Headway UK
 

Just a quick message to anyone struggling with PCS in the UK.

Have recently got in touch with my local Headway group, a brain injury charity. I had been aware of them before this, but felt that since they deal with 'proper' brain injury I would not be severe enough for them to want to see me.

Well after 5 months of my life falling apart I figured maybe I was badly enough off for them to see me after all. They were able to see me within a few days, gave me the time to chat through all my issues (unlike anyone I've been able to see anywhere else) and also have the ability to refer you to specialists.

I should have seen them months ago, I would have been so much better informed and been referred to the necessary brain injury specialists so much quicker than the massive waiting lists that have been involved in going through my GP and then to a massively overstretched generic neurologist.

And they do take PCS very seriously - it was actually suggested to me that my desire not to 'waste their time' was actually down to a loss of confidence and self esteem brought on by my injury. I think they may have a point.

Anyway, Headway are cool, look them up.

I contacted them, and someone is coming to see me next week!:)

Glad to hear it, if they're anything like my local one I think it will be really good for you. One of the best things I found about them was that I could describe some of my odder symptoms to them and they would understand, say that they had heard of them many times and offer advice. This was in contrast to everyone else who just looked at me like they didn't quite know what to make of it or whether to believe me or not, or didn't have the time to discuss them at all.

I seem to remember you have some weird symptoms so this should be a good thing for you too. Good luck!