Sticky Blood-Hughes Syndrome Support
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Do our medical files need to carry a formal warning?

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?

6 Replies

Hi Tim

This sounds like a good idea.



That does sound like a good idea, and it is very true about being brain addled whilst appearing in control and fairly 'with it'!


Great idea. How do you go about actioning it though?


I guess, if enough people think it worth pursuing, we initially establish the present position and whether such an option could be put into effect. Assuming no bars to such an idea, then we stat talking to those who might back the idea, and then the authorities that might put it in to action. Suggest we see how it goes for a while. Suggestions welcomed of course.

Dave, maybe we have it as an agenda item it if we get some medics at the next Bath meeting?


For Yanks: Our insurance provider sub-contracts with an online nursing company. I have a specific nurse in this facility who is available by phone to offer advice and directions. I have agreed with her that should I ever be in an accident, and unable to communicate , she will be consulted when the provider calls the insurance company to check on my coverage level. She will then insert herself and make sure that the providers realize the unexpected issues with treating an APS patient.


We have one very big hospital in Stockholm "Karolinska Sjukhuset" (divided in two big hospitals; one in the North and one in the South of Stockholm. I have most of my Specialists in the North which is coming to be a real big hospital in 2017. A science-center also.

I have got two cards in Swedish and English from my Hematologist, that states that I have APS and a great risk of thromboses.

The Karolinska hospital has got all my journals and knows that I have got APS. I usually stay around this distric and then I feel safe. I flew to Costa Rica in 2000 and one week after I came home I fell to the ground. No more long flights for me.



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