AVM Survivors Network

Doctors vs DWP


Having been diagnosed with an AVM and Aneurysm, the doctors have signed me off from work. I live in a remote village in Berkshire and I’m not allowed to drive. I have almost constant headaches, at times severe. I have the dizzy spells, feelings of nausea etc. I’m sure people can relate to this. I also have sleep problems, being woken in pain and being drained of energy, suffered badly from tiredness. I also have silent seizures. I am currently awaiting Gamma Knife at Sheffield, but despite all this and doctors signing me off work. The DWP are saying I am not unfit for work. This is causing a hell of a lot more stress than I can deal with at the moment. My rehab team have also written letters, I also have several discharge notices and all the recent referral letters, what else can I do, I am at a loss on where I go now…??
Sorry for the rant.


I’d talk to Citizen’s Advice.

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And I’d talk to them about your whole situation re employment so they can also check with you that you’re applying for the right benefit or support.

If you need any help looking stuff up, tell us more about what the issues are and I for one will try to help find the relevant stuff. If you need to share more private things, consider using a Message instead.

Hope this all helps and good luck!



Thanks Richard, the main issue is where doctors say, I could of had it all my life. So DWP are saying, if I managed it all my life. Despite the recent events, they are saying a lot of it is in my mind and if I hadn’t have been told it was there it wouldn’t be a problem…


More difficult, I guess. I don’t really know but I think CAB are supposed to be on your side and help you find the right things to claim for and claim for them.

While I agree that you may well have had your AVM forever, these things do change, and I would warrant that you haven’t had your symptoms for ever, so that’s why the docs have signed you off.

If you were previously claiming a job seeker type allowance, it may be CAB need to help you apply for a disability allowance instead. I know nothing about these things but if I were in your position, I’d consider checking with them as to what you could reasonably claim to keep your head above water financially.

Good luck. If there is any way we can help, do tell us what’s going on.



Hey Mickeboy,
Now admittedly I’m in Australia and the rules/laws here are a bit different but in all honesty I’d be questioning how a govt dept can question medical specialists professional opinion, when they have signed you off as being incapable of working. Your medical team would have what is known as a ‘duty of care’ towards you that a govt dept do not have. Here a duty of care is a binding legal obligation, where a govt dept assessment is an opinion. If you have an incident at work the dr’s can be held liable. I doubt you’d have such recourse on a govt dept. But I’d be seriously questioning the professionalism of the govt dept.

You may well have had it all of your life BUT if you were symptomatic and had required surgery previously, it would have occurred. Your symptoms have obviously increased for surgery to now be considered necessary. So sure you may have been able to manage previously, but according to the medical professionals this is no longer the case. DWP are now demanding you disregard medical advice??? That could place everybody at risk, your work colleagues, your bosses, your dr’s…. Everybody but DWP. That is not right.

I’m not sure how CAB work nor their power in having the decision over ruled or at the very least reviewed but I say it again How can a govt dept over rule a Dr’s professional opinion?? That decision needs to be reviewed ASAP, I’d be suggesting by an independent lawyer in employment law. No insurer would cover you nor your employer if you went against medical advice.
Well, that’s my opinion.

Merl from the Moderator Support Team


Thanks a lot for the replies. At the so called assessment, I informed them that because of my symptoms, I may have trouble answering all of the questions. But this did not stop them firering questions at me, about how i manage, how i get dressed, where i go, what do i do etc, all at hi speed. I even stopped them on several occasions to tell them I was confused and struggling, I became very anxious and wasn’t even sure what I was saying.
I have since been in touch with headway, who have now put me in touch with a solicitor. I have been awarded PIP with the higher rate for mobility, but not ESA. I’m just so frustrated by it all. As you all well know, living with the symptoms is bad enough, none of this is helping me or my family. Which has really pulled me down to where I am now getting really depressed. I have such a great family and can’t bear to keep putting them through all of this.


Mick Headway is not something I knew about but sounds like a good idea. That they’re getting you set up with a solicitor sounds like a good step. Good luck, and let us know how you get on!



Hi Mick, I feel your frustration with the benefits system and unfortunately it doesn’t always help the people who really need it, like you. I really feel that going to CAB and headway is your best way forward for the best advice to fight this. You say you can’t get ESA ? have you appealed that decision? You have the right to and should pursue it if you haven’t already done so. You also have the right to see all the documentation that was created by the Drs (assessors) who decided that you didn’t qualify for ESA and need to request it under a RAR ( right of access request) , look on gov.uk , it can all be done digitally.

Good luck x


Thanks for the advice, it was the tribunal who said no, despite me waiting for Gamma Knife. Although the whole thing confused me, as I didn’t really know what was going on and it was more like an interigation, which I had no time to answer the questions…