Epilepsy and tribunal!

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Hiya, I was diagnosed with epilepsy with grand mal seizures in April last year, Ive been rejected for PIP so far and have my tribunal on the 27th May, according to the atos report I should of scored 12 points on daily life and 8 on mobility checking the scores online. Anyway dwp rejected me saying I'm able to bath myself and cook myself without any difficulties. This is true, I can physically cook and bath myself but I must have supervision to do so as my seizures are still uncontrolled and unpredictable! On a good week I can usually just have 3 fits! But on a bad week can have 7 or more.. I managed to get a review off my epilepsy specialist stating what is safe for me to do and not do. However I sent it in just after I had the decision for MR. Will it still be taken into consideration in the tribunal? What is tribunal like? What sort of questions do they ask? Will my representative be able to talk too? Any advice would be appreciated.. Thankyou

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  • Posted

    Have you tried cab for advice I've just been for a tribunal myself I won it with the help of my wonderful husband and the very helpful cab lady just stay strong and stick to what you know is the truth you know how it affects you on a daily bases so just make it clear from personal experience they would not let my husband speak really they just prefer to hear it from you I would strongly advice you to take someone with you

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  • Posted

    Hi Natalie,

    You stated you're not controlled under Epileptic seizures, was this diagnosed by a Neurologist or just an Epilepsy Specialist?

    I got a feeling you can have the DWP for the wrong reasons. Seems they do not know much about Epilepsy from what you stated.

    Regards,

    Les.

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    • Posted

      It was diagnosed by a neurologist, but my medication is controlled by a epilepsy specialist and the epilepsy specialist comes out to see me regularly, I only see the neurologist every 6 months.
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    • Posted

      Hi Natalie,

      I'll just quote part of your post for a specific reason:

      "Anyway dwp rejected me saying I'm able to bath myself and cook myself without any difficulties. This is true, I can physically cook and bath myself but I must have supervision to do so as my seizures are still uncontrolled and unpredictable! On a good week I can usually just have 3 fits! But on a bad week can have 7 or more.. "

      As long as the Seizures are uncontrolled, I'm in the same predicament, but I suffer from Epilepsy which are (either grand mal or petit), but I also suffer from Functional Episodes (25 variations) - these are very similar to Epileptic Seizure, anyone that is around you, will not know the difference whatsoever. And, I have had Epilepsy for just over 30 years, I was only diagnosed with Functional Episodes 2 years ago.

      What I do not understand is this part:

      "Anyway dwp rejected me saying I'm able to bath myself and cook myself without any difficulties. This is true, I can physically cook and bath myself but I must have supervision to do so as my seizures are still uncontrolled and unpredictable!"

      Any professional Neurologist or Epilepsy Specialist should have told you this, because you are in a very dangerous situation. YOU should not be having baths if you suffer from ANY form of seizure!! The chances of having a seizure in the bath is around 80% higher than normal. Obviously, the DWP is useless and would probably not even notice, they are just a bunch of idiots.

      Getting back to your Epilepsy, you should have a word with Epilepsy Specialist about bathing in a bath, they SHOULD tell you not to bath at all. Here is what can happen in a bath, which you should have been told before now!

      Having a bath when you suffer from Epilepsy, I said increases the risk rate to 80% - then reason why this happens is because a bath water temperature can send your body in to "System Shock" - this happens if the water is either too cold, mild or too hot.

      You should have been told this along time ago! You can get a bath changed to a shower on a DFG. Ask your Specialist, you should find I am correct. You should contact Adult Social Services which is part of your local council. You need to ask for an Occupational Review regarding your bath, when you suffer from any type of seizure which can be fatal. They will send out an Occupational Therapist to ask them if you can have the work done under a Disability Funding Grant - applying now is the best time, considering it is the new financial year!

      Hope that helps you!

      Regards,

      Les.

       

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    • Posted

      Oh the epilepsy nurse told me I just need supervising in Bath incase I had one and drown! So my partner has to come and sit with me. I don't have a shower, I'm in a private rented property so didn't think I'd be able to apply for the grant for a shower? That's very helpful.

      Do you get PIP les?

      Thankyou for your help! I think I will need to speak to my landlord before asking council about it wouldn't I?

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    • Posted

      I'm on DLA, but I have many disorders apart from Epilepsy. I get both components on High Rates.

      Yes, if privately renting you would need their permission.

      There are other options like a Electric Bath Seat, so you can lower yourself in to the water, this creates a less shock to the system to cause a seizure! I can't believe you had not been told this before.

      You would still need supervising with a electric bath seat, when you are in the bath the seat doesn't lie flush to bottom of the bath...

      There are different options around which an Occupational Therapist will go through with you. An Electric Bath Seat is serviced every 6 months, and can be removed from the bath, they just stick to the bath, on 4 sucker feet, which holds it in place.

      If you need to speak to me privately, you can Private Message me by clicking on the grey envelope under my name. Some people tend to shut themselves off, on a public forum.

      I'm well known on here anyway!

      If you need me, I'm always around.. I have a vast knowledge of Social Services, Adult Care Services, etc.

      Regards,

      Les.

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    • Posted

      Thankyou very much I will definitely look into it, it's so hard having to explain how it effects your life with people you know nothing about, it's a whole month away and I'm already dreading it, I find it very hard to talk to people I don't know! Feel on edge already
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    • Posted

      Hi Natalie,

      I haven't been on here much lately, got all the problems with coming off Tramadol - I wish I was never on it! Gradually, getting it lowered, but the side-effects are horrible. Yesterday, I had to have BoTox injections, but not my normal Neurologist this time, it was The President of British Neurology, whom I have known for years, we always have a chat in general about Neurology, only because I have taken courses at University on it - then instead of giving me 6 injections, he gave me 3, but it was still the same amount of BoTox.

      I'm glad to see you won your case with PIP! Congratulations, worth it in the end! Not sure of that expression with many PIP Awards and what people go through. And, what I have seen on the web lately about the DWP is totally unjust!

      All the best Natalie,

      Regards,

      Les.

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    • Posted

      Hi, oh no I hope your okay - my mum used to be on tramodol when she had problems with her feet! What do you have the injections for?

      The judge couldn't believe it had come this far and couldn't understand why dwp hadn't awarded me in the first place, he said he'd already looked and made a decision on it but just wanted to ask me a few questions, 3 questions asked, decision made right in front of me, 5 minutes, in and out. Ive been so worried, just hope dwp don't appeal it! Standard rate but still chuffed at that.

      I hope you feel better soon x

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