..I know you've probably already heard of the Shine charity for Spina Bifida and Hydrocephalus..but they have a team in Wales...maybe if you contacted them, they could put you in touch with someone in your local area that you could talk to because it doesn't seem right that you don't get any help..or even that you have to look for it and don't have it offered to you...here's the link anyway..
http://www.shinecharity.org.uk/