I guess not surprisingly I have received a letter cancelling my appt in October as I'm 'stable' and can 'safely' be discharged back to my GP. I'm really upset and worried by this as I have no confidence in my GP as when I went about something else I found they had removed my condition from their system as they thought it had gone away!!! I also had such a huge battle with my local hospital to get referred to London in the first place after losing 4 babies, my first was stillborn and then after what Dr K referred to as my miracle boy (a very difficult pregnancy with lots of complications - he is now 8 has Autism but is gorgeous) I had 3 miscarriages.
Finally I got a referral to Dr K and was diagnosed with seronegative Hughes which was a huge relief but even now people down here don't know what it is /believe it exists (I know some of the St T's staff also feel the same as my identical twin saw one of them).
With treatment and under joint care of St T's and my local hospital I successfully had 2 more children, I was then transferred to another consultant at St's and due to joint pain I was started on Plaquenil last October, I'm already on aspirin for life.
So the long and short of it is now I have no one I can rely on to ensure that I am safely monitored, there is a consultant at Brighton on the APS list but does anyone use him and know if he recognises seronegative? I need to be armed with as much information as possible as I do not have the time or energy to battle the system for me anymore as I have to do enough of that for my son - someone really does need to realise how all their wonderful cutbacks affect families.
Any help gratefully received x