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.

10 Replies

  • 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

  • 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

  • Ive never heard of anything so ridiculous in all my life! If I were you Id write an immediate letter to my MP or better still go and see them at their next surgery. It is after all a run up to a GE and they are after all possible votes.

    They have a duty of care to your daughter to refer her to whoever is the most appropriate specialist and that may also be to London if necessary! (Look at the recent case with the child whose parents took him abroad to get the best care and in the end they offered to pay after all the publicity)

    You will need to get verbal and stamp your feet and thump your fists very politely but firmly Im afraid because of all the cut backs and new CCG rules. In the meantime write to the secretary of the Dr who you want to see and tell him/ her that you need to be seen urgently etc and that you will hold them responsible for your daughters condition if anything happens to her until she is seen.

    Its good to see a Neurologist in our corner for a change.

    I wish you the very best of luck.

  • 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

  • Good stuff. MaryF

  • 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.

  • I also struggled in Wales in the end I decided to travel to see Prof Hughes at London Bridge. My Gp has be happy to follow all his advice. I was just going around in circles so put the money on my credit card and took the train. Great western go from Swansea and you can get some good deals, much cheaper and easier than by car. If bloods show high readings etc maybe it will make consultants sit up and take a bit more notice, maybe then you will get the help you need on NHS. Sorry cannot offer anything easier or cheaper but I do understand your frustations. Good Luck. x

  • 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.

  • Thanks for that Kate will keep both names in my file for future reference. I live about thirty miles from Cardiff but have been told cannot be referred there for anything as it is out of my area. Still handy to have the names.

  • 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

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