Guidance for commissioners of services for people with medically unexplained symptoms - 2017

Valentijn said:
I think it would be more along the lines of investing money as a way to eventually spend less money. Going down the wrong path has a lot of costs: hiring the wrong researchers and clinicians, funding the wrong services and research, untreated patients needing benefits (which will get paid by one part of the government if not the other), and untreated patients not paying taxes.
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I won't get into a deep discussion about capitalism but by and large these arguments are I think bogus. An inefficient health care industry in the USA creates billions in taxes. It all goes round in circles.

Money is not an argument for governments because, as I said, the total money for a nation is zero. The only relevant argument for governments, as Plato pointed out, is that you only get elected if you cut taxes. So the incentive for governments is always to invest as little as possible in the common good.
 
I don’t believe the NHS would be so naive as to have clinics called Medically Unexplained Symptoms clinic. The MUS people have already done reaseach on what to call it bodily distress disorder, persistent physical symptoms etc they will find some meaningless but inoffensive name. I believe there is already a service in Cumbria working on MUS lines I will see if I can find links.

Edited to add

https://www.cumbriapartnership.nhs....services/persistent-physical-symptoms-service

There you go already up and running
 
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NelliePledge said:
I don’t believe the NHS would be so naive as to have clinics called Medically Unexplained Symptoms clinic.
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But that is pretty much what the description says:
What are Persistent Physical Symptoms?
We use the term persistent physical symptoms to describe conditions defined by ongoing symptoms rather than by underlying medical diseases.
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And it's unlikely anyone is going to be enthusiastic about the treatments on offer:
Our team provide a combination of physical and psychological interventions and includes clinical psychologists and practitioners, physiotherapists, CBT therapists, rehabilitation assistants and assistant psychologists.
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I think they're being rather naive to be so honest about their service. They're probably used to hanging out with their CBT buddies in an echo chamber and raving about how obvious and wonderful the BPS framework is :-P They've been in place for over a year, so I'd be curious to see how the numbers look regarding their performance.
 
Thanks for that link @NelliePledge .
I had a look. Here's what it says:
PERSISTENT PHYSICAL SYMPTOMS SERVICE
If you are a health professional, please take a look at our Information for Professionals page.

“I really appreciate someone asking about the whole experience of living with symptoms and how I am coping rather than just the physical impact. Why hasn’t this been available before?”

We are a rehabilitation service designed to support people in understanding and managing their symptoms, with the aim of improving both their day to day activities of daily living as well as improving their mood.

The people we support may experience chronic (or persistent) pain or they may have been given a diagnosis such as Fibromyalgia, Chronic Fatigue Syndrome/ ME, Functional Neurological Symptoms (including Non-Epileptic Attacks) or Medically Unexplained Symptoms.

Our team provide a combination of physical and psychological interventions and includes clinical psychologists and practitioners, physiotherapists, CBT therapists, rehabilitation assistants and assistant psychologists.

Please note that this service is not currently available in South Cumbria. However, we do run a similar service in the south specifically aimed at people with a diagnosis of CFS/ME. Our South CFS/ME Service information leaflet provides more information on this service.
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Mm well I thought the NHS wouldn’t be naive using MUS as a term with patients. Maybe they’re not actually labelling individual patients as MUS to their faces. On the other hand I think some people can just be so uncritical that they wouldn’t take offence. After all if that’s where your GP sends you you maybe think it must be ok and are just grateful that on the face of it you are being taken seriously. We all know the NHS “CFS/ME” clinics are pretty useless but when I was referred there there was a noticeable reaction in terms of my M.E. being taken seriously from my employer and my friends and family purely because I’d been referred to the hospital. Most of the people in my group were soaking up the NHS clinics approach. No reason why the same won’t be happening with MUS.
 
Rick Sanchez said:
If you live in the UK you have to fight this idiocy as much as you can. Once this sort of stuff sticks, like in Denmark or The Netherlands, it is incredibly hard to get rid off.
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You need to add Germany to that list.

Well, seems we might get a new Church - the Church of the Holy BPS Doctrine. Or maybe it is already established and now it broadens its influence. To flourish every seed needs to fall on good soil.
 
NelliePledge said:
We all know the NHS “CFS/ME” clinics are pretty useless but when I was referred there there was a noticeable reaction in terms of my M.E. being taken seriously from my employer and my friends and family purely because I’d been referred to the hospital. Most of the people in my group were soaking up the NHS clinics approach. No reason why the same won’t be happening with MUS.
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But if you asked employers and friends and family what ME/CFS was they would probably say 'not sure but I think it's what the call ME or Yuppie flu where people get really tired for ages - I don't think anybody really knows what it is but I guess for some people it is quite serious.' If you went o a 'medically unexplained symptoms' clinic and they were asked, what would they say? I suspect 'doesn't seem to make sense to me if they don;t even know what 's wrong - I heard someone whose mum is a GP say it's what they call people who have nothing wrong but think they are ill.'

I cannot see how MUS can survive as a medical term, when it will inevitably get talked about and given headlines in the Daily Mail sooner or later and everyone will know it means 'not really ill' because that is precisely what it is meant to mean. ME at least might mean there is something wrong. It is a bit like a bad forger setting up a bank and advertising to provide (badly) forged money at a very reasonable charge. Sooner or later people are going to start checking what the fivers look like.
 
NelliePledge said:
Mm well I thought the NHS wouldn’t be naive using MUS as a term with patients. Maybe they’re not actually labelling individual patients as MUS to their faces. On the other hand I think some people can just be so uncritical that they wouldn’t take offence.
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To be honest not only are some people so uncritical, they will actively seek it out.

I found you guys in the other forum after I was absolutely sickened by some exchanges I read on an ME Facebook site.

Somebody started off going on about how therapy was helping them (fair enough), they couldn't understand what all the fuss was about. ME was obviously psychological in origin. Oh there may have been a silly old virus some where along the line, but the real issue was psych. If only other patients would listen :rolleyes:.

The exchange then ventured into the childhood abuse/trauma stuff and various people then seemed to compete about just how traumatic their childhoods had been.

Some people actively seek out this kind of diagnosis and maybe for them it is correct.

It was impossible to counter these claims without seeming aggressive or to be picking on some traumatized individual so I left the site.
 
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Jonathan Edwards said:
But if you asked employers and friends and family what ME/CFS was they would probably say 'not sure but I think it's what the call ME or Yuppie flu where people get really tired for ages - I don't think anybody really knows what it is but I guess for some people it is quite serious.' If you went o a 'medically unexplained symptoms' clinic and they were asked, what would they say? I suspect 'doesn't seem to make sense to me if they don;t even know what 's wrong - I heard someone whose mum is a GP say it's what they call people who have nothing wrong but think they are ill.'

I cannot see how MUS can survive as a medical term, when it will inevitably get talked about and given headlines in the Daily Mail sooner or later and everyone will know it means 'not really ill' because that is precisely what it is meant to mean. ME at least might mean there is something wrong. It is a bit like a bad forger setting up a bank and advertising to provide (badly) forged money at a very reasonable charge. Sooner or later people are going to start checking what the fivers look like.
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But they’re not calling the clinics MUS - it is Persistent Physical Symptoms and it only mentioned MUS in the blurb on the website. So they are dodging round the PR issue
 
2 WHAT WOULD A GOOD COMMUNITY MUS SERVICE LOOK LIKE? All good MUS services, whether community or hospital-based, would have a philosophy of care based on the integration of physical and mental healthcare. They would recognise that MUS are ‘mind-body problems’, and that patients with MUS commonly have co-morbid physical and mental disorders.
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Notice how dualistic this is? Patients are accused of being mind-body dualists, but assuming medically unexplained disorders* should primarily be treated with psychological treatments and that medical investigations and treatments should be avoided shows you that it is the medical/psychiatric field that consistently reinforces the duality.

*if a disorder was found to be primarily due to mental factors then it is explained and not "medically unexplained".

5 Patients are often subjected to repeated diagnostic investigations, and unnecessary and costly referrals and interventions5 .
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This seems tautological. Unexplained means looking for explanations which means diagnostic investigations and referrals. To do otherwise will almost certainly cause harm when other issues are missed. Those with somewhat rare diseases including many less common autoimmune diseases frequently report how difficult it was to get a diagnosis. It is all to easy to say "medically unexplained" therefore we give up and will try CBT (which rarely has any objective or long term effect even on cognitions) as a last effort.

Notice how the outcomes are the usual PROMs that are fairly non-specific and have not been tested for patient relevance, acceptability and understandability in these specific groups of patients. Notice the total lack of objective outcomes beyond measuring health care utilisation and costs.
 
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large donner said:
Its also a bit laughable that they think people with "MUS" are taken seriously in hospital anyway to the extent that they would be bed blocking.

Surely the next stage must be to identify all of the "medically unexplained" on a national register and block them from leaving their house incase they attempt to attend a hospital or GPs.

Perhaps they could all be given ASBOs and ankle bracelets.
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That's maybe the point. Saves a lot of money. One of the largest budgets is the one for health care. A better profit marge is wanted. In the EU, health care is part of services economy.
 
strategist said:
I think we will eventually see an uprising by patients hurt by it,
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But we don't observe this with ME, and there are enough reasons to uprise; and wrt. doctors it would even be doable.

People tend to believe what they're told over and over again. If they are told "it's you, you just need to want", again and again - and that's happening - probability is high it will be believed. See how it goes with psychological doctrines, how people absorb it and reiterate it. See other topics where you can observe the same.

Catholic church fell because common people saw that even church folk died because of the plague, which could be used for an uprising. We would need something like that to overthrow psychological beliefs.

Looking at how things go politically (e.g. new laws) it seems that psychology will continue with their path.
 
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Jonathan Edwards said:
I cannot see how MUS can survive as a medical term, when it will inevitably get talked about and given headlines in the Daily Mail sooner or later and everyone will know it means 'not really ill' because that is precisely what it is meant to mean.
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When psychologists appeared on the stage (somewhere late 18th, 19th century maybe?), they talked about the "lunatics", "mentally ills". They realized some time later that this wasn't very liked - there were some rich "lunatics" - and they changed it to "psychologically ill". People understood that this meant he's a lunatic, lazy or a simulant. Over the time, it seems, people stopped knowing this. During this psychologists changed "psychological illness" to "psychological disorder" - because it sounds nicer; people accept it more easily. It is not so unrealistic to think they might make changes, again, in order to increase compliance. And today, nearly nobody believes that "psychological disorder" is another word for "simulant, lazy, crazy, weird, abnormal, non-conform".

That's why resistance gets up if you are called "psychologically ill". And doctors are educated to take patients seriously in order to introduce psycho stuff very carefully as to avoid resistance. The frog in the warm water...

But let's hope you'll be right!
 
Jonathan Edwards said:
I actually think this guidance will fall completely flat. No patients are going to want to be referred to a clinic for MUS. Moreover, no psychologists or OTs are going to want to work in a clinic for MUS. Visiting and working in an ME clinic at least gives some sort of sense of purpose.
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You would think so right, but it's not true.:confused:
In the Netherlands we have SOLK clinics. It means somatic unexplained bodily complaints. I don't know how full these clinics are and what kind of people go there, but there's lots of interest.

I actually think these centers are not that bad (if you have other complaints and they would change the name). You get psychological help, group therapy, rehabilitation, ergonomic therapy, probably all very nice when it would be a secondary service next to actually being helped....
 
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