Specialist

[KatrinaJones]

Hi

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.

[emmaj]

Could you maybe write to your local primary care trust and see where you can go from here. If it works the same as in england they are the panel a gp or doctor has to justify to to get you reffered on anywhere. Failing that your local MP?X

[MaryF Administrator]

Hi, I am so sorry you are having such an awful time, and welcome by the way. Firstly have you had a look at our list of specialists, including NHS in Wales? hughes-syndrome.org/self-he... Maybe get a re referral to one of them, if the specialist is adamant you need to be referred please show them this list of specialists and the charity itself. If not you will need to get you MP on side, of course it is vital that your daughter is seen. You may have to fight a bit, I do understand, having had to fight for myself and my children, believe it or not you are over half the battle with this. MaryF

[InSpain]

Katrina make your complaint directly to the Welsh Office. If you take a firm stand and make a real fuss you will get your daughter's referral. I did for my Mum. She lives in Pembrokeshire and is now treated at the university hospital in Cardiff. xxx

[MaryF Administrator in reply to InSpain]

Good stuff. MaryF

[nettie545]

Wish I could help but I know nothing about how these things work with referrals. Could you tell me what symptoms your daughter has with Hughes? My son has just been diagnosed, but not sure they are right. Hope you get answers soon.

[Hidden]

Sorry to hear you're experiencing this problem, sadly brought about by politicians and big business. Referrals out of your area are going to become scarcer as everyone fights over budgets

However, as you're in Swansea, could you ask for a referral to the Royal Gwent at Newport? The haematology department there is excellent - headed up by Dr Chris Jenkins and Dr Sarah Lewis. They are very good with patients are are also publishing some interesting research on APS, so certainly have the expertise.

Good luck and I hope you can find a specialist soon.

[KatrinaJones]

Truly Thank You all so much for your help and support. So good to know this info, it has really helped us and given us strength. Love & Kisses XxX