Thursday, March 12, 2009

Department of Health response to CNHC letter


After a month of patiently waiting for a response from Ben Bradshaw to a letter I wrote regarding the Complementary and Natural Healthcare Council (OfQuack), I received a letter from Laurent Vaic, Correspondence Officer for Department of Health.

My original letter can be found here. After some pleasantries, the letter begins in earnest:

In your letter you ask about the efficacy of treatments. I should explain that the CNHC does not promote the efficacy of the therapies it represents. The question of whether or not they work is for those who choose to use the therapies to decide. Professional regulation, whether statutory or in this case, voluntary, is about protecting the public, not about the efficacy of the therapies involved. Registration will mean that a practitioner has met certain entry standards (for instance, has an accredited qualification) and subscribes to a set of professional standards. In this way, the public will have the reassurance that any registered practitioner they choose meets these criteria and that practitioners would be subject to fitness to practise procedures should they behave inappropriately.

In my letter, I asked "How can the CNHC provide protection without knowledge of efficacy?". DoH is stating that it is up to the customer to decide whether the treatment works, and separates 'protecting the public' from 'treatment efficacy'. Remember that the mission of the CNHC is to "support the use of complementary and natural healthcare as a uniquely positive, safe and effective experience." Effective, but with no interest in efficacy. Yes, I know, I had to read again as well.

Personally, I would consider 'protecting the public' to cover stopping quacks from teaching that a urine-press placed on the neck is a suitable treatment for thyroid cancer, but apparently that's fine, providing they don't touch you up at the same time.

The question I posed hasn't been answered. Back to the letter.
You also mention the minutes of a meeting of the Federal Regulatory Board of the CNHC held on 20 November 2008. Officials have contacted the CNHC following your letter to gain an understanding of the statement in the that meeting to which you refer.
And indeed, I can only refer to it, as those (assumed) same officials removed the link from the CNHC webpage specifically for ... em ... putting the minutes on. Furthermore, it is my understanding that the Board meets once a quarter, so we are missing two sets of minutes. A quick quote from the CNHC Missions and Values page:
At all times CNHC will...lead clearly and responsibly, inspiring trust through integrity, transparency and equity.
Transparency is important, but seemingly not in Quackville.
I understand from the CNHC that a board member suggested the possibility of using digital stories as a means of illustrating the positive side of complementary and alternative medicine (CAM) professional regulation. The suggestion was that such stories could utilise people who use CAMs and who recognise the value of regulation, as well as CAM practitioners. The board member concerned told the board that digital stories could be used as part of reflective practice and, as such, may have a place in ongoing professional development. It was suggested that board members might want to look at the website of Pilgrim Projects since this company specialises in 'humanising healthcare' and that Pilgrim Projects' Patient Voices programme contains a selection of the stories the company has made in a variety of contexts.

Unfortunately, I don't speak bureacratese very well, so a chunk of the above paragraph left me slightly bewildered. Reflective practice, anyone? Digital stories? Do people really speak like that?
I understand that the intention was to present this advice in the context described so that the board would gain a better insight into the kind of work that has been done and to ascertain whether they thought this form of 'storytelling' was appropriate for the CNHC to use at some time in the future. I further understand that these were preliminary discussions only and that no decisions were either asked for or made. Unfortunately, the minutes of the board meeting of 20 November 2008 were placed on the CNHC's website without having been approved by the board. The CNHC recognises that potential inaccurate representations of the debate could do considerable damage to the reputation of the CNHC's Board member and that of Patient Voices, neither of which was its intention.

Mistakes have been made, and so minutes will be edited in future to ensure this doesn't happen again.

The last part of the letter provides contact information for CNHC should I require further clarification of the minutes. Actually, the actual minutes would be a start, but as I said above, they have disappeared from the website.

No response on why the CNHC regards its mission as "to support the use of complementary and natural healthcare as a uniquely positive, safe and effective experience".

What happens if someone complains? From the CNHC's own document on Complaints, the CNHC complaint process is not designed to be punitive, with the maximum power of the Complaints procedure being that a practitioner can be removed from the register. Bear in mind it is a voluntary register.

I've already shown above that they are not great at keeping to their own standards. In addition, they have already had a legal chill from the British Standards Institute for hijacking the 'kitemark', which they have had to remove from the CNHC website. Alan H at Think Humanism has also demonstrated a personal data conflict on the CNHC site; from the CNHC site on 'Your Privacy', it states:
The Published Register
CNHC will make part of your register entry available to any enquirer as part of the published register.

The public can inspect the following information on the online register:

* Your full name
* Your profession or practice discipline
* Your approximate work location
* Your registration number
* Any restrictions imposed on your registration

Your home address, contact details, date of birth and other data are not available to the public.
(My bold)

Compare that to this page, which is a search of quacktitioners whose surname is Harmer (unfortunate name for a 'health' practitioner, but no matter):
Search by name

You searched for harmer

Suzanne Harmer
44 Moneybrannon Road, Aghadowey, County Londonderry BT51 4AA Northern Ireland, United Kingdom
Telephone: 07799 471235 Telephone: 07799 471235

Disciplines Massage Therapy Status Registered until 17/02/2010

I'm pretty sure this isn't the last of my OfQuack squawking, although it is tempting to forget about the whole thing as a waste of time, but I *really* begrudge tax-money being used to fund what appears to be a complete waste of energy with no obvious benefits to quacks or punters.
If anyone else can help interpret the letter (and suggest suitable responses - I'll be formulating over the next few days), please feel free to leave your thoughts and ideas below.

BPSDB

23 comments:

  1. As you say, Dr* T, the response from the DoH is ridiculous (but did you really expect anything else?!)

    It was me (Alan H) who informed the BSI about OfQuack's illegal use of their Kitemark(R) Registered Trade Mark as well!

    We know that OfQuack were set up with the 'support' of HRH's Foundation for Integrated health, but did you know that the domain name cnhc.org.uk is registered to one George Gray, Acting Chief Executive of the FIH? More at Think Humanism. Incestuous or what?

    OfQuack had this Suzanne Harmer in their register EIGHT times! It's taken them several weeks to spot their error and correct it.

    They now have 142 quacks registered. If they carry on at the same rate, they will have registered 768 by the end of the year, ever so slightly short of the 10,000 they state is their target!

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  2. What a strange response.

    the say that judging efficacy is up to the customer. How can the customer be expected to judge efficacy when all the marketing, testimonials and messages from sCAM practitioners says that reiki/homeopathy/accupuncture/voodoo is effective...? If OfQuack is leaving it up to the individual customer to ascertain safety, all we have is a rubber stamp that certifies that, er practitioner exists and probably isn't a serial killer.

    as for the digital stories - as I understand it this will be a series of customer satisfaction testimonials akin to the endorsements of cosmetics and other consumer products. sCAM users saying 'look, it worked for me, practitioner Y gave me pill X and my sore throat/back pain/lethargy went away!!1!!11one!eleven." Considering the blatant conflict of interest that zeno mentions (which by the way is a disgrace), is it a good idea for a supposedly regulatory body to carry (what will inevitably be positive) 'stories' on its website promoting the very practice it should be overseeing...?!

    If you are to respond, as I'm sure you will, be sure to press them on transparency as well as quite how they aim to regulate an industry they are part of.

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  3. Hmmmm. "The CNHC recognises that potential inaccurate representations of the debate could do considerable damage to the reputation of the CNHC's Board member"

    This aims to convey the idea that the 'inaccurate representations' are on the part of others - if this was the sense of the meeting, then the inaccurate representation was by CHNC itself in the minutes, because it unequivocally indicates that they were considering posting positive stories to Patient Voices. Unequivocally.
    It is also interesting that they hang one of their own Board members out to dry - 'Considerable damage to the reputation of the CHNC's Board member' (this is Jenny Gordon). However, it is the CHNC itself that is damaged, and they can't shuffle the shame onto one of their own. If the view expressed was flawed, the Chair should intervene at the time to indicate that it is not an appropriate comment, and not for minuting. And the Chair, in my experience, will always review even the unapproved Minutes before they are circulated to anyone, far less posted on the Internet. The Co-Chairs bear the responsibility, not just Jenny Gordon herself, and she would be right to feel aggrieved.
    'Reflective practice' is an educational term, based on the writing of Donald Schön, ((1983) The Reflective Practitioner. How professionals think in action, London: Temple Smith". Interestingly, there is a slight 'post-modern' tinge to Schön's work, but that's for another time. Basically, he describes 'Reflection-in-action' (you adapt what you are doing, especially when a new situation arises) and reflection-on-action (you think about it afterwards and change your practice). Use of stories might contribute to reflection, but, as I say, the Minutes unequivocally state something different.
    It is interesting that Bradshaw's OFFICE (distancing!) says "Professional regulation, whether statutory or in this case, voluntary, is about protecting the public, not about the efficacy of the therapies involved". This is quite untrue (deliberately?). The GMC states "In providing care you must: provide effective treatments based on the best available evidence" (source 'Good Medical Practice - Delivering Good Clinical Care - Para 3)in GMC documents "must" means that it is obligatory, as opposed to "should"). The Chair of the Nursing and Midwifery Council has also stated that nurses and midwives are required to demonstrate that their practices are effective in regulation. And let's just state CHNC mission again "CNHC's mission is to support the use of complementary and natural healthcare as a uniquely positive, safe and effective experience". This actually says nothing about regulation - but does about "uniquely effective".
    Finally, if it is about safe practice, why would the stories only reflect "the positive side of CAM"? the National Patient Safety Agency recommends the use of Critical Incident Recording to improve safety in the NHS - these include adverse events and near miss adverse events. This should surely apply to CAM as well. Reflecting on the negative side is a requirement for truly reflective practitioners.

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  4. digital stories = anecdote;
    storytelling = anecdote ('storytelling' was my Mum's euphemism for 'lying', but let's be generous);

    The DoH response is unbelievably naive.

    As for the dipslay of home addresses when they specifically say they won't do that, surely this must be a contravention of the Data Protection Act? From the Info Commissioner's website:

    "This short checklist will help you comply with the Data Protection Act. Being able to answer 'yes' to every question does not guarantee compliance, and you may need more advice in particular areas, but it should mean that you are heading in the right direction.

    ...
    * Do the people whose information I hold know that I've got it, and are they likely to understand what it will be used for?

    (Comment: I wonder if this includes making it public to the world?)

    * If I'm asked to pass on personal information, would the people about whom I hold information expect me to do this?

    (Comment: I wonder if this includes making it public to the world?)

    ...
    * Is access to personal information limited to those with a strict need to know?

    (Comment: I wonder if this includes making it public to the world?)

    * Have I trained my staff in their duties and responsibilities under the Data Protection Act, and are they putting them into practice?"

    ... and so on

    I suppose it may be one of those cases where the complaint may have to be made by one of the people whose data has been published in (my opinion) a careless way.

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  5. Reflective Practise is self assessment. Basically it should involve asking yourself things like, "What went well?", "Why did it go well?", "Can I do better?", "Why did it work?", "Did anytrhing go wrong?", "If I made a mistake how did I rectify the situation?", "How can I avoid making that mistake again?" etc

    As alties have no concept of what they do may have limits or can go wrong, then reflective parctise for them is usually non-existant. When they have confrences/workshops/seminars all they do is have a series of happy stories to confirm their beliefs and the possibility that things may go wrong is never touched upon.

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  6. Excellent points cgr!

    OfQuack's entry in the Data Controller Register doesn't say what information about quacks are to be made public. (I can't link to it directly, but search here and enter OfQuack's number Z1361970 into the Registration Number box.)

    Unless the quacks are a different privacy policy from what's on the Privacy page, then they have been lied to as to what information was to be made public.

    It looks to these non-expert eyes that they may not have broken the law this time, but they are sailing pretty close to the wind and it is at least a breach of trust (and perhaps contract). However, it's up to a registered quack to complain.

    BTW, has anyone ever seen a quack advertising the fact they're registered (I know there's not that many so far)? Have they quoted their registration number? Since it's not given in OfQuack's register, it's gonna be difficult to check it!

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  7. I also begrudge taxpayers money being spent on this sort of thing.

    I will make reference to the NAO guidelines on financial relationships with third sector organisations.

    http://www.nao.org.uk/our_work_by_sector/third_sector/better_funding.aspx

    Does the DoH funding of the CNHC pass the 3Es test? This is a very interesting question. Will the CNHC be effective within its very narrow remit.

    I've looked at some of the CNHC stuff and I'm concerned about the vetting. I see no mention of CRB checks. When I've worked with children, I've always had to have one. Whilst it may be the case that as part of their "professional" development, CAM practitioners undergo Child Protection awareness training, this is not the same.

    I know that when social services commision stuff from TOS involving children, they want CRB checks to be in place. I would have thought that the same applies to PCTs? If not, why?

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  8. More good points, warhelmet!

    OfQuack say their 'standards' include:

    "Have provided an independent reference of their good character
    Have declared that they do not hold a criminal record"

    Well, I'm sure they can all be trusted...

    It's not even OfQuack that judge the character: this seems to be delegated to some of the 'professional' bodies to do. No bias there, then. (I think I posted on the Quackometer about this, but Andy's site seems to be having problems at the moment, so I can't provide a link.)

    As well as a CRB check, they should also really have training in PoVA (Protection of Vulnerable Adults), or is that just getting into deep water?

    Mind you, many of them complained bitterly about the £15 registration fee and the £45 annual fee, even thought they would earn that from one customer session, so imagine the complaints if they had to pay for a CRB check!

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  9. I initially misread "DoH" in a Homer Simpson voice.

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  10. cgr, "story telling" and "digital stories" need not mean the same as 'anecdote', because they may be used as approaches to understand what the patient is telling you - not "this is a story and it's true" (or "false"!) but "why and how is this story being told?". For instance, one story might be told as a surrogate for another, and awareness of this might allow a doctor to ask a question which explores this. One of the best advocates of narrative approaches in medicine, particulary on listening to HOW the patient tells the story is Trisha Greenhalgh (See Greenhalgh T Hurwitz B. Narrative based medicine. Why study narrative? BMJ 1999;318:48-50) who is also the author of one of the very best books on evidence based medicine (Greenhalgh T How to read a paper, 1998, available free on line). This is not at all the same as using anecdotes as data on clinical effectiveness. I think understanding narratives helps in making medicine holistic, in the good sense of the word! But using only positive anecdotes, and using them as propaganda, as CHNC were planning, is a nonsense.

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  11. Here's another reminder of the petition asking for basic safety and efficacy requirements for OfQuack certification.

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  12. Ah! Found out where OfQuack allow somebody else to guarantee the good character of a quack. Read it here.

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  13. Jo, the approved abbreviation for the Department of Health is 'DH'. It used to be 'DoH' but this was changed (including moving the entire website from doh.gov.uk to dh.gov.uk and other expensive rebranding) in the 1990s specifically to stop people making Simpsons jokes.

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  14. Doh! I never knew that - I live and learn.

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  15. Ah, the plot thickens. I've been looking at the CRB website.

    One of the things that it talks about are registered/umbrella bodies. One of the things that such bodies should do is verify the identity of applicants. This the driving license/passport/birth certificate/utility bill type check.

    Given that the CNHC are allowing practitioners to register directly with them and having gone part way through the process (I wanted to register as a coprologist, with a mail order degree and a character reference from Gillian McKeith), dem checks ain't that good. If the CHNC are delegating things like CRB checks to bodies that represent individual practitioner groups, what is the point of the CNHC?

    I'm going to talk to someone in primary care on Monday. I'll see if I can get in touch with some in social services.

    I find it odd that CAM practitioners balk at the fees that CNHC charge. They are tax deductable. Really, it should be a drop in the ocean compared to professional fees. Oh, you don't pay professional fees?

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  16. warhelmet

    I think you're way wrong! I can't see anywhere where OfQuack say they do CRB checks - they just ask the quack to confirm they have no convictions and to provide a 'good character' reference.

    Now they most certainly should have CRB checks done on all of them, particularly considering the powerful position they are in with their customers, but this doesn't seem to be a requirement.

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  17. Zeno - no, no, no. I was making the point that the CNHC as an "umbrella" body aren't insisting on CRB checks. If they aren't, who is?

    I'm partically troubled by the activities of http://www.nhsta.org.uk/ - I see they have a document about commissioning CAM. I would like to see it. Pushing the onus onto PCTs to ensure that self-employed CAM practioners they commission from have had CRB checks is an administrative burden they can ill afford. Much as I disagree with public money being spent on CAM, if it is going to happen, there have to be better safeguards than what the CNHC or the current "professional" bodies provide.

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  18. Thanks everyone for all your insightful comments.

    I will be putting a response together (hopefully over the weekend) and I hope you all won't mind if I shnaffle your words :)

    I'll keep you updated of any responses.

    Still missing that second set of minutes.....

    T

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  19. This comment has been removed by a blog administrator.

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  20. What an interesting read, as a practising practitioner of many years, I have chosen to move away from "traditional" therapies and more towards evidence based and scientifically proven ones. So most of my training was somewhat historical and philisophical. However some therapies do work, and no one knows why, perhaps it is the pseudo effect, and if that works then fine, so long as people are aware of it. I have also set up a professional organization because I'm sick of all these other that are popping up everywhere promising the earth and not comming up with the goods, and missleading people. I would like to hear from anyone who would like to help my quest to evidence based and scientifically proven natural medicines to contact me at the british association of health and aesthetics in Glasgow cheers guys and don't hold back, all feed back is good.

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  21. How naive you lot are! Have you any idea how many deaths are attributed to 'properly registered highly qualified medics' in any one year? you'll be surprised. You ought to be getting on your high horses about those. Regulatory bodies were highly efficient in managing to prevent what might be the most prolific murderer ever in the UK (Shipman)weren't they? How many murderers are currently registered and working with extremely frail frightened patients right now in the NHS? mmm a few? How many misdiagnoses are carried out daily by your preferred highly regulated medics? At least i have a choice with the therapists in cnhc - something i don't have with my local nhs care - in reality. Also has it occurred to any of you knowledgeable critics that the therapies mostly offer excellent service (otherwise thousands wouldn't use them and spend quite large sums of money) and its the methodology of analysis that hasn't caught up, but hey that's more than enough reason to deny thousands a choice in your controlling world. or is it just your belief systems are correct and everyone else are gullible and stupid and its your duty to 'help' those poor unfortunates - your rants are just an exercise in arrogance.

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  22. Lesson in argument:

    The above comment is referred to as "whataboutery".

    I write "X", then Anonymous writes "X! I can't believe you're writing about X when Y exists". It usually is followed with childish ad hominems about arrogance etc.

    Y may indeed be true, but the article is about X and deals with the issues around X. Get over it.

    T

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  23. @ Anon Here here
    How many of these self congratulary back slappers (drugs company sponsors?)
    would consider
    > ultrasound (NEVER proved to have work on humans)
    > using a parachute (which has also never been subject to double blind studies to obviate the possibility that their effectiveness is only due to a placebo effect

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