I received a letter yesterday from my GP to say that I would be given no more Warfarin. I checked online and yes, I can reorder my other meds but not Warfarin. I should be reordering today for collection on Friday.
Apparently, I am ‘too complex’ and Addenbrookes will monitor my APS and anticoagulation. Yes, Addenbrookes will and do monitor the condition but no, they won’t support me with regards INR monitoring/dosing. They have been clear about this from the beginning - that is the job of the GP. Addenbrookes have told my surgery this but my surgery maintains their position.
So, I have not had any support since 10th Feb and now no Warfain.
Has anyone else been in this situation? (Yes, I shall be referring this to the CQC). I’m not quite sure what my next move is other than the letter that I dropped off at the surgery yesterday with a range of questions.
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Obviously I hope you get this sorted, if necessary, in short term you may be able to get a private prescription or a helpful pharmacist who will issue emergency supply based on your NHS record, or the hospital may issue a prescription. I always tend to keep a couple of months of all meds in stock, because I have trust and paranoia issues... and learn from experience
But, just as a point of information and because it can be important to have ducks in a row when doing official complaints:
"that is the job of the GP." is a localized thing, postcode lottery, not true across the NHS, and it appears, is in dispute.
My warfarin is managed through a central hospital-based anti-coagualation service who handle everyone in this area (I think). GP has almost zero to do with managing it: just updating my GP health record with dosing and issuing repeat prescription. I too used to think this was the norm everywhere, but apparently it isn't, who's job it actually is is in fact variable.
I was told (and again this may just be in this area) that it was actually down to the local CCG contract with the hospital trust. You may actually be in the middle of a contract dispute between CCG and hospital (possibly over the meaning of "complex"). End of the day it will most likely be over who pays for your care (same reason I have to pay for my machine and test strips). Seems insane to put you at risk over this, but, your GP (unless they are the whole CCG) may just actually be another pawn rather than the guilty party.
I can not begin to tell you what your response meant to me. I've never posted anything on here before and I'm so glad I did. It made me realise what I hadn't really realised up to that point. That my GP just doesn't care about me. That's what it boils down to. And you cared enough to write all this to help me.
What you wrote was helpful and informative and I thank you for caring enough to bother to write all this. I have been making phone calls all day. I'm still no nearer finding a way to get Warfarin - although apparently 101 might help me when I literally have no more left, not before. I'll update on here when there is a resolution as some people might be interested to know what happened in the end.
hi yes we moved and the surgery we were with kicked us out and we were left with no surgery. You can call 111 for emergency prescriptions which I did for 6 weeks and you won’t like this but I had to go to minor injuries to get my blood tests. I had to use the local health authority helpline to force another GP to take me on and they went potty with the last practice for cutting me loose without another surgery in place. Your local health authority will support you but it’s a complex call to make I’m sorry I can recall which department I spoke to. Good luck and I hope this all gets sorted
This is very interesting. What is wrong with these GPs? Even if I had been the worst, rudest person out there, I don't know how they could stop life preserving medication. This all started on Feb 10th when I had been in to the surgery every day and queried the INR readings on their machine. On the Thursday, their machine registered 3.5 and mine sitting next to it registered 5.0. I requested a venous draw. On Friday morning, their machine said 3.5, mine said 5.2, the venous came back 5.3. I was sent to A&E as the doctor thought that the lab must have done the venous draw wrong as their machine is correct and my INR was 3.5. I spent Fri eve in A&E and the venous draw showed 5.2. At that point, the GP said that there was nothing wrong with their machine and mine is broken. A letter explained that I'm far too complex and that they wouldn't do any of my anticoagulation any more and I was not allowed Warfarin from them.
You couldn't make it up.
I'm glad you got sorted. It's a horrible situation to be in.
I used to self test but prof Hunt at Guys stopped that as it was not accurate. I got messed about so much I got agreement that I get blood tests from Doctors and been doing this long enough I do my own dosage now and just get whatever I need! It was a tough struggle and every time I move it all changes. I rally hope you get sorted 5.2 is only slightly high on my range I only worry at 7 and above but my old anticoagulant clinic used to go mad!!
I guess it's not so much the numbers as the difference between their number and that of my machine which corresponded with the venous draw. How can you dose based on that?! They thought that I was bang on target and needed to maintain, I knew/felt that my number was high and that meds needed to be reduced. Had I taken the dose that they told me to take I would have been higher than 5.3 the following day! It's all madness!
And the discrepancy between the numbers means that I'm too complex for them to care for. Double madness!
The further information you've added here makes it crystal clear that this needs reporting and investigating, urgently - not just for your sake but also for other patients at the practice who are very possibly being overdosed right now.
My guess is that their machine (you've used the singular, they only have one?) is either faulty or out of calibration (could be they have incorrectly calibrated it), or they have a bad batch of test strips (ummm... has happened before... ).
When things have gone weird in my warfarin management, my ACS staff have been very helpful in investigating (including using different machines and test strips combinations, my strips in their machines, theirs in mine, expediting blood results etc.) - a collaborative and cooperative approach, and they've thanked me for my help on occasions (not sure why - I'm mostly driven by self-interest!). The more I hear about other places (and I lived in Cambridge for several years) the less I want to move house... ever!
Since there is a hospital involved as well, it may be worth speaking to PALS there - not so much because you are complaining about the hospital but because they might know how best to kick off an urgent investigation (they deal with stuff that needs dealing with now in hospitals) and also the hopsital might need to be involved in investigating it.
Have you had covid? My coagucheck machine has been giving false readings for months. It is checked every 6 months at my hospital clinic and been fine for 12 yrs but post covid it was correlating with the hospital machine but not the blood draw. So I now have to go each week for a blood test then told my dosage. Really fed up-tried my machine last week but reading was 1.2 out with blood test result. Fortunately hospital is quite near and have a booking system and being retired doesn’t cause problems with work.
I really don’t understand where your GP is coming from. Originally I was at clinic surgery but sent to hospital instead as too complex. But I still get prescriptions from my GP. Can you move to another surgery? Hope you can get sorted soon.
I appreciate your predicament as it sounds a bit similar to mine , although for a different medication. However, I wasn’t supported by my GP OR my local health authority.
I need T3 hormone for my thyroid condition. This was prescribed by my endocrinologist at a London hospital, not too far from me although I’m in Essex.
For cost reasons initially, NHS England decided a few years back, rather than source cheaper suppliers, they would just take most patients off T3 and put them on the much cheaper and in some case completely unsuitable T4 meds.
My GP practice refused to supply the meds and they were supported by the CCG. They claimed T3 was a specialist medication and therefore the GP was unable to write a prescription for it! Even though NICE guidelines state that patients who are on T3 should remain on it if they are unwell on T4.
Since then I’ve received NHS prescriptions for T3 from my endocrinologist in London. The whole thing is a cost cutting scheme devised by my local CCG. The only person looking out for my health is my endocrinologist Good luck getting the support you need. I wish you well.
My surgery referred me to a new new anti coagulation clinic as the NHS wants to wean us of Warfarin which is 60 years old and there are many alternatives available. After blood tests I had a one to one consultation with a senior nurse who prescribed Edoxaban which only requires one blood test a year. Instead of every few weeks with Warfarin
That's interesting. I like the Warfarin - actually, no I don't but you know what I mean! - as it can be easily adapted to changing INR levels which, for me, makes me feel in control.
I'm triple positive and on apixiban for about 6 years now. I'm doing better than I ever did the 10+ years I was on warfarin. It's not for everyone, but it's good for me.
That's right I had to change back to warfarin from edoxaban as alternatives don't protect people with APS from further clotting. Research came out last year I think
Being on Edoxaban increases your risk if you have APS especially if you are triple positive . I was on Edoxaban and my consultant changed me back to warfrin
You need to speak to your consultant they can not just stop warfarin it's to dangerous without a alternative . I'm very complexed under addenbrooks and Broomfield .it's my GP that issue my warfarin and I'm life long on it . I tried alternatives but we're no good as my INR is so up and down . Hope you get it sorted .
My consultant has left and Addenbrookes have been unable to reappoint. But yes, it's obvious that just stopping providing Warfarin and not suggesting an alternative source is negligent at the very least. You know that, I know that, my GP doesn't seem to...
Do you have a history of clotting? It has become very standard practice to only use warfarin for APL positive patients with a history of evident clotting only now.
Hi, not had this with Warfarin as haemo moved me off it and onto Clexane, my practice refuse to be involved at all now with my coagulation and refused to prescribe. I get my clexane from hospital pharmacy every 3 months now!
It looks like my GP practice are now refusing to give the hydrocortisone and water for an emergency adrenal crisis, they were asked to do this by consultant 2 months ago and nothing!
It looks like GP is doing less & less. I feel completely unsupported by them now!
I hope you get your situation sorted, I’d ring your consultants secretary and hopefully they can supply whilst it gets sorted.
I'm so sorry to hear that you too are being made to feel less than supported. I have rung my consultant's secretary/nurse and she has been very kind and helpful. And horrified.
I have avoided to deal with the medical system on this matter since a year now.One of my best friends in South America is reumatologist, he provides me with 4 months worth of warfarin prescription.
I then go to Chilean pharmacy and import the stock of Warfarin from Turkey through them.
This way I can manage my safety stock and buy warfarin at the cost.
Oh my. Whilst that sounds roundabout and convoluted, you are in control. You are able to feel empowered on your own terms. That's flipping great... Thanks for sharing this.
Reading all of your stories makes me shudder, I’m in Colorado so I’m no help.
One would think that maintaining and improving the patient’s health would be the top priority of every doctor. But you all have to fight for it. So sorry and good luck to each of you.
Hi there. I had a consultant, lovely Natasha Jordan but she left a few years ago and they have been unable to replace her. As all this has blown up now, they've got me in to see a Haemotologist on Monday. I love Addenbrookes.
Do you attend the Anticoag clinic as you live in the area? I'm in Lincolnshire and so I guess that may be why this service has not been offered to me. I am several hours away.
Addenbrookes are appalled at my situation, using words like 'frightening' and 'neglecting patient health' but in spite of letters from them, my GP is not budging.
First of all I want to say how very sorry I feel for you. I do know what its like for a GP surgery to refuse to treat you and I also know what its like to have to fight for a particular medication.
Perhaps I can offer some practical advice as in my view your GP has discriminated against you on the basis of your medical condition, which is not allowed. Secondly, it is against BMA guidelines to stop treatment etc without making sure that a patient has been transferred to another GP.
Here are some links that I hope you might find useful and I hope your situation will be sorted out soon.
Thank you for this. Could you please tell me, are you local to Addenbrookes? I’m in Lincolnshire and I’m wondering if that’s why I’m not as lucky as you!
is it your GP themselves who has stopped the warfarin, or someone else within the practice?
have you asked for an appointment with your GP to discuss? - it’s all very well stopping someone’s meds in a letter, but you may get a different (human) response face to face.
I would definitely discuss with NHS England as it does not seem tight or fair to remove services from you without discussion and proper explanation.
At my practice there is the GP who owns the business plus one other, locums and nurses. They do not want to arrange a meeting with me! I have never even seen the main GP EVER. The CQC are monitoring, as are the ICB (integrated Care Board). Everyone is just dumbfounded. I shall add an update at the top of the page.
Is there an alternative GP practice near by that you can join? No matter what the outcome of any investigation into the behaviour of this practice, if they dig their heels in then it does not help you and you MUST be the priority. I fear that you must find a new GP and quickly.
There is an alternative in a nearby town. However, like everywhere else, they are oversubscribed. Too many new builds, doctors leaving. What a mess! I have been slow to change as I don't want my surgery not to be looked at thoroughly if they can say I'm a patient elsewhere... I know you're right though, I must get on to it. And must write an update too.
Sounds like this GP knows they have a monopoly and is using it to his advantage. Again not very good behaviour for a Doctor who has taken an oath to do no harm! Unfortunately because of the situation he is also probably using it to blackmail the ICB and NHS England by saying if you don't like my behaviour I will shut down and you can find someone else etc etc, which he knows will be difficult for them at the moment and effect a lot more patients. Don't you just love arrogant, God like people 🙄
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