Do doctors have to follow Guidance?

[holyshedballs]

Short answer = No.

Long answer =

In Kaur v London Borough of Ealing [2008] EWHC 2062 (Admin) Moses LJ (sitting at first instance) stated at paragraph 22:

"An Authority is only entitled to depart from the statutory code for reasons which are clear and cogent (see R(Munjaz) v Mersey Care NHS Trust [2006] 2 AC 148). I suggest that that is sufficient authority also for the proposition that any authority would have to justify its departure from the non-statutory guide."

So doctors can deviate from statutory guidance provided that they have good reason to do so, and record that reason.

Doctors have to have due regard to guidance produced by the National Institute for Clinical and Health Excellence (NICE). Once NICE guidance is published, health professionals are expected to take it fully into account when exercising their clinical judgment. However, NICE guidance does not override the individual responsibility of health professionals to make appropriate decisions according to the circumstances of the individual patient in consultation with the patient and/or their guardian/carer.

In particular, guidance that does not recommend a treatment or procedure, or that recommends its use only in defined circumstances, is not the same as a ban on that treatment or procedure being provided by the NHS. (Such as the so called ban on T3). If, having considered the guidance, a health professional considers that the treatment or procedure would be the appropriate option in a given case, there is no legal bar on the professional recommending the treatment or on the NHS funding it.

Is the statement from the British Thyroid Association national guidance that doctors have to have due regard to?

The BTA published a statement (NB the BTA have been very careful not to call it Guidance or Guidelines) to support their laboratory blood test approach. It is only 10 pages long and is not supported by a great deal of evidence. Further, it does not meet the criteria laid out in Ali v London Borough of Newham 2012.

In that case, the Judge said that in order to ascertain the weight that should be given to particular guidance it is necessary to give due regard to:

- the authorship of the guidance,

- the quality and intensity of the work done in the production of the guidance,

- the extent to which the (possibly competing) interests of those who are likely to be affected by the guidance have been recognised and weighed,

- the importance of any more general public policy that the guidance has sought to promote,

and

- the express terms of the guidance itself.

The author of the Guidance is the British Thyroid Association.

The BTA is “A non profit making Learned Society, membership of the BTA is restricted to professional clinical specialist doctors, retired consultants, academics, scientists, trainees, nurses and medical students in the UK who manage patients with thyroid disease and/or are researching into the thyroid and its disease in humans.” british-thyroid-association...

The BTA is not a Public Body. It is not included in the list of public bodies that the Freedom of Information Act applies to. The statement has not been required to be produced by an Act of Parliament or Regulations made under any Act of Parliament. There is no statute to require health professionals to have due regard to the statement.

Therefore the statement is not statutory guidance.

The BTA is not a Royal College, Royal Institution Chartered Institute or Regulator.

The BTA is not a Professional Body. It does not have a Code of Conduct, which if members breach, requires their expulsion from the body. A doctor does not require membership of a BTA register to call him/her self an Endocrinologist or Thyroidologist. Membership is gained by completing a form, being proposed and seconded by existing members and paying a fee, currently £55 for joint membership with the British Thyroid Foundation.

The BTA has not been charged by a Public Body to produce any guidance.

The BTA is simply an association of people.

The BTA did not consult real patient organisations; just organisations they have a close connection to. This in turn presents an appearance of bias. The case of Lawal v Northern Spirit Ltd

[2004] 1 All ER 187 said that if in the view of a fair-minded and informed observer there was a

real possibility of subconscious bias, the case should be dismissed. With such close relationships with the BTF and the Society for Endocrinology, a fair-minded and informed observer would form the view that there was a

real possibility of subconscious (or conscious) bias to the endorsements of the statement and consequently cannot be relied on.

The express terms of the statement only refer to "primary hypothyroidism", yet doctors use it as if it is about all form of thyroid problems such as:

- poor T4 to T3 conversion,

- excessive rT3 production,

- T3 resistance at the cell membrane

- T3 resistance at the nuclear membrane

etc..

In short, the statement does not carry weight and more importantly it is not logical. To use the BTA statement for all thyroid problems, let alone "primary hypothyroidism" is not logical. The Bolitho v City and Hackney Health Authority 1997 case requires doctors to carry out a course of action that is logical or face legal action for negligence.

Doctors do not have to comply with the BTA statement, they should not use it to withhold treatment or reduce a patient's dose. In fact, if they do, they could be negligent and face court action.

[Hidden]

Thant you holyshed balls. Now we need a crowd fund to sue a doctor for following guidelines when they should have used thier own clinical judgement instead.

[helvella in reply to Hidden]

Chasing individuals through the courts, whilst the ultimate application of this, seems not to be the right way to start. Remember, it is very easy for that sort of approach to make martyrs.

[holyshedballs in reply to helvella]

My view is that patients should be aware of the status of guidance and the legal view of guidance. As George Orwell wrote - Knowledge is Power. The courts have made it clear to the medical profession that their paternalistic approach, so far as the courts are concerned, is over.

However, this has to filter down to the consulting room where patients do not normally have access to the courts to remind the doctors. So, in my view, patients need to be empowered by knowledge to counter any of the myths that some doctors come out with. Any course of action against a doctor has to be proportionate so I think that a staged approach is proportionate. The first step should be advice. In the context of an appointment with a doctor, this is by the empowered patient advising the doctor that what s/he has said or proposed is not true or lawful

When doctors come out with myths such as "I have to follow the BTA national guidance" the patient can remind the doctor that the guidance is not logical and s/he can deviate from the guidance. The doctor can then record in the notes that the after the doctor/patient discussion (required by Good Medical Practice) they have agreed to not follow the methods in the BTA statement. As we all know, that does not always happen but it is what should happen - in my view.

In my view, court action is definitely a last resort and most problems should be dealt with in the consulting room where possible. Its daunting and can be exhausting to contradict a doctor but we are fighting for our health and well-being, so it is worth it.

Remember, the law has empowered the patient. Doctors can no longer lawfully act in a patients best interests. The law says that a mentally capacitated patient is the only person who make decisions on their own behalf. Not doctors.

[Hidden in reply to holyshedballs]

I dont know which doctors you have been talking too but most willl not even engage in a conversation and I have written tomy GP pointing out just such facts and have been ignored. I think proportionate at this stage is to seek proportionate compensation for damages. This forum has been going for about 15 yeasr now. there have been numerous petitions, thousands of letter written, thousands of contacts with GPs and of contacts with GPs and CCGS. I think there has been enough communication on this issue. The problems is that the doctors are more afraids of thier bullying proffessional body than they are of thier patients.We are totally disempowered.Sueing is not only proportianate at this stage it is frankly kind and still a weak response. It will take several sued doctors to make a dint in the status que andif I ever get enought money to sue it will be the first things I do.They are ruthless enough to deny us all the treatment we need I see o reason to be soft with them. Our perhaps we are all to girly to stand up for ourselves.They would not be martrys either we have the rational arguement and this would go very high up in the courts and lead to loads of publicity and lots of people telling thier storsy of neglect. the medicall profession do not have a great rep anywhere these days.

[helvella]

Well aware that this will only be your own opinion, but how would you assess the NICE Clinical Knowledge Summaries for thyroid issues in terms of the criteria you have identified?

[holyshedballs in reply to helvella]

Very briefly looking at the CKS for hypothyroidism (I'm at work now) it is based mainly on the BTA statement and Garber et al's Clinical practice guidelines for hypothyroidism in adults: cosponsored by the American Association of Clinical Endocrinologists and the American Thyroid Association.

The CKS is acting as a professional opinon

My view is despite the CKS's well intentioned aim, it is not logical for the reasons we all know.

The Bolitho v. City and Hackney Health Authority [1996] 4 All ER 771 case said that a professional opinion relied upon cannot be unreasonable or illogical. If the opinion were illogical, then the action would still be a breach of duty.

So i think a patient is entitled to say to any doctor who refers to the NICE CKS on Hypothyroidism:

1) a doctor is not under any requirement to follow the CKS. It does not replace your clinical judgement

2) Further, despite the CKS coming from NICE, I think that it is not logical for these reasons (lists reasons that are too long for this reply)

3) Consent: patients and doctors making decisions together requires you to take account of my views experience and KNOWLEDGE

4) I have weighed up the potential benefits, risks and burdens of the various options as well as any of my non-clinical issues that are relevant to them. I have the right to accept or refuse an option for a reason that may seem irrational to you, or for no reason at all.I have decided to accept the option of T3/T4/NDT/staying on my dose.

[shaws]

My goodness - you have hit the bulls eye right enough.

Why then do the BTA pronounce and publish False Statements about NDT - despite receiving three yearly reminders from the publisher of the following for a response. They ignored it completely and Dr Lowe died and never received a response. Other 'holistic' doctors think the same (I am using the word holistic as I mean take the whole body and symptoms into consideration and not just a blood test).

thyroidscience.com/Criticis...

NDT has now been withdrawn in the UK and despite people recovering with it and left bereft and unwell on levo and many cannot source their own NDT and are not comfortable doing so. They remain unwell. This is just one tragic story and I hope it isn't common but we will never know as the Death certificate will probably state 'while mind was disturbed'.

tpauk.com/main/article/jacq...

Lorraine Cleaver was also on the point of taking her own life when she was referred to Doctor Skinner and was prescribed NDT and is also another Woman on a Warpath. Dr Skinner (Virologist) was villified by the 'professionals' and one by one they refused to come to a Conference set up by Dr S to discuss the 'Parlous of Patients undiagnosed but with clear clinical symptoms' and one by one all of the Endocrinologists refused - the last the day before. She has an ongoing case before the Scottish Parliament.

This Statement was made by Dr Lowe

Abstract. In 2007, an Executive Committee (the Committee) of the British Thyroid Association (BTA) published a document in which it concluded that levothyroxine is safer, more stable, and more effective than Armour Thyroid. By extension, the conclusion also applies to other desiccated thyroid products, such as Erfa Thyroid. Enough evidence is available, however, to conclude that T4/T3 therapies with either synthetic hormones or desiccated thyroid are safer and more effective than T4 replacement, and that desiccated thyroid is more stable than levothyroxine products. The Committee mentioned clinical trials that directly bear on its conclusions, but it did not include any of these in the reference section of its document. Instead, it referenced a review of the clinical trials by Escobar-Morreale et al. and a meta-analysis of the trials by Grozinsky-Glasberg et al. These two publications, however, deal with synthetic T4/T3 therapies, not desiccated thyroid. Both publications contain factual errors and unbalanced presentations of data, excluding or limiting data favorable to T4/T3 therapies. Specific examples from the publications are included in this rebuttal. The unbalanced data presentations and factual errors of Escobar-Morreale et al. and Grozinsky-Glasberg et al. may have influenced the Committee’s conclusions. Nonetheless, the Committee’s document contains false statements and unbalanced presentations of data independent from those in the other authors’ publications. Specific examples are included in this rebuttal. The Committee, the BTA, Escobar-Morreale et al., and Grozinsky-Glasberg et al. are all called upon to correct their false statements of fact as well as their unbalanced presentations of data relevant to their conclusions.

thyroidscience.com/Criticis...

We have quite a number of scientists who have proven that many improve on a T3/T4 combination but no notice seems to be taken of these important findings. T3 withdrawn due to exorbitant cost.

When suffering people have no input on what hormones may make them well again and it can vary between them should be permitted trials - life is very difficult and members of families may not have the sympathy needed as the person is 'taking medications' so should be fine now.

[holyshedballs in reply to shaws]

I am not sure why the carry on with their statement. The evidence is clear as you say. The doctors are clearly intelligent people so they must be able to see the evidence in front of them. But a lot of doctors professionally arrogant and think that are right. At one point, doctors were taught that the human liver has 5 lobes. this was because they were taught by comparative anatomy using pigs as the animal with nearest anatomy to humans. Pigs livers have 5 lobes, so they taught that human livers have 5 lobes. Even when it was clear that the human liver does not have 5 lobes, doctors were still taught that it does!!

On the legal side of things, as I have said, the BTA is a grouping of people. They are not a public body. If they were a public body their document would open for Judicial Review.

Judicial review is a type of court proceeding in which a judge reviews the lawfulness of a decision or action made by a PUBLIC BODY. In other words, judicial reviews are a challenge to the way in which a decision has been made, rather than the rights and wrongs of the conclusion reached. The grounds for Judical Review are that the decsion was

- illegal

- irrational

- there was a procedural impropriety

- a legitimate expectation.

because BTA is not a public body they cannot be Judicially Reviewed on the lawfulness or the rationality of the statement.

however, any Public Body that uses the BTA statement COULD be Judically Reviewed because of the irrationality of using the BTA statement.

I think that PrescQIPP is a public body because it acts like one. Further, its decision to use the BTA's guidance to recommend that patients are swapped from T3 to T4 is at least irrational and possibly unlawful - i.e. taking decisions out of patients and doctors hands. In my view it is ripe for Judicial Review but that is another story - and could be expensive.

[lolajone in reply to holyshedballs]

Is a CCG a public body do you know? And even if not if Shropshire CCG are now stopping t3 presumably based on PresQIPP or NICE then could the CCG be subject to judicial review? Surely better to address the CCG rather than individuals?

[helvella in reply to lolajone]

Surely every CCG is a public body? Cannot see how it could be otherwise as they are part of the structure of the NHS.

[holyshedballs in reply to helvella]

Yes every CCG is a public body. This means that CCG's could be subject to Judicial Review. As could PresQIPP.

[Summer64]

Still digesting all this but NICE have not yet given any guidelines on Liothyronine as I contacted them.

[holyshedballs in reply to Summer64]

The original recommendation to switch patients from T3 to T4 came from PrescQIPP, not NICE. PrescQIPP used the BTA statement as evidence for its recommendation.

However, even the BTA are up in arms about the PrescQIPP recommendation and have stated that patients who have a need for T3 should stay on it. british-thyroid-association...

[Summer64 in reply to holyshedballs]

The Department of Health though keep quoting NICE guidelines. My CCG sent me the PrescQIPP documents and even they say that there are some people that need T3 and should remain on it.

[helvella in reply to Summer64]

They might well be quoting the Clinical Knowledge Summaries - now maintained/managed by NICE - but there are not yet any formal NICE guidelines for most thyroid issues.

If they are quoting, identify where they are quoting from. Precise words and links or formal references would all help.

[Supul]

Thank you, for sharing such important, and extensive information holyshedballs.

The topic makes me ponder the questions;

Did Henchmen Have To Follow Orders? What Would Drive Their Yes, Or No, Response In Action?

I can only conclude that a) they had no conscience b) their response was driven by fear...

No matter how far we come in educating populations, I guess, human nature still isn't being studied enough, so that we can all truly care how others feel, and try to perceive the world within which they live.

To change our behaviours we must be prepared to understand why people act as they do.

I think your topic is a great platform for such a debate.

[trelemorele]

I really like what you're doing here, I appreciate and find it very informative.

However unless there's class action against "paternalistic" approach of MOST doctors, one individual lifetime is not enough to fight with even.one doctor who will hide behind thousands of documents, guidelines, other doctors, peers and highly positioned professors or retired medical advisers.

I agree with all You're saying. But after weighing in what's more financially and time viable I chose to get another doctor to deal with (there's millions of them all.over the world) over engaging in a fight which will be time and money and probably health consuming.

Easier, cheaper, less hassle.

[holyshedballs in reply to trelemorele]

Thank you. That's always an option for some people. Others are geographically stuck and others cant afford to change doctors.

Members can provide information and and knowledge and advice. Just as in the GMP consent, its up to the individual what weight they put on that knowledge and advice and how they use it.

you are right that some doctors will hide behind thousands of documents, guidelines, other doctors, peers and highly positioned professors or retired medical advisers. I'm giving my view on how to get round that using their own guidance and the law.

I like the way you expressed your decision - weighing your non clinical needs and coming to a decision.

Its about generating options for our own health and welfare and making our own decisions.

This is entirely my view but I think that if we don't engage with the doctors, they will not change their behaviour and that is bad for patients and the profession.

We are in a different era now legally and technologically. The internet has empowered patients and the law has confirmed that no-one else can act in a competent persons bests interests. We are able to act differently - if we chose to do that.

I think that the days of suffering until bad doctors move, retire or die are over. The medical environment will change slowly but it will change in the patients favour.

[trelemorele in reply to holyshedballs]

You're doing really good job. Thank.You.

Really good post!

[Hidden]

Thanks you for this well thought out information holysheads.Maybe also share it with ITT.

[jgelliss]

I Can Not Believe this . How can one DENY the RIGHTS for Patients TO FEEL OPTIMAL whether with NDT or T3 ???? IT'S THE PATIENTS RIGHTS TO CHOOSE WHAT WORKS WELL FOR THEM AND NOT ANYONE ELSE . It's like DENYING WATER FOR THE FISH . Don't they KNOW IT"S SURVIVEL FOR THYROID PATIENTS WELLBEING ????????

[holyshedballs in reply to jgelliss]

Thats the point of my post and what the Supreme Court said. In my view it is up to us to make it work.

[jgelliss in reply to holyshedballs]

Your SPOT ON . We Can HELP Make The CHANGE !!!!! And We Want It N-O-W ..

[Zephyrbear]

I had an appointment with (not my regular) endo yesterday and he had great delight in informing me that from now on T3 would no longer be prescribed in Shropshire as the CCG had banned it. When I said I wasn't prepared to do so and that even the BTA recommended that it shouldn't be removed from people for whom there is a clinical need, he just waved his hand and said that was immaterial... the CCGs had spoken and put a full stop to it, and that was that!

He said that he had taking over my appointment as he was the designated 'T3 endo'... He also seemed full of relish until I told him that I lived over the border in Wales!

Deflated, he acknowledged that he had no jurisdiction there, gave in and agreed I might as well keep my T3 prescription going for the next 12 months and he would see me again then.

Then he launched into an extraordinary diatribe about ThyroidUK and 'that' Durrant-Peatfield, saying there were some dreadful practices going on out there and to beware... That all this action they were taking and patient pressure etc. had produced nothing! By this time I was quite ready to let him do all the talking... Quite honestly, it was impossible to get a word in edgewise anyway and he wouldn't have listened anyway, and the rest of the appointment descended into a political argument and my own condition was utterly ignored.

He asked me whether I had sourced my own T3 and then proceeded to warn me about the stuff that masquerades as T3 on Amazon, and I told him I wasn't stupid.

Then he had another go at ThyroidUK for not publishing the alternative sources on their website and then asked me (as I was going out of the door) if I would let him have a list of private sources of T3 in a letter marked 'Private & Confidential' so nobody else would open it... I left with a cheery goodbye and '...of course I will...' adding under my breath 'when hell freezes over!'

He took over my appointment from my usual, albeit dreadful, endo in gleeful anticipation of being able to destroy yet another person's health and then expected me to cooperate in his little fishing scam...

I may be hypothyroid, but I have learned (through Barry Durrant-Peatfield's book) to treat myself to the optimum and I don't suffer from brainfog so, as far as I'm concerned, he can go whistle!!!

Sorry for the length of the post, but I am still fuming about this little t*rd and I would advise people to beware, as it seems the establishment may have resorted to fishing for info on alternate sources of T3, for whatever reason...

[trelemorele in reply to Zephyrbear]

Amusing, interesting and quite depressing. Nice read, gave me chuckle LOL

[holyshedballs in reply to Zephyrbear]

Thanks for your report of your interesting meeting with the "doctor". Needless to say that it completely goes again the requirements in the Code of Conduct "Consent doctors and patients making decisions together". It is up to you what you do but if an "doctor" spoke to me like that I would be making a formal complaint about him. its outrageous and funny and appalling in equal measures. But totally unacceptable.

[holyshedballs in reply to holyshedballs]

Even PrescQIPP say "As with all switches, these should be tailored to the individual patient."prescqipp.info/component/jd...

It's interesting that he said that he is the Designated T3 Endo... I wonder what that means?

Has the CCG hired hitmen to deal with empowered patients?

[Zephyrbear in reply to holyshedballs]

Not necessarily the CCG, but he's certainly giving the impression that, in the absence of anyone else willing to take on this role, he has stepped up to the plate... He certainly did say that he was the doctor who now deals with all patients on T3.

[nightingale-56 in reply to Zephyrbear]

Hi Zephyrbear , I got the same interrogation last Thursday from my Endo, but told him I would not divulge sources. They really are trying aren't they. He tried to make it sound as though he was concerned that I was getting them from a safe place. I assured him I knew what I was doing and also doing better blood tests than NHS for this. He does do my FT3 though, but rather pointedly shows me this. He has started copying me into GP letters now,so hopefully things are changing for the better (?).

[humanbean]

Then he had another go at ThyroidUK for not publishing the alternative sources on their website and then asked me (as I was going out of the door) if I would let him have a list of private sources of T3 in a letter marked 'Private & Confidential' so nobody else would open it... I left with a cheery goodbye and '...of course I will...' adding under my breath 'when hell freezes over!'

He probably wanted it so that he could buy it then sell it on to his private patients at a few thousand percent profit.

[Zephyrbear in reply to humanbean]

Either that, or be instrumental in closing those avenues for us and getting a complimentary holiday for being so diligent...

[humanbean in reply to Zephyrbear]

Yes, it occurred to me that he might want to close them down.

[nightingale-56 in reply to humanbean]

humanbean , so cynical aren't we (with good reason).