Trial By Error: My Letter to Professor Chew-Graham about the Cost of MUS

Kalliope · Jul 4, 2019

Moderator note: Moved from this thread:
Trial By Error: FOI Response from Bristol about LP Study; Correction in BJGP about MUS

I have e-mailed the following letter to Professor Carolyn Chew-Graham of Keele University, who has repeatedly mis-quoted a key data point about the cost of so-called MUS to the NHS:

Dear Professor Chew-Graham—

As you undoubtedly know, the British Journal of General Practice has now taken the responsible step of correcting a false statement in a 2017 editorial written by you and several co-authors. That false statement involved the reported cost of so-called "medically unexplained symptoms" to the National Health Service.
...

Trish · Jul 4, 2019

Kalliope said: ↑

I have e-mailed the following letter to Professor Carolyn Chew-Graham of Keele University, who has repeatedly mis-quoted a key data point about the cost of so-called MUS to the NHS:

Dear Professor Chew-Graham—
Click to expand...

Trial By Error: My Letter to Professor Chew-Graham about the Cost of MUS
Posted 1st July.

In multiple venues, Professor Carolyn Chew-Graham of Keele University has misstated the reported cost of so-called “medically unexplained symptoms” to the NHS. Professor Roger Jones, editor of the British Journal of General Practice, recently corrected such a misstatement in a 2017 editorial written by Professor Chew-Graham and several colleagues. (Thank you, Professor Jones!)

Now that this BJGP correction has been posted, I am urging Professor Chew-Graham to address the same mistake in one of her other articles. Some of her colleagues have made similar errors; I have cc’d a few of them. I do find it odd that those who present themselves as leaders in this field have had such difficulty in accurately citing a seminal study in their domain of purported expertise. Their apparent inability to understand basic statistical information does raise questions about whether anyone should listen to their policy recommendations.

Below is the letter I e-mailed Professor Chew-Graham earlier today.

Click to expand...

Trish · Jul 4, 2019

First discussed here in February:
Trial By Error: The Cost of MUS

Here, in May:
Trial By Error: My Letter about MUS to the British Journal of General Practice

Kalliope · Aug 15, 2019

ETA: It was first thought that Keele university had removed a blog post on MUS by prof. Carolyn Chew-Graham, but turns out the whole blog section is down.

Lucibee · Aug 15, 2019

Kalliope said: ↑

But apparently it was more convenient for Keele to remove this post, which contained the same false information, than correct it.
Click to expand...

The whole blog site has gone, not just the post.

Kalliope · Aug 15, 2019

Lucibee said: ↑

The whole blog site has gone, not just the post.
Click to expand...

Ah, so this could be about something else then?

Barry · Aug 15, 2019

Blog site seems to be partially archived.

https://web.archive.org/web/20190731024005/http://primarycarekeele.blogspot.com/

ETA:

The archived blog post:

https://web.archive.org/web/2019010...eele.blogspot.com/2017/02/mus-guidelines.html

There's a link to it at the bottom of the first link.

dave30th · Aug 15, 2019

Lucibee said: ↑

The whole blog site has gone, not just the post.
Click to expand...

Ah, that's interesting. I'll amend my post I guess.

Barry · Aug 15, 2019

Barry said: ↑

Blog site seems to be partially archived, though not that blog.

https://web.archive.org/web/20190731024005/http://primarycarekeele.blogspot.com/

ETA:

I think this might be it:

https://web.archive.org/web/2019010...eele.blogspot.com/2017/02/mus-guidelines.html

There's a link to it at the bottom of the first link.
Click to expand...

This comment was captured at the end of the 2nd link:

Anonymous22 March 2017 at 21:50
These MUS Commissioning Guidelines are deeply flawed and discriminate against women in particular. The references cited directly contradict what is written in the text. The Guidance claims that a risk factor is being female, but the references cited in the Guidance show that there isn't any significant gender predominance. Just as she does above, in the Guidance Professor Chew-Graham presents a wholly negative view of both MUS patients and of doctors' attitudes towards them, and she omits to include the more positive attitudes from the research cited. She also generalizes from her own non-generalizable study and the authors present a table of MUS rates in various outpatient specialties putting Gynaecology at the top of the table with a 66% rate when they should be aware that there was another very similar study that put gynaecology in the middle of the specialty table. It seems that the authors are intent on defaming women in relation to MUS when there is no evidence cited to support this. Oh, and I nearly forgot to mention....the Guidance includes patients with CFS/ME, even though this condition is classified as neurological by the WHO and not psychiatric.

Also, Professor Chew-Graham's statement above about the cost of MUS is wrongly worded and therefore misleading to all who read it. It implies that 10% of the total NHS expenditure is being spent on MUS patients in the working age population in England......what I believe she means to say is that 10% of the NHS funds that are spent on the working age population is actually spent on MUS.....which is clearly NOT the same thing at all. Indeed the phrase seems to be deliberately designed to mislead anyway......where else do we read about funding/costs being expressed as a percentage of the NHS expenditure of the working-age population rather than as a percentage of total NHS expenditure? But even that 10% figure is in serious doubt when you look at the paper from whence it came. What is not mentioned is that the authors of that paper (Bermingham et al) said that the figure of approx. £3 billion could be out by a much as 30% so the figure could in fact be 30% lower. Yet Professor Chew-Graham fixes the £3 billion in concrete by using the 10% of NHS expenditure phrase.....it all smacks of gross misrepresentation to me.

One might suppose that there could be a hidden agenda here. First brainwash doctors into believing that medically unexplained symptoms are the result of a psychiatric somatising condition.....they couldn't possibly be due/related to ADRs, misdiagnosis, testing error, admin error, Hickam's dictum, or not-yet-elucidated diseases now could they? I suspect it's far easier to get doctors and NHS commissioners to believe that MUS is the result of some neurosis rather than of a failure of current medicine if hapless women are shown to be the main culprits.....so defraud the reader by telling them that they are. Malign these female patients with a long string of negative comments about how dreadfully they impact on their saintly doctors, then dole out cheap CBT to them rather than sending them for the proper biomedical investigations and assessment that they deserve as paid-up members of society. Even label them with a special clinical code to make sure that these 'resource wasters' don't get investigated by any other doctors. NB This NHS Government strategy directly pits funding for physical healthcare against funding for psychiatry (IAPT- cheap CBT). (see NHS Transformation Call to Bid - IAPT).
And there you have it,the Government's efficiency savings served up on a plate......outpatient and diagnostic secondary care services decimated and at the expense of women's health in particular.
Click to expand...

Lidia · Aug 15, 2019

Who is the anonymous commenter I wonder? I would love to talk with her.

Barry · Aug 15, 2019

Lidia said: ↑

Who is the anonymous commenter I wonder? I would love to talk with her.
Click to expand...

I wonder.

chrisb · Aug 16, 2019

Chew-Graham has experience of working on NICE guidelines, and currently is a member of the NICE Clinical Guideline Development Group Depression (update) and is a Standing member of a NICE Quality Standards Advisory Group - work which directly impacts on commissioning decisions and patient care.

This appears on the Keele University biography for Chew-Graham. One presumes it is current information.
https://www.keele.ac.uk/pcsc/ourpeople/carolynchew-graham/

What does it say about NICE guidelines quality if members of its groups see no necessity to correct, or even acknowledge, mistakes? Mistakes can happen, but uncorrected mistakes should not.

Barry · Aug 16, 2019

chrisb said: ↑

What does it say about NICE guidelines quality if members of its groups see no necessity to correct, or even acknowledge, mistakes? Mistakes can happen, but uncorrected mistakes should not.
Click to expand...

That seems a very fair point to me. @dave30th, @Jonathan Edwards?

Esther12 · Nov 27, 2020

All these threads made it a bit confusing where to post this, but I just saw that Alan Carson was claiming around 30% for 'what percentage of all medical visits (not just neurology appts) are due to functional disorders?'

https://twitter.com/user/status/1331732233028136960

That seems high.

Invisible Woman · Nov 27, 2020

Carson -

Does depend a bit on definition
Click to expand...

I'm not sure if he's being honest here or having a laugh.

I love the way the word "definition" here sounds static and immutable instead of being the fluid and very slippery thing it becomes at the hands of BPSers.

Jonathan Edwards · Nov 27, 2020

Esther12 said: ↑

All these threads made it a bit confusing where to post this, but I just saw that Alan Carson was claiming around 30% for 'what percentage of all medical visits (not just neurology appts) are due to functional disorders?'

https://twitter.com/user/status/1331732233028136960

That seems high.
Click to expand...

It is pure delusion. Or perhaps an alternative fact. In rheumatology I would see maybe one or two people a year who did not seem likely to have structural problems.

Is there any reason to think that Dr Carson's opinion is of any interest - other than that he was a trainee of Michael Sharpe I suppose.

Esther12 · Nov 27, 2020

Jonathan Edwards said: ↑

It is pure delusion. Or perhaps an alternative fact. In rheumatology I would see maybe one or two people a year who did not seem likely to have structural problems.

Is there any reason to think that Dr Carson's opinion is of any interest - other than that he was a trainee of Michael Sharpe I suppose.
Click to expand...

Another influential figure helping train others and shape policy. Another sign that things are likely to get worse before they get better!

Sid · Mar 2, 2021

Esther12 said: ↑

All these threads made it a bit confusing where to post this, but I just saw that Alan Carson was claiming around 30% for 'what percentage of all medical visits (not just neurology appts) are due to functional disorders?'

https://twitter.com/user/status/1331732233028136960

That seems high.
Click to expand...

Pretty astonishing claim, for which there is no evidence. I have seen Stone et al mention the 30% figure in the context of new referrals to neurology clinics and how poor neurologists are swamped by these nonpatients.

These sorts of people seem more interested in blame apportioning, stigmatising and labelling patients in such a way that would make it unlikely for them to be able to access good medical care in the future than getting to the bottom of what’s causing unexplained symptoms.

cassava7 · Mar 2, 2021

Esther12 said: ↑

All these threads made it a bit confusing where to post this, but I just saw that Alan Carson was claiming around 30% for 'what percentage of all medical visits (not just neurology appts) are due to functional disorders?'

https://twitter.com/user/status/1331732233028136960

That seems high.
Click to expand...

Alan Carson has been known to exaggerate the prevalence of MUS by often referring to a paper by Nimnuan, Wessely and Hotopf (2001), which found that an enormous number of referrals to secondary care were due to MUS, but he has also repeatedly downplayed the rate of MUS misdiagnosis.

From the Opposing MEGA (OMEGA) group's blog post last year on the exaggeration of the prevalence of medically unexplained symptoms (bolding mine):

Context (Nimnuan et al. 2001):

This 2001 paper – https://www.sciencedirect.com/…/…/abs/pii/S0022399901002239… – by Nimnuan, Wessely and Hotopf has been used extensively as a key piece of propaganda for the UK’s MUS management project, but there’s been little mention or scrutiny of its ‘small print’, and that’s a crying shame. The paper documents a study on ‘MUS’ at outpatient clinics at 2 London hospitals and has been repeatedly cited to persuade doctors, other health professionals and NHS commissioners that ‘MUS’ is rife in secondary care (in 52% of new outpatient referrals overall) and so a great burden on doctors as well as a considerable drain on NHS resources. However, in many or perhaps most cases, readers haven’t been told that there were significant limitations to the study, including that the required sample size wasn’t reached and that the prevalence of MUS could have been exaggerated through patients not being followed up over a longer period of time.
Click to expand...

Parts on Alan Carson (bolding mine):

However, it looks as though some people may have known about both the limitations and the high misdiagnosis rates of the Nimnuan et al study but done little to highlight them or raise the alarm. Among them are Jon Stone, Alan Carson and Michael Sharpe who’ve cited the Nimnuan et al 2001 paper in their work but who also referenced the Nimnuan et al 2000 paper when discussing this study – https://jnnp.bmj.com/content/74/7/897 and therefore should have been well aware of the misdiagnosis rate of 21.1% for neurology displayed in its Table 4. (...) It’s indisputable though that Alan Carson knew about the high misdiagnosis rates. In his 2001 MD thesis – https://www.semanticscholar.org/…/c0dedce75b873f5f8e2744bc5… – he documented on page 179 that the Nimnuan et al study showed high misdiagnosis rates for both medically unexplained and medically explained symptoms and put this down to there being a higher proportion of lower-grade staff in this study than in other studies. Carson seems to have been working under or alongside Michael Sharpe in the University of Edinburgh’s Department of Psychiatry at the time he wrote it.
Click to expand...

Earlier in 2005, another Stone, Carson and Sharpe paper/article had been published – https://www.acnr.co.uk/acnr%20jan%20feb%202005.pdf – in which they’d cited Nimnuan et al 2001 as evidence for high MUS/’functional symptoms’ prevalence rates in neurology. They claimed that Slater had been wrong about misdiagnosis, and that the rate of misdiagnosing neurological patients with functional neurological disorders in more recent times had been ‘consistently’ below 10%. Don’t they know what ‘consistently’ means? It seems that these authors will reference the Nimnuan et al study when it suits them to evidence high MUS/functional disorder prevalence rates in neurology but will ignore its other findings when they’re discussing and reviewing misdiagnosis rates.

Their 2005 systematic review has been used to persuade and reassure doctors that they need not be overly concerned about the risk of misdiagnosis, and not only in neurology clinics but when labelling their patients with ‘MUS’ in any specialty. It was included as a reference in the RCPsych/RCGP’s 2011 “Guidance for health professionals on medically unexplained symptoms” – [available here on registering – https://www.scie-socialcareonline.org.uk/…/a11G00000017xGwI… ] – to evidence that 4% to 10% of ‘MUS’ patients have their symptoms re-diagnosed as an ‘organic’ condition. Readers weren’t told about the high misdiagnosis rates of the Nimnuan et al 2000 paper, even though the paper was cited in the same section as evidence of high MUS prevalence rates! The same low 4% to 10% MUS misdiagnosis figure was also included on page 7 of this 2018 Paediatric Mental Health Association (PMHA)/ RCPsych guidance on MUS for pediatricians and other doctors – https://paedmhassoc.files.wordpress.com/…/mus-guide-with-le… but the reference given was not the original review paper but the 2011 MUS guidance (discussed above) that had cited it. Paediatricians weren’t warned about the high misdiagnosis rates found in a key MUS study and weren’t advised to proceed to more complex investigations if basic investigations were negative.

Astonishingly, it seems that Stone, Carson, Warlow and Sharpe were concerned that their systematic review of misdiagnosis rates may not have been up to the mark years before those two guidance documents on MUS were published. In 2009 they reported on a newer study of misdiagnosis rates – https://academic.oup.com/brain/article/132/10/2878/333395 , advancing their lack of full confidence in their review’s conclusion as a reason for conducting the new study. (From the 2009 paper it looks as if they may have decided that their systematic review wasn’t good enough even before the review was published!) Do they know that their shaky review has been used since as evidence to persuade doctors that MUS misdiagnosis rates are quite low? If so, then don’t they have a duty as doctors to point out its shortcomings to the medical community? Perhaps they’ve done this somewhere, but the very next article in that 2009 journal was a paper by Wessely and others – https://academic.oup.com/brain/article/132/10/2889/328088 – in which the Stone et al 2005 review is referenced as evidence that ‘organic’ explanations can be ‘effectively’ ruled out. The paper opens with Nimnuan et al 2001 again being cited as evidence for high MUS prevalence rates (supposedly making up 30–60% of neurological referrals) but there’s no mention of that study’s 19% (or 21.1%) MUS misdiagnosis rate for neurology that, going by the Stone et al 2005 review paper, would be considered unacceptably high. What excuse is there for Wessely not mentioning those accompanying high MUS misdiagnosis rates?
Click to expand...

Log in or Sign up

Trial By Error: My Letter to Professor Chew-Graham about the Cost of MUS

Kalliope Senior Member (Voting Rights)

Trish Moderator Staff Member

Trish Moderator Staff Member

Kalliope Senior Member (Voting Rights)

Lucibee Senior Member (Voting Rights)

Kalliope Senior Member (Voting Rights)

Barry Senior Member (Voting Rights)

dave30th Senior Member (Voting Rights)

Barry Senior Member (Voting Rights)

Lidia Senior Member (Voting Rights)

Barry Senior Member (Voting Rights)

chrisb Senior Member (Voting Rights)

Barry Senior Member (Voting Rights)

Esther12 Senior Member (Voting Rights)

Invisible Woman Senior Member (Voting Rights)

Jonathan Edwards Senior Member (Voting Rights)

Esther12 Senior Member (Voting Rights)

Sid Senior Member (Voting Rights)

cassava7 Senior Member (Voting Rights)

Share This Page

Log in or Sign up

Trial By Error: My Letter to Professor Chew-Graham about the Cost of MUS

Kalliope Senior Member (Voting Rights)

Trish Moderator Staff Member

Trish Moderator Staff Member

Kalliope Senior Member (Voting Rights)

Lucibee Senior Member (Voting Rights)

Kalliope Senior Member (Voting Rights)

Barry Senior Member (Voting Rights)

dave30th Senior Member (Voting Rights)

Barry Senior Member (Voting Rights)

Lidia Senior Member (Voting Rights)

Barry Senior Member (Voting Rights)

chrisb Senior Member (Voting Rights)

Barry Senior Member (Voting Rights)

Esther12 Senior Member (Voting Rights)

Invisible Woman Senior Member (Voting Rights)

Jonathan Edwards Senior Member (Voting Rights)

Esther12 Senior Member (Voting Rights)

Sid Senior Member (Voting Rights)

cassava7 Senior Member (Voting Rights)

Share This Page

Useful Searches