Have any of the UK parents contacted or used the Brainwave charity. Heres the info I found on another site.
The Brainwave trust (http://www.brainwave.org.uk/index.html) is a positive charity that helps children who have developmental delay whether from something they were born with (including chromosomal disorders) or brain
injury. They do a 2 day residental assessment of a child and then suggest a program of home based therapy (around an hour a day) to stimulate
development and they re-assess at 4-6 months. There seems to be roughly a 6 month waiting list for initial assesments, but I think they see children up to 12 years old. It's near Bristol and they have some low cost accomodation as well. You have to make a contribution to the costs, but I think it will be worth while as where else would 2 days be spent assessing a child and a personalised programe worked out for them. Also useful to keep the NHS on it's toe, as we have found out. Think there is one in New Zealand as well.

I've contacted them for info,I will let you know more when I find out.