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
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huds
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Hi there, sorry you have been subjected to such very unprofessional care, your story, unfortunately is now common place, Firstly it is good you are asking if anybody re Brighton, has in your position had the right care. There is bound to be somebody on here who will know! as that way you be reassured before going there, or if not transferring privately to London Bridge. Believe me I know how you feel, I am Sero negative and so are my children, although the Lupus test has showed up with bells on, and at the age of 48 my Lupus has shown up, which clearly I have had since teenage years, but like my other disease, remained stubbornly seronegative!
Some time ago I mentioned on here about writing a book of patient seronegative accounts of Hughes Syndrome, their treatment, incidents etc etc. Having spoken with others similarly afflicted, and this is now going to go ahead. I have also spoken to a couple of medical staff who agree it is a good idea. This is a book much needed and I/we hope to start on it soon, with the idea of people who express interest initially by private message filling in an initial questionnaire. Please do not give up on your care, Professor Ainser Rahman spoke in detail at the last patients day/St Thomas' quite clearly about those who were sere negative with same clinical symptoms, being treated the same way as those who had passed a test.,
Please remember that as well as complaining to PALS at St Thomas, it is your right to fill in a profile on NHS choices and give feedback to the clinics, polite and firm! If people did this, some very open and scrutinized feedback would appear for the Care Quality Commission to look at. as it clearly unsafe to be discharging patients back into the community when the community does not understand. I am not sure if anybody has done this yet, but it might be worth considering, it. People often use the system to give glowing reports.
Hello, I agree with the comments given above, and sorry to hear you have joined the ranks of been discharged. I too have been discharge from St Thomas's please write to the Chief Executive making it an official complaint. Hopefully a petition will be placed on this site, to be sent to the CEO, and write to your MP. The Lead Clinician at the Rheumatology Department has breach a duty of care, by leaving many patients without any care, and clearly ignoring the Governments recommendations to provide a CHOICE for patients to receive care where the patient requires to go. ie, CHOOSE & BOOK. And the NICE guidelines also have not been followed. It is disgusting what is happening, leaving paitients lives at risk. Please do not give in. You are not on your own. This one person that calls himself a medic, is playing a dangerous game, with many patients lives. Bernie x
Thank you all for your support and suggestions I have commented on the petition and seronegative posts Mary, I really hope I can help. It seems thanks to one of the lovely members here that there could be a new Dr at my local hospital who might help so I will be printing everything off I can find on seronegative and going to my GP just so I can hopefully get some care, however I will be writing the letters of complaint you all suggest, I really can't understand how someone I have never met can make a judgement about my health!
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