I have just had another experience where, for various reasons, hospital medical staff did not fully appreciate how APS can complicate the otherwise most apparently routine procedures.
I do not blame the staff, in fact one of them when approached later took enourmous trouble to rectify a situation that could, as has happened in the past, has had the potential for severe consequences in coagulation terms.
Try as we might to educate, I suspect the the fact remains that 99% of medical staff have never heard of Hughes or APS, though mention of 'sticky blood' seems to get some thinking. We cannot blame them, our condition is one perhaps one of thousands in the same boat- though all may not have the same potential for harm. On top of that they have all the pressures that governments have put on them. So what should we do?
What I think is lacking, is a warning on our files, similar to the red 'allergies' stickers already used. Such a warning should clearly convey to any and every reader, that the patient has issues that can affect practically every aspect of their care. They should alert staff to the likelyhood that the patient's issues have the potential for considerable complexity and which may not be addressed in the usual times alloted for a consultation.
We are not, for various reasons such as brain fog and memory problems, always able to explain our particular needs precisely in an ordered and timely fashion. This must be taken into account no matter how rational we may appear on the surface.
On this occasion I declined to sign a consent form and nurse happily invited me to take it and all the paperwork away, think about the issues and to ring with any further questions. She did take comprehensive notes but later I realised I had left so much out and I became exceedingly anxious about the issues. I did ring the ward and the help and understanding I received from the nurse concerned could not have been bettered in any hospital anywhere. She typified the very best of the NHS and I cannot tell you how much less stressed I was afterwards.
The net result is that I now feel in control. The doctor due to perform procedures on me has had my file brought to his attention and he wants to see me in clinic and not, as might otherwise have been the case, a few minutes before a 'routine' procedure. The date for the procedures has been cancelled and, if I still need both procedures, will not be listed for a weekend (it was down for a Sunday) It will be a weekday when all support services will be readily available. My excellent GP, as ever, is most supportive.
If a formal warning label might be difficult to achieve, might we/HSF , in the meantime, come up with a sticker that they might permit on the cover of our paper files?