Till about 2 years ago my daughter (who developed ataxia when she was 14) was being cared for by Great Ormond Street Hospital in London. Now that she is 19 she needs to be seen by an adult Ataxia centre.
For us this is a difficult problem as we are not from England. Can you please suggest adult ataxia centres that are in the NHS system?
Thanks
NF Malta
right next door to GOSH is UCLH Queens Square
So, i if you look on Ataxia UK Essex website and you look for ataxia centres of excellence, there is one at the National Hospital for neurology and neuro surgery, next door to gosh, it is led by Professor Giunti and her team. I would recommend you start there.
Who was she under in GOSH? They should have arranged a transition period starting from 16 for two years.
My son is 17, he is under dr Robinson at GOSH, not particularly helpful or knowledgeable consultant...
This decision must be so unsettling for you & your daughter. Important as you need to find the right clinic without too much looking around & difficulties with flights etc. Firstly, join Ataxia uk &ring the ...Helpline no...The people you speak to will give you unbias info.Also UK HAS 2 centres of excellence... LONDON & SHEFIELD....There is a well known clinic in Oxford but as yet is not a center of excellence. Again, ask for up to date info on helpline.
Good luck in your search! Trish
Should we ask for a referral to the ataxia centre
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