UK child with severe ME being threatened with sectioning

[Countrygirl]

https://www.meaction.net/2019/07/24...BtRohCFWCXg-0zIiYs-bhoZNAWYnCjXS17s7bv0nkM7lI

This child, who is now 17 years old, is under immediate threat of being sectioned in the UK.

Gigi has been in hospital for several months with severe ME. She became ill a couple of years ago following a bout of flu and became increasingly ill with ME until she could do little and, now, virtually nothing for herself. Following tube-feeding, she has regained her weight, but the hospital refuses to recognise ME as a physical illness and won't release her. while her mum, a clinical psychologist for 20 years, is desperate to bring her daughter home to care for her and to give her the best opportunity to improve.

Two of the best ME doctors in the UK have also been involved but their medical experience and knowledge has been totally disrespected and dismissed by the hospital.

A couple of weeks ago, the situation took a turn for the worse. with no explanation, Gigi was suddenly diagnosed with PRS. One might be forgiven for suspecting that the 'matriarch' paediatrician who oversees all paediatric cases in the UK, had been on the phone and given the diagnosis of PRS without seeing the child, thus granting grounds for sectioning.............by proxy, of course, thus being in a position, to deny responsibility. (Reminds me of the Ean Proctor case, where the paralysed boy, whom Wessely handed over to the people concerned, was thrown into a swimming pool to see if he really was paralysed. He sank, of course, but remaining at a distance, the psychiatrist could claim innocence while being morally responsible. Maybe we have a repeat of this situation????)

Mum is raising a fighting fund to hire a solicitor to fight for her daughter's freedom from the hospital and the threat of sectioning.

Just an additional piece of information: the guidelines for diagnosing PRS (Pervasive Refusal Syndrome or PAWS Pervasive Withdrawal Syndrome, which has not recognised, as far as I am aware, in the WHO classifications, were published by Dr Esther Crawley in 2012.( I have the paper on my computer.) She informs paediatricians, unbelievably, that the main symptom of PRS is PEM. In fact, her guidelines describe severe ME. However, she maintains that CFS is a milder illness than the mental health condition of PRS/PAW. and based on this information, Gigi is being threatened with sectioning.

This is the link to the fund-raising page to enable the child to be represented by a legal representative:

https://www.gofundme.com/f/ejk2v2-help-get-gigi-home

 

[taniaaust1]

poor child and I'd hate to think what she may have "originally" gone through with having a British psychologist as a mother, it's great though that her mother may be trying to help her with the ME at this point

it shows how poor science.. somehow there needs to be retractions done on it. Till that is done.. people will keep having to go through things like this. If they can stop a psychologist mother who wants to be caring for her child from taking the child home from the hospital, it shows that they there could stop ANY parent from being able to do so.

 

[Countrygirl]

Here is Gigi before she became severely ill. She is now bedbound and unable to little, if indeed, anything, for herself.

This is what her mother writes:

This is my 17 year old daughter Gigi. She is now seriously ill in Lewisham Hospital with severe ME/CFS. Myalgic Encephalomelitis/Chronic Fatigue Syndrome. She is bed-bound, paralysed, unable to speak and tube-fed.

The hospital doesn't believe that Gigi has a physical illness and there is talk of placing her in an adolescent psychiatric unit. We have been threatened with Child Protection proceedings if we don't agree with he hospital's care plan.

She also had to shave off her beautiful afro because she was too ill to manage it!

 

[Pearshaped]

horrible!!
if only we could do something. ;(
is there no organisation which could help her? rising awareness? newspaper,tv ?

I pray for you Gigi

@Countrygirl keep us posted(if possible) thank you

 

[Countrygirl]

A new paper which basically promotes child abuse has just been published by the Finkites and it will please Gigi's doctors. It examines the parents' perspective on their child's alleged 'functional' diagnosis and particularly references ME. It makes for chilling reading. I will (try) to upload it here:

 

[Countrygirl]

Here is a section of it:

Counterintuitive kind of caring

Parents described how they had tried to care for their child during his/her long-term strains of
symptoms and how they intuitively resorted to both increasing care and to seeking help in the face
of the child – distress due to the functional disorder. However, after the youth entered specialized
treatment in the paediatric department, the paediatricians’ treatment recommendations directed
parents to, for example, pay less attention to symptoms or refrain from calling an ambulance during
functional seizures, with the argument that this could actually reinforce the symptoms. This kind of
care for a child with a functional disorder could be counterintuitive to parents.
Naja’s functional disorder started with stomach pain and low appetite after mononucleosis.
Before admission to the paediatric department, Naja’s mother had intuitively focused on making
sure that her daughter had enough to eat to avoid losing weight in spite of Naja’s food refusal.

Naja’s
mother:
‘Because until we were admitted, I almost spoon-fed her, and I kept her weight rather
stable. When we came here (to the paediatric department), I was told to withdraw
entirely, right. And then she lost weight rather quickly and she has lost 5 kg. [ . . . ] And
even though I can understand it, with my logic, you are still like, are you absolutely
sure?’

In the paediatric department, Naja’s mother followed the advice and the instructions given by
HCPs about providing care for a child with food refusal due to a functional disorder by not feeding
Hulgaard et al. 7

Naja. However, she was ambivalent about this advice. Naja’s mother intellectually understood the
rationale for the different kind of caring through shifting focus away from symptoms and therefore
followed the instructions. Still, it was emotionally challenging as she felt uncertain and caught
between following her intuition for caring for her child, reinforced by Naja’s weight loss and a
professional dialogue that undermined her care and redefined appropriate care.
Paediatricians further instructed parents to handle symptoms at home as part of a strategy to
direct parental attention away from symptoms. Hanna had a history of repeated functional seizures,
followed by days or weeks, where Hanna was unable to walk. Hanna’s mother had been advised by
HCPs to avoid hospital contacts and not to call an ambulance when Hanna had seizures, which was
challenging as Hanna’s mother struggled with the responsibility of dealing with symptoms at
home. Hanna’s mother described an episode, where Hanna had seizures in the home and a
neighbour tried to help.

Hanna’s
mother:
‘And she [the neighbour] said after 10 minutes, we have to call an ambulance. And I
said we couldn’t do that, we are simply not allowed to. Because it is not dangerous. I
think that is difficult, really difficult. It is really difficult because they say that it isn’t
dangerous. Just make sure that she doesn’t swallow her tongue when it happens, just
slap her if she stops breathing, do this, do that. But it is not dangerous. [ . . . ] And that
is a huge responsibility to give to us [the parents]’.
Hanna’s mother felt that treatment entailed ‘not allowing’ her to call for help, which increased
her sense of responsibility in relation to child and symptom care. However, the increased sense of
responsibility was not accompanied by a sense of capability, resulting in uncertainty and
ambivalence about adhering to treatment recommendations. Hanna’s mother did not feel
empowered to deal with symptoms, rather she felt disempowered and alone when following the
paediatrician’s directions.
Emotional strains on parents were, nonetheless, also seen to be reduced through the positive
experience of dealing with symptoms at home as exemplified by Louise’s parents. Louise had a
short history of functional seizures, which were triggered by physical trauma or pain. After two
admissions, the parents were guided by paediatric HCPs to handle symptoms at home, which
initially concerned them. However, they found that they could successfully handle the symptoms,
as in the following episode where Louise’s knee was hurt.

Louise’s
mother:
‘And she wanted to sleep right away, but I held her up and she kind of fell down once in
a while. And I tried to tell her, Louise you don’t need to sleep. Try to have some water.
And after 20 minutes, she woke up again and she was fine. [ . . . ]
Louise’s father: and I do feel that we have learned a lot, I mean we have learned how to deal with this’.
By avoiding hospital contact, the symptoms were less severe, and they passed faster than during
previous episodes. Louise’s parents described a sense of competency gained by receiving relevant
knowledge in the paediatric department, which increased acceptance of the role they were given in
dealing with symptoms at home. The fact that Louise’s symptoms were easily predictable as they
were always triggered by physical pain might possibly have had a positive influence on their sense
of mastery as well.

Parents could feel uncertain and ambivalent about following treatment recommendations for
functional disorders, which were at odds with their intuitive ‘caring’. When ‘caring’ becomes part
8 Journal of Child Health Care XX(X)
of treatment, professionals enter an otherwise parental domain and provide directions about ‘the
right kind’ of care, which may indirectly imply that parents have provided a ‘wrong kind of care’.
A clear symptom trigger, a shorter illness history and successfully dealing with symptoms early
in the course of the functional disorder characterized the case where parents described a heightened
sense of competency regarding symptom management at home.

 

[Countrygirl]

Just seen this message from Gigi's mum:

Thank you for your kind donation. We are gearing up for a massive standoff with Lewisham Hospital.

Both Social Services and the Hospital have, as the Americans say, now 'lawyered up', so I think it's going to get VERY contentious.
So, thank you very much for your donation.
Could you could spread the word on your own Social Media?
Dionne Joseph

This needs now to be high profile. (I am wondering if Dr David Tulller might be interested?)

We need to draw the attention of the public to it and for that we need a ME-literate journalist.

Does anyone have suitable contacts whom they could notify of this child's critical situation?


Here is Gigi on the ward:

 

[Countrygirl]

We have been asked to send emails to the doctor in charge of Gigi to protest about her treatment.

If people could wite a diplomatic and concise message that explains clearly why this treatment of Gigi is so dangerous and abhorrent, it might make a difference to her fate. Remember though, she has had her ME diagnosis removed and has it replaced with PRS. However, she has been diagnosed very recently with severe ME by a very respected ME specialist who tells me that, although she cannot speak, she is able to communicate using her face muscles and gestures. This means she does NOT have Pervasive Refusal Syndrome as she is trying to communicate.

The doctor apparently is away until August 6th, so don't expect a response until after that date.

Here is what is posted:

See the letter-writing campaign below:

Like Karina from Denmark, who was featured in the film Unrest, Gigi is severely ill with ME/CFS and her family is being threatened with Child Protection proceedings. She is hospitalized at the Lewisham Hospital in London.

Letter writing, emails, twitter encouraged to the head of the hospital where Gigi is staying. Her mother helped with the address.

Dr. Elizabeth Aitken, Chief Medical Officer
University Hospital Lewisham
Lewisham High Street
London, SE13 6LH
email: elizabeth.aitken@nhs.net
twitter: @MedicalD_LGT
#meaction
#standupforGigi
#missingmillions

 

[Sarah94]

@Countrygirl will this really help? I'm concerned this might make things worse for Gigi as will make the hospital more hostile towards her mother. More fuel for the hospital to claim that her mother is mad.

I trust PR members to try to write diplomatic messages. However, I've also seen this being shared in several ME facebook groups, which I suspect will result in many somewhat hysterical and angry messages being sent, as well as potentially messages saying things like "this girl needs to take turmeric and vitamins!!!", which won't go down well with the hospital either.

 

[Countrygirl]

@Countrygirl will this really help? I'm concerned this might make things worse for Gigi as will make the hospital more hostile towards her mother. More fuel for the hospital to claim that her mother is mad.

I trust PR members to try to write diplomatic messages. However, I've also seen this being shared in several ME facebook groups, which I suspect will result in many somewhat hysterical and angry messages being sent, as well as potentially messages saying things like "this girl needs to take turmeric and vitamins!!!", which won't go down well with the hospital either.

@Sarah94 I share your concern and I have shared this with doctors before I posted this and they think we have no choice. Gigi's mum was informed of it and apparently did not raise an objection and provided the details. What else can we do? Do you have a better idea?

If you pop over to the other thread I have just started you will see that there has been another development which I am trying to verify. If this is confirmed by mum to be true, then we have to take some sort of action asap. The situation cannot get any worse.

Meanwhile, we are waiting for a reply and confirmation from Mum.

 

[Pearshaped]

this is a good point @Sarah94

but at least we can share it on some socialmedia to raise awareness..imagine, if journalists would become aware of this story.. if the hospital gets under pressure..

 

[Countrygirl]

There are no journalists whom we can approach........if only!

 

[Sarah94]

There are no journalists whom we can approach........if only!

There might be - I have a friend who is a journalist

 

[Sarah94]

There are no journalists whom we can approach........if only!

Also what about Frances Ryan?

 

[Pearshaped]

yes this sounds a but naive but when lots of lots poeple are sharing this everywhere on socialmedia ,perhaps,the press becomes aware of it and that could be a chance..(even for all of us)

imagine if it would stand in the local newspaper or if some tv channel

 

[Sarah94]

How far off is Gigi's 18th birthday? As that will presumably make a difference to things legally.