UK: Document: MEDICALLY UNEXPLAINED SYMPTOMS (MUS) IN CHILDREN AND YOUNG PEOPLE, 2018

Andy

Andy

Retired committee member
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
Click to expand...

Who is this guide for?

The following guide provides advice and helpful tools, primarily to secondary care doctors in the assessment and management of children and young people CYP with MUS. The aim of the guide is to minimise the risk of recurrent presentation, iatrogenic harm and destruction of the therapeutic relationship.

When should I use this guide?

This document will be most helpful to those involved in the identification and management of CYP with MUS, particularly those working without expert advice. Regardless of service set up, seeking direct input from senior paediatric colleagues, and, if available, under 18s mental health clinicians, is always advisable over sole use of this guideline

How should I use this guide?

This guide is designed to be read in sequence, as it covers a number of steps in the identification and management of MUS. So we would prefer you to read and think about it page by page. However, it may be that you need to use this guide in less leisurely circumstances.

If you are just about to see someone who you think might have MUS, go to step 2

If you are following someone up who is under investigation for unexplained symptoms, go to step 3

If you have someone on the ward or in clinic who needs managing, consider whether step 4 has happened, and if so, go straight to step 5

If you are thinking about how to organise services around these CYP, step 7 might help you

This guide is written by clinicians, for clinicians, and is designed to be a useful practical aid. So let us know if you find it helpful, or, more importantly, if you don’t.
Click to expand...

Step 1: Opening your mind to the possibility of MUS

Just as some patients and their families may be more inclined to perceive bodily symptoms as indicative of some underlying physical disorder, so too may some doctors. Recognising that you are someone who is more comfortable having conversations based on the known, rather than unknown, recognising that you are a doctor who prefers to say yes, rather than to say no, or recognising that you are a doctor who likes to feel that you are “sorting your patient out”, may all be a prompt to make yourself consider MUS early on in your assessment process. Doctors managing their own anxiety, or that brought to them by their patients, by ordering another investigation or referring on to a specialist is a well-recognised phenomenon in the NHS.

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
Click to expand...
Document attached to this post.

Source: https://paedmhassoc.files.wordpress.com/2018/11/mus-guide-with-leaflet-nov-2018.pdf, which is a 'behind the scenes" link for this webpage, https://pmha-uk.org/

Internet archive link: https://web.archive.org/web/2019102...m/2018/11/mus-guide-with-leaflet-nov-2018.pdf
 

Attachments

I don't even know where to begin...

Points 2 and 3 below really take the cake: encouraging practitioners to make a clinical decision based on their personal emotions and feelings towards a patient.


Think about MUS if:

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’
Click to expand...
 
Step 6: managing your, as well as other staff members’, feelings about this type of work
Work with cases involving MUS can stir up strong feelings in those caring for the CYP, as well as those providing clinical care. Some physical healthcare staff can really struggle to accept that these unexplained medical symptoms are genuine and can inadvertently make CYP feel like frauds (especially as they lie in a hospital bed / attend an outpatient clinic alongside another CYP with diagnosed physical illness). Such feelings, even if unexpressed, can begin to feel frankly aggressive towards the CYP and their family.
Equally, some staff can experience overwhelming, and at times almost disabling, feelings of failure and inadequacy. Healthcare is often about making our patients ‘better’ and everyone struggles when this is not happening. If you can remind yourself and your colleagues that it’s precisely not about ’making’ the CYP better, but about sticking with them as their body/mind dis-ease eases and they start to lose their symptoms/learn how to adapt to them and progress nonetheless.
Whoever is acting as lead doctor on the case will have to hold the hope / positive outlook. If this is you, you will need to remind everyone, staff, as well as the CYP and family, that the mainstay of all your approaches is to show the body that we mean to slowly, slowly get back to ‘business as usual’ ie that you and the team will be encouraging the CYP’s body to function, as much as possible, and not necessarily all at once, within a daily schedule that is about as ordinary an existence as possible for someone of their age. This expectation needs to stay in place throughout recovery/into the chronic symptom management phase, and it can sometimes be one of the most difficult things that you will have to hold on to.
Click to expand...

Only skimmed some of this document cant manage the rest, but I thought this bit was interesting (especially the bit I've bolded), & one of the big reasons why its such a nightmare for ME/CFS to be subsumed under the MUS banner. It's the absolute worst thing for CYPwME but when drs are being advised to hang on to it even when it's hard...

Thinking of Karina & Gigi & countless others, it made me shudder reading it.
 
"when should you use this guide"? answer = if you have run out of toilet paper or need kindling for a fire . when will doctors ever stand up and call them out on this codswallop or do the lazy and stupid members of this profession just want this easy let of . as in I do not have to do any work or tests and there is no comeback .
 
It's awful.

And there's actually no benefit to the health system from all this victim-blaming, family-blaming, hand-wavy 'let's find the trauma in your life' stuff.

Here we've just been through a process of developing a Health Pathway document - it's an online resource that doctors access to help them diagnose and treat, with links to various resources that are useful, local contact details for referrals and so on. Perhaps controversially, the Health Pathway document relevant to us is titled 'Chronic Fatigue and CFS'.

It helps doctors through a diagnostic process for someone presenting with chronic fatigue. Some of the questions do cover psychological issues and there is a link off to the depression page, along with others to multiple sclerosis and so on, but it also covers how to assess PEM and orthostatic intolerance and the IOM diagnostic criteria. We've tried to ensure that a reasonable diagnostic effort is made - because that process of ruling stuff out does help a patient sit more happily with a diagnosis of ME/CFS or even just a 'sorry, I really don't know' conclusion.

If at the end of it, someone is assessed as having ME/CFS, then they are given supportive care and a referral to our patient support group for the kind of care that can't be provided in time slots of 15 minutes.

If someone doesn't have PEM or a diagnosable illness, the pathway doesn't suggest slapping them with a MUS label and probing for buried trauma. They still get the supportive care and, and this is where it took us a little while to get our heads around it, they may still be referred to our ME/CFS patient group.

Because actually the support we provide is quite useful to anyone coping with chronic fatiguing illnesses. Of course we have to be careful to provide nuanced advice about how to manage activity - but it should always boil down to the individual patient getting to know how their body reacts and doing what works best for them. The fact that people might come to us incorrectly diagnosed with ME/CFS (ie without PEM) means that it was never appropriate for us to be giving blanket directives to limit activity anyway.

The Health Pathway suggests annual followup for adults, after the diagnostic process has been sorted, and ongoing vigilance on the part of the doctor for alternative diagnoses and new illnesses.

Anyway, the outcome in terms of cost to the health system isn't so very different to that achieved by the MUS approach. In fact, our approach is probably cheaper because patients who have gone through a reasonable diagnostic process and are hearing about the current state of knowledge from well-informed patient groups will be less likely to doctor shop, and no money is wasted on ineffectual BPS interventions or making fabricated illness accusations. Furthermore, patients remain willing to engage with the health system, and so if the 'chronic fatigue' does turn out to be something treatable, or the person develops some unrelated condition, it is caught early.

Doctors following that process can feel ok, because they've done the best they can, not added insult to injury and have maintained a good relationship with their patient. It's true that the patient support groups are left doing a lot of the heavy lifting - but we see patient support groups looking after illnesses like multiple sclerosis doing much the same things. In health systems with very limited funds, that's just how it is.
 
Last edited:
In some ways a misdiagnosis of say ME/CFS as MUS may be less immediately damaging for us than for other conditions. Misdiagnosis of ME/CFS patients may worsen symptoms, for some significantly increasing their level of disability, may result in long term emotional/psychological issues and result in avoidance of medical services, but for most it will not be fatal.

However for other medical conditions it may be more likely to result in preventable deaths. For example classic descriptions of heart attacks are based on presentations of male patients, however woman experiencing heart attacks do not always follow this gender biased text book pattern, but display what the books mislabel as atypical symptoms. Consequently woman having heart attacks are less likely to be accurately diagnosed than men. This means some woman are at risk of being fed into an MUS system failing to recognise or appropriately treat potentially fatal heart conditions.

If we in the ME community are aware of the problems of this, why are other patient groups also not reacting in horror. How many preventable deaths will be required for the underlying hypotheses of MUS as an unevidenced pseudo psychiatric diagnosis is objectively evaluated?
 
Peter Trewhitt said:
However for other medical conditions it may be more likely to result in preventable deaths. For example classic descriptions of heart attacks are based on presentations of male patients, however woman experiencing heart attacks do not always follow this gender biased text book pattern, but display what the books mislabel as atypical symptoms. Consequently woman having heart attacks are less likely to be accurately diagnosed than men. This means some woman are at risk of being fed into an MUS system failing to recognise or appropriately treat potentially fatal heart conditions.

If we in the ME community are aware of the problems of this, why are other patient groups also not reacting in horror. How many preventable deaths will be required for the underlying hypotheses of MUS as an unevidenced pseudo psychiatric diagnosis is objectively evaluated?
Click to expand...
Sadly, it will probably take a clear pattern of this preventable increase in morbidity and mortality before enough patients and clinicians from outside the ME world will pay attention and demand action. :(
 
I couldn't bear to read much of this document, as the bits I read seemed focused on the doctor's feelings and validating the idea that it's normal for doctors to feel the 'heartsink' feelings when faced with a patient they can't diagnose. There seemed to be a lot of 'othering' of patients as inferior beings to doctors.

Why not tell doctors firmly that such attitudes are unworthy of doctors, and to take a positive approach of working with the patient, managing uncertainty professionally, and providing the sort of decent support they would give patients for whom there is a clear diagnosis.

Hutan, that system you have developed sounds great, provided the local support group includes people who actually have the training, skills and resources to provide the sort of support needed. When I tried my local support group some years ago they were worse than useless. They actually employed someone to help run the groups who was awful, from my point of view, and their current website is scientifically ignorant.

Edit to add: There is also the danger of local support groups being prey to quacks like LP, or egos like the Colin Barton Sussex group (have I got the name right). If doctors are going to rely on local support groups there should probably be a way of vetting them. In an illness like ME where there is no clear clinical pathway and no treatments, we are particularly vulnerable to quacks.
 
Last edited:
Trish said:
If doctors are going to rely on local support groups there should probably be a way of vetting them.
Click to expand...
Yes, a very good point. (My comments about patient organisations weren't actually necessary; it's just that we're just finishing the pathway so I'm thinking about it. Seems to me, national patient organisations should have a role in helping to ensure regional organisations are not quacky.)

But, even without referring to patient support groups, the thing is that adding in the 'MUS' concept adds nothing good to a process of diagnosis and support. Of course it doesn't make patients feel better, but it also doesn't save money, and it shouldn't make doctors feel better.
 
Whatever the people who produced this garbage are doing working in medicine is a real puzzle. Some people simply aren't cut out for the job. It happens, no need to make others suffer for it.

But it's the cluelessness that gets me. Mixed with misplaced confidence, it makes for a potent toxic brew. It must be made clear that there will be consequences once this implodes on itself. This won't be swept under the rug. Not this time.
 
unfortunately graveyards are full of people who are victims of medical ignorance and overconfidence . I don't have another 30 years to wait for them to wake up to this crass politically motivated stupidity when will these people ever be brought to task never mind face the consequences for their abysmal failures .
 
inclined to perceive bodily symptoms as indicative of some underlying physical disorder,
Click to expand...

Is that not what a doctor does, by definition? My wrist joint hurts so I must have been frightened by my father grabbing me when I was 2 years old, is that what we have come to?

It's the only thing that has made me feel better about fitting the definition for functional neurological disorder!
 
You must log in or register to reply here.
Back
Top Bottom