King's Health Partners, "Medically Unexplained Symptoms A Practical Guide", March 2017

This was highlighted on @Tom Kindlon 's Facebook page.

Delightful presentation from just under a year ago from King's Health Partners (https://www.kingshealthpartners.org/), explaining how, among other conditions, CFS is a MUS (or Persistent Physical Symptoms condition, the term us patients prefer apparently) and therefore uses up NHS resources far too much. The solution? Basically CBT.
http://www.lambethccg.nhs.uk/Practice-Portal/resources/events-education-and-training/protected-learning-time/PublishingImages/Pages/default/3 MUS Lambeth PLT 09 03 17.pdf

Selected screenshots


I've not investigated the studies quoted here but the service seem to be claiming that they provide the same "benefits" that the studies claim, which might be possible but would certainly seem to be lacking any proof.

 

It is an organisation touting for work - that is what 'universities' do now. And it is very misleading. It is as bad as any quack scam for cancer or autism.

 

Out of curiosity, I looked up one study (Kroenke 2007). It's titled

Efficacy of treatment for somatoform disorders: a review of randomized controlled trials.
https://www.ncbi.nlm.nih.gov/pubmed/18040099

Which tells us the authors view unexplained physical symptoms as indicative of a mental disorder.

How good is the evidence? Looking at the reviewed studies, only the antidepressant studies have a placebo control group. The control intervention in CBT studies consist mostly of usual care, a consult letter to the primary care provider or wait list. The control groups are inadequate which means the effectiveness of CBT could be an illusion.

These "positive" results are then probably viewed as confirmation for the belief that unexplained physical symptoms are due to a mental disorder.

 

Even if CBT makes patients worry less about their chest pain or whatever the problem is, does this mean that a mental illness is being treated successfully? No, because it hasn't been established that the pain is due to a mental illness. It's merely assumed that it is (a kind of god of the gaps argument).

https://en.wikipedia.org/wiki/God_of_the_gaps

 

Isn’t this presentation a gift from the not-so-beneficent gods? Doesn’t it lay out bare for all to see the longstanding agenda and history regarding the Psych School’s beliefs about CFS and MUS/PPS, exemplified by the ‘Rebranding’ slide here? It exposes so much, so neatly summarizes everything that's wrong with the Psych School approach, and gives us SO much material. Our thanks must go to King’s, SLaM, Guy’s and St Thomas’, and all those at Denmark Hill who so kindly donated.

 

Three of the four partners of King’s Health Partners are NHS Trusts. Now remember what the Countess of Mar was told in reply to her question to Parliament about the JCPMH’s Guidance for Commissioners services for people with medically unexplained symptoms https://hansard.parliament.uk/Lords...74766C636C/HealthMedicallyUnexplainedSymptoms

“My Lords, the Joint Commissioning Panel for Mental Health is not a government body and implementation of the guidance that it published is not mandatory. Regarding the classification of chronic fatigue syndrome and myalgic encephalomyelitis, or CFS/ME, the Government accept the World Health Organization’s classification of the illness as a neurological condition of unknown origin.”

So any NHS organization, or an organization that is in part comprised of NHS trusts, should surely be following the Government’s view, ie the WHO’s classification, and not, in its teaching materials, be endorsing and advertising the views of a non-government body such as the JCPMH.

But in this presentation, on page 8 under the title of ‘The national picture’, and on page 9 under the title of ‘The challenge’, they appear to be doing exactly that.

 

Yes, but maybe worse because the label of Persistent Physical Symptoms is used to humour patients/mislead them that they are being taken seriously, and not cue them into the fact that they are being shunted to psych. I think the result will be a lot of angry people with persistent ME. Not being believed does a lot of harm, especially when it's disguised as being believed.


When I read this MUS/PPS stuff I really feel that this is an area where we could do with a strong coordinated response from supportive doctors like you plus/minus other health professionals. This is happening in the NHS, not in a random alternative health clinic. Are there any murmurings about objecting to these developments?

 

Under MUS - 5 KEY FACTS heading

It says that misdiagnosis rates are the same as for other neurological disordefs 4% at 5 years. Not entirely sure what they mean by that,but it sounds at odds with the 40+% currently found by CFS clinics.

This figure is attributed to Stone, Carson 2015.

Now I know Carson is an Edinburgh psychiatrist. I know someone who was a patient....not a very happy one at that.

Stone...is that Jon Stone whose name cropped up elsewhere recently...along with Chalder & Sharpe whinging to Nature?

 

The muppets guy from another thread? If so then it's a definite probable maybe.

 

Somebody, who quite likes maths, sent me this to post. If you like maths you may be interested, enjoy it even.

Let’s look more closely at page 11 entitled ‘Local data’. What is immediately obvious is that their claim that 20% - 40% of patients in primary care have MUS/PPS does not match the figures given at the bottom of the page, which we can use to calculate the following percentages for MUS (defined by them as patients attending 12 or more times in a year) in the four practices:

Practice 1: 2.22%

Practice 2: 1.45%

Practice 3: 0.83%

Practice 4: 0.81%


So where exactly do they get their ‘between 20 and 40% of patients’ from?


Well, it could be that the writer has been careless/stupid here, and what they actually meant was that 20 to 40% of patient consultations are related to PPS/MUS, rather than 20 to 40% of patients having PPS…..quite a different thing altogether. NB The Psych School appears to quite frequently get confused over this, so it’s little surprise that the author seems to have been confused here. I suspect they just asked somebody else and didn’t bother to do their own homework and check.

So let’s assume that they meant instead that 20% to 40% of patient consultations are related to MUS/PPS. You could see how a small percentage of patients who attend very frequently could quickly raise the consultation rate and then be accused of being resource wasters. Do their figures stack up for this scenario?

For fairness, let’s take the Practice with the highest percentage of patients – Practice 1 with 2.22%, (almost 3 times higher than in Practice 4). Let’s say that these patients attended say on average 15 times in a year, so for this practice these 289 patients attended 15 times in a year, that’s 289 x 15 appointments = 4,335 appointments. So according to their statement (and allowing for their potential stupidity) these patients would make up 20% or more of all appointments, so we would expect the total number of appointments for this practice to be at least 4,335 x 5 = 21,765, (for a practice with a total number of patients 13,038).

Using figures from this 2016 BMA document - https://tinyurl.com/ya8yutzn - we know that GPs average 115 appointments per week. So 21,765 appointments equates to 21,765/115 GP weeks = 189 GP weeks, or approximately the workload for 4 GPs. So that would infer that just 4 GPs look after 13,038 patients, a list size each of about 3,260 patients. But according to the same document the average list size for a GP is 1600, half as much. So it would appear that these pesky MUS/PPS patients in Practice 1 who perhaps average 15 consultations a year don’t actually make up 20% of the consultations at all but more like 10% max. And for Practice 2 – 1.45/2.22 of 10% = 6.5%, for Practice 3 – 0.83/2.22 of 10% = 3.73% , and Practice 4 – 0.81/2.22 x10% = 3.65%.

So it looks like 3.65% to 10% of GP consultations may be by frequent attenders who they would call MUS/PPS patients, instead of the 20% to 40% figure given in this presentation.

Nothing adds up with their figures and yet it is nonsense figures such as these that have been used to make estimations of the costs of MUS/PPS patients to the NHS and to then inform health policy. An example is this document https://tinyurl.com/y884dxyl ... from Barnet Clinical commissioning Group where their projected annual healthcare costs and potential savings are based on a prevalence rate of 19% MUS in primary care. I wonder where/who they got that prevalence figure from.

 

I agree. Countrygirl posted something in an alternative universe about a dissertation for a 'Doctorate in Clinical Psychology' which seemed me better defined as a Doctorate in Pissing Off Patients.

I have been rooting around in the undergrowth a bit recently and I fear that wherever I root I seem to find the same moronic hypocrisy. There are murmurings but the groundswell is still not in a good direction. But having questions asked at a Parliamentary Committee this week seems quite a good development. And I think the leaders of the groundswell are sweating a bit in places.

 

An anonymous advocate (actually the person who first alerted Social Media to the document which has started this thread) has sent me this to post regarding page 12 of the King’s Health Partners’ presentation.


PAGE 12 – The impact


On page 12 of this presentation we see several statements about the impact of PPS/MUS under the title- ‘The impact’.

The first statement infers that MUS patients hog healthcare services but it has no references to support it. As we have seen in #12 on this thread their figures on this don’t stand up to scrutiny.

The second statement that “Sufferers consume large amounts of health care and welfare benefits” comes with a reference to a 2007 Dirkzwager and Verhaak study, except when you go to this paper https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1894968/ you discover that it isn’t about consumption rates at all (consumption is only really mentioned in one sentence in the ‘Background’ section) but instead is a study looking at how MUPS patients view their predicament and their care. So the particular reference Husain has given here could be considered irrelevant to his statement. Also the prevalence of MUS in this study appears to be around 2.6% of patients, and the authors also quote a prevalence of about 2.5% of patients in primary care obtained from a different study. This is at wide variance from the 20 to 40% of patients that we are told about in Husain’s presentation.


(I couldn’t find the Deary reference for statement 3 on this page.)


Then there is statement 5 – “Around 50% of sufferers have co-morbid anxiety and depression” (Nimnuan et al., 2001). This is an interesting one. The only reference for Nimnuan I could find related to MUS for 2001 was this one - https://www.ncbi.nlm.nih.gov/pubmed/11448704 , a Wessely paper. Perhaps this is the wrong study, and I could only view the Abstract on this occasion, but rather than that supporting the statement that 50% of MUS sufferers have co-morbid anxiety and depression, the Abstract appears to infer that there wasn’t a clear relationship between the presence of MUS and psychiatric problems. But it’s good that Husain has brought our attention to this study because as studies go, it’s not great. In the comments section of the full paper (accessed on a previous occasion when the full paper was freely available) we learn that this study had an inadequate sample size due to a low response rate and that it was also possible that MUS rates could have been exaggerated due to the potential for over-diagnosis.


Finally Statement 7 – about high healthcare costs. This is a rather large subject that I will leave to another day. Suffice it to say, this claim is based on more Psych School propaganda where they have hyper-inflated health cost figures and misrepresented a flawed study to Government.

 

What always surprises me: Where comes "anxiety" from? How many people with ME have real problems with anxiety?

Edit: And by the way, no proofs for what they're saying about MUS, just claims presented as reality.

 

I've had two examples in my circle of acquaintances with chest pain, one was dismissed as "psychological" from the beginning and probably would have died if she hadn't insisted on a check-up; the second nearly ended up in the "psycho corner" after some checks came back normal, but since it became very bad he was re-checked and treated instantly (doctors said it was a miracle he still lived).

 

"Doctor Jon Stone, why don't you leave us alone? We feel so broke up, 'n' we're all stuck at home."

https://www.youtube.com/watch?v=nSAoEf1Ib58

Yes, that’s Jon Stone. Keith Geraghty’s been tweeting ( https://twitter.com/user/status/960450462980952065
) about one of his articles. I’m not sure if Geraghty’s yet commented on the fact that in this article - http://www.functionalmovementdisord...Stone-Bare-Essentials-Functional-Symptoms.pdf - Stone is advocating that doctors shouldn’t believe their patients’ physical histories, that if they for example are recorded as having asthma they may actually have a panic disorder, and that they may have had unnecessary hysterectomies and appendectomies because they may have conned the specialists to operate on healthy organs! Says a lot for the state of the medical profession. This particular example relates to point 5 here: https://www.s4me.info/attachments/screen-shot-2018-02-01-at-08-43-54-png.1620/


Here’s some more info from my anonymous advocate contact about that statement about the third ‘key fact’ on page 15 of the King’s Heath Partners presentation - “There is no greater risk of missing underlying organic pathology” , see http://www.lambethccg.nhs.uk/Practice-Portal/resources/events-education-and-training/protected-learning-time/PublishingImages/Pages/default/3 MUS Lambeth PLT 09 03 17.pdf …..and about the misdiagnosis rates and the accompanying Stone and Carson reference.

· First, the statement- “There is no greater risk of missing underlying organic pathology” - now that is quite a sweeping statement. Where is the evidence to back that up? You would hope that there would be lots of research into this, lots of evidence, because the dangers are SO great if they get it wrong. But no, they give just one reference.


· The reference they give is ‘Stone, Carson 2015’. The paper they are actually referring to is a 2005 study by these authors. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1273448/ A genuine mistake or a deliberate ploy to make the evidence look more recent and/or to make it harder to find?



· When you look at the Stone, Carson 2005 study what jumps out from the title ‘Systematic review of misdiagnosis of conversion symptoms and “hysteria”’ is that MUS isn’t mentioned here at all. Are ‘conversion symptoms and “hysteria”’ deemed to be exactly the same as MUS or representative of so-called MUS? Is this the same complaint they are looking at or something different? Can this really be used/extrapolated for MUS?


Well in his 2009 article http://www.functionalmovementdisord...Stone-Bare-Essentials-Functional-Symptoms.pdf , (thanks Keith!), Stone gives a definition of ‘conversion’ disorder and it seems to be very much limited to the neurology setting. Looking at their 2005 study this too seems to be based around neurology cohorts assessed by looking at different historical studies.


If they are going to make sweeping statements about there being no greater risk to patients from diagnosing them with MUS then they surely should ensure that they have good evidence to support this from all the specialties involved, not just from one of the nine specialties listed on page 6 of the King’s Health Partner’s presentation using just one sub-category of so-called ‘functional disorders’. This represents appalling negligence from both a medical and scientific perspective.


· I have checked what I assume to be the King’s Health Partners’ recommended reading – i.e the JCPMH Guidance document and the King’s Fund document entitled “Bringing together physical and mental health” - https://www.kingsfund.org.uk/sites/...Bringing-together-Kings-Fund-March-2016_1.pdf and I can’t see any mention in these documents about the risks to patients of misdiagnosis or any references cited to provide evidence that patients are at no greater risk. Presumably the authors don’t think that commissioners, government or medics need to concern themselves with this.


I did however reach for my trusty BMJ book entitled “ABC of Medically Unexplained Symptoms” (2013), written for GPs and nurses, to see what that had to say on the subject. It has a whole chapter on the risks of missing organic disease, although it is only 3 pages long. The authors seem to think that there IS a real risk of misdiagnosis, (which tends to be greater in primary care than in secondary care), and they, in effect, caution doctors to be careful. Interestingly, of the 7 further reading references at the end of the short chapter, 5 relate to cancer diagnosis.


· Getting back to the Stone and Carson 2005 study, to be fair they do acknowledge in their Discussion section that some/others may consider the 4% misdiagnosis rate to be too high, but the Psych School and King’s Health Partners don’t seem to be at all concerned with reducing misdiagnosed rates further, do they?


*****

If they had a brain they'd be dangerous

 

Hopefully uncomfortable places.

 

@Lilpink, I always value your advocates' analyses. Lots of thanks!