Editorial: Mind the gap: integrating physical and mental healthcare for children with functional symptoms 2019 Heyman

The size of the problem?
Functional symptom disorders—often termed ‘medically unexplained symptoms’—are being increasingly recognised as a major source of distress, confusion and—not least—cost. The 2016 Kings Fund report—‘Bringing Together Physical and Mental Health’—estimated that the National Health Service in England spends about 3 billion pounds per year on this group of conditions in adults and children.

Though published studies have revealed the importance of recognising and treating functional symptoms in adults, the literature in children is sparse. Raper and colleagues in this issue add significantly to our knowledge by reporting on a 20-year experience, in their centre, of children with functional neurological disorder (FND).1 FND, also known as conversion disorder, refers to a spectrum of neurological symptoms which have no established neurological cause and are assumed psychological in origin. Adult patients with FND are reported to have disappointing rates of recovery, but this long-term follow-up study highlights the emerging optimism for outcomes in children. Less than a quarter of those followed long term appeared to experience persistent severe functional symptoms in adult life.

Notably and unusually the reporting hospital has been accurately diagnosing and coding functional neurological symptoms reliably and routinely over the last 20 years. Precise recording and communication of the diagnosis of these patients seems to have become embedded in the culture of the setting for this study and is likely to be key to recovery. For progress to be made, this practice needs to be widely adopted nationally and internationally. The positive endorsement of a FND diagnosis …

Paywall, https://adc.bmj.com/content/104/12/1127

 

So to purportedly remove their perceived gap, they create a new gap which, for the children with a missed biomedical condition that fall through into the FND gap, might be even harder to escape.

 

It's quite a short article, and essentially boils down to getting mental health services involved earlier so psychological packages of care can be introduced sooner. I think the framing is a bit weird, seeming to imply that folks should be diagnosed with one of these FNDs in order to bring about that care, even if the recommendation ends up being sensical (ie - when patients are undergoing a host of investigations and don't yet know what's causing their issues, psychological support is probably a good idea)

What I'd be worried about is the labelling of those who'd naturally recover with something that may bias future treatments, or that by getting that diagnosis other investigations stop. If you rolled it out to other areas where implementation would likely be very different than in a dedicated children's hospital, I think there's a lot of risk that comes from such an approach. That said, I think Trish has nailed it - it seems to be a reflection on how things are working for them, but it's not a research study.

Notably, cites Sharpe in their final paragraph, as someone who aspires to have mental healthcare be as good as physical, and delivered in all parts of care services.

 

Very unusual indeed. They simply assert that it's accurate and reliable, something that cannot be validated and is based entirely on judgment, assumptions (something they even admit to), and absence of evidence along with several other logical fallacies. Oh, and basically violating every principle taught in statistics 101. That is not something that serious professionals do not usually do. Or ever do.

 

This is a 2019 editorial, but no mention of the definitive rule-in signs.

 

Just an advert for their own benefit as far as I can see.
A bit like people giving each other prizes at the summer sailing club regatta.

 

Neglected to cross-reference that this editorial is quoted in glowing terms as part of the Royal College of Paediatrics and Child Health's 'Perplexing Presentations (PP)/Fabricated or Induced Illness (FII) in children' guideline

 

It means recognising that almost every patient with a chronic health problem can be helped to optimise well-being and functioning with good communication and understanding of the impact of symptoms.

I know your knee hurts Annabelle. Because I have a high level of professional understanding.

But, do you know that’s what’s stopping you going out to play?

You’re not optimising are you young lady?

No. You’re not.

It’s good to optimise isn’t it sweetie, huh?

Yes? It is, isn’t it!

Well you pop over there and have a chat with old man Michael, he’s gonna motivate you, so you can get yourself out into that playground okay?

Okay. Off you go now.

Pen click.

Okay, Mum, because Annabelle is still only five, in order for Michael to do his magic, I’m gonna just need you to support him in his work?

Okay, great.

You just need to sign this paper, agreeing that your daughter has a mental health problem that is causing her knee pain and that we are all going to proceed from here on in, by telling her to just ignore it and crack on, right?

What’s that?

Oh no. Of course not. No. Not in the old fashioned judgmental way. No this is a brave new medical….well not medical per se, but yes as a medically trained professional I am very excited to be involved, in this way of telling the child to stop being such a little cry baby and to, go live her best life.

What was that?


No. No it’s not regressive. No not at all!

Oh you’re making me feel old. But seriously never did us any harm did it?

I myself had a knee pain once, in those days there wasn’t anything mental health help wise available. I just got back on the ruby pitch. Look at me now haha!

Seems archaic?

No, I jest. Not like that now, nice psychiatrists and psychologists to help us do this the right way!

Okay?

Risks?

Very low risk. Consensus here is it maybe zero. After all, all patients need supportive care, wouldn’t you agree?

Huh?

Well yes the small print is always a little intimidating isn’t it?

True. People with diagnosed mental illness do sometimes have a very small extra risk in terms of Drs ignoring their physical symptoms and letting them die younger. But that was probably due to stigma, we’re very much aware of this now and medicine is in a different place. But we’re getting a bit ahead of ourselves here aren’t we? We wouldn’t want to catastrophize, would we?


If she does well on the new treatment plan nothing to worry about. We will be vigilant too of course.

Vigilant?

Watchful.

For what?

Signs she’s not thriving.

Like what?

Pain?

No, not pain. Pain is subjective.

Could point to a medical issue, something else?

Well from a layperson perspective maybe. But not from where we’re coming from as professionals.

You wonder about her future?

That she won’t be able to get health insurance when she grows up. Well…
I think we’re being distracted here by issues outside the scope of this conversation. Best to keep our focus on the individual, your child and her healthcare needs.

Pardon?

Well no, it’s true she doesn’t require medical care, more supportive care.

You maintain anxiety that she might in the future need healthcare insurance thanks to the constriction and privatisation of the NHS, and that she would likely be penalised or excluded from coverage due to this diagnosis that we have given her of imaginary but very real to her pain via her warped young mind?

Well now we’re in political territory. That’s not for me a medical doctor to comment on.
I have to say though it does feel like we’re in danger of catastrophic thinking here!

Have you thought of seeking some support for yourself, it’s very distressing caring for a sick child. Your worries may make it more difficult for her to move past her own fears and limitations around this?

No?


No, I’m not a trained psychologist that’s true, but I think is incorrect to refer to me as out of my depth. I have many year of experience working in this delicate area.

As as such if you’re having difficulties. I am in a position to enquire about getting you some support with your own caring responsibilities. If you feel like supporting your child’s treatment as recommended by us, is going to be a struggle?

No?

That’s great. We tend to get the be best outcomes when mum and dad are able to be active participants in the process.

Just so you know though the option for supports for you both is always something we can revisit at anytime….

 

My issue is whether it is actually mental health care (or what Sharps actually ‘delivers’ in his big ‘all illnesses have a bit of the mental’ proposed actual care).

I’ll be straightforward in that medicine and how most deliver healthcare is shockingly harmful to mental health and not using psychology to replace the lack of natural empathy missing due to ‘the system’ and sadly too many individuals (for whatever reason including by the sound of it that vital skill being ‘trained out’ under the misnomer it’s ‘female bring soft snd kind’ and not ‘skills like Oliver Sacks to be able to have insight into how things will affect other humans’).

An example is that instead of thinking ‘gosh the last thing this person needs is a huge wait for results to find out how far they’d cancer has spread’ and that will cause unnecessary mental injury along with other inconsiderate treatment by abrupt unthinking people (which can happen) and so it needs to be built in to sort these issues with the staff and system as it will save these injuries and cost long-term due to them , they instead think ‘the impact is mental’ (rather than expected, logical and caused by our collective treatment and problems that can be resolved) so ‘outsource, label’ and want to train the patient to ‘deal with what they do and how they want to work’ and think how they want them to behave - NOT what is actually healthiest for their health or happiness or getting past all of it without a scar if it’s from bad treatment. Just a facade in surveys of questions not directly relevant and a tick box to cover their back if they fray nerves unnecessarily ‘It’s ok cos we sent them off to a tick box course no one asks the details of’

I don’t see him discussing proper psychologists rather than psychiatrists, liaising on sorting their environment, situation and making adjustments so it’s less frightening and a kinder situation thereby reducing impact on all (is it not a canary in the coal mine if your service terrifies 90% who go through it, just like you’d want to look at timetables or bullying if a school year had high number ms of kids with anxiety, not ‘teaching the kids mindfulness whilst keeping the exam-culture or rubbish bullying policy untouched). eg for those with autism or who are away from home for the first time and it’s very distant or other things.

Or Sharpe/them talking about counselling for support and accurate but supportive way of explaining things and making them feel I control if they’re i or a body despite the situations thryvd been thrust into perhaps feeling different from that.

Instead it’s normally a nonsense generic ‘CBT’ can now be what I call fake CBT that wasn’t the type developed by carefully studying the illness, mapping different types, and a model saying there us an underlying thing patients agree with us the core and that technique happening to have been developed around it. But a twisting of that term where an off the shelf delivery mode has been part-nicked from those real CBTs because it’s nice and one-way and short and happens to be a lot like the old school teachers behavioural paradigm and behaviourists idea of just tell em to stop behaving in a way you don’t approve as the behaviours the issue not something which is of interest as it’s the symptom to allow you u to I get to the bottom of the condition if you are interested enough to hear insight into it.

but ‘reeducation’ (they are even now calling it almost that: ‘psychoeducation’ ) and I find it so weird that old, proper psychologists who’ve been trained, and who were told to check and think that both logic and testing and history/feedback/progress at an individual level there is a match between diagnosis and person and a chosen specific treatment, allow/have allowed this nonsense stuff to be using these very same terms when it isn’t mental ‘health’ at all but concealing a lot if ambiguous ‘other stuff’ without that matching process and developed with an attitude of the stigmatic old school ‘they are mental and not thinking right way as far as I decide’ nonsense.

the idea this is being dumped on children- and I don’t think CBT should be used on them at all to be honest except in the rarest snd most specific if conditions snd circumstances eg phobia, serious OCD, and with a heck of a lot more gentleness and understanding snd less hostility snd ‘stick’ , ‘push’, manipulation than for adults - because they’ve not been around the block to see manipulation as manipulation and realise not everything works and they have to speak up etc

but also because they are in very vulnerable to coercion, perceived threat situations and need proper, safe, advocates. And not people who are looking to label them into losing their autonomy or their testimony being believed. It’s even harder for them to say no thanks or ask why they aren’t being heard and could they have a second opinion.

this seems the opposite dangerously of what such people would need if this was safe under a switch snd bait because the term mental health has been allowed to be employed ambiguously, the old specifics on certain treatments having to match and requiring certain level of qualifications not just for diagnosis but delivery as people are allowed and expected to change that if it becomes clear it wasn’t accurate, instead of trans diagnostic nonsense that is just re-education not based on ‘what helps’ but what someone thinks is the norms that need to be drilled into others.

So what might these children be getting dropped into? And what might they need to exhibit to end up under that? And who will be delivering it snd what level of kindness or care given their vulnerability is specified here?

Why is it when it’s perceived ‘mental’ (ie doctors attitude upsets patient and they don’t want to ‘deal with’ ‘that’) all these vital safeguarding questions about whether something is one thing or another that might be appropriate or not it safe or not - well apparently it’s rude to ask. Even though really it’s like giving someone the wrong drug if they end up on combative re education CBT when counselling and adaptations while they go through a hard time are what’s needed. Except the diagnosis ends up sticking as a label even when the drug doesn’t work.

It used to be that ‘no one’s normal’ ‘nothings normal’ was the key message if psychology because it is a nonsense and a hegemony thrown at people to judge them and make them miserable based on no evidence it’s ‘good’ or’better’ if ‘healthier’ fir them. When did we end up here when we’ve certain peoples visions of how certain others should behave being pumped through and not really caring to check on the health status overall or long term of this ‘because’ they’ve now been labelled.


I mean what specialism if subject gave itself free reign to feel free of checking for harms first and safety and not having to report on whether people’s objective health of all who attended to them (whether dropped out if labelled) long term. So they start caring as it’s in their books when people are made worse long term with five year follow-up stats (just like outcome is reported on in other illnesses - and they can get independent objective ones gif these, I mean come in if someone walks in and wheelchairs out if your treatment that IS a measurable others can see if legally bound to not ‘pretend not to’ and such objective stuff is required rather than just surveys if their own choice permitted) wondering why some end up much worse than if they weren’t treated and why no one thought to get to the bottom of s misdiagnosis when they didn’t improve but got worse two years in etc?

so I’m summary my issue is the specialisms lack of measuring harms has toxified snd changed the culture of their research and treatment and there’s a huge issue which they are talking about getting involved and who. And it needs to start being required to be clarified snd science being brought back in so the bad stuff is kept away and the very precisely defined good stuff and staff who are checking outcomes properly and are interacting to protect the full health and well-being of the patient rather than misguided idea of re educating to be ‘more resilient to us acting as we do’ being made very clear in any papers like this. The two seems opposites almost