So unfair: Hi I have epilepsy its disgusting... - Epilepsy Action

Epilepsy Action
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So unfair


Hi I have epilepsy its disgusting how these people can lie through their teeth yeah we may b ok for the half hour their interviewing that doesn't mean we r fit for work (some of us) I dont work due to NY seizures. Anyway the woman told DWP I was fine I knew how to communicate I could count to 20 no bother I couldnt spell a word backwards she said I can cook go up n down stairs go out myself. Pathetic beyond bieleve she said I didn't HV any health professional input I had a witness from epilepsy connections sit with me as well as my partner I had letters from my neurologist my specialist told them I'm still taking both types of seizures how the hell can thy lie about the PROOF I gave them and due to all the stress the fits r getting worse they HV stopped my benefits without warning I have a teenage daughter who sees the seizures and do they think thats ok for the kids to witness their mums and dads all over the place do thy think thats ok its not and its ok for these decision makers to destroy our lives with more worry and stress do thy want videos of me taking a seizure well thats the last thing on the carers minds oh let's take a video of me falling to the floor taking convulsions eyes rolling to the back of my head n my daughter screaming dont die mum it breakers my heart every day k owing my daughter and my partner see the seizures is that normal everyday life to them I'd like to see them watch a loved one put their life in danger or their children seeing it they ought to ask the kids how thy feel coz its their lives thats affected every day my daughter goes to school not knowing if I'll b here for her gettn home from school. They award drug addicts full payments its ridiculous they have a choice we DONT. I will take this all the way and I won't take their answers and lies lightly we HV no food we r going to get into housing and council tax arrears aye nae bother!!! Pathetic!!!!?

4 Replies

Hello Helen,

I am very sorry to read of your dilemma, however the Personal Independence Payment (PIP) has been reviewed by Parliament.

Please telephone Epilepsy Action at Leeds and they will better equipped to advise you about PIP

Epilepsy Action telephone number is: ‭0808 800 5050‬

I wish you well.

I just sent this to my local MP the "Epilepsy PIP Pledge" there are people who feel EXACTLY the same as yourself, me included, at present 15 MP's have signed the pledge so there is something going on to hopefully relieve this problem?

"Epilepsy PIP Pledge

I am writing to you as my MP to ask you to take the Epilepsy PIP Pledge.

The Personal Independence Payment (PIP) assessment process is failing people with epilepsy. This is causing many people to miss out on an award that they are entitled to. This is an award that would have a positive impact on their daily lives.

60% of people with epilepsy who were previously in receipt of Disability Living Allowance (DLA) have had their award decreased or disallowed following a reassessment for PIP. Epilepsy is the condition with the highest rate of people having their award decreased or disallowed.

Shaun Cheyne, 61, losing £310.60 a month overnight when I was reassessed from DLA to PIP. A medically registered retired genealogist and historical researcher, having had epilepsy since the age of 14, with over 400 Grand mal seizures. Pleading that everything about the PIP application and assessment is terrible. This PIP system does not take account of people with fluctuating conditions like epilepsy. It is so frustrating and quite frankly embarrassing trying to explain every aspect of my condition and how it affects my life, then seeing the DWP being so dismissive in their conclusions.

The tick boxes they use to assess how people are ineffective and don’t work for people like me. They took no consideration of the fact that every day is different, and that I don’t know what each day will bring. Good days and sometimes very bad days!

As my MP, taking the Epilepsy PIP Pledge will mean:

• You recognise that the PIP assessment process is failing people with epilepsy

• At every opportunity, you will highlight that the PIP assessment process is ineffective, inadequate and unable to capture and reflect what it is like to live with epilepsy

• You will support the need for a fairer PIP assessment process for people with epilepsy

• You pledge to do all you can to make the PIP assessment fairer for people with epilepsy

There are over 600,000 people with epilepsy in the UK. By taking the Epilepsy PIP Pledge, you are helping those who need it most get this vital support.

To take the Epilepsy PIP Pledge you must email at Epilepsy Action, or call 0113 210 8847. They will be waiting to hear from you.

I look forward to your response.

Yours sincerely

Shaun Cheyne"

Good luck!!

all the best


Hi Helen we are in the same boat got the award back in 2014 but only received in 2015 after appeal went from 6 points to 13 and 10 for mobility awarded for 3 years reapplied in march this year his condition has got worse, letters upon letters from neurologists backing evidence yet again knocked back this time zero points, are awaiting date for appeal again, 294 pages sent from DWP today asking the tribunal to uphold their decision, think again after the upper tribunal ruling against epilepsy keep fighting like we do x

Hi I'm just about to do my re apply now I only got the mobility side but I do have five years of medical I'm throwing at them also I have to have someone on the phone to me at all times like showering and cooking as I live alone now I don't hold much hope of getting the care side back like everyone else has said where healthy in pip's eyes

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