Isla Kidd and her family

Robert 1973

Senior Member (Voting Rights)
We have an In Memory thread for Isla.

Please note: This thread covers issues of death, FII, and the removal of a child from her parents.




And this is why it matters .
The crux of the matter has not changed , and without action will not change .
Isla Kidd' s mum on Xitter
https://twitter.com/user/status/1839735064394911833


My daughter Isla had Severe ME & died in May, my younger daughter also has ME, her future looks bleak,no improvements in medical care in sight.
How many more lives have to be ruined ?
#pwME
#thereforME
@wesstreeting

I’m not sure if this is the right place to post this. I know nothing about Isla’s case, I am just sharing what I’ve read on BlueSky:



Sarah Boothby on BlueSky:
Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear.
#MEKills #HumanRights

@meactionuk.bsky.social @meactnet.bsky.social please boost on other platforms. We are scrambling for lawyers to get the sister out as the top priority. I am speaking with national print media this morning.
 
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There ought to be an enquiry within RCP and RC Paeds and Child Health to sort out what policy actually is and since it is clearly not working how to replace it.

Unfortunately, I only get to hear about these cases too late and too little so I am not personally in a position to do anything very useful. None of the charities seem to know what to do or to have medical advisers who know what to do.
 
There ought to be an enquiry within RCP and RC Paeds and Child Health to sort out what policy actually is and since it is clearly not working how to replace it.
How can that be made to happen?
Unfortunately, I only get to hear about these cases too late and too little so I am not personally in a position to do anything very useful. None of the charities seem to know what to do or to have medical advisers who know what to do.
What can be done to get the charities to know what to do or to get medical advisers (or medical advice) about what to do? Is some sort of mini-conference needed? Or just a long Zoom call?
 
Nothing has changed and sadly someone died as a result and now to add more insult onto the grieving parent a further gross miscarriage of justice will now occur due to yet more medical ignorance. The charities try to intervene in all these cases but they are never successful, because there is no way to stop the states abuse rollercoaster. The NHS consultants view is absolute and no one can challenge it.
 
If I knew the answers I would have put them in to practice.
I wonder if a group of doctors, and the charities, writing a joint open letter with a press release and getting someone like Carol Monaghan MP to push for it might help - but maybe that has already been tried. I'm hopelessly out of touch on this issue and what has already been attempted.
 
An inquest was being prepared for - the paediatrician seems to have provided information to the coroner which changed his mind from a "death by natural causes" to focus on parents.
The FII info for clinicians is very problematic when it cones to ME/CFS

Medical records had been obtained and a host of inaccuracies found.
 
An inquest was being prepared for - the paediatrician seems to have provided information to the coroner which changed his mind from a "death by natural causes" to focus on parents.
The FII info for clinicians is very problematic when it cones to ME/CFS

Medical records had been obtained and a host of inaccuracies found.
I'm not surprised. Here is a message I wrote in 2018 after one by Arnie Pye who said "They were in many places a complete fiction.":

"So are mine. This is from an entry of mine on Phoenix Rising from 2015:

"I had to fight hard to get copies of my notes sent to me. I got a batch from the previous GP. They are so chaotic I'm perhaps not surprised that GPs from there seemed to have little idea what was going on with me. Recently I finally typed up those of particular interest in a more coherent form. That was how I finally discovered that my first bout of severe hyponatraemia (dismissed on the phone, and recorded in my notes, as a panic attack!) came soon after I was prescribed an ACE inhibitor. By then I had suffered a fracture and dental damage, plus 4 days in hospital with another severe episode, and had been forced to change GPs by the appalling behaviour of doctors at the old one, aggressively blaming me for the illness, following the lead of the hospital consultant. This adverse drug effect has cost me dear in terms of reducing my ability to work. I was just keeping my head above water until then. I am now off it after 7 years...

When I asked for the hospital notes after my admission in 2010 I was referred repeatedly to the hospital's legal department!

Finally I got them - and more - from my new GP. They are full of errors, even attributing things to me that I have most certainly never said, portraying me in a way that friends would not recognise. Some of it is insulting, and in another context might be libellous.

All my childhood records are missing. (removed reference to someone but probably not in time! No need to reply!)

One thing that might be useful - and I have found particularly useful - is test results. My doctors have sometimes clearly not understood them. Now that I have them, I can look them up in the downloaded handbook of the local hospital that they use."

There are also many things completely missing, such as what vaccinations I've had, what I've had removed, etc."
 
This gets more tragic the more you look at it. Isla’s mother posted this a bit ago, Isla at age 8 talking about her GET experience
Oh no, I read Isla's account years ago and thought it was so beautiful and heartbreaking. It rang very true to my own experience as an adult with ME/CFS doing GET and CBT. I'm really upset to hear she died.

Here's what Isla wrote aged 8, for anyone who struggles to read it on the yellow background. I've put in some breaks for easier reading:

You are meant to understand my illness but all you do is push, push, push. Nothing I do is ever good enough. I am proud and think you will be pleased with me as I have been going to school much more than before, but all you do is say I need to stay there longer, and if I feel ill, I can't [go] home early.

I can't get to sleep at night and you make me feel like it is my fault. You tell my parents to ignore me at night-time even when I am upset and feeling scared and lonely. Lucky for me they ignore you! I am so tired but you say I have to get out of bed and walk even at the weekend when I have been at school all week. I don't like coming to see you, it makes me worry what you are going to ask me to do next.

My mum tells you I often feel much worse, but you tell us I just have to do more, more, more. You speak to my school and I worry they will be on your side and expect more of me too. I worry about what you are going to tell us to do next.

I think you should care more about the children who come to see you and try to understand what they are going through.
 
There ought to be an enquiry within RCP and RC Paeds and Child Health to sort out what policy actually is and since it is clearly not working how to replace it.

Unfortunately, I only get to hear about these cases too late and too little so I am not personally in a position to do anything very useful. None of the charities seem to know what to do or to have medical advisers who know what to do.
There is nothing anyone can do when you are accused. A mother is not allowed any defence and her evidence can and mostly does get thrown out. This may help https://bilson.org.uk/home/fii_open_letter/
Have flagged his work and Luke Clements up many times we need as a community start to engage and support those that look at this more closely.
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I listened to the part of this File Four programme about Isla [from 22:00] https://www.bbc.com/audio/play/b08vyly5
Sonya Chowdhury comments at about 35:00

Isla's GET sounds like graded everything therapy/GAT - Isla's mother states that half of it was increasing schoolwork, and the other half was non-schoolwork. In Isla's own account she talks about the therapist wanting her to go for walks, which would count as GET.

Given that Isla is reported to have died at age 18 due to heart failure, what really stuck out to me was how Isla's mother described Isla's reaction to GET at age 8 (?) - Isla developed new symptoms of chest pain, back pain and breathlessness, as well as deterioration of her existing symptoms, including cognitive symptoms and mobility [had to start using a wheelchair]. Her parents were concerned and declined further GET.

The FINE (2010) and PACE (2011) GET manuals attribute chest pain to overbreathing, anxiety etc. But the PACE and GETSET manuals (2017) do carry warnings:
[PACE GET manual]
RARE ADVERSE REACTIONS TO EXERCISE
IF YOU GET ANY OF THESE SIGNS DURING EXERCISE, STOP EXERCISING AND
DISCUSS WITH YOUR PHYSIOTHERAPIST OR DOCTOR.
• Breathing becoming out of control
• Wheezing
• Chest pains
• Collapse or faintness
• Injuries
If you feel anything else that is making you feel uncomfortable during exercise be sure to
discuss this with your physiotherapist or doctor.

[GETSET manual]
In the unlikely event that you experience breathing difficulties such as wheezing; chest pains; or you collapse/faint during exercise, you should seek medical help immediately.
My heart goes out to Isla's family. I wish things had been very different, and I hope they will be for her sister.
 
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