I was diagnosed with Hughes Syndrome a couple of months ago by Professor Hughes. He advised my GP to start me on Warfarin as quickly as possible to prevent stroke or another TIA. I also saw Professor Khamashta. They both told me to buy a Coaguchek machine and self test. I did this. I expected the Warfarin nurse to help and advise me but instead she wanted to know 'why do I have to self test? Is the machine quality checked and calibrated?' Each visit to her clinic I was hit with questions I couldn't answer. This was new to me I told her and asked her to get in touch with London Bridge Hospital. I felt so intimidated by her I cancelled an appointment. My husband and I met with my GP that week to ask if I could report to her instead. No way! She didn't want the responsibility! I agreed to go back to the clinic under their terms. I was expecting to hear from her and be told to make an appointment. Yesterday I received a letter from my GP saying that she will no longer prescribe me Warfarin as I'm self testing! She suggests I get my prescriptions from London Bridge Hospital! (I live in Scotland) I'm devastated at this response.
Has anyone else had similar problems?
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AvsG
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This is a tricky one. But the main thing at this stage is that you go to the clinic for monitoring to ensure you are not putting yourself at risk. And this may give you a chance to get on a better footing with the nurse if you go along with her for the moment.
I don't know what size your GPs practice is, but they may not have had any patients self- test before so it is new territory for all of you. Would it be worth asking the nurse to write down what she would like to know and say that you will find the answers?
My surgery supports self- testing if they feel the patient is suitable, but it is done by means of a contract which if I break they will refuse to allow me to continue with self testing.
I am sure there will be others here who will be able to give you ideas as well
Thank you for your good advice. I met with my GP and I agreed to go along with the nurses wishes. My GP was going to speak to the nurse and get me back into the clinic. I was waiting to hear back then make an appointment. Instead I got the letter, there was no mention of me joining the clinic again. I'm hoping the specialist I saw at the hospital can help me to sort this out
Glad to have been of help. But have you started warfarin yet because if so you must be monitored in case you go out of range. Sounds like it might be best to speak to your GP ASAP.
I started warfarin about 2 months ago and have been getting on fine. The specialist in Dundee checked my INR in the hospital and was very happy with my self testing. I will meet with my GP again and try to sort this out
I'm afraid this can sometimes happen which is why our charity advises that you check with your GP before considering buying the machine. We have covered this in some depth on our website: hughes-syndrome.org/self-he... - particularly the heading 'Points to consider before buying a self-testing machine'.
With budgets as they are many hospitals and GPs are pushing the responsibility and, more importantly at the moment, costs back to each other. Jeremy Hunt seems to have started a war between GPs and hospital services and us patients are caught in the cross fire.
I think your only practical solution would be to go back under your GP unless London Bridge do actually want the responsibility of managing your anticoagulation - which seems impossible if you're based in Scotland
My GP was happy to prescribe test strips, warfarin etc until the warfarin nurse complained about me. The specialist in Dundee was very supportive and said that he would take me under his care. He took blood from me so I could calibrate my machine. He felt it was I important for me to carry on self testing. I don't know if he can authorise my prescriptions
Well, it's encouraging that the Dundee specialist was onside and will look after your treatment - I don't see why he wouldn't be able to authorise your warfarin prescriptions, perhaps contact him and ask?
I self test, but couldn't do it straight away, I had to go regularly to the Anticoag clinic for a few months, I then spoke to my consultant re self testing who said that as long as my gp and the anti coag dept agreed that was fine.
My doc agreed to fund the test strips and I purchased the machine myself. The anti coag department arranged a training session for me on how to self test, I had to sign a contract with the anti coag dept, if my inr goes out of range I have to have a venous blood test, also I have to go once a year to anti coag to check the machine.
I did attend the warfarin clinic but felt intimidated by the nurse. She was not happy taking instructions from London. It was all new to me and I needed her help and support. My GP agreed to prescribe the test strips etc so I bought my own machine. I'm hoping the specialist in Dundee can support me as I can't do it on my own. Signing a contract it's a good idea, I will suggest this.
Hi, I lived in Scotland, London and now Portugal. I have always found the nurses in the anti-social clinics first class. There must be a facility near you in Scotland. The problems with Doctors is quite simple. They don't want to take responsibility in case someone sues them. I have been taking Warfarin for a number of years now and although I live in Portugal now I have my blood tested in a private clinic where I get a blood test for about £2.50 every couple of weeks but this clinic will not tell me how much Warfarin to take (unless I pay their Consultant £50. However I have been taking Warfarin for so long that I adjust the amount myself and thank God, everything is going fine, so far. Please don't get nervous or panic about your situation as this will not help you. Take care James H.
Thanks for your words of encouragement James. I am confident to self test/dose but do need the support of an expert if ever needed. I've been coping on my own for a few weeks now and keeping my INR safely in the target range. The specialist I recently saw in Dundee is aware of my situation and told me not to worry that he would take care of me. He advised me to carry on self testing/dosing. He saw my results and could see that I had good control. I think this has upset the nurse and she has voiced her concerns to my GP. My GP was happy to prescribe warfarin and test strips until yesterday. I did not want to be excluded from the clinic, I wanted help and advice. She excluded me without any discussion.
I have been self testing for 10 years now following my diagnosis by Professor Hughes. My local anti-coagulation clinic were not happy at first, but as they use a similar machine to mine and mine is checked against theirs on an annual basis, they now are happy for me to self test and then ring them with the result and they ring me back with any change in dosage. My GP is happy to prescribe my warfarin but will not prescribe the strips because of the cost. I have to buy the strips myself at a cost of £60+ for 28. Since I was discharged by St Thomas's last year I have not had any medical support for my APS.
I am sorry you have not had any support. It's just as well we have this forum. I am getting support from a specialist in Dundee now. He phoned me today and is not happy that my Warfarin clinic have been so unhelpful. My GP has prescribed the strips for me and it was fine until I had a problem with the clinic. It's helpful to know that you have managed all these years
I'm so glad the Dundee specialist was helpful and hope he can sort out the warfarin clinic people for you. Could you let me know if he appears in our list of specialists please: hughes-syndrome.org/self-he... under the heading Scotland specialists. If not, could you let me have his name so we can ask if he'd like to be included - this is really important for other patients who might be having similar problems. Thank you
It was Professor Hughes and Professor Khamashta that made the recommendation. They recommended Professor Jill Belch. She is based in Ninewells Hospital in Dundee in Vascular Medicine. I saw her colleague Dr Bains and he was very helpful and understanding. He seemed to know all about Hughes Syndrome. I have an appointment to see Professor Belch in November. It makes such a difference when talking to a Doctor that is well informed about Hughes and doesn't try to 'fob' you off. I am so lucky that Ninwells Hospital is in my area and maybe my GP and Warfarin nurse will listen to them.
Thank you so much for letting me know - I will write to Jill Belch and Dr Bains to see if they would like to be included in our directory. It was Peter Donnan from Dundee University who backed the first paper written and researched by our charity and a patient looking at patient experiences with Hughes syndrome: link.springer.com/article/1... - so it seems they are pretty switched on there
It would be interesting to know what experience the nurse has of Hughes if you could get it out of her without making things worse.
I too self test, and doing so has proved really useful for me and all my doctors , I also decide on my own dose and have done so for very many years. My INR can change enough in two days to require me to inject heparin ( my decision on Profs guidelines) and with a history of close shaves my doctors are happy with these arrangements that have done the job for a good while.
We are, with a little initial help, pretty damn good at looking after our own coagulation, we live with it the doctors and nurses don't.
Thank you! This has given me the confidence to carry on as instructed by Professor Hughes and Professor Khamashta. My specialist in Dundee phoned today and is sorting things out with the nurse and GP. He fully supports and encourages me to self test. I've cared for my Diabetic daughter since she was 9 years old so I can learn and act responsibly.
My husband has had the same problem. The GPs warfarin technician isn't very helpful and the GP himself hasn't answered if my husband can self test.
He doesn't have a consultant at all which is very frightening when his INR varies so much and he has to wait several weeks for each test. It would be so much easier to test every two weeks and submit reading to the technician.
The nurse is not happy taking instructions from London Bridge. I think that is why it was suggested in the letter that they deal with it. My consultant in Dundee was quite shocked when he saw the letter today and said this had not happened before. He phoned me and assured me he was in agreement with Professors Hughes and Khamashta. He was meeting with the head of his department today and they are putting a very strong letter together to my GP. I am lucky to have his help or I would be quite lost. I will take your advice and smile at the nurse and say vey little!
That is very worrying for your husband. Going several weeks is such a long time. I bought the Coaguchek machine and I feel so much safer having it. I know I can test if ever I feel unwell and not worry about my INR becoming too high. So far I've never gone higher than the recommended INR. Can you find a consultant in your area that knows about Hughes Syndrome? Maybe you will have to travel to find one but it would be good to have some better care for your husband.
The nurse did go to her boss (haematologist) and he felt I was a risk. That's when she excluded me from the clinic. The first I knew about this was when I met with my GP. My husband was with me and not at all happy that This hadn't been discussed with me. My GP agreed to speak to nurse and get me back in to clinic if I followed her instructions. I agreed to this. I was waiting on my GP to clear things and tell me to make appointment at clinic. Instead I got letter refusing to prescribe warfarin as I was self monitoring/dosing. I asked the nurse to email London Bridge and they would explain the advice I had been given on self monitoring and why I was to do it. It was after this I got the letter.
I went to the nurse expecting advice and support but instead I got the opposite.
I'm much happier now I have back up from Dundee consultant.
Unfortunately as my husband found out at the chest clinic there are some unpleasant nurses around. I had to with him in the end because he couldn't face going alone. She was very pleasant to anyone she could patronise, so we worked out she didn't like him because he speaks with a posh accent and wears a suit if is in his way to work. We did think about complaining but she left. So I suspect you may have hit the nail on the head there about private doctors.
I think you may be right! I asked lots of questions about Warfarin and it's effects etc. I wanted to learn. I think she is used to having patients with little knowledge who give her total control. I think she will listen to the consultant in Dundee as that is her health board and NHS.
Thanks Mary, I intend to be strong and not give up! I'm waiting on letters passing between GP, nurse and specialists so will keep you informed of the outcome.
I had the same problem back in 2004 when I bought a machine on Professor Hughes advice, whilst he was still worked in the NHS I might add.
I too went to the clinic to learn, one time in passing I mentioned the machine, next thing the Dr at the clinic told me if you plan to use the machine don't come back here, and he said, your GP will never prescribe the strips as we have all the GPs on our side in this town.
My GP at the time thought this was funny and said of course he would. He said it was no different to letting a patient manage diabetes.
So I have self tested and self dosed ever since, alone I might add. Professor Hughes did suggest I have a consultant closer to home as I live in Yorkshire but one guy I saw, clearly hated the fact the Professor had become a professor when he hadn't ( he said, I knew him when he was nobody) consequently I was afraid to go back. I have stayed quietly out of site of NHS consultants since. However I did see a haematologist on another matter 2 years ago and she immediately said well I would have that INR down to 2 straight away. So I never went back.
I have had 3 GP changes since but so far they accept what the Professor still says.
Put having read what haematologists are now saying it looks like we are all in for yet another battle with the NHS to just get our warfarin.
Thank you for telling me of your experiences and well done for being strong and standing your ground. My GP was fine at first with prescriptions for warfarin and test strips. It was the Warfarin nurse that got to her and refused to see me if I carried on self testing. They were not happy taking instructions from London Bridge Hospital. I now have a specialist in Vascular Medicine (recommended by Professor Hughes). He is very supportive and understands the importance of self testing for this illness. He is sending out another very strong letter to my GP. I'm waiting anxiously to see what happens. Meanwhile I'm really anxious in case it's not resolved soon and I run out of Warfarin and test strips. Since all this has happened I have been self testing and dosing. I have very good INR control and feel safer. My specialist saw my results and was really pleased with them and had lots of confidence in me to carry on. My daughter has Type 1 Diabetes and I've cared for her since she was 9years old. So encouraging to hear your story . . . Thank you!
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