Functional Neurological Disorder - FND Hope
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Dissociative Non Epileptic Seizures & claiming Disability Living Allowance

Hi

I've been encouraged to apply for Disability Living Allowance (now known as PIP). This is my 1st application. Has anyone else applied & what has been your experience? Did you get called to a medical assessment - bit difficult I think for our condition as our seizures are completely out of the blue. I hope that having had seizures in front off all my Consultants and GP and hospitals admissions and A&E doctors will help to avoid a medical assessment.

I think that if I do have an assessment it will trigger a seizure anyway.

Cheers

Lou

11 Replies
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Hi

I was on DLA and got transferred to PIP two or three years ago - first phase.

I have ME, FND of gait and a history of very occasional non-epileptic seizures, although the last one of those was about 4 years ago now.

I was 'lucky' in that my assessment was carried out by someone who was (a) relatively human (b) quite understanding and (c) seemed to have some experience of ME, if not the FND. That meant that when she saw that as well as having ME (which is to a great extent invisible, unless severely affected) I couldn't really walk much/at all she seemed to be quite sympathetic. I wasn't really doing very well at the time. That was pure coincidence as my condition fluctuates quite widely. I was quite open with her about that.

So I wasn't sure when I left the office that I would be awarded....you read such horror stories.

But when the assessment came through I was on top care and top mobility, with an acknowledgement that my condition was known to fluctuate and that this was therefore to be expected, and that I would not need a review for another 5 years. I can expect to go back in a year or so. Whether I will be able to walk on the day of the assessment when it comes....who knows? Whether I will be granted top care or mobility again, I doubt.

Medical reports only rarely get taken as read without an assessment. Just to warn you.

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Hi

Just waiting for my assessment, but that are coming to my home address, as I pointed out that I'm also a carer to someone with limited walking and severely partially slighted. Mine find changes a lot and hits me out of the blue for really bad attacks. My worse time is approaching as garlic coming into season.

So fingers crossed my assessment is on 9 March applied in December, so it takes a long time to sort out.

Colin- Isle of Wight

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Hi

Hope the assessment goes well. They say 16 weeks on the form that the decision should be made - just 4 months eh? Wouldn't need to be desperate would you. I've had a week of hell - 2 or 3 prolonged seizures per day and now I've started making uncontrollable completely uninterpretable pitiful noises - i"ve even tried to shove my fist in my mouth to stop the sound. The noise only stops once my paralysis kicks in. My husband has to wrench my fingers and fists out of my mouth. Oh so attractive. But hey I've got my tattoo to look forward to in August by an award winning tattooist who has battled and won alcoholism and drug addiction.

Let me know how the assessment goes - let's hope the doctor is half human! I'll be thinking of you on the day.

Cheers

Lou

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Hi Lou,

I know different country's have different rules etc. I've not a a seizure in 6 months. But yesterday I had an episode of tremors and jerking legs and blurred vision. I ended up just taking all my pills and going to bed. Because I don't like my kids seeing me like that.

I still have my license but I choose not to drive.

I had a 24 hr VEEG done back in 2015 in Spain showed non epileptic sezuires. Due to flashing light stress test. I can't find that report. So they are repeating the EEG.

I chose not to drive as it does make me anxious. I'm not sure if this helps. I'd rather be checked first before they try take it away.

Ali xx 💕

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Hi Lou, I have these as well, they are not fun. However if they run an EEG on you, they may not find anything that is medically causing it, which makes it fun for disability stuff. I had a video EEG done, and my Neuro said everything looked fine, however I seized 2 times during the test, and even knocked the electrodes off because of it, but she didn't say much about it. However I am in the US and have a different system. I have attempted 2 times to apply for disability, and am now waiting to see a judge, which I was told could take up to 16 to 18 months to do. I am coming up on 11 months in a few days, so I have a while to wait. These seizures suck! I know with mine I am completely conscious, all senses are aware of what is happening, and it gets to hurt after so many. My record so far is 42 I believe in 3 hours time. Once they are done, I am completely wiped out, My voice is usually gone, or unable to get words out, my motor functions are screwed up for a while and it takes my body time to basically reboot after having them to be able to function. I feel your pain, and I hope you can find answers. Houseman (Dan) and I are attending a conference on Friday in Georgia specifically on FMD/FND and will be asking about these seizures and what can be done about them. I am praying that we can come back with some answers for everyone. Best of luck to you.

Cheryl

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Hi, I think they make everyone attend an assessment. You can ask for an assessment at your own home if you have problems going out because of seizures etc.

I hope it all goes well for you. Xx

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hi lou ive just applied and as far as I know everyone has to have the face to face appointments if you have filled the form out well done you've made it through that form if you haven't don't give uo its tough going but it does end there is a good page on citizens advice webpage if your stuggling with the form x

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Has anyone who has non epileptic seizures found out the cause of them? What makes them happen?

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I've gotten PPI with FND. But the system is now set up to fail so would strongly advise getting help filling in forms - I'm signed up with fightback4justice.co.uk/ who have an impressive track record. I have a PhD and when my renewal comes up I won't be completing the forms - I will get these guys to do so. Not because I don't understand the form but because I don't know the latest legal precedent, the key way to phrase issues, etc etc. Like I say the system is currently set up to fail people with disabilities - so we need to be careful how we interact with it - it can be very damaging

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I applied, had the assessment and have been knocked back totally scoring zero on all aspects. This was despite the Citizens Advice helping fill in the forms and us showing video evidence of my walking difficulties, attacks and tremors etc etc. Me and the wife can't believe it. My symptoms are daily and living a fully functional life is hard to say the least. Their response contains wording that clearly reads 'there's nothing wrong get on with it'. The neurologist said to give up driving and surrender my licence because of the seizures, cramps and tremors but the assessors says in his opinion I can drive because I show reasonable cognitive function. That in itself is rubbish because my Mrs has had to take on all bills etc because I can't get simple things through my head and it's took 20minutes to type this. Also, because I walked from the waiting room to the consultation room (with an elbow crutch I use daily) which he said was 20 metres (which it wasn't) it is his opinion I can walk over 200metres. How is that calculated? I will appeal against the lies after my next neurology visit in October. They've absolutely no understanding of the problems we have to face with this disorder and an insult to a bloke who's always worked hard and served this country from being young. I'm pleased for those who have been granted their PIP payments, but will advocate not putting too much hope on being awarded anything. Does anyone know if there's any truth in the Daily Mail expose of assessors getting bonuses for those they cap or knock back?

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I applied, had the assessment and have been knocked back totally scoring zero on all aspects. This was despite the Citizens Advice helping fill in the forms and us showing video evidence of my walking difficulties, attacks and tremors etc etc. Me and the wife can't believe it. My symptoms are daily and living a fully functional life is hard to say the least. Their response contains wording that clearly reads 'there's nothing wrong get on with it'. The neurologist said to give up driving and surrender my licence because of the seizures, cramps and tremors but the assessors says in his opinion I can drive because I show reasonable cognitive function. That in itself is rubbish because my Mrs has had to take on all bills etc because I can't get simple things through my head and it's took 20minutes to type this. Also, because I walked from the waiting room to the consultation room (with an elbow crutch I use daily) which he said was 20 metres (which it wasn't) it is his opinion I can walk over 200metres. How is that calculated? I will appeal against the lies after my next neurology visit in October. They've absolutely no understanding of the problems we have to face with this disorder and an insult to a bloke who's always worked hard and served this country from being young. I'm pleased for those who have been granted their PIP payments, but will advocate not putting too much hope on being awarded anything. Does anyone know if there's any truth in the Daily Mail expose of assessors getting bonuses for those they cap or knock back?

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