Carol Monaghan asks question of Prime Minister in PM’s questions today 27th March

2kidswithME said:
In my experience the school raised the question of legal action regarding ‘attendance issues ‘ after my son had been ill for 3+ years and he wasn’t improving on a schedule that suited their attendance targets. Fortunately we had good medical support so the threat was never mentioned again, but things continued to be difficult even tho said child was improving by then.

They came down very hard from day one when the second child fell ill, it took 3 months to get any support even though she was in an exam year. I’ll add that individual teachers who knew the children and us as a family were helpful, but the problem was with a particular member of senior management through their GCSES who didn’t want to listen and understand. 6th form was great, in the same school but different management.

I’ve never personally heard of a family that had a child taken into care, but certainly the pressure is there all the time. And that is just wrong, as is having to constantly fight for support and try and educate everyone around!
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Schools seem to be as much of an issue, if not more.

Those who have had Safeguarding proposed / instigated that i know (3) had this happen via school when attendance dropped.

One was stirred up via a school nurse even when the child had a diagnosis.

Another was told their child would be placed in foster care " to ensure their attendance improved"

The key aspect is lack of knowledge, combined with seemingly unbelievable pressure on attendance targets being met .
With children there seems to be a presumption that you grow out of it.

You don' t have to refuse GET to be taken down this route
 
Hip said:
Are you talking about kids with ME being taken away from loving families by the psychiatrist paediatricians, to be kept in a hospital or institution for coerced GET or CBT?

That seems a high percentage, but not implausible I guess. Would you a reference for that figure?
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Unfortunately I don’t. This is a figure I have seen used repeatedly by the Tymes Trust and others (podcast, twittter, etc.) but I don’t know what it’s based on, which is why I wrote “according to”.

edited: name
 
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andypants said:
Unfortunately I don’t. This is a figure I have seen used repeatedly by the Thymes Trust and others (podcast, twittter, etc.) but I don’t know what it’s based on, which is why I wrote “according to”.
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Thymes have a clear distinction re ME v CFS.
 
Hip said:
So do I understand that the paediatricians who were dealing with your kids' ME made hints or threats to you that they could take your kids away at any time?

Did you breathe a sigh of relief when your kids reached 16, which I believe is the age at which they can no longer be taken away without their consent?
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No, it was the school SENCO who made the threat, but what he intended was unspecified. However it was clear at the time that swift reintegration was the aim, he wanted to manage it, not let us have much if any say

The paediatrician (who was brand new to our case!) and GP were both supportive when the school threatened legal action and both wrote letters on our behalf. The paediatrician even wrote that [son] had to manage his own reintegration! The Gp attended a couple of the worst meetings.

The SENCO was not best pleased but couldn’t override the clear instruction, he did continue to make things difficult!

(I’ll add that random conversations with parents who had to deal with the SENCO for other reasons indicated that almost no one found him easy to work with, and he was often unhelpful. Lesser staff clearly didn’t feel free to contradict or override him either.)

I was relieved when the kids moved on to 6th form, they were totally supportive. By then our medical support was only writing letters, we were managing the illness ourselves. And the 6th form allowed part time attendance which gave space for the kids to recover.
 
andypants said:
Unfortunately I don’t. This is a figure I have seen used repeatedly by the Tymes Trust and others (podcast, twittter, etc.) but I don’t know what it’s based on, which is why I wrote “according to”.

edited: name
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I think it's from an AfME survey; that's what's mentioned in the parliamentary briefing document that all the charities put together. I'll put up a picture.
 

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rvallee said:
Wessely once said this rarely ever happens, if at all.
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A key issue is all the trauma caused to families by the downright terrifying proceedings leading up to a decision. And Wessely's comment shows that in the vast majority of cases it was all unnecessary.
Hip said:
In Medieval times, people believed that illnesses resulted from being possessed by bad spirits; these psychiatrists have similar backwards Medieval ideas: they maintain that illnesses like ME are due to having bad thoughts.
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GET is akin to the witches' ducking stool. Take it and you drown, don't and you are presumed guilty.
 
Two paediatric related documents from the MUS services in UK and other MUS related issues thread:


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

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

Slides from a presentation:

http://medicine.exeter.ac.uk/media/...psychiatry/Rory_Conn_-_Child_Liaison_2018.pdf

Why do we need specialist Paediatric Liaison Services?
Dr Rory Conn Consultant Paediatric Liaison Psychiatrist Royal Devon & Exeter Hospital


"Childhood MUS" from slide #65

Slide #67:

slide-67-garralda-rask-slide.png



Note some of the content of these slides is taken from the paediatric MUS guideline above.


Dr Rory Conn had also presented at:

https://www.swpc.org.uk/meetings_old.htm

South West Paediatric Club
An organisation of paediatricians and others working in child care in the South West of England.

Spring Meeting, Thursday 18th May 2017
RILD lecture theatre, Royal Devon and Exeter NHS Foundation Trust

Study day on Medically Unexplained Symptoms.
 
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