MUS services in UK and other MUS related issues

https://tavistockandportman.nhs.uk/about-us/news/stories/congratulations-dr-rory-conn/

Congratulations to Dr. Rory Conn
7 August 2017

...Dr. Conn was a Specialist trainee in child and adolescent psychiatry over 4 years, completing a higher degree in Applied Systems Theory at the Tavistock. Rory also completed a Darzi fellowship in leadership and management, based at Great Ormond Street Hospital, and is now taking up a consultant post at the Royal Devon and Exeter hospital.

 

https://paedmhassoc.files.wordpress.com/2018/11/mus-guide-with-leaflet-nov-2018.pdf

MEDICALLY UNEXPLAINED SYMPTOMS (MUS) IN CHILDREN AND YOUNG PEOPLE A GUIDE to assessing and managing patients under the age of 18 who are referred to secondary care

This Guide is endorsed by the Royal College of Psychiatrists (RCPsych) and the Paediatric Mental Health Association (PMHA).

August 2018

Authors

Dr Lucy Blake. Junior psychiatrist. South London and Maudsley Foundation Trust.
Dr Virginia Davies Consultant in Paediatric Liaison, South London and Maudsley Foundation Trust. Vice chair of the UK Paediatric Liaison Network
Dr Rory Conn Consultant in Paediatric and Transitions Liaison Psychiatry, Royal Devon and Exeter Hospital
Dr Max Davie Consultant Paediatrician, Guy's & St Thomas' NHS Trust and Public Health lead at the Royal College of Paediatrics and Child Health

---------------

Some of the content of the Dr Rory Conn slide presentation comes from this paediatric MUS guideline.

 

This often feels like living in a parallel universe.
In light if Carol Monaghan' s parliamentary question she really needs to be made aware of this.

 

Page 4:

"For the purpose of this guide, the term MUS has been used to allow inclusion of all CYP who present with medical symptoms lasting three months or longer, where symptoms are causing a significant amount of distress, disability and help seeking. This includes:

1) CYP who require ongoing diagnostic work up for a possible underlying physical illness
2) CYP where an underlying physical cause has been sufficiently excluded but the symptoms persist and are causing significant disability
3) CYP who have a diagnosed physical illness in whom symptom levels are inconsistent with underlying pathology and / or who have additional unexplained physical symptoms in other body systems ​

For a more in-depth discussion about the various terms that are used to describe medically unexplained symptoms, please see Appendix 2."


Edited to add: Appendix 2 starts on page 31.

 

I am unable to confirm whether Carol Monaghan is aware of this paediatric guideline and the slide presentation or not. Perhaps someone who has contact with Carol might enquire. (Given the Countess of Mar's actions, in April 2018, into which Carol, other associates and members of Forward-ME had been CCd, I am not best placed to be engaging with the Vice-chair of Forward-ME.)

And yes, it does feel like living in a parallel universe.

 

This patient is clearly suffering from pervasive refusal, hot-stove-touching therapy is an evidence-based treatment and the demand for it is booming HOT, HOT, HOT!

 

https://paedmhassoc.files.wordpress.com/2018/11/mus-guide-with-leaflet-nov-2018.pdf
p5

"Think about MUS if:

1. Your patient has undergone an unusual level of investigations and/or been to a significant number of hospital specialists relative to their diagnosis (remember MUS can also occur in the context of organic pathology e.g. non-epileptic seizures alongside epilepsy)
2. You experience a high level of anxiety when seeing the patient and their family, and/or feel pressured into referring for investigations or to other specialists in a way that you don’t experience with other patients in a similar clinic setting

3. You feel irritated with the patient or their family for not ‘getting better’
4. There is a family history of MUS (drawing a quick three-generational family genogram and plotting all illnesses across the generations is never time wasted in any clinic setting)

5. There is significant absence from school as a result of symptoms that appear ‘out of proportion’ to physical investigations
6. You have an experience of a parent who appears overly-invested in their child’s illness and loss of function"

How can these supposedly intelligent people get it SO WRONG?

How dare they "feel irritated" if someone is "not getting better...."

 

It just goes to show that it is really all about the dysfunctional doctor/patient relationship. This may be why Wessely never again mentioned Pilowsky's Abnormal Illness Behaviour in the context of ME. It was destined to re-emerge as MUS.

 

I once had a pair of skis that I did not look after very well. When I finally took them in for service the man in the shop described them as a 'quick trip to hospital'.

That page quoted looks t me like a quick trip to the law courts. If I was acting as expert witness I would describe the person writing it as failing in duty of care and negligent with respect to anyone suffering as a result.

 

So if the doctor has a problem with his emotional life and tends to react inadequately to his/her shortcomings, the patient has a psychosomatic illness?!

 

It looks very much as if an alternative medical universe is springing up in which people who have no idea what they are doing or how to assess each other's work are building up a mantra based entirely on making things as they go along. It is terrifying. Maybe the psychotherapeutic side of psychiatry has always been like this but this is now intruding into general medical care.

Nobody within medicine proper may notice that this is going on because it circulates within the realms of general practice and psychiatry. For physicians who do not recognise MUS as a bona fide medical concept a set of guidelines for this non-existent state will be of no interest.

 

Doctors are so highly paid nowadays, one wonders what motivates them to go into medicine.Or is it heresy to suggest that. They do work hard but so do lots of people for far less money and in more trying circumstances.

 

It is about time I got on to doing that I think.
I will be addressing the UCL Department of Medicine about it in May.

A little birdie sent some encouraging news this week. The blowing open of the PACE fiasco has not gone unnoticed within the BPS world as a whole. I think there may be quite a few people in the MUS world who see that it could be checkmate in three for the current programme. The only thing is that like so much in politics at present it is far from clear exactly how things are going to unwind.

 

Yes, the whole thing needs blowing apart. There is not one iota of evidence behind any of this as far as I am aware. It will take time but MUS is such house of cards that I think it has to fall.

Maybe Jack of All Trades general practice as we know it will crumble in the same time frame, if only because nobody wants to be in that situation any more. UK general practice has survived until now because GPs thought they were self-employed independent practitioners. Almost none of them are now. They are skivvies with inadequate facilities, as opposed to skivvies in hospitals with facilities. They are just been paid to avoid or delay serious medical care to save money.

 

It is terrifying not just because there is no scientific basis to what they're doing but (excuse me if I cannot express this well) patients and carers are viewed as lacking insight by default. The patients and carers are people who are in a position to give feedback on how this is really working, and the BPS people have made deception, threats and use of force a normal part of their approach.

An example of deception is their use of language, for example the double meaning of functional disorder, or persistent physical symptoms, or the nonsensical definition of recovery in PACE and other trials, or functional neurological disorder. Examples of threats is the threat of sectioning or intervention by child protection services, and use of force is when that is carried out.

This whole approach needs to die. It is unbelievably dysfunctional.

 

Certainly within the UK the motivation for going in to medicine is not money. When I was a boy going in to medicine was considered one of the best things to do. Now very few young men go in to medicine if they can go in to finance. The majority of students are women and a high proportion are muslim women wanting to do something useful.

I am not quite sure what can be more trying circumstances than being responsible for the lives of large number of people during training years in hospitals without adequate resources - such that people die unnecessarily on your watch on a regular basis. It nearly sent my niece mad. She had to have a year out after being in charge of a regional hospital at night in her late twenties with no adequate backup.

I am wondering what the trying circumstances are for people in other jobs - worrying about not getting a pay rise maybe? Not clinching a deal that brings in the spondulicks?