Sticky Blood-Hughes Syndrome Support
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Thought of the Day and on the wish list too!

It is such a shame that time and time again we have to educate our doctors about our condition, rather than them thinking hmmm I have a patient with a condition I know little about I will research it in case they need my help and support - doh how easy would that make our life.

That's it folks - wish list updated

Smiles to all and hoping you're all welling and enjoying the summer



6 Replies

Yes I agree, and I hope it comes soon: Probably on our collective wish lists! Mary F x


A nice wish Lesley :D


If only Lesley! I find that its just a constant fight and instead of proactive Doctoring its more out of sight, out of mind, just go away and dont bother me, dont ask for anything because Im going to say no anyway, because I cant afford it attitude.

My GP has now said they wont prescribe my Heparin or plaquenil anymore because I am under the care of St Thomas and it is felt they should prescribe it because thats where the knowledge is. I was at St Thomas on Friday and told them this and was told they cant prescribe it as its the GP's responsibility as they look after me. So while they argue over me and I stress Im not going to get my medication, where is the patient care?

The GP prescribing rules say they can refuse to prescribe any medication they are not happy about and of course now that commissioning has come in and they are responsible for their own budgets, suddenly they will be looking closely at what Consultants are asking them to do. Where once they might have been willing to be "helpful", now they are less likely to be so if it means accepting the costs and Consultants who blindly write letters in Hospitals and are not subject to budget restraints, are suddenly going to get wise to the fact that their patients are not going to get the treatments they want them to have unless they are prepared to prescribe them themselves.

Whats In the patients best interest is going to become more and more critical over the coming months and as usual we are going to have to fight for everything ourselves because no one is going to do it for us.


I feel for you ApsnotFab - Mind you one comment you made, your GP will no longer prescribe your Heparin..... Mine never has, they say they are not allowed, so I have always had to go to my local coag hospital clinic, yet it is my GP that manages my INR and coag?!?! weird eh? I even had an argument getting a sharps bin ....

However, I have just put my first request into my GP for my Plaqeunil, as up to date I have got that from Guys - interestingly where I go for the APS clinic, and Tommies for my hematologist, weird to have different clinics....

Also as you say we have enough to fight for keeping well, without having to deal with aid to our GP clinics too.


I needed to share this - I went to our local walk in about an odd rash and the doctor asked if there were any underlying conditions - when I said APS - he was actually interested- asked how long it took to get diagnosed and how it affected me day to day- it was a refreshing change to have a doctor aware of the condition and be reassuring that my rash was unrelated.


:o :o :o :-D


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