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Sticky Blood-Hughes Syndrome Support
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GPs may no longer be able to prescribe Clexane

Tonight I received a worrying call from a GP who was annoyed I had never been to see her for blood tests and a consultation about my condition, primary APS. I noted I was under the care of a Rheumatologist and Neurologist, both at St Thomas's, whom I see on a six monthly basis. Additionally, I have yearly blood tests at St Thomas's. Despite this I was told I must still attend the surgery to discuss my condition with her. I note no doctor at the surgery has ever asked about my condition when I have attended for other issues. Furthermore, that this doctor is relatively new to the surgery and I was never told that she is now in charge of my file. Most worryingly I was told that very soon GPs will no longer be allowed to prescribe Clexane, which I inject on a daily basis. Apparently, our consultant will have to do this. But with my most recent appointment at St Thomas's being bumped by 7months, the week before my appointment, and so many patients being discharged from St Thomas's, is getting a script from our consultant a realistic option? My day-to-day life changed markedly after I was prescribed Clexane and I am genuinely concerned this marks a push from St Thomas's to GP care and a loss of Clexane.

8 Replies

This is not correct! I am in exactly the same situation as you and there is nothing new here other than the fact that there is a new GP who is reviewing your file and probably the influence of a now new CCG who are starting to flex their muscles.

The facts are this. You go to St T, they write a nice letter to your GP asking for you to be prescribed Clexane, the GP has the responsibility over what you actually take because it is their name that goes on the script so they CAN refuse the Consultants request. The reality of this would make life very difficult as you suggest and it may be that this new GP is just wanting to understand your care needs as it will be a cost consideration to prescribe wafarin rather than give injections. You will need to make an appointment and go and see this new GP to explain why St T are treating you as such. They can't simply just stop them.

If you have issues then ask to speak to either the GP you saw before or the practise Manager. I've been all through this with mine and they have agreed it's not in my medical interest to stop the injections and will prescribe them.

You may have to call St T and say you need an urgent appointment because your GP is threatening to stop your treatment unless you have one. That should sort that out!

Please let us know how you get on.

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Heavens we used to have issues with losing posts on this site! I suddenly found my answer had repeated 14 times.... Sorry about that if you got all those notifications :-D


Good advice, it does seem to come up regularly this issue with GP's! MaryF


Its all to do with funding. GP's are shifting the costs to consultants. Ring your consultants secretary, and get them to forward a prescription to you. Its all politics and money saving. The patient comes last. Your life and wellbeing is most important. Hope you get some answers.


As a practice manager - clexane is NOT that costly, and as all have previously said the GP cannot just stop prescribing. (I found the hardest thing with clexane was finding a chemist who stocks it at the correct dosage!) Many drugs for various diseases are now under 'shared care' protocols - where the consultant prescribes initially and the GP does all the follow up blood testing, including some arthritis drugs, but although I have a long list of 'costly' drugs which are 'blacklisted or amber listed' at our CCG - many are still prescribed with good clinical reasons - and clexane is not on the list and is a life saver so unless you were stable on warfarin, or another oral anticoag drug - you should be fine. As APSnotFab says - make an appointment with the new GP - she's probably trying to do her best for you, but shouldn't suggest she'll stop prescribing!! And you may have to call St T's to explain after you've spoken to her - she won't be an APS specialist - and St T's are!!! Best of luck.


Thank you for your responses. I am determined that my medication will not change unless I agree it is my best interest, but was curious to hear if others have been told about possible changes in prescribing policy.


I don't know why it's so expensive in the US as I know someone who works for a big drug company and the NHS buys it at a fraction of the cost. It's not overly cheap but no where near 3000 euros.


Clexane is not that expensive. I buy it privately in Botswana, South Africa & the UK when I am there & pay around £300-350 for a month's supply. That's at 2 injections per day, 40mg strength. It will cost the NHS considerably less due to their bulk buying power.


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