NHS referral to GOSH Hypermobility clinic

[appropriatelytrained]

We have been seeing the FT Ormond St physio privately about Hypermobility but DS is really struggling with fatigue at the moment and she has recommended getting him referred through the NHS for their services which are more extensive.

Has anyone else done this? I need a referral from a paediatrician. No one deals with HMS here so he isn't under a paediatrician but our community paed is going to approach the children's unit to ask a consultant. She thinks out of area referrals are a nightmare funding wise

However, he can't get these services locally so don't we have a right if he needs them, to go to a tertiary centre?

i got my son referred to GOSH 3 years ago when I wasnt happy that our local hospital didnt have enough experience with his rare condition, is this what you mean? sorry i dont know what HMS is and know nothing about hypermobility. My GP requested the referall, it went to panel and was agreed as a 2nd opinion

Our hospital has told us they DO NOT treat hypermobility at all. Any advice??

I have hyper mobility and if you go onto the site you can find out where the three HMSA specialists are in the country. They have some great fact sheets too for kids and teens. Understanding my condition has really helped me. I am in less pain and I am happier. Can't say I am less tired but I sleep according to my needs which has really improved things. Seeing Professor Graham was the best thing I ever did and he is in London (NHS)

The HMSA site is really useful. Try it www.hypermobility.org/

hi

Ye sit is hard but can be done .you need referal from your local hospital consultant to the clinic .

We saw proffesor pope as was pretty sure ds3 had EDS but heworks closely with proffesor Graham

Sorry x posted with this and the other thread [hblush] thanks THC