If you would like to talk to someone about epilepsy, our trained advisers are here to help.
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 in the hope it would make a difference. 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 can impact my life a lot – it affects my memory and I can 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 as when I have a seizure it’s my right arm which shakes the most and thumps things. I have very little energy too and can’t get a paid job, so my husband does a lot of work to support and look after me. He then gets exhausted which makes me feel guilty.
I’m not allowed to drive so I must either get a lift off a friend/family, get a taxi or use public transport but I can’t travel far on public transport. I hate using public transport as I’ve been bullied and shouted at a lot for not looking disabled but sitting in the disabled seats, even though they’re the only seats I can use without pain given a coccyx injury I have.
On a scale of 1 to 10 for how stressful I found the process when applying for PIP, I would say it was a 10. The assessor was hopeless and left out a lot of information I’d told her or misquoted me about what I put in my form. For example, I told her I need my pills in blister packs from the chemist as I can’t organise them myself and that I need to have reminders on my phone to take them, but even then my husband has to remind me as sometimes I don’t notice the phone reminders when I’m really tired. Yet despite this, the DWP said I needed no help/points for handling my medication as the assessor hadn’t included any of those details in her report.
I also found it very stressful going through the tribunal which caused me to have more frequent and stronger seizures. I was initially turned down for PIP – the DWP gave me a deadline to send my appeal letter in by but it took over three months to get the medical report from my assessor so I knew what to put in the appeal letter. So I had to guess what to write in the letter to get it in in time for the deadline. If I’d received the report on time I could have written a more relevant appeal letter and maybe I wouldn’t have had to go to court.
My PIP has been extended until December 2024, but I hate the thought of re-applying and am worried about the cost of living going up as I very much doubt they’ll increase PIP accordingly. I attend a pain support group with other disabled people and no-one likes the DWP because they’ve caused so many problems for all of us with our PIP claims. I want the DWP to be more organised. They shouldn’t give people a deadline to appeal their case and not provide us with the documents we need to prepare for the appeal until after the deadline. I want them to employ more qualified and more professional assessors – not ones who miss out vital information that they’ve been told in their reports.