[Verbal]

Originally Posted by hijaxers

Do you not have something like WECIL in your area ? My daughter works for them locally and she has helped a lot of people i know with these sort of problems - WECIL is a registered charity in England and Wales - which is where you live i think, have a look on line for them - I think you probably qualify for help< they have recently been challenged with finding funding but comic relief etc.. support the charity a lot. Please let me know if there is anything i can ask my daughter for you - she's great for getting you in touch with the right people.

Thank you for that, that's very kind. I had never heard of them. Looking on http://www.wecil.co.uk/ though it seems to be focused on Bristol and the surrounding area, i'm in Wales. I am a member of ASBAH (Association for Spina Bifida and Hydrocephalus) which obviously, is what I was born with. They have like Area Managers who are supposed to keep check on the people in their areas.
When I first joined the guy was great, he came to see me when I joined and would call me at least once a fortnight to see if he could help with anything. He left, and apart from a few emails I have had no contact with his replacement.
I was in my 30s before I had even heard of ASBAH, and that was only as a result of a chance meeting with an old school friend, who has the same health issues. Unless you cause a fuss and chase and chase, and know who to chase, nobody seems to really give a toss.