Sticky Blood-Hughes Syndrome Support
8,148 members8,377 posts

Advice needed please re surgery

I fell and broke my shoulder a year ago and in April was referred for surgery. Finally been seen this week. In the meantime I had the tIA etc, triple +be with high levels of antibodies, am under kings/guys/St Thomas's and on inr3-4 though not well controlled and suffer very bad migrainous effects when it drops.

Just as I went for my ore-op, my local hospital has gone into special measures. I am not very confident about them understanding APS. I was admitted in June with an immune reaction, they assessed me and high risk for VTE and Px clexane but forgot to give it to me.

They are going to speak to guys about a bridging plan, but I am wondering if j should ask to be referred to guys instead. Likely to mean a 5-6 month delay having the surgery (which I need desperately, I suffer a lot of pain and cannot use my left arm)

What would you do?

3 Replies

If you have a GP you trust and get on with as I do, I would start by talking to him/her about your concerns and oprions.


I was about to say the same as Tim.


Talking to your GP is a good starting point, are you under Guy's as well as your local hospital, as if so you could get Guy's to guide your local hospital, also are any of our recommended specialists working out of your local hospital, or any in your area? However whatever you do, you must put it all in writing, if you are under Guy's as well as the local hospital, I would certainly as well as seeing the GP, then write to them, (secretary of GP's email addressed), marked for GP attention, also the specialist by email copied into same letter at local hospital, express your concerns at the special measures, and also the forgotten medication. Be clear and to the point, and express how dangerous it would be for you not to be heard regarding this, or indeed a plan put in place and followed

through with detail.

Anybody involved in our case needs to be part of the same email, that way all will talk to each other. MaryF


You may also like...