The Nottingham Tool Kit: how the UK is selling ME patients down the river with £200 million for MUS

[Large Donner]

im surprised it takes 4 months of training....surely it doesn't take that long to train the nurses to tick a box on a form to say, to revisit your GP.

It probably takes four months of training to brainwash the facilitators once they have prescreened them to whittle them down to the the most compliment ones who have no critical mind of their own.

That's what Derren Brown does when he needs to prove how easy it is to find a group of people to control. The less questioning and critically aware the deliverers are the more they will ignore any negative feedback from the patients.

 

[Countrygirl]

@Countrygirl
One presumes the newspaper editor was seeing doctors for incurable problems with his spine.

Actually, no, @Chrisb. He was born without one.

 

[Deepwater]

Not going to lie. This has really thrown me. The amounts of money here are just staggering.

Struggling to believe they are still getting away with. What does it take to stop them and hold them to account?

This is what real insanity looks like. And it is genuinely terrifying.

Anybody still doubt the power of propaganda and bald-faced lies?

It strikes me that we UK patients need to band together to do something. Our charities are failing us.
Anyone any ideas? What is the area where this rubbish is being trialled?

 

[SamanthaJ]

It strikes me that we UK patients need to band together to do something. Our charities are failing us.
Anyone any ideas? What is the area where this rubbish is being trialled?

The thing that occurs to me is that this affects people beyond ME/FM/IBS patient groups. Lots of people have 'medically unexplained symptoms' until those symptoms are, well, explained, and there's an obvious risk of doctors being conditioned to see MUS when they should suspect cancer or MS or something. I wonder what cancer charities, and their supporters, would make of this, when they put so much effort into raising awareness of symptoms and campaigning for faster diagnosis.

ETA: This angle wouldn't necessarily stop ME patients from being shunted off into the MUS wilderness, but it could generate some unwelcome (to them) publicity for these kinds of programmes.

 

[Hip]

Of course nobody want to see £200 million wasted over a 3 year period on useless CBT and GET therapies for ME/CFS, especially when there is a desperate shortage of funding for biomedical research on ME/CFS.

However, there is probably nothing new here, as presumably the NHS has for many years been spending this sort of money on CBT/GET treatment for ME/CFS.

Nevertheless, even though this has been going on for years, I would love to see some patient advocacy trying to get the NHS to find a more productive way of spending that money.

 

[veganmua]

Can anyone TL: DR the mass of text at the beginning for the brain fogged among us?

 

[Esther12]

If we debunk this stuff, can we get a million each?

 

[Countrygirl]

"SamanthaJ, post: 840060, member: 27787"]@Countrygirl, I don't understand the vindictiveness - if they think we're mentally ill, wouldn't we still deserve compassion and respect? Wish I had something helpful or constructive to say - maybe someone else has ideas? Well done for getting through it without exploding.

I think this is easily explained, according to my experience.

It may seem irrational, but doctors view mentally ill patients (who probably have an as yet undiscovered biological illness) with disdain, so they aren't going to treat us with respect.

I have related this story on here before, but I received a call from a local GP who was quite distressed as he had come to believe that the illness that was forcing him to leave his job at a near-by surgery was in fact the very condition he had never believed in: ME.

He told me that he was very worried about his future and wanted to know more about the illness. I offered to send him information but he said he was too scared to give me his personal details as he greatly feared that his colleagues might discover the nature of his illness. He needed to keep the nature of his illness secret.

He said, (direct quote') :

'They ( local GPs) regard people with ME with even more contempt than they do people with depression'

He dreaded, he said, being viewed by his colleagues with the same disbelief and scorn as they regarded the patients who were mentally ill or had ME.

I had to give him all the information I could to help him on the phone.

So, given how they regard the mentally ill, it is not surprising they have such 'contempt' for us.

Interesting story about the newspaper editor - do you think Fleet Street editors have been threatened with the same thing? Would explain a lot...

We have discussed this some time ago on another thread, I think.

Newspapers have to keep 'on message'. ME was/is under a D notice. I think the D stands for 'discretionary' if I recall correctly. Subjects which are regarded as politically sensitive are awarded this label and it means, I believe, that before an editor publishes a story they are supposed/advised to contact a body like the Science Media Centre for the official and accepted version of the topic. It would be sanctioned to publish the photo of either a very obese, smiling, individual sunning herself in the garden( associating lazy, healthy and fat with ME) or an immaculately dressed, busy executive yawning beside her laptop to represent the story of 'Chronic Fatigue' but not a photo of a very sick perhaps emaciated person prostrate in bed behind drawn curtains. The information the general public are fed is very controlled.

 

[Countrygirl]

Can anyone TLR the mass of text at the beginning for the brain fogged among us?

Hi @veganmua

I am so sorry to give you brain ache. I too can't read blocks of text, but I had to post it in a rush and hoped people would read from the link.

However, I have done your bidding!

 

[Snow Leopard]

A clinical and economic evaluation of a psychosocial approach to chronic fatigue syndrome using general nurses and development of a cognitive behaviour therapy approach has changed general practice and enhanced the patient experience for those with MUS.

Changed how? I mean that trial had a null result!?!

Also, this is from 2014, so what ended up happening if anything?

 

[lilpink]

BLOOD PRESSURE WARNING (especially Countrygirl :-S) -

For a better look at the Nottingham Tool go to http://oxleas.nhs.uk/site-media/cms-downloads/GPmaster2_-_Complex.Patients.pdf


(Approximately 2/3rds down)

Factors used (via this computer app) to identify patients who are LIKELY (!) to have MUS -

Age, Chronic fatigue, Life stress, Long term illness, Negative ESR, Anti-depressants


For severe MUS patients factors are - Age, Anti-depressants, Dryness, Obesity, Sleep problems, Negative ESR, Life stress, Asthma

.........Dryness?????????

(and does anybody know what the Z is about? weightings for each of those particular factors? )


And then "What [treatment] works". Note - "keeping the patient in primary care" - to save loads of money.

 

[moosie]

Well I am back!
.

So sorry you were treated so badly. Unforgivable.

 

[Sean]

and enhanced the patient experience

Novel use of the word 'enhanced'.

 

[Countrygirl]

"lilpink, post: 840237, member: 3063"]BLOOD PRESSURE WARNING (especially Countrygirl :-S) -

For a better look at the Nottingham Tool go to http://oxleas.nhs.uk/site-media/cms-downloads/GPmaster2_-_Complex.Patients.pdf


(Approximately 2/3rds down)

Factors used (via this computer app) to identify patients who are LIKELY (!) to have MUS -

Age, Chronic fatigue, Life stress, Long term illness, Negative ESR, Anti-depressants


For severe MUS patients factors are - Age, Anti-depressants, Dryness, Obesity, Sleep problems, Negative ESR, Life stress, Asthma

.........Dryness?????????

This raised my eyebrow too, @lilpink.

Sooo.....does this mean if we are incontinent, we can't have a MUS?

...............................or..................if we take to the bottle.........(bit tricky with ME) ...........and swig our way into oblivion..... will we be exempt from being thrown under the bus by the medical profession......................hang it all...............we are already under the wretched bus.

Okay, so do we declare ourselves to be incontinent old soaks then?

Anything to be spared more abuse by the medical profession.

 

[lilpink]

Sooo.....does this mean if we are incontinent, we can't have a MUS?

Surely it MUSt?

 

[TiredSam]

For severe MUS patients factors are - Age, Anti-depressants, Dryness, Obesity, Sleep problems, Negative ESR, Life stress, Asthma

.........Dryness?????????

I have been told I can be rather dry. Thank goodness I don't live in the UK.

 

[lilpink]

"...“many people were suffering very severe and complex difficulties” with their medicines.

However, she said most doctors put them down to Medically Unexplained Symptoms (MUS) which account to up to a fifth of all GP consultations in the UK."

http://www.express.co.uk/news/uk/79...pport-Scotland-campaign-patient-mental-health

As someone who has only EVER been depressed as a result of being given psyche drugs I'm sure many with the spurious dx of 'MUS' would fall into this category. There is a mention too of 'polypharmacy' .. I've ticked that box too. After all adverse effects can't possibly be drug related can they... they have to be an indication of a worsening health issue which requires either more drugs, or now, with the wizardry of 'MUS': diagnostic re-purposing.

 

[Chrisb]

I imagined that I had a basic grasp of the English language, but clearly not. Can anyone help explain the following?

"In particular, co-morbid psychological problems in patients with MUS are common and counterproductive to medical symptoms."

I have no idea what "counterproductive to medical symptoms" could possibly be intended to mean.

There appears to be a huge fallacy at the heart of the document. It starts out by saying that co-morbid psychological problems are common and then gradually goes on to assume that all patients suffer from psychological problems, and will respond to treatments aimed at addressing psychological problems.

"Reattribution refers to an intensive structured consultation delivered by a GP, which aims to provide a psychological explanation to patients with somatised mental disorder."

I, for one, would have found it helpful if it had been explained how we all came to be considered to have a "somatised mental disorder".

 

[slysaint]

It starts out by saying that co-morbid psychological problems are common and then gradually goes on to assume that all patients suffer from psychological problems, and will respond to treatments aimed at addressing psychological problems

"
Psychosomatic means mind (psyche) and body (soma). A psychosomatic disorder is a disease which involves both mind and body. Some physical diseases are thought to be particularly prone to be made worse by mental factors such as stress and anxiety. Your current mental state can affect how bad a physical disease is at any given time.

Which diseases are psychosomatic?
To an extent, most diseases are psychosomatic - involving both mind and body.

• There is a mental aspect to every physical disease. How we react to disease and how we cope with disease vary greatly from person to person. For example, the rash of psoriasis may not bother some people very much. However, the rash covering the same parts of the body in someone else may make them feel depressed and more ill.
• There can be physical effects from mental illness. For example, with some mental illnesses you may not eat, or take care of yourself, very well which can cause physical problems.

However, the term psychosomatic disorder is mainly used to mean ... "a physical disease that is thought to be caused, or made worse, by mental factors"."

It will make a GPs job a lot easier if they can just put everything down as MUS and prescribe CBT. If it is currently around 20% of GPs consultations it will probably increase dramatically once the roll-out is complete.

So we won't need as many GPs (just as well as they're in short supply anyway); all they will need to do is quickly train up a load of 'Health Professionals' (bit like as for Atos, Maximus, Capita) who can fill out questionnaires.

Job done.............

 

[Countrygirl]

For severe MUS patients factors are - Age, Anti-depressants, Dryness, Obesity, Sleep problems, Negative ESR, Life stress, Asthma

.........Dryness?????????

This raised my eyebrow too, @lilpink.

Sooo.....does this mean if we are incontinent, we can't have a MUS?

...............................or..................if we take to the bottle.........(bit tricky with ME) ...........and swig our way into oblivion..... will we be exempt from being thrown under the bus by the medical profession......................hang it all...............we are already under the wretched bus.

Okay, so do we declare ourselves to be incontinent old soaks then?

Anything to be spared more abuse by the medical profession.

It has been pointed out to me that the term 'Dryness' in a medical context usually refers to 'vaginal dryness'.:thumbdown:

Sorry chaps! I am unclear what your equivalent is.

Should we start a new thread on this? Perhaps with a poll.