Could you please help. My daughter has been diagnosed with Hughes Syndrome after a sagittal sinus thrombosis aged 19. The massive problem we are having is that my daughter's neurosurgeon has tried to get an NHS referral to Juluan Nash in Cardiff and because we live in Swansea he has tefused but would see her privately at a cost of £200 at the Bupa Spire hospital. The problem is would we need to continue paying privately. Also Wales NHS cannot refer patients on the NHS to see specialists in England. My daughter's neurosurgeon is adamant we should not pay. We are going around in circles. We finally seen a heamatologist this week at Sungleton hospital who said we really need to see a rheumatologist but Cardiff specialists won't see Swansea patients - please help. Cardiff and Swansea is about 50 miles away. I just need my daughter to be seen by someone who understands, she is having horrendous headaches.