United Kingdom: Hospital has left my daughter in ME agony, claims mother, July 17 2022

https://www.thetimes.co.uk/article/hospital-has-left-my-daughter-in-me-agony-claims-mother-3kvrdzwjl

Hospital has left my daughter in ME agony, claims mother

July 17 2022, 12.01am

Ella Copley with her mother, Joanne McKee, before her illness

Ella Copley, 17, from Tingley, West Yorkshire, has suffered from ME (myalgic encephalomyelitis), sometimes known as chronic fatigue syndrome, for seven years.She has been in Leeds General Infirmary since March, when she was taken there by ambulance with an infection later diagnosed as sepsis.
In an interview with Times Radio, she added: “No one has any understanding of her conditions. That really is the issue. If she was an animal, she would have been put down.”
Ella began complaining of abdominal pain a few weeks ago, and McKee said it was only after an official complaint to the hospital that they agreed to operate, removing 50 stones from her bladder.
McKee said: “Because no one would listen and because she was just in pain, day and night, [Ella] started saying, ‘You guys are leaving me in absolute agony. I will not spend my life in agony. If you won’t help me then I will just take my life. I cannot live like this.’ ” But McKee added that her daughter had “determination and a will to live”.
Ella has been in Leeds General Infirmary since March

 

The teenager, who was an athletic child before developing ME after a viral infection, took her GCSE exams from her bed. She achieved nine at grades A and A*.
McKee claimed that despite being unable to pinpoint the cause of Ella’s symptoms, doctors had refused to accept input from outside experts in ME and related conditions that she had put forward to them.
She said: “All [Ella] kept saying is, ‘I am going to die in here.’ It’s the fact that people don’t believe her. We’ve seen over 200 doctors over seven years, and probably only three have ever believed her.
“There are lots of scientific documents to say these conditions cause severe pain — it’s not in Ella’s head. And I do feel a fear for her life. We are going to lose so many more people, if they are not sent to the right specialists.”
Together with Ella, she has decided to go public out of desperation. “I am broken, I have nothing left in the tank,” she said. “But I know if I stop my daughter will die in this hospital.”

 

There have been template emails for people to use to raise awareness and let the trust know they are being watched.
Shared via Facebook and Twitter. I will see if I can find one to post here.

It's disturbingly similar to what happened to GIgi and a similar age.

I understand from social media that AfME have been involved and have been a big help to the family.

Someone needs to sue

FROM FACEBOOK

URGENT: PLEASE PLEASE SHARE!!

Hello everyone

URGENT - PLEASE SHARE URGENT - PLEASE SHARE

Please can you share this post on your News Feeds. It is about Ella Copley, a young woman suffering terribly from Myalgic Encephalomyelitis (ME).

Ella Copley is 17 years old. She has severe ME and is also in intestinal failure. Ella has been a patient in Leeds General Infirmary (UK) for 18 weeks. People with ME are often not believed and Ella is in severe pain. The pain is so bad that Ella says she wants to die. Even though Ella’s pain is unbearable, Leeds General Infirmary is withholding pain treatment. Ella's Mum, Joanne thinks the hospital’s agenda is to Section Ella under the Mental Health Act.

Ella is in intestinal failure. She is due to have an operation this week, so we need to move quickly. Ella is desperate for help and Joanne, has asked if we can send an email and postcards (or letters) to LGI. We want them to KNOW they are being watched and to give Ella the correct pain relief. Joanne thinks Ella will die soon if she is not given the proper treatment.

This is Ella with her dog Star, whom Joanne describes as her ‘Saviour’. This is a video of Ella screaming in pain. It is very difficult to watch, but this is Ella’s and her family’s ongoing, daily, horrendous reality.

Thank you for your help!

EMAIL
Can you make the subject line of the email:

ELLA COPLEY – HER PAIN IS REAL

Please send the emails to:

julianhartley@nhs.net
tracywade@nhs.net

POSTCARD/LETTER
Can you also send postcards to LGI. Again, please use the same line:

ELLA COPLEY – HER PAIN IS REAL

Please send the postcard/envelopes to:

Julian Hartley
Chief Executive
Leeds General Infirmary
Clarendon Wing
LEEDS LS1 3EX

Can you say the following in your email/on your postcard/letter:
Ella Copley is a 17-year old patient in your hospital. She is on Ward L42, Clarendon Wing. Ella has SEVERE ME and is in constant pain. Please understand that ME is a real physical illness. It is not a psychological illness.
Can you look into Ella’s case and ensure that she is provided with the correct pain medication.
Thank you
#standup4ellacopley #activism #humanrights #nonprofit #MillionsMissing #MECFS #MEAction #dogood #leedsgeneralinfirmary #actionforME

ETA . There are some videos on social media and they are disturbing. I didn't want to post them here but they are easily found

 

This is a terrible situation, and what is made so much worse is the length of time this has dragged on.

Sorry to say, my experience and that of some close to me is that some hospital staff deny a patient is in terrible pain.

Not only where ME is concerned, but having a controversial illness such as ME seems to make the interactions in medical settings worse.

I couldn't read the entire article without subscribing. I hope Ella gets proper help soon, and isn't stuck in that hospital for any further length of time.

 

Thread may be too disturbing for some times radio interviews in thread



https://twitter.com/user/status/1548945865976446977

 

Trial By Error: Mom Speaks Out About NHS “Abuse” of Daughter; Norway Approves Lightning Process Study

"On Monday, The Times (UK) published a story about a 17-year-old girl with ME who has experienced hospital treatment that her family has referred to as “neglect and abuse.” The details are harrowing—but should not be unfamiliar to people aware of similar experiences reported by other teenagers with severe ME."

https://www.virology.ws/2022/07/20/...hter-norway-approves-lightning-process-study/

 

Permission to repost


Reaching out to the wider community... Please spread and repost

Glad Ella is being handled more sensitively and the informal advocates and charities are helping to fight her corner.....

https://www.gofundme.com/f/29uex-help-ella-get-home?

Please take a few minutes to read our story.

My beautiful daughter Ella is currently in hospital with intestinal failure, she has not been able to eat, drink or even take medicines orally for 10 weeks now.

She has been poorly now for 7 years but i believe the intestinal failure was a result of doctors not taking my sepsis concerns seriously, meaning she was left for over 8 hours without treatment until it became severe sepsis and she needed to be taken to ICU. I believe the complications wouldn’t be as severe as they are now if she had been treated sooner. She never presents with the usual symptoms but i always tell medics this. When you have M.E. everything gets ignored or dismissed and your body fights against you.

She was diagnosed with M.E/CFS at age 11 and it has been a downward spiral since then.

Joanne Mckee her mum, is organising this fundraiser.

 

Is there any update? It all went very quiet after this. Were the family silenced?

 

I have seen posts from her Mum recently on Dr HNG's FB group.
Ella is still in hospital, but being treated better. I think this has been due to a different ward manager. Don't know if it is a different ward.
She also mentioned how helpful Sonya C from AfME had been.

 

It is not clear to me that this patient was in the 'National Inpatient Centre for Psychological Illness' that is part of the Leeds ME/CFS service.