MUS, PPS services and IAPT integration into NHS primary care - what's happening across the UK?

[Dx Revision Watch]

Another Written Question from the Countess of Mar - this one on MUS

http://www.parliament.uk/business/p...nts/written-question/Lords/2017-03-20/HL6204/

Written question HL6204: The Countess of Mar 20-03-2017
Q
Asked by The Countess of Mar

Asked on: 20 March 2017

Department of Health

HL6204

To ask Her Majesty’s Government upon what scientific basis the Expert Reference Group for the Joint Commissioning Panel for Mental Health (JCPMH), in publishing their guide on Commissioning for Medically Unexplained Symptoms (MUS), based their decision that myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) should be categorised as a functional somatic disorder, given that the World Health Organisation’s mandatory International Classification of Diseases categorises the illness as neurological under ICD 10-G93.3, and that the National Institute for Health and Care Excellence (NICE) has not listed ME/CFS as a functional somatic disorder; and whether they will withdraw the recommendation for cognitive behaviour therapy and graded exercise to be commissioned for patients with ME/CFS until NICE Guideline CG53 is reviewed.

Edited to add document:

http://www.jcpmh.info/resource/guid...rvices-people-medically-unexplained-symptoms/

http://www.jcpmh.info/wp-content/uploads/jcpmh-mus-guide.pdf

Guidance for commissioners of services for people with medically unexplained symptoms

February 9, 2017

 

[Molly98]

So delicately put @Molly98 .

Am pondering whether to add that gem to the NHS survey. It does rather encapsulate my opinion.

Yes please do as another Devon patient I am sure they won't mind me adding my tuppence worth.

I am way beyond delicate, I think delicate and polite has been done to death when it comes to this nonsense, there is no reasoning with these people they treat us all with such utter contempt.

It's just horror story after horror story of ME patients abuse and medical needs not being met while they carry on as if they were they lived in Munchkinland another world away from reality.

 

[Molly98]

Must just share with you.........I have just completed a several page survey from NHS England seeking my opinion on the care I receive from the NHS for my conditions. They say it is to help the local NHS improve!

I have completed it.............problem is I have been truthful:

added quotes like (GP)...'we regard people with ME with more contempt than we do people with depression' (from GP who was outspoken as he feared he had the disease he didn't believe in himself and was fearful of the contempt he would endure )

................and in hospital...........'once the staff here know you have a diagnosis if ME you won't be treated 'kindly'...............'

Dare I send it?

Will I disappear one dark night?

It is ready for the post box.

Yes send it, but also copy in MP, Health minister, shadow Health minister, head of commissioning services in Devon, and PR if you feel able to, then if you do go missing in the night, we all know why.

Well apart from going missing in the night, what else have you got to loose, you gp and local practice are doing nothing to help or treat you and same with the local hospital, they can't withdraw help from someone they don't help anyway.

 

[Countrygirl]

Yes please do as another Devon patient I am sure they won't mind me adding my tuppence worth.

I am way beyond delicate, I think delicate and polite has been done to death when it comes to this nonsense, there is no reasoning with these people they treat us all with such utter contempt.

It's just horror story after horror story of ME patients abuse and medical needs not being met while they carry on as if they were they lived in Munchkinland another world away from reality.

Okay I will @Molly98 I will add some of what you have expressed as the views of another 'local' patient.

 

[Molly98]

Another Written Question from the Countess of Mar - this one on MUS

http://www.parliament.uk/business/p...nts/written-question/Lords/2017-03-20/HL6204/

Written question HL6204: The Countess of Mar 20-03-2017

Thank god for the Countess of Mar.
Whether they take any notice or just push ahead with their make believe labels is another thing.

I hope so.

What really appals me is that they can choose, yes choose as part of the medical establishment to have such a blatant disregard for medical and scientific research and advances. Such behaviour should see them out of a job.

 

[Countrygirl]

Okay I will @Molly98 I will add some of what you have expressed as the views of another 'local' patient.

I don't want to derail this thread, but if anyone else would like to add their tuppenny worth to the NHS survey I have been sent, please let me know. I could add comments to a separate page for them to read. Think on it.

It people would like to do that, I will start a separate thread for comments later.

 

[suseq]

@Molly98 agree totally with your comments on this nonsense.

 

[Molly98]

http://www.dailymail.co.uk/health/article-4332866/Why-doctors-t-dismiss-symptoms-mind.html


What @Molly98 said above.





Read more: http://www.dailymail.co.uk/health/a...rs-t-dismiss-symptoms-mind.html#ixzz4bxlMj8ub
Follow us: @MailOnline on Twitter | DailyMail on Facebook

"Not only do these problems, known as functional disorders, cause misery, but they cost the NHS a fortune".

Typical Daily mail stance; society is made up of the deserving and undeserving. There are deserving sick patients; for example those with cancer and heart disease or stroke patients, and then there are the undeserving, those who are sick but since has not got to the bottom of what is causing their ill health.

Regardless of the fact that they are classifying ME as a functional disorder which is clearly wrong, all these patients that have been unfortunate enough to be lumped together under this label are human beings deserving and worthy of medical care, treatment and empathy as much as anyone else in exactly the same way that Patients with mental health illnesses are also equally deserving.

It seems that we have a new hierarchy of patient within the NHS and UK society:

1. those who are considered to have a 'real' physical health diagnosis.

2. Those who are considered to have a 'real' mental health diagnosis.

3. The lowest of the low, the untouchables of the medical world those who are now considered to have a 'functional' 'somatic' condition who are lumped into the MUS category and are a burden and drain on our beloved NHS. ( along with immigrants and asylum seekers in the eyes of the Daily Mail).

Can you imagine them writing about cancer and stroke patients:

"Not only do these conditions cause misery but they cost the NHS a fortune"

God how to make those with so call functional disorders feel a whole lot worse, guilty , ashamed and more of a burden than they already are made to feel.

At what stage does that "fortune" become seen as too much of a burden for the "hard working tax payer to bare" and humanity begins to go down a very dark path once again. Or is it already happening.

 

[Dx Revision Watch]

https://twitter.com/i/web/status/844210195584770048

 

[Janet Dafoe]

Good to see Janet, @Rose49 , commenting on what she thinks of this article. Additionally, I found you can up or down vote comments with out signing in.

Here's my comment:
There is abundant evidence that Chronic Fatigue Syndrome has a physiological basis. It is not a functional disorder. This new diagnosis is just a intellectualized label for people with diseases that science hasn't figured out yet. It is insulting to patients and utterly useless. These people should read the scientific literature. They should be ashamed of themselves. They are causing further harm. It is ridiculous and a step backwards! Janet Dafoe, PhD

Read more: http://www.dailymail.co.uk/health/a...rs-t-dismiss-symptoms-mind.html#ixzz4cE67UDhs
Follow us: @MailOnline on Twitter | DailyMail on Facebook

 

[dangermouse]

Here's my comment:
There is abundant evidence that Chronic Fatigue Syndrome has a physiological basis. It is not a functional disorder. This new diagnosis is just a intellectualized label for people with diseases that science hasn't figured out yet. It is insulting to patients and utterly useless. These people should read the scientific literature. They should be ashamed of themselves. They are causing further harm. It is ridiculous and a step backwards! Janet Dafoe, PhD

Read more: http://www.dailymail.co.uk/health/a...rs-t-dismiss-symptoms-mind.html#ixzz4cE67UDhs
Follow us: @MailOnline on Twitter | DailyMail on Facebook

Very well said and thank you for doing that.

 

[Countrygirl]

http://www.rcpsych.ac.uk/healthadvi...rentscarers/medicallyunexplainedsymptoms.aspx


Here is a MUS leaflet aimed at children. This appears to be describing Crawley's interpretation of ME below. More abuse on the way then sanctioned by the NHS.

Perhaps it is time we had a concentrated and well-targeted system of raising complaints about the damaging abuse people are suffering, especially children and their families.

(I heard just now about a young paralysed ME child who to be forced to walk and exercised this week. This chills me to the core and reminds me of the case of Euan Proctor who was thrown into a swimming to prove he could save himself. Of course, he couldn't and sank.)

Medically unexplained physical symptoms (MUPS) are when someone suffers from physical symptoms for which no underlying physical cause can be found.

About one in 10 children and adolescents suffer from this condition. Common symptoms are headaches, stomach aches, joint pains and tiredness. Less commonly, young people can have significant unexplained physical symptoms, including muscle weakness, collapses, ‘fit-like’ episodes, and severe and chronic pain.

What are the causes?

Physical illness or injury may be a factor at the beginning, but when no obvious physical explanation can be found, emotional or psychological factors need to be thought about.

These problems are more common in children and young people who:

• are feeling stressed, for instance about moving schools, friendship problems or not managing school work
• are very sensitive to physical symptoms and pain
• are very sensitive to others
• have low self-esteem
• tend to be fussy or perfectionistic
• are very anxious and worry more than most
• worry continuously about the symptoms and their effects on everyday activities – this can cause the symptoms to continue, and even get worse.

Unexplained physical symptoms may also be part of another psychiatric condition, such as depression or anxiety. There may also be a family history of unexplained physical symptoms.

For most children and young people, with appropriate reassurance, the symptoms are short-lived. However, for some, everyday life can become very uncomfortable and stressful . Unexplained physical symptoms can also be very worrying for parents.

The symptoms may result in young people:

• missing a lot of school; they may not achieve what they should socially and academically;
• seeing less of their friends – this means fewer interests, hobbies and fun;
• becoming anxious and depressed;
• being less independent than other young people their age.

Where can help?

A planned approach

Your GP will be able to assess your child and help decide if any specialist investigation or treatment is required. If necessary, they will refer your child to the local paediatrician or child and adolescent mental health service (CAMHS),

Specialists, such as psychiatrists, can help identify the psychological factors that may be contributing to the symptoms, and can also help to distinguish unexplained physical symptoms from other mental health problems, such as depression.

Talking treatments can help you and your child to manage unexplained physical symptoms better. Medication can also play a part, particularly in treating any anxiety and depression that they may also be suffering from.

Treatment is best done with active participation from the family. It will involve:

• finding ways of paying less attention to the symptoms
• a small, but steady, increase in everyday and social activities
• the young person will be encouraged to do more for themselves and to regain their confidence and independence
• asking teachers to help with looking at ways of overcoming any school or education problems.

Family or individual counselling may be helpful if focused on issues such as how to:

• respond to pain and other symptoms more effectively
• increase levels of physical and social activity
• manage depression, anxiety, lack of confidence and poor motivation
• deal with family relationship difficulties when these become part of the problem.

 

[Countrygirl]

http://www.rcpsych.ac.uk/pdf/CHECKED MUS Guidance_A4_4pp_6.pdf

A document giving guidelines to doctors on how to deal with MUS patients.

 

[Countrygirl]

http://www.rcpsych.ac.uk/healthadvice/problemsdisorders/medicallyunexplainedsymptoms.aspx


Here is a leaflet from the Royal Colleges of Psychs that is asking for your feedback on MUS. Too good an opportunity to miss!

 

[Invisible Woman]

http://www.rcpsych.ac.uk/pdf/CHECKED MUS Guidance_A4_4pp_6.pdf

A document giving guidelines to doctors on how to deal with MUS patients.

Sorry - I just couldn't finish it. This jumped out at me:
“Our remedies oft in ourselves do lie. All’s well that ends well, William Shakespeare ”

To borrow @Molly98 's well turned phrase: JUST F*** OFF!

 

[Invisible Woman]

Again to quote @Molly98
"At what stage does that "fortune" become seen as too much of a burden for the "hard working tax payer to bare" and humanity begins to go down a very dark path once again. Or is it already happening"

What I "love" about these ass****s is the fact they ignore that while treating may cost the NHS money, not treating and stifling all research actually costs the taxpayer more in the long run.

But as long as they keep themselves in work that's ok. You'll have noticed of course that they have to create jobs for themselves by making up diseases because it appears they are too useless to actually treat patients with real illnesses.

 

[RogerBlack]

http://www.rcpsych.ac.uk/healthadvice/problemsdisorders/medicallyunexplainedsymptoms.aspx


Here is a leaflet from the Royal Colleges of Psychs that is asking for your feedback on MUS. Too good an opportunity to miss!

The submission did not in fact work, and hit an error page. Pasting here for when I retry.

" Usually a physical cause can be found - but sometimes it can't an't, even when blood tests and x-rays or scans have been done.


Symptoms like this are common. They can be called “medically unexplained symptoms”, because they are not due to a physical illness in the body. However, they can be explained, but to do this, we need to think about causes that are not just physical."

This is inaccurate.
It assumes that no disease can exist when tests have been done and found nothing. There are many diseases now that were undiagnosable in the past. For example, MS, autism and ulcers were all frequently assigned to stress or upbringing at one point.
https://www.ncbi.nlm.nih.gov/pubmed/27149919 - Narcolepsy - diagnostic delay 9 years. https://www.ncbi.nlm.nih.gov/pubmed/27638835 Chrons - 5 years. https://www.ncbi.nlm.nih.gov/pubmed/27571562 Acromegaly 8 years. https://www.ncbi.nlm.nih.gov/pubmed/25139307 Celiac - 32%) out of 825 participants reported a diagnostic delay of >10 years.http://www.eurordis.org/IMG/pdf/voice_12000_patients/EURORDISCARE_FULLBOOKr.pdf - a survey of patients with rare diseases.
"It also displays the delays in diagnosis reported by survey participants as a function of the type of misdiagnos is th ey received. Patients who initially received a false psychological or psychiatric diagnosis experienced longer delays in diagnosis , suggesting that this type of diagnosis introduced yet an even greater barrier for patients before the quest for correct diagnosis could be resumed"
A 'diagnosis' of MUS, where there is an underlying physical condition undetected stigmatises the patient, makes detection of the condition less likely.

The Guidelines MUST emphasise that symptoms can be due to undetected physical illnesses, some treatable.
It is not unreasonable to help patients deal with untreatable or undiagnosed illnesses. Extreme care must be taken not to assume someone with a cryptic presentation of a known disease or an disease with no readily available biomarker has symptoms for which there are no physical basis.
In some cases, treating the symptoms with standard therapies can be actively harmful to patients in addition to misdiagnosis.
http://journals.sagepub.com/doi/pdf/10.1177/1359105317697323

 

[TiredSam]

To borrow @Molly98 's well turned phrase: JUST F*** OFF!

I didn't realise that was one of @Molly98 's - I've been using it for years. I must owe her a fortune in royalty payments.

 

[arewenearlythereyet]

Sorry - I just couldn't finish it. This jumped out at me:
“Our remedies oft in ourselves do lie. All’s well that ends well, William Shakespeare ”

To borrow @Molly98 's well turned phrase: JUST F*** OFF!

This made me laugh out loud (can't bring myself to use lol sorry)....thank you for the humour .....this is so depressing without it

 

[Chrisb]

All’s well that ends well, William Shakespeare

Presumably he died before writing "All's ill that ends ill".

I the quote below from the above post of @Countrygirl and will try to ignore the "MUPS are when", as I have clear memories of a class of 11 year olds being admonished for such usage.

"Medically unexplained physical symptoms (MUPS) are when someone suffers from physical symptoms for which no underlying physical cause can be found.
About one in 10 children and adolescents suffer from this condition. Common symptoms are headaches, stomach aches, joint pains and tiredness."

What is this supposed to mean? Surely 10 in 10 children and adolescents suffer such symptoms at some time in their lives. No indication is given that "at any particular time " is intended.