Very severe ME patient Millie being abused by Royal Lancaster Hospital

[Countrygirl]

Please help save Millie's life by sharing this and then by signing and sharing the petition that will soon 'go live'.

Millie is 18 years old with very severe ME and was estimated to be at 3 % capacity before she received what is effectively abusive treatment at the hands of The Royal Lancaster Hospital. She was taken in as a day case initially as she can no longer eat or drink adequate amounts but she was sectioned by a consultant who said he didn't believe ME exists, or, if it did, it is a secondary problem, and that he wasn't going to follow the NICE guidelines.

Mum had also been barred from visiting her, apart for one hour a day but Millie is under permanent escort. They have now decided that Mum's right to visit must be removed completely on weekdays.

Despite being very severe, they are starting GET today although she cannot stand up or speak. They are also going to remove her blindfold which protects her eyes as she experiences severe hypersensitivity to light and noise.

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

The family is preparing a petition and I will add it when it 'goes live'. We need to obtain 10 000 signatures ASAP so please circulate it to everyone you can

Thank you!

Edited to say that Mum is now permitted to see Millie two hours a day and that some staff are reported to be trying to partly follow the NICE guidelines.

 

[lyran]

These always makes me angry. I'm not sure how much these signatures can help? do they just hand them over to the government? I think the best way would be that a reporter from a large media company would write an article about this and it would be on everyones face. We the people can only change the outcome, not doctors or governments, they don't care.

 

[BrightCandle]

What is really necessary is a lawyer and the hospital needs to be sued. We have guidance now we know GET is harmful and what these doctors are doing is against the guidelines and hence medically negligent. The days of petitions and such are no longer necessary, its a legal matter now that we have the guidance and these doctors careers should be ended.

 

[Countrygirl]

These always makes me angry. I'm not sure how much these signatures can help? do they just hand them over to the government? I think the best way would be that a reporter from a large media company would write an article about this and it would be on everyones face. We the people can only change the outcome, not doctors or governments, they don't care.

I have been in regular contact with a journalist for a few weeks and have been sending her lots of information while her editor tells me they want to run a campaign for ME. She is now very involved with Millie so we hope that the petition, if it can quickly gain 10000 signatures, can be used by the press as a hook for the story.

 

[Hope_eternal]

This is horrific! I hope they find a good lawyer and fast. The doctors’ ignorance is negligent! How can they be so cruel??? There needs to be more education in the medical field on what ME looks like and how to help. I’m terrified when I hear stories like this! As a mother to a child with this illness, it’s a real fear that this could happen in our lives. Would the doctors be willing to read the latest findings and best treatment for a patient in her condition? Has any of their treatments ever worked for a patient with ME? What is the result of their treatment? I pray Millie gets the right help. ❤️‍🩹❤️‍🩹❤️‍🩹

 

[Countrygirl]

This is horrific! I hope they find a good lawyer and fast. The doctors’ ignorance is negligent! How can they be so cruel??? There needs to be more education in the medical field on what ME looks like and how to help. I’m terrified when I hear stories like this! As a mother to a child with this illness, it’s a real fear that this could happen in our lives. Would the doctors be willing to read the latest findings and best treatment for a patient in her condition? Has any of their treatments ever worked for a patient with ME? What is the result of their treatment? I pray Millie gets the right help. ❤️‍🩹❤️‍🩹❤️‍🩹

They have reported a doctor who warned them of the harm they are inflicting on the child to the GMC. They won't read the research or dismiss it. Relevant papers have been sent to them but they refuse to change their views of ME and the old psychiatric dogma that blinds their minds.

 

[Alvin2]

Lawyer and media attention.

Don't try to convince reality deniers of reality, their entire ethos revolves around denying reality and not accepting it.

Shame them and use the law to break them.

 

[Countrygirl]

Lawyer and media attention.

Don't try to convince reality deniers of reality, their entire ethos revolves around denying reality and not accepting it.

Shame them and use the law to break them.

We have a very sympathetic journalist involved, but the situation is precarious because the youngster is now sectioned and the mum is mostly banned from the hospital so they can do what they want. Once under section, all patient rights and those of the next of kin are effectively removed.

She is under the control now of a psychiatrist who believes that ME is 'behavioural' and he says her mask must be removed as he maintains that it is a symptom of her controlling behaviour.

Dr Weir says that ME photophobia probably has the same pathological cause as that of acute meningitis – patients with this are always photophobic. The hospital refuses to respond to his communications though.

 

[Hope_eternal]

We have a very sympathetic journalist involved, but the situation is precarious because the youngster is now sectioned and the mum is mostly banned from the hospital so they can do what they want. Once under section, all patient rights and those of the next of kin are effectively removed.

She is under the control now of a psychiatrist who believes that ME is 'behavioural' and he says her mask must be removed as he maintains that it is a symptom of her controlling behaviour.

Dr Weir says that ME photophobia probably has the same pathological cause as that of acute meningitis – patients with this are always photophobic, and the suggestion that this is based on a desire to “control” is frankly ludicrous and completely unprofessional. The hospital refuses to respond to his communications though.

I mean, are we in the dark ages? Have any of these doctors heard the latest on the similarities between ME and Long Covid?

How is this happening in the 21st-century? Don’t they have 1 ounce of a shred of common sense? This poor girl is at the mercy of ignorant people that think they know it all — my heart cries out for her and anyone in this situation. There’s got to be something we can do. I don’t live in the UK but will do some research today to see how we could advocate for her. This has got to stop.

 

[BrightCandle]

Doctors are a law unto themselves and can ignore everyone else regarding a patient, even killing them without any consequences for their actions. We can apply pressure to make it not worth the consultants time and make it appear legal consequences will take place if they don't release them but we actually can't make it happen and no lawyers will take these cases in practice, its a giant bluff on our communities part. A bluff that thankfully has saved a number of lives in the past.

 

[Countrygirl]

We hope a petition from the family will 'go live' today and I have written an update that I will post when it is sanctioned by the mum.

 

[Alvin2]

We have a very sympathetic journalist involved, but the situation is precarious because the youngster is now sectioned and the mum is mostly banned from the hospital so they can do what they want. Once under section, all patient rights and those of the next of kin are effectively removed.

She is under the control now of a psychiatrist who believes that ME is 'behavioural' and he says her mask must be removed as he maintains that it is a symptom of her controlling behaviour.

Dr Weir says that ME photophobia probably has the same pathological cause as that of acute meningitis – patients with this are always photophobic, and the suggestion that this is based on a desire to “control” is frankly ludicrous and completely unprofessional. The hospital refuses to respond to his communications though.

This is why you need a lawyer and media attention. Contact the BBC and see if they will cover this. Contact smaller media organizations.

The medical system does not like light being shined on them when they do evil things. Which is why that is exactly what needs doing.

 

[serafim]

the bastards should get their licenses revoked

 

[Hope_eternal]

You may already have this info. It talks about rights. I’m just getting home from work and am starting my search.

https://www.rethink.org/advice-and-...s-and-restrictions/nhs-treatment-your-rights/

When you have problems with medical personnel.

https://www.rethink.org/advice-and-...s-and-restrictions/nhs-treatment-your-rights/

If you need help making your complaint you can get the help of an Independent NHS Complaints Advocate.

I hope something in here is helpful. I’m not familiar with UK procedures but this seemed like a place to start.

 

[Atlas]

This is sickening. I hope they are exposed and recognise their error and the violence they're doing to her. I hope she can find proper care.

How can this even happen, it's like a single psych person can hold her captive based on solely opinion and against the evidence? ..

 

[Countrygirl]

You may already have this info. It talks about rights. I’m just getting home from work and am starting my search.

https://www.rethink.org/advice-and-...s-and-restrictions/nhs-treatment-your-rights/

When you have problems with medical personnel.

https://www.rethink.org/advice-and-...s-and-restrictions/nhs-treatment-your-rights/

If you need help making your complaint you can get the help of an Independent NHS Complaints Advocate.

I hope something in here is helpful. I’m not familiar with UK procedures but this seemed like a place to start.

Thank you!

She has a tribunal to challenge the sectioning next Tuesday but she is too sick to attend but we do have an advocate if the hospital will accept him. Unfortunately, the panel normally supports the section with only 2-4% being successful. The tribunal in about 97% of cases moves the patient up to a section 3 that gives the hospital the right to hold the patient on section for another 6 months.

 

[veganmua]

What's the petition link?

 

[EttaLovedayME]

Please help save Millie's life by sharing this and then by signing and sharing the petition that will soon 'go live'.

Millie is 18 years old with very severe ME and was estimated to be at 3 % capacity before she received what is effectively abusive treatment at the hands of The Royal Lancaster Hospital. She was taken in as a day case initially as she can no longer eat or drink adequate amounts but she was sectioned by a consultant who said he didn't believe ME exists and that he wasn't going to follow the NICE guidelines.

Mum had also been barred from visiting her, apart for one hour a day but Millie is under permanent escort. They have now decided that Mum's right to visit must be removed completely on weekdays.

Despite being very severe, they are starting GET today although she cannot stand up or speak. They are also going to remove her blindfold which protects her eyes as she experiences severe hypersensitivity to light and noise.

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

The family is preparing a petition and I will add it when it 'goes live'. We need to obtain 10 000 signatures ASAP so please circulate it to everyone you can

Thank you!

Hi! thank you so much for posting about Millie’s case! All this support is really appreciated!!

Just wanted to correct some information. Please could this be added to the original post so the correct information is being shared. Thank you.

Millie’s Mum is currently allowed to visit for two hours a day both on weeks days and weekends.

Two local ME ‘specialists’ have been involved and have stopped physiotherapy/GET from happening, (however these ‘specialists’ are not more involved in Millie’s case as they don’t have experience with severe ME).

The consultant hasn’t said in words that they don’t believe in ME however their attitude implies they don’t.

The hospital still wants to remove her eye mask and try sunglasses instead however luckily this hasn’t happened yet.

Some staff at the hospital are trying to follow the NICE guidelines, although not fully.

Thanks.

 

[Whit]

@Countrygirl

Can you get my “Letter To A Psych Ward” to Millie or her family?

It is a letter explaining why she cannot be committed and why mistreatment could kill her based on my personal experience.

You can edit it to fit Karen’s situation.

It’s available to download in multiple formats on my website here

Thank you for what you are doing and let me know if I can help further in any way 🙏

 

[serafim]

What's the petition link?

the OP said they’ll add the link when the petition goes live