A few days ago, gaygay45 said "I self test and would like to self-regulate, but the clinic does not approve this". If a patient chose to stand firm and insist, they could be in for a fight. Before starting, I would like to know what is the legal bottom line?
I once asked this of a GP friend. He told me I would have to insist several times, and eventually sign a paper which agrees the patient is acting against repeated advice of the doctor etc. The notes of the patient would then be suitably annotated.
Then there is the power. Test-strips can be bought without prescription, but not warfarin.
But what is the legal bottom line? What are the experiences of people who insist?
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ILowe
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I have no idea what the legal bottom line is, but I suspect that might not be the only problem.
Doctors can also choose their patients to some extent nowadays, and can simply ask you to find another surgery. He/She can simply say that the relationship between you has broken down, and that you do not accept his/her advice could easily be an example of this.
I dont know what the bottom line is but as I understand it there are 2 possible scenarios.
1. You can self test which means that you do the actual test at the required time and give your results in to the clinic who then tell you whatdose to take. You have to sign to say you will do as they say and then they take responsibility for any outcomes.
2. You self manage. You dont have contact with the surgery instead you use the same computer program to calculate your dose according to the I.N.R. reading. You have to sign to agree that you are responsible for your own actions.
Not all surgeries are amenable to either of these.
I have opted to do the first option because I like having the security of their advice. I do test myself once a week though which is much much more than they recommend but at least this way I can catch an upward or downward trend and phone the surgery for advice if I think necessary.
I would also be intetested in hearing from people that do self manage to hhear how it actually works. X
Interesting because no one can compel you to take anything unless you're a vulnerable adult and you lack capacity to make your own decisions. The local authority could apply for Guarduanship or there are other legal routes but this is daft. More likely the go could strike you off but it's any interesting legal point. Good luck though.
You use the phrase GP so I guess - like me - you're British. In the UK you cannot be compelled to undergo any medical treatment unless you've been sectioned (and maybe also if you're in prison). That's why you can discharge yourself from hospital when you like, refuse mefication and so on, though in reality few of us do this. In contrast for example in the USA you can be compelled ... That said you need a Dr to prescribe medication so it's a brave step...
Didn't know it could be so complicated. I am not attached to a clinic only my GP. I self test and self regulate with my GP's blessing and I have not been asked to sign any papers. The results and dosage I record and send/take to my GP about every six months. I should be grateful if someone out there can tell me where I can find the computer program which helps with self regulating.
I have a very complex heart condition & been on warfarin since 1998 I now self test & self regulate my consultant & gp are more than happy for me to do this I know my own body & know how to bring levels down now & again the surgery call to check how Im doing but I can always speak to someone if needed never signed anything to do this the strips etc are given on script
Yes, I am British and come to UK regularly. At the moment I use a private doctor in UK to get my warfarin prescription, and he is quite happy that I self dose provided I show him my record at every (infrequent) visit and listen carefully to him if he has any comments, which I do, and it is these comments over the years that have informed and significantly influenced my management methods.
Of course, the goal is to have a good relationship where there is give and take. But, before starting any negotiations you need to know rights and powers. It seems from what is said here, I have a right to self-dose, and a GP has a right to refuse to accept you on their books.
I am also curious to understand why so much of the medical profession in UK are reluctant to allow self-dosing. It is NOT difficult, I have seen some of the official medical literature and I know they are giving wrong advice. [I can support this assertion, but not now]. I am confident I can do it better than many of them. Why are so many Medics reluctant to trust the informed patient? Is is a matter of genuinely thinking they, the medic, knows best? Or is it that they fear legal complications? I would happily sign a disclaimer in that case. Or, is it that they have their way of working, and do not want exceptions, because that opens the flood gates?
Now that is a useful argument. I would guess that a mistake with diabetes testing is more likely to be fatal than a warfarin dosing mistake. Afterall, we are talking about small changes, and a risk of less than INR less than 2 or more than 5, and we know from published guidelines that even up to 9, given no other signs, is not dangerous.
Beautiful: some real documents. The first, shorter one, has some interesting bits.
"You have the right to be involved in planning and making decisions" p9. Then, telling the patient p11 "Please follow the course of treatment which you have agreed, and talk to your clinician if you find this difficult"
Your quote p44. Most of us self managers are working within the bounds of normally used so the question is not raised The other guide you can always use with authority is the British National Formulary. I have problems with the NICE guidelines sometimes, but that is another story. P48 is probably only an issue if you want a more expensive drug on the NHS.
Since I have the right to be involved in the decisions, that still leaves vague, who has the final say. And for years I have been advocating, the final say should be the patient.If the patient messes it up, well, so do doctors, and I prefer to take my own responsibility.
I self-manage and have no problems with the doctors. I have warfarin 5mg, 3mg, 1mg and 0.5mg on repeat prescription, so I just reorder as my stocks at a particular dose get a bit low (I like 2 months worth in reserve). I take 8.5mg p.d., sometimes changing to 8mg if a bit high (INR>2.7) or 9mg if a bit low (INR < 2.3).
The Chichester anti-coag clinic think I'm on 8mg but I don't want to rock the boat.
Self-testing has been shown to provide better results than GPs or clinics, and self management is even better than self-testing. So why would a doctor not agree to the best course of treatment, particularly when it reduces costs?
You would be amazed what I get away with outside UK, and I even have British doctors (privately) who encourage me to do it myself, because I may be better than the local service. The British doctors usually function as my advisors, they set my limits, then I choose what to take and when for AF.
Patient compliance is a key part of medicine, so, there is pressure on the doctor to persuade us.
It comes down to the threat of malpractice. If you go against your doctor's advice, s/he needs to be protected to avoid blame for a bad outcome.
For example: My cardiologist insisted I take flecainide post-ablation last May. First he said "people don't like breakthrough arrhythmias." I said I didn't mind. Then he said my heart had been through a lot of stress and I need to make it as easy as possible. He admitted there was no risk to my heart muscle but pushed the point anyway. When I objected, he said, "We like to make sure our patients are covered." Replace the word "patients" with "asses" and you get my meaning.
2nd example: My GP object vociferously against my taking Cernitin (Graminex - a flower pollen extract used in Europe (I'm in the US) for 50+ years) to treat enlarged prostate. He also objected to my getting a PSA test to establish a baseline for comparison. I insisted, he ordered the PSA, I noted the number, and in Jan. 2015 I started taking Graminex. One year later I had another PSA test and - voila! - the number was 14% lower. He won't walk back his earlier resistance, but now he says if it works I should keep doing it.
3rd example: After doing blood tests and an MRI, my neurologist says nothing can be done about my autoimmune disorder (described ad nauseam elsewhere in this forum). I've since learned that mast cell activation disorder could be the cause, and I'm taking Quercetin, which is known to stabilize those cells. It seems to be working but I won't be confident about that for another week or so. If I listened to Dr Neuro I'd be considering suicide out of sheer hopelessness.
This is called medicine?
These experiences are why I contend that one must be one's own doctor. The medical folks can act as advisors and technicians, but except in unusual cases noted by others in this thread, they should not be allowed to assume power over a person's health.
I strongly agree with you! I must become my own doctor. The major difference between a doctor and me is I do not have the breadth of experience to comment on problems I have little knowledge of. A doctor can cope with a wider range of problems. But I do know myself.
But, I have had some humbling experiences with handling the health of a child. I researched the literature, wrote it all up. I had the facts, but had missed the wider picture and how to weigh the facts. The kindly consultant put his finger on item after item. Then said, you do well to research things. Next time, come with your questions and findings and discuss them with me. I cannot read everything, and you showed me interesting articles. Keep it up, but if you can, delay decisions until you have discussed it.
I researched Pill in the Pocket. I held off deciding on it until I had asked a consultant. She spotted a crucial hole in my knowledge. I still stood up to her and refused to take bisoprolol, and I refuse to take blood pressure tablets.
There is a whole literature available on how accurate experts are compared to non-experts. It is sobering.
Look at the number of patients who stop taking statins. The medical profession should have largely abandoned them years ago.
The best tactic I have is to log everything, then present doctors with written lists of questions. Even the timid person can do that.
What an interesting thread. The topic seems to be more about the relationship between Doctor and patient than self testing, but self-testing is a a good example of the post-code lottery approach to health care currently operating in the UK.
I have researched and questioned everything and refused to take advised drugs and subsequently been told, by a junior doctor, that because I went privately my allocated consultant wouldn't see me or advice the junior doctor on my care, I should go back to my 'private' doctor - I was left with no option but to do that. Interestingly enough, my private doctor then became a lead consultant of that department and has a completely different attitude.
The NHS, and the people who work within it, are government funded so are financially dependent upon government. Large institutions such as Health Trusts tend to create their own cultures which can be very restrictive and their culture from one to another varies. The NHS governance structure is just now SO complicated that even expert eyes glaze over when listening to the management try to explain - there are now so many quangos attached to the NHS that no one seems to really know what is 'allowed'andwhat is not so in my experience, develop their own interpretations of 'best practice'. I.e. Make it up as they go along to suit their own bias.
GP practices, however, are not directly funded by government but run as private practices and contract with local commissioning counsels for delivering services on behalf of the NHS - therefore have far more atonomy than hospital based doctors, however, they are dependent upon whether or not the local commissioning body will fund certain practices - such as funding self testing strips. You will often come across a hospital consultant prescribe a drug (NOACs were avoid example a few years ago) which GPs refuse to fund. The first prescription from the consultant will be funded by the hospital budget but repeat prescriptions will be GP funded.
Unfortunately there is a huge shortage of GPs in the UK and few medical students wanting to train in GP practice so the problem is going to intensify in the next few years as many GPs are due to retire, hence Ian's comment, so I think you will see a lot more GPs turning toward private practice in this country in the next 20 years and new systems of funding coming through - there is already at least one large organization advertising on TV. My hope that when that happens, patients will be offered more flexibility but it will be at a cost.
I agree that healthcare in other countries seems to be much more and flexible, especially in Europe and much better informed on latest thinking - but also more expensive for the patient. The culture of paying in one way or another is more acceptable than here in the UK where, unfortunately, the most desirable option of 'healthcare for all, free at the point of delivery' is now one that the UK government can no longer afford but rather than come straight out and say that (political suicide) it will be death by millions of minor cuts so therefor there will be much less flexibility regarding funding of self-testing, because of the imperative to control costs, which tends to lead to a control culture. I believe that is the root of the problem you face in seeking self testing, monitoring and dose adjusting.
Less a matter of rights and more of varying and sometime opposing cultures within the global NHS funded organizations.
PS - my neurologist encourages me to take responsibility for my own dosage regime - but then he made an executive decision that I am informed enough and intelligent enough to work within his guidelines and was willing to prescribe the treatment of my choice so our relationship is strong enough for us to be able to discuss, sometimes disagree and negotiate. He prescribes a treatment for me which is off license and was queried by the pharmacist.
I actually started out in a strange way. I used to get the test done with venous blood, then self-dose. It is only recently I have started to self test, and, mercifully, the strips can be bought without a prescription. Warfarin is also cheap, especially if you can find a pharmacist who will supply it in tubs of 500. You need a friendly doctor who will write a private prescription for that.
Yes, I guess, the bottom line is good relationships and finding people you can work with. This thread has shown some of the parameters of the debate. Knowing where you can stand firm is important before entering into any discussion.
I fail to see why self-testing is more expensive. It costs over 25 pounds privately to have a venous blood test, and then you have to pay a doctor for the dosing. We buy our own machines. Test strips are about 3 pounds each. Actual costs are more because we tend to test more often and sometimes make mistakes. We self dose. If you count 10 tests in a year, that saves 250 pounds plus doctor fee @50 per go = 500 pounds. A year of strips is around 70 pounds. That means >700 pounds against 70 pounds for and self dosing + self testing. This is a no brainer.
My point was not the expense in itself but the need to control but that when resources become more limited the need to control increases. Add that to an increasingly more litigious culture, walls go up, rules become intractable and sense seems to fly out the window!
I agree with everything you have said which is one of the reasons I would not take Wafarin and chose NOAC instead - which are more expensive but do not require more than 2 blood tests a year.
Sounds good for you. Thanks a lot for helping me to understand the current culture. Understanding it, and knowing the range which is possible, greatly helps when negotiating.
Just for completeness not all patients Sectioned under the Mdntal Health Act are compelled to take treatment, 2 patients are not. Section 3 is s treatment order and some other more complex ones. B
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