AVM Survivors Network

10 years after AVM bleed


Hi everyone , am after some advice or tips etc
We live in Scotland and my son had 2 craniotomy procedures when he was 15 and then 17
Since both procedures we didn’t get any brain rehabilitation for him just sent home , no follow ups etc
Since then his behaviour has got worse gradually over the years , mid swings , tempers , personality changes

He was sectioned for 6 months and given meds and seemed to be getting better so when transferred nearer home the hospital he was transferred to disagreed with the diagnosis and took him off all meds hence we went back to square one .!
He has had multiple support workers and one MHO who don’t work with him as they find him difficult

He is difficult but I think they need to find a different way to engage with him on his level
His IQ has been lowered because of the surgeries
His recent stay in hospital he was again diagnosed with personality disorder , organic seizures and a mood disorder

He was discharged on a 6 month Community Treatment Order and no Community Psychiatric Nurse was allocated to him - the CTO now runs out on the 8 th of Feb this year and they want it to just lapse

He lives with myself ( mum ) and his little sister and sometimes at his own flat

He had told his team that he struggles on a daily basis / taken himself if his meds / wants to hurt himself etc and they have done nothing at all to help

Am unsure of what to do really any help would be appreciated

Many thanks
Julie x



Hi. I’m sorry to hear you’re all having such a difficult time. I’ve done a bit of web searching and NHS services in Scotland are different from England and Wales, so I’m not familiar with them.

There is a useful page on finding help on Citizens Advice Scotland where I can see references to NHS 24 and the NHS Inform service on 0800 22 44 88; it also seems a good idea to talk to the GP.

I’m not familiar with mental health care. I do hope this might help. Given how familiar you are with all this, I may be telling you real basics you’ve already used up.

Very best wishes



Thank you Richard , yeh I’ve been through all the channels for my son
He was admitted to hospital last night with yet another seizure
Staff at a&e moaning that the seizures are not medicated etc
I explained the situation and they quickly dismissed us saying they would write to his gp again

Quickly wanting to pass the blame to us for not taking medication but when realised that I’ve been asking for tests to be done and gp not referring us
We got pushed out the door

So frustrating

Julie x


I don’t know enough about this area but I would make an appointment with the GP and work through with them what is to be done. They are, after all, the gateway to all services in the NHS.

It sounds like a really difficult situation.