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Please sign to help save Millie's life - Royal Lancaster Infirmary must STOP causing Millie harm

Countrygirl

Senior Member
Messages
5,510
Location
UK

https://www.change.org/p/save-milli...ary-must-stop-causing-millie-harm?signed=true

Save Millie's life - Royal Lancaster Infirmary must STOP causing Millie harm

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Started
22 February 2024

Why this petition matters

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Started by Abi Mills


I have set up this petition on behalf of Millie, who is 18 years old and has very Severe Myalgic Encephalomyelitis (ME/CFS). She is currently in The Royal Lancaster Infirmary part of the University Hospitals of Morecambe Bay NHS Foundation Trust. Some staff at the hospital have stated that they don’t believe or take seriously ME symptoms and are speculating that it is a mental illness/eating disorder, even though it is stated by WHO and NICE that ME is a physical and complex neurological illness.

Millie agreed to come into the Royal Lancaster Infirmary on 30th January 2023 after 4 paramedics carefully helped her down from her bedroom in a scoop to the ambulance. She and her family were hoping that the stay would be short and a feeding tube given as soon as possible and to get Millie back home where she is able to manage her sensory hypersensitivity well.
Since Mille has been in hospital, it has become very clear that that hospital environment is making Millie’s severe ME so much worse, due to the stimulating environment, all the tests and the complete lack of understanding of severe ME, and horrifically the hospital has made the unacceptable decision of sectioning Millie. ............
 
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Countrygirl

Senior Member
Messages
5,510
Location
UK
Please send as many cards as possible to arrive before this Tuesday and get as many signatures for the petition as you can from friends and family because Millie has her tribunal to appeal against her sectioning this Tuesday. Writing strong comments on the petition will be helpful too as I am hoping we can have them presented to the panel. Only about three percent of appeals are successful so, unfortunately, it is likely that Millie will be put on section 3, and that means the abusive and arrogant consultant can hold on to her for another six months,
 

Countrygirl

Senior Member
Messages
5,510
Location
UK
Here is Millie's address for cards:
First call to action of today please, to help Millie (who is in hospital in Lancaster with severe ME and suffering awful treatment from most of the medical professionals)
Please can those of you who feel able, send Millie a card, to say that you are thinking about her?
Details are:
Millie McAinsh
Lancaster Suite
Acute Ward
Royal Lancaster Infirmary
Ashton Road
Lancaster

She has her tribunal to challenge the sectioning on Tuesday so it would be good, if possible, to present the petition with the powerful comments to the deciding panel. Millie is too sick to attend. She is also now mostly mute and communicates with a series of signs that her family understands. If she is not removed from section....and only about 3%of cases are successful because the panel usually supports the psychiatrists responsible for the sectioning............Millie will then be placed under a section 3 which means the abusing consultant will have charge of her for six months while she and her family will be deprived of the right to resist his treatment.


The cards are an excellent and effective method of warning the staff who are refusing to follow the NICE guidelines that they are being observed by people around the world.
 

Countrygirl

Senior Member
Messages
5,510
Location
UK
2,661 signatures so far.

We need as many as possible plus comments for Millie's tribunal on Tuesday. Please keep sharing.
 

Countrygirl

Senior Member
Messages
5,510
Location
UK
This is a new update. There will be another after Millie's tribunal where an advocate will appeal against her sectioning on Tuesday.

(Note that she is deemed to have full mental capacity yet is under sectioning. Will need to check whether this is even legal under UK law.)


Millie continues to be a patient at Royal Lancaster Infirmary. She has very severe ME and, before her mistreatment by the hospital, was estimated to have a mere 3% capacity by Dr Speight. Since then, she has deteriorated on account of the NICE guidelines for ME either not being acknowledged or followed or not taking precedence in Millie’s care in the hospital. Many of the consultants involved in Millie’s care either believe her condition is mental or don’t understand the severity of her ME and the dangers of normal hospital protocols on worsening her condition possibly irreversibly or for a very long time (years).

The hospital has refused to listen to the two well-known UK ME experts with 60 years combined experience supporting severe ME patients. They informed the hospital that the hospital's treatment of the youngster could result in her death, but the staff ignored the warning and refused to communicate further.

Millie is currently being fed via NG tube at 25-45% which is not possible for a severe ME patient without causing further harm.

Some professionals continue to maintain that in Millie’s very severe ME there is a ‘behavioral’/‘mental’ element.

Despite being unable to speak from exhaustion Millie is deemed to have full mental capacity and uses a code to communicate. Despite this and her agreeing to all life-saving treatment the hospital has now sectioned under the Mental Health Act 1983 Section 2 and at present detaining her at the hospital.

Millie wears an eyemask and must be in a dark room because of her extreme hypersensitivity to light. However, the psychiatrists who sectioned Millie alluded to her needing to be in a dark room as a way to control others and suggested that she doesn’t need to wear an eye mask.

The hospital is trying to stop Millie from having her carer/advocate with her as much as she needs. Millie’s Mum is only "allowed" to visit for 2 hours every day (4 hours this weekend!) and Abbie (sister) is being encouraged to stay away for more hours in the day. This is a big worry as Millie is in such a vulnerable state.

Thank you for reading.
 

Countrygirl

Senior Member
Messages
5,510
Location
UK
4,617 signatures on the petition so far. Let's try to get to 10 000 by Tuesday, the day of her tribunal where an advocate will appeal for her release.
 

Countrygirl

Senior Member
Messages
5,510
Location
UK
I have just been doing a bit of research exploring whether a patient who has been assessed as having full mental capacity can still be sectioned.

Apparently, it is legal.


Here is a line from a document explaining the MHA: If you have the capacity to make your own decisions, staff cannot treat you without your consent, unless they move you to a section 2 or 3. This is what has happened in Millie's case so the consultant and psychiatrists can do with her what they want and she has no right to resist or refuse.

This is scary because this could happen to any of us if we encounter a UK doctor who doesn't understand ME and even though we have full mental capacity, If the doctor wants to impose harmful treatment, he can by imposing a section 2.
 

Countrygirl

Senior Member
Messages
5,510
Location
UK
SOME VERY, VERY GOOD NEWS!!!

As some of you know, Dr Weir made a seven-hour round trip to assess Millie yesterday. We were worried he wouldn't be allowed in, but they couldn't prevent him because he was using section 24 of the MHA. He talked with the matron who has not been kind and wrote a letter to the tribunal when he returned home last night.

The tribunal has just announced that Millie has won and she is no longer sectioned.

This is mostly because of Dr Weir's intervention, but also they were upset about the negative publicity.

Millie still can't return home because she cannot eat or drink. An NG tube is not supported in the community, so she needs a PEG, which they refuse to give her. Thus, she is still effectively trapped in the hospital but no longer under section, so her human rights have been restored.

The staff are just now grumbling about the deluge of cards pouring in for Millie, so please keep sending.

They know they are being observed by the patient community. Keep them coming!

Well done, everyone!
 

Marylib

Senior Member
Messages
1,161
https://www.whitneydafoe.com/mecfs/?post=don-039-t-let-another-me-patient-die-in-your-care
@Countrygirl - I wonder how the hospital can refuse to provide the PEG? Do they insist that her NG tube 'should be' adequate? In other words, is it an administrative decision to cut costs? Surely keeping her in hospital to tend to the NG tube - since there is no NG support in community services - such as district nurses- is more expensive than giving Millie a PEG? Does the tribunal you mentioned have any kind of sway as to what the hospital doctors order for Millie? Maybe I have misunderstood the whole situation - if so, my apologies.
 
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Countrygirl

Senior Member
Messages
5,510
Location
UK
https://www.whitneydafoe.com/mecfs/?post=don-039-t-let-another-me-patient-die-in-your-care
@Countrygirl - I wonder how the hospital can refuse to provide the PEG? Do they insist that her NG tube 'should be' adequate? In other words, is it an administrative decision to cut costs? Surely keeping her in hospital to tend to the NG tube - since there is no NG support in community services - such as district nurses- is more expensive than giving Millie a PEG? Does the tribunal you mentioned have any kind of sway as to what the hospital doctors order for Millie? Maybe I have misunderstood the whole situation - if so, my apologies.
No, they have no sway over the doctors.

They are still pursuing a psychiatric label.......possibly to save face.......and the consultant claims he never received Dr Weir's excellent letter that described ME and recommended tests and treatments. He has now sent it in an email but we don't know whether he will read it. We will know next week, hopefully......but I won't hold my breath.

Whitney Dafoe has sent an excellent letter containing information about tube feeding in some detail, but if they don't read a consultant's letter (assuming it arrived) they won't take notice of one from a patient.

We will understand the situation more next week when, if they are listening, there should be changes.
 

BrightCandle

Senior Member
Messages
1,161
This sort of abuse of patients is never just about ignorance, because if it was then the patient providing a papers on ME/CFS and the guidelines would fix the problem. The fact they always ignore Dr William Weir and other specialists and always try to pursue a mental health label is the sure clue that they fully intend to kill the patient with their out of date views. The only thing that turns this around is too much pressure than they can handle and the threat that this will become a legal action that ends their career.
 

Countrygirl

Senior Member
Messages
5,510
Location
UK

UPDATE ON MILLIE.

We were hearing over the weekend that Millie cannot tolerate being in the hospital any longer as she continues to deteriorate under the hospital regime. This is the new update:
Millie is declining further in hospital and has communicated she can only stand a few more days and needs to go home extremely urgently. She can no longer get out of bed at all and even turning over in bed is becoming a big struggle
Millie still doesn't have a feeding tube in that she can go home with. We are getting very worried.
Please keep sharing the petition - we need to make sure Millie is able to go home asap x
 
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