can you do to help #MakeWelfareFair for people with epilepsy?
Head to epilepsy.org.uk/welfare-campai… and write to your MP with your own experiences of PIP. We need as many MP's as possible to support our work and make sure changes are implemented. Thank you.
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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
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.
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.”