Hi, my name is Alastair - looking for insight into CP care in the UK

Alastair2

Hi everyone.  My wife, daughter and I currently live in Germany, but we consider returning to the UK for work reasons.  My daughter (now aged 10) was born 10 weeks early, and shortly thereafter suffered PVL, as well as West Syndrome.  

As a result of these problems she has tetraplegic CP, is almost completely non-verbal, and has quite a few problems with chewing and swallowing - but somehow she still manages to be a cheeky wee beautiful monster :-).  More recently she needed surgery to correct spastic hip dysplasia (left and right), and also had surgery to try to improve the shortening of her calf muscles.

She requires a wheelchair to get around, and has regular (weekly) sessions with an ergotherapist and speech therapist.  She attends a specialized school for children with a variety of developmental, physical and mental problems, where her needs are supported by an individual personal helper.  She also has foot-heel orthotics to control/correct her ankle movements.

I am therefore wondering what her situation would be like in the UK?  Would her needs be supported in such a comprehensive fashion?  Does it really strongly depend on where you live, and what the local health system can offer (or afford)?  Are there any do's and don'ts?

Very likely we would need to move to the South East - most likely somewhere in the Oxford-Cambridge-London triangle.

Thanks for taking the time to read this far - all help much appreciated!

Richard_Scope

Hi @Alastair2
Thanks for your post and a warm welcome to the community.

The South East is certainly better served with services for children living with PVL/cerebral palsy. Great Ormond Street Hospital , Evelina Hospital

Your daughter should be comprehensively supported but there may be some waiting times for some services like orthotics, for example.