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

[Suffolkres]

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

 

[Suffolkres]

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.”

 

[Amw66]

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

 

[DokaGirl]

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.

 

[Amw66]

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

 

[Andy]

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/

 

[Suffolkres]

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.

 

[Lucibee]

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

 

[MEMarge]

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.

 

[Jonathan Edwards]

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.

 

[InitialConditions]

This post has been copied to a memorial thread.
-------------

There's a post on FB from yesterday saying that Ella has sadly died:

 

[MEMarge]

She was in Leeds General Infirmary.

Although it is unlikely that GPs have much influence in a hospital setting, this is the area of:
Dr Vikki McKeever
GP with specialist interest in ME/CFS
Yorkshire Fatigue ME/CFS Service and Leeds and West Yorkshire ME/CFS Service

The author of the recent article that @Sly Saint recently spotted on the open access govt website
https://www.openaccessgovernment.or...halomyelitis-chronic-fatigue-syndrome/189458/

M

Post in thread 'BACME -The challenges from diagnosis to treatment mean that ME/CFS can have a dramatic impact on patients’ lives.'

Sunday at 5:35 PM

The same style of picture of young woman, sitting with hand to head. Also her eyes are closed.

• MEMarge

• 

The other author being the notorious nurse at UCLH who traumatises teens and their families:
Anna Gregorowski
Chair and Consultant Nurse
British Association of Clinicians in ME/CFS (BACME)

 

[MEMarge]

The ME services in the area are run from the Psych hospital:​

​

"The Newsam Centre​

Services at this location:​

• Acute Inpatient Services
• Community Rehabilitation Enhanced Support Team (CREST)
• Complex (Locked) Rehabilitation – Newsam Centre Ward 5
• Eating Disorders Service (Adult)
• Gender Identity Service
• Healthy Living Service
• Liaison Psychiatry
• Low Secure Forensic Service - Leeds
• ME/CFS Service
• Psychiatric Intensive Care Service (PICU)"

The Newsam Centre - Our Services

www.leedsandyorkpft.nhs.uk

 

[MEMarge]

The National Inpatient Centre for Psychological Medicine delivers biopsychosocial holistic care for people with complex persistent physical symptoms and physical / psychological comorbidities.​

The NICPM is an eight bed specialist inpatient unit based at Leeds General Infirmary. It is a unique service which has a history over many years of delivering services within Leeds and West Yorkshire, and since 2009 has been successfully treating patients from across the UK.

Our team specialise in helping people with the following types of problems:

• Severe and complex persistent physical symptoms
• Psychological difficulties affecting the management of long-term physical health conditions (physical / psychological comorbidities) at a serious level of severity
• Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) – we provide the inpatient care for the Leeds and West Yorkshire ME/CFS service

Half of our beds are commissioned for Leeds and West Yorkshire residents and half for people from across the UK.

Our aim is to help people make significant improvements to their health and quality of life. Our clinical outcomes are often very good and patient feedback is very positive, with some examples shown below.

We are proud of our highly experienced team who provide outstanding care. The professionals in our team include:

• 
  Liaison psychiatry doctors
• Nurses
• Health Support Workers
• Occupational therapists
  • Physiotherapists
  • Cognitive behavioural therapists
  • Dieticians
  • Pharmacists
  • Administrators.
• We have a very experienced and expert team who, between them, have a broad range of specialist training, including in general/physical medicine, mental health, physical, occupational, and cognitive behavioural therapies.
  
  

  What to expect​

  
  
  
  The visiting times on the unit are 2pm to 4pm and 6pm to 8pm. You can download and view more information for patients, families and carers below:
  
  • Service Information Leaflet
  • Pre-admission Information
  • Patient Information booklet
  • Frequently Asked Questions

• Our carer and patient stories and what makes us proud​

  A few of our carers and former patients have kindly shared about their time with us and their recovery. You can read them all below:

 

[MEMarge]

"A few of our carers and former patients have kindly shared about their time with us and their recovery. You can read them all below:"

Patient feedback





Carer feedback




We are acknowledged as the only specialist NHS inpatient unit for people suffering with severe ME/CFS by the British Association for CFS/ME.
We have been named as a national example of how to provide high quality care for people with persistent physical symptoms.

We have also been identified as the only NHS unit delivering integrated mental and physical inpatient treatment for patients with severe and complex persistent physical symptoms in any bodily system.

We are fully compliant with guidance on ME/CFS, IBS, and Multimorbidity as set by the National Institute for Health and Care Excellence (NICE).

You can now read about our CQC rating from the 2018 inspection.​

 

[InitialConditions]

Just to be clear: I've seen no evidence that Ella was on the NICPM ward or under the care of the trust's ME/CFS service. She was likely far too ill for either. I'm not sure about any NICPM staff involvement in her care.

 

[forestglip]

Note that a memorial thread has been set up for Ella: Ella Copley

For general discussion of the Leeds service, see this thread: United Kingdom: Leeds and York Partnership - CFS centre

 

[Sly Saint]

We are acknowledged as the only specialist NHS inpatient unit for people suffering with severe ME/CFS by the British Association for CFS/ME.

but not bothered about getting their name right? I wonder when that acknowledgement was?

We have been named as a national example of how to provide high quality care for people with persistent physical symptoms.

hmm

Trust sets example by providing quality services for people with medically unexplained symptoms - News, Events and Blogs

www.leedsandyorkpft.nhs.uk

"Page last updated: 18th Jul 2017 "

according to this website:
ME/CFS Service

ME/CFS Service - Our Services

www.leedsandyorkpft.nhs.uk

"**We are currently updating our website to provide you with the most up to date information. Thank you for your patience whilst this process is ongoing**" Page last updated: 23rd Oct 2025
still haven't got BACMEs name right.

@MEMarge could you post direct links for your second and third posts as I can't find the source.

 

[MrMagoo]

Leeds has not been accepting inpatients from outside of its area for some years now.

 

[InitialConditions]

but not bothered about getting their name right?

Not sure if you are aware, but that was BACME's original name until around 2021. They changed it to match ME/CFS nomenclature whilst retaining the 'BACME' acronym. These NHS pages often need updating.