Bath Fatigue Clinic - example of advice that harms child

I thought this story (the second one) was so sad and infuriating that it deserves its own thread. It was later said in the thread that it's about the "Bath Fatigue clinic" in the UK. (Admins, if you can think of a better title, please edit.)

https://twitter.com/user/status/955029698068865025

 

Horrific. People so entrenched in their theories they can't see the harm they create right under their noses.

 

"...in response to a slight increase in symptoms..."

Trivialising and dismissing the patient and their experience.

 

When I first saw the title I thought it was about a clinic for people who become fatigued while bathing.

 

Forgot: If you click anywhere in the picture I posted in the first post (except for roger's name or picture) a new window will open with the whole Twitter-thread.

 

This is why the current Guidelines need to go out with a Health Warning.
There are other youngsters whose parents are too scared to speak out, for fear of losing their children.

 

Many more PwME have commented on @Tom Kindlon 's FB page today, some with similar stories of harm done to themselves or their children

 

from the case I highlighted on PR pre Christmas - a depressing update posted by Countrygirl -http://forums.phoenixrising.me/index.php?threads/the-psychobabblers-strike-back-with-coffi-crawley-white-moss-morris-et-al.57276/page-2#post-950040

"For example, a mum has recently lost her legal rights over a child as the judge ruled that ME and POTS, despite all the evidence are psychiatric conditions.

The child has been made very ill by an enforced hospital admission for rigorous exercise therapy and now the allocated state-sanctioned person who has been awarded the legal rights over the child has arranged for the girl to be returned to the unit that made her very sick for yet more intensive physiotherapy as an inpatient, with mum denied access. The system generated by Crawley and her buddy White maintains that intensivie exercise is the cure for severe ME and the terrifed and powerless mum is now waiting for her very sick child to be snatched away again and returned to her previous hospital abusers for yet more exercise therapy. The thought of this makes me shudder!

The judge and the legal guardian take the view that the severe deterioration is merely a sign of the negative influence of the mother, not the consequence of the intensive exercise therapy.Now the poor severely sick child is waiting to be admitted for more vigorous exercise despite her present state being the outcome of the same treatment by the same doctor.

There is no legal avenue left as the court favours the evidence supplied by the BPS doctors .

Complaints about EC have been made to the GMC but they are dismissed. So far."

depressing reading

 

How does any so-called "medical" system advocate the removal of a person or family's innate agency? This is a fundamental right that is being eroded in so very many ways in our current culture. This equates to traumatic abuse for everyone involved.

This idea of "we know better" is a pernicious and terrible mind-virus that also happens to be convenient for an increasingly fascistic global governance.

 

This is horrendous. I hope Esther Crawley and TV/Radio Dr Phillip Hammond (I think he works there) are both asked for public comment and are made accountable. And I hope Tedx Bristol, Ted Talks, Uni Bristol and NICE are made aware especially after the NICE response to the request to remove the guidelines.

It desperately needs picking up by the press(with the parents consent) youd hope that some decent coverage along with the recent articles from Nathalie Wright and Tom Chivers would help put an end to this madness.

 

The cruelty and abuse is sickening. The fact that is is allegedly being carried out for the so called benefit of the victim just adds to the injustice.

I really, really hope the individuals responsible are called to account sooner rather than later and that their friends, families and communities get to see them for the bullying abusers they really are.

 

This is truly disgusting. Thank goodness for the Internet. Hopefully will bring pressure and embarrassment to the government’s that allow this .

 

This is the UK.
There is only now an enquiry into the contaminated blood scandal of the 1980s - cynically probably because some people have died/ retired.

This is not a lone incident. Both Tymes Trust and AfME deal with numerous issues with children - many re school and social services but some re medical treatment. It is not in mainstream , people are too scared.

Personally , i' d make the child the poster girl for millions missing in UK this year. But that may not be in mum'' s best long term interests.
People don' t know what they can' t see or hear, and that' s the problem.

 

This looks to be a question which we could properly enquire about.

Is anyone aware of any published studies on the efficacy of this approach to severe paediatric ME. (Edited to remove information) If not what is the strength of the evidence for any studies relied on in this case?

There seem to be a lot of legal questions to which one would like to know the answer, without seeking to undermine the confidentiality of any patients. Who is being appointed as Guardian ad litem in these cases? How is their independence guaranteed? To what extent are they taking into account the wishes of the child? What independent expert evidence are they seeking? To what extent are they willing to challenge witnesses for the authorities?Is there equality of funding for the parents in any cases (almost certainly not)? Are most of the cases brought within a narrow jurisdiction and heard by the same judge, or are they nationwide, and heard by a variety of judges?

I am sure there are many other issues which will occur.

 

The crucial words in those NICE Guidelines appear to be "agree with them a level of ....etc".

One wonders about the wording of the court orders. Do they override this requirement for agreement? Only someone with knowledge of current practice will know.

 

And it's why we need to somehow capture these people's experiences of harm, and threats of children being taken into care, into something stronger than mere anecdotes. You cannot run trials on human beings to provide scientific evidence that a treatment seriously harms or kills them, yet NICE are incredibly loathe to rock their cosy little boat without scientific evidence! What the hell do they want? Mere acecdotal evidence is, I agree, too weak in itself.

So maybe this is where Sarah Myhill's initiative might help break such an absurd catch-22, because something has to, and no-one else seems to be in with much of a chance. If the powers that be are faced with a collection of signed statements, from people prepared to be identified and stand by their statements, maybe they will then suspend GET (at least) pending further investigation. They need to be made to see that if they dogmatically ignore clear evidence of risk of harm, then they will be morally and maybe legally responsible thereafter. (Yes, I know, they have been for a long time already, but I'm on about what we can get them to see). And we should absolutely not have to prove definite harm for this, but only clear risk of harm. The burden of proof is different and very relevant, when dealing with human safety and when to suspend potential harm triggers, and intiate investigations.