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

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Valentijn said:
No doubt, but the public is a bit more reactive to having themselves or loved ones medically neglected and killed off by the government.
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Ah yes, but not when treatments are for the mentally ill. That's different .... Nobody seems to give a damn.

Eta which is why they are trying to push more patients into this category while wringing their hands and pretending that they aren't responsible for stigmatizing the mentally ill in the first p!ace.
 
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Jonathan Edwards said:
'The hospital MUS service will redirect patients from the emergency department, expedite discharges from medical and surgical wards, and offer effective interventions.'

This is a sick joke.
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I think it will lead to deaths as they encourage symptoms to be dismissed and ignored. We already have things slow diagnosis rates for cancer. There are well documented cases where patients have there symptoms ignored and dismissed only later for them to be found to be serious.
 
chrisb said:
I wonder whether the choice of name (New Savoy) is determined by the wish to imply a taste for a lavish, expense account lifestyle, (which might be shared with those commissioning services) or a Gilbert and Sullivan sense of humour.

Perhaps the second would be more appropriate for the depressed, unemployed.
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I'm pretty sure given their propensity to think of patients as lesser life forms and tendency t have secret insulting nicknames for patients (or not so secret in the case of muppets) that they are referring to a member of the brassica family
 
deleted my comment - it didn't add to the discussion - not cognitively up to it today

sorry @Wonko I saw you'd already 'liked' - unlike if you want :)
 
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Valentijn said:
On the positive side, this policy will fail quickly and spectacularly as soon as it kills a few people.
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I think you are too optimistic. The government introduced "fit to work" assessments that have found terminally ill and severely disabled people fit to work and taken away benefits. Thousands have died having been found fit to work. I haven't seen much in the way of outrage from the media. I know there has been some but it's like any news. If the government can survive it appearing in the news for a few days the media moves on and the deaths of sick and disabled people become yesterday's news.
 
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.
 
Arnie Pye said:
I would be curious about how many patients are aware of their right to refuse to do what the doctor says? There are so many people who still think doctors are always right and will do what they say, particularly if the options they are presented with are MUS clinic or nothing.
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I think this is often a consideration. However, in the past people have been sent to 'pain clinics' or 'CFS clinics' etc. In this case they would effectively be being sent to a 'we think there is nothing wrong with you and that you are just a feeble minded lazy dumb sort of person clinic'.

The people who think up these ideas are often good at politics when it comes to self-serving people like themselves. However, they quite often come unstuck when it comes to the politics of communicating with ordinary people. There have been all sorts of clever plans for expanding general practice to make things cheap but they have come up against the fact that nobody wants to be a GP expected to do everything any more - so GP is actually dwindling. They set up call centres and the result was that even more people went to casualty. Setting up 'dumb lazy people clinics' seems to me to be a loser.

I have this sort of picture of a Monty Python sketch with Eric Idle as the doctor and Michael Palin as the patient;
Doctor: Now let me explain, you are here because your symptoms are unexplained and so of no real importance.
Patient: But how can they be unexplained if you have just explained them to me?
Doctor: That is a typical response of dumb people who have unexplained symptoms, we find they are much more likely to ask stupid questions like that than people whose symptoms are explained. This is explained by their false beliefs.
Patient: But then they are explained...
Doctor: Look, you are here to learn how to think the way you are supposed to think. You have already scored six minus points and you will not be allowed out of here until you have ten plus points, so, as I have explained, you need to stop thinking your symptoms are explained and accept that we know best...
Patient..... (tells fibs and eventually makes it to the door, never to return)
 
Jonathan Edwards said:
However, in the past people have been sent to 'pain clinics' or 'CFS clinics' etc. In this case they would effectively be being sent to a 'we think there is nothing wrong with you and that you are just a feeble minded lazy dumb sort of person clinic'.
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Are you saying it's worked before, so it will work in the future? People diagnosed with MUS will go to these clinics? The psychotherapists, doctors and the government will be delighted. Think how much money they'll save.
 
Arnie Pye said:
Are you saying it's worked before, so it will work in the future? People diagnosed with MUS will go to these clinics? The psychotherapists, doctors and the government will be delighted. Think how much money they'll save.
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No I am saying that this time it will be barn door obvious to patients that they are being treated as idiots. If you have pain going to a pain clinic doesn't seem unreasonable. If you have ME/CFS then a CFS clinic sounds OK. But a 'nothing wrong with this one, mate, clinic' is not going to go down well.
 
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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Some patients will go because they're newly sick and have no clue what's going on yet.

Others will go, because their GPs threaten 'em with withdrawal of meds for other things if they don't go. Or threaten to drop them from their lists.

Physios and OTs happily work for the likes of ATOS, Capita and Maximus and lie about what actually happened in WCAs. So they will work there. Patients are just a nuisance to be tolerated if they want their pay cheque it seems.
 
Invisible Woman said:
Some patients will go because they're newly sick and have no clue what's going on yet.

Others will go, because their GPs threaten 'em with withdrawal of meds for other things if they don't go. Or threaten to drop them from their lists.

Physios and OTs happily work for the likes of ATOS, Capita and Maximus and lie about what actually happened in WCAs. So they will work there. Patients are just a nuisance to be tolerated if they want their pay cheque it seems.
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You may be right. Some will go and some staff will do the job. But I think people are getting wise to the way a socialised system is being replaced by the profit motive. And I see there being something a bit pathetic about having to admit you work in a clinic for people who have nothing wrong with them. I think this is new territory - to have it on the nameplate on the door.
 
Maybe we need an economist / public health expert to write about the insanity of leaving ME/CFS (essentially) unresearched.

Money seems to be the language that is understood by those making decisions.

The initial motivation to make an essentially psychogenic illness out of ME/CFS seems to have been strictly money. Now treating ME/CFS that way is the norm and people/careers/reputations are invested in this idea. It turns out that the real results are poor, and patients are not returning to their jobs, being rehabilitated, or are even capable of being more active as promised.

I'm very curious how strong the economic case for investing in proper research is. Let's say it takes x million dollars every year for y years to obtain z results. Someone knowledgable in this area could make realistic estimates. My suspicion is that NOT investing in research is economic insanity, and that kind of argument could get us allies in high places.
 
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strategist said:
I'm very curious how strong the economic case for investing in proper research is. Let's say it takes x million dollars every year for y years to obtain z results. Someone knowledgable in this area could make realistic estimates. My suspicion is that NOT investing in research is economic insanity, and that kind of argument could get us allies in high places.
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'Investing' is usually seen as putting money in to get more money out. There is unlikely to be any case for investing in ME research in for any individual or company wanting to make a profit.

The other meaning is in terms of investing human resources in terms of time and effort and getting increased benefit in terms of quality of life. That applies to a nation or other political community. Money does not apply here because the total value of money to a nation is zero. Money is just an indicator of who owes how much to who else.

I am sure it is insane not to research ME on this second basis but then it is equally insane to have no functioning health service in the UK and a seriously dysfunctional one in the US and so on. Nobody is terribly interested in 'investing' in this sense because nobody gets richer than anyone else.
 
Ian Lipkin also said it would take about 5 years to crack the illness. It would take a couple of years to test existing drugs.

The NAM report says:

The direct and indirect economic costs of ME/CFS to society have been estimated at $17 to $24 billion annually (Jason et al., 2008), $9.1 billion of which has been attributed to lost household and labor force productivity (Reynolds et al., 2004).
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$9.1 billion losses per year. Let's assume that some research advance could reduce that by only 10%, or $910 million per year. Now let's say that it takes $100 million per year for 10 years to get there. That's $1 billion. In less than two years after having made the hypothetical breakthrough, the investment in research would break even and start paying off from a purely economic point of view.

So yes it seems to be economic insanity to do essentially nothing.

PS: yes this is a very simplistic analysis. I eagerly await more realistic ones :D
 
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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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I think newly qualified psychology students will jump at the opportunity to work in one of these places especially with student loans to pay off. There's simply no need for them to employ OTs to run the clinics infact they will probably squeeze them out.

They will use the philosophy of spending millions to save billions therefore will be easily able to recruit idiot psychologists and/or NVQ type CBT practitioners at an attractive rate to them that would be less than paying qualified OTs or using real doctors to resource the patients effectively.

Secondly why would it be seen as a fail if people see through the clinics and don't use them? The whole point of such policy is to squeeze patients out of accessing services leave them medically unexplained and therefore with more difficulty obtaining state and private benefits.
 
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Jonathan Edwards said:
'Investing' is usually seen as putting money in to get more money out. There is unlikely to be any case for investing in ME research in for any individual or company wanting to make a profit.
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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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