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AVM Survivors Network

AVM nothing to worry about...?Get a job

#1

Well despitehaving a tonic clonic seizure and being diagnosed with an AVM and Aneurysm. Suffering with severe symptoms and awaiting gamma knife. the DWP have decided there is absolutely nothing stopping me from getting a job and going to work. despite my symptoms and the fact that I live in the middle of nowhere need caring for and can’t drive… :frowning:

#2

Hey Mickeboy,
Having been on a similar roundabout myself, I’d recommend getting yourself a lawyer. One who specialises in DWP matters and knows the systems. Often the problem can be with conflicting medical advice. One medico may say you can’t work where another may say you can. I believe one of the issues here is that with neuro, no two situations are exactly the same. So although patient ‘x’ may have the same condition as patient ‘y’, the impact on each can be vastly different. Government depts like their forms and due to this there is no flexibility in their judgements, if box ‘a’ is ticked, you’ll get a payment but if box ‘b’ is ticked your automatically excluded. Often individual circumstances are excluded from any considerations. If you have medical reports that support your position, then only present those reports and not the non supportive ones. If they want dr’s details only provide the supporting dr’s details. The DWP are not your treating dr’s, so in all honesty, they have no idea of the impact on you as an individual.

It may be worth speaking to a social worker within that specific department, sometimes they will take more kindly to an application that has the support of their own social workers.

Hope it helps
Merl from the Moderator Support Team

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#3

Dear gents, I had serious diagnosis such as AVM, hydrocephalus treated by neurosurgery when codman shunt was implemented to drain liquor.
It was 2014, then 2015 was malformation treated by gamma knife and now several years after I did USG angiography of my brain vein system while ago and malformation totally gone! It was confirmed top Czech neurosurgeon. I am entirely healed and I am doing sophisticated expert job.Good with me and angel is always surrounding me.I am happy man gents!

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#4

Hello Mickeboy,

I have to say I agree with Merl, I am freelance and I had an understanding person that I was assisting. I realise I was in a lucky position. But in saying this to you the DWP fundamentally don’t understand the condition because it is so little known, can your consultant not GP sign you off? The anxiety of being in this holding pattern is really difficult to articulate, I don’t believe GPs have enough understanding of AVM and only understand the symptoms to an extent, headache and migraine but even then my experience has been that it is limited. It might be worth contacting your gamma knife Consultant’s secretary and ask for some assistance.

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#5

Hello Mickeboy,

How are you going? I should have asked a couple of important questions, did you drive before you had seizures? Have you had to hand back your license? Also did you get the following arranged:

-Freedom pass

  • prescription charge exemption card

Its not automatically offered, I had to do a bit of hunting, I’m guessing you are on AED’s, so officially have you been diagnosed with epilepsy? Its worth looking at what the epilepsy uk society can help you with in terms of advice and rights. I’m sorry, I meant to make this suggestion earlier, I’m sure you have already been to these places.
But if you haven’t I hope this helps,
Kind regards,
Laura

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