The TImes 27th Feb 2023: Families fear ME patients will die in hospital care

[Countrygirl]

During the past week, I have posted about the plight of Sami Berry and Alice Barrett.

Alice has severe ME and PoTS and Sami has severe ME and EDS.

Both are unable to eat and are left to starve in hospital.

Alice is in the Wonford Hospital, Exeter, which is responsible for the death of Maeve Boothby O'Neil in 2021 because they refused to give her a feeding tube when she needed it to survive. Exactly the same is happening to Alice because they refuse to feed her unless she can sit up 30-45 degrees which she is too ill to do. She hasn't been able to eat since before Christmas and is left starving in the ward with her mother and sister caring for her 24/7. The Wonford consultant in charge is currently being inflexible and will not change their feeding protocols to adapt to the clinical needs of the patient.

Today, The Times published an article on the situation after interviewing Alice and Sami's families and Dr William Weir.

The following two links take you to the previous threads on the two young women and The Times article is below.

https://forums.phoenixrising.me/thr...-save-alice-barretts-life.89572/#post-2427010


https://forums.phoenixrising.me/thr...-to-death-in-nhs-hospital.89565/#post-2426949

The Times article:


Families fear ME patients will die in hospital care




Kat Lay - Health Editor

Alice Barrett, 25


Next image ›




The families of two women being treated in NHS hospitals fear they are at risk of dying from starvation.

Alice Barrett, 25, who has severe myalgic encephalomyelitis (ME), is being cared for by the Royal Devon and Exeter NHS Foundation Trust.

Her father, Mark, said doctors were ignoring advice from family and ME experts on how best to treat her, warning: “Alice will die. And we haven’t got much time at all.”

She is in the hospital where Maeve Boothby-O’Neill, the daughter of the Times journalist Sean O’Neill, died of ME two years ago.

Meanwhile, relatives of Sami Berry, 43, a mother of three, fear she is close to death in Royal Berkshire Hospital (RBH). She has multiple illnesses, including epilepsy, Ehlers-Danlos syndrome (EDS), and severe ME.

“I am slowly watching my wife die in front of my eyes,” Craig Berry said. “The doctors at the hospital are refusing to provide her with drugs that previously helped her regain nutritional levels.”

Sami Berry was first admitted to hospital over Christmas and New Year’s Eve because she was unable to keep any food, liquid or medication down.

Doctors fitted her with a tube that provided nutrition and drugs directly to the small intestine. She was discharged on anti-emetic drugs that could be injected into muscles, after finding that the tablet and liquid forms delivered via that tube were not helpful.

However, when those drugs ran out 12 days after discharge, community and hospital doctors refused to prescribe more. “This resulted in Sami having an epileptic seizure at the top of the stairs and falling down them, forcing her to be readmitted to RBH, where she has been since January 30,” Craig Berry said.

Campaigners fear the women are falling foul of a misconception of ME as a psychological illness, and a lack of training for NHS staff on the most severe forms of the condition. William Weir, a retired consultant in infectious diseases with a special interest in ME, said: “There’s now a lot of scientific evidence which supports the proposition that this condition has a primary physical, pathological basis.”

Weir authored a paper published last year describing five cases in which NHS hospitals had denied treatment to patients with severe ME, which can be triggered by an infection.

The campaign group ME Action said: “The complex chronic illness communities have mourned too many losses. We will not stand for one more. The NHS should and can do better.”

The RBH said: “Our clinical teams are in ongoing talks with Ms Berry and her family about her condition and most appropriate treatment. We cannot comment on the specifics to preserve patient confidentiality. However, as a trust, our highest priority is always providing safe, appropriate, and high-quality care to Ms Berry.”

The Royal Devon and Exeter NHS Foundation Trust was approached for comment. Professor Adrian Harris, the chief medical officer at the Royal Devon University Healthcare NHS Foundation Trust, said: “ME is an incredibly complex and poorly understood disease. It is recognised that there is a global lack of evidence for the safe treatment and maintenance of people living with ME. This was highlighted in recent Nice guidance, particularly when it comes to those with severe ME.

“The safety of all of our patients is of paramount importance to us. We are always focused on providing the best care and experience for all our patients, in line with national clinical guidance

 

[Gingergrrl]

Meanwhile, relatives of Sami Berry, 43, a mother of three, fear she is close to death in Royal Berkshire Hospital (RBH). She has multiple illnesses, including epilepsy, Ehlers-Danlos syndrome (EDS), and severe ME.

Can the Epilepsy Foundation get involved in her case? I assume that her doctors can all agree that epilepsy is a real medical disorder even if they do not acknowledge ME/CFS or EDS? (I apologize for the sarcasm and it is out of frustration ).

“I am slowly watching my wife die in front of my eyes,” Craig Berry said. “The doctors at the hospital are refusing to provide her with drugs that previously helped her regain nutritional levels.”

Doctors fitted her with a tube that provided nutrition and drugs directly to the small intestine. She was discharged on anti-emetic drugs that could be injected into muscles, after finding that the tablet and liquid forms delivered via that tube were not helpful. However, when those drugs ran out 12 days after discharge, community and hospital doctors refused to prescribe more. “This resulted in Sami having an epileptic seizure at the top of the stairs and falling down them, forcing her to be readmitted to RBH, where she has been since January 30,” Craig Berry said.

Why won't they continue to prescribe the anti-emetic drugs that allowed her to regain her nutritional levels? It seems like they are just being cruel for no reason.

 

[Countrygirl]

In light of Alice's case, Dr Weir is being interviewed by BBC Spotlight SW today about ME and the lack of understanding by the NHS and the programme should be aired at 6.30 pm on BBC 1. We are hoping it will be uploaded to Youtube so it can be shared.

 

[Countrygirl]

https://meassociation.org.uk/.../me-patients-risk-dying.../

MEA COMMENT
This is a distressing account of the way in which 2 women with very severe ME/CFS are being treated in hospital.

The new NICE Guideline on ME/CFS has laid down clear recommendations for people who are severely and very severely affected, including how they should be cared for by the NHS at home and when they have to be admitted hospital.

We would strongly suggest that both hospitals get in touch with ME/CFS specialists within the NHS, and with charity experts, so that appropriate care and support can be determined.
Enough is now known about this neurological condition for clinicians to be able to provide a high standard of care and management.

While individuals should receive care that is tailored to their needs, having additional diagnoses like epilepsy, PoTs, and EDS, is not uncommon for those with ME/CFS and each should be treated accordingly.
To hear of the distress from the families of Alice and Sami is deeply shocking.
We hope that The Royal Devon University Healthcare NHS Foundation Trust and The Royal Berkshire Hospital will deliver the care and support that is clearly required, and we wish both families the very best.

Dr Charles Shepherd
Trustee and Honorary Medical Adviser
Member of The NICE Guideline Committee on ME/CFS (2019-21) and The DHSC Research Working Group (2022-23).

 

[Countrygirl]

https://www.devonlive.com/news/devo...ujGuAjo7A5p_wNwuzFk2oX5idh9i3MG5eu9EAH0R0NIRU


'Desperate' Devon dad fears daughter, 25, has 'days to live'
Her sister Rosie writes "Alice is running out of options and time. Please sign this petition to help save her life."


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Alice Barrett, 25, from Devon has Severe Myalgic Encephalomyelitis (ME) (Image: Barrett family)

The family of a 25-year-old are pleading for staff at Royal Devon and Exeter Hospital to defer from NHS guidelines as their daughter's condition has declined so drastically they fear she has just days to live. Alice Barrett was a sporty and 'outgoing' university graduate, due to start her first job, when she was diagnosed with Myalgic Encephalomyelitis (ME). She has been bedbound for nearly a year.
In 2020, Alice, from Budleigh Salterton in East Devon, had just graduated from Newcastle University with a first class degree in history and was ready to start her first job in Bristol when she was diagnosed with ME. Since then she has been cared for by her mother and, since April 2022, has been bedbound as her health deteriorated.

According to her dad Mark, the family have been trying to unsuccessfully to secure an IV drip for Alice at home since September 2022. After her condition deteriorated earlier this month, Alice had a planned admission to hospital with her mother and sister sleeping on the floor beside her.

Mark said: "Out of the blue we were told that unless she came into hospital, all they could offer us was palliative care and they gave her 10 days to live."

Alice's family are 'desperately' campaigning for the NHS to defer from their nasal gastric tube feeding guidelines, which they say has resulted in their daughter eating very little since being treated at RD&E. Hospital staff are having to try and feed her through the tube while elevated at a 30 degree angle in compliance with the guidelines, but the family says that the severity of her condition means she "cannot tolerate" being at this angle for long enough.

Addressing the case, RD&E officials said the safety of all of its patients is of paramount importance and that it is always focused on providing the 'best possible care and experience for all of our patients, in line with national clinical guidance.'


Alice's loved ones meanwhile say they have consulted a leading ME specialist, Dr William Weir, who says it would be safe for Alice to be fed as low as five degrees. Mark says he'll "be amazed if she survives another week" as his daughter has eaten "so little".

Alice Barrett has been at Royal Devon and Exeter Hospital for two weeks as her condition declined significantly (Image: Barrett family)
Mark said: "Any elevation causes her heart to work so much faster to the point that it will go up to 140 plus [beats per minute]. They tried two two-hour sessions [at 30 degrees] and she crashed. All that was for 75 calories.

"The previous day, with my wife and daughter feeding her with a syringe, she'd gotten 650 calories into her.

"We've asked repeatedly for them to listen to best practice and we've said we will sign a disclaimer to take responsibility, we've asked if we could come home, with IV and a tube, and we would care for her ourselves."

ME is a multi-symptom chronic illness, and is primarily neurological, often brought on by viruses and affects the central nervous system, the immune system and causes dysfunction of cellular energy metabolism. Symptoms are varied but can include extreme fatigue, cognitive difficulties, sensory hypersensitive, heart and blood pressure issues, problems with sleeping and a range of various physical symptoms such as muscle and nerve pain, headaches, sore throat, feeling dizzy and heart palpitations.

The cause of Alice's condition is unknown but Mark says it is likely to have been brought on by a series of viruses including Epstein-Barr Virus. He says she is now classified in the 25 per cent of cases that are considered very severe.

Mark added: "Her sensitivities to light, smell, movement, touch and sound are acute. For example, everything had to be unperfumed. She has to lye in a darkened room with a face mask and ear plugs.

"With the hospital environment, obviously she's in a side room but it's noisy, you've got trollies going past.

"Anybody going in the room is very difficult for Alice to cope with. [She] crashes completely if overstimulated.

"She's not in a condition to talk to anybody.

The family would like to thank the nursing staff on the ward who have been very considerate and mindful of ME in their care for Alice.

The National Institute for Health and Care Excellence (NICE) provides guidelines for health and care of people with a variety of conditions and were last updated in November 2022. Under section 1.17.2 for the guidance regarding ME, it says that the condition may mean that people "cannot communicate without support and may need to choose someone to be their advocate and communicate for them".

Prior to becoming ill, the 25-year-old led a very active life as a talented athlete and hockey player, having formerly represented Devon in hurdles at a county level. She loves to travel and also has a passion for politics and the environment, with "a very strong social conscience".

Mark said: "She took an interest in people who were not being treated properly. She was a keen environmentalist.

"She was a great hurdler, represented Devon, hockey player. Very outgoing and social."

The Barrett family has rallied round Alice but admit it has taken a toll. In October, her older sister Rosie, 27, gave up her job as an operations director for an overseas company to help her parents care for Alice.


The family has set up a petition which has already amassed over 10,000 signatures to have Alice fed at a five degree angle while being treated at the RD&E. Her sister Rosie writes "Alice is running out of options and time. Please sign this petition to help save her life."

Professor Adrian Harris, chief medical officer at the Royal Devon University NHS Foundation Trust, said: “Myalgic Encephalomyelitis (ME) is an incredibly complex and poorly understood disease. It is recognised that there is a global lack of evidence for the safe treatment and maintenance of people living with ME. This was highlighted in recent NICE guidance, particularly when it comes to those with severe ME.

“The safety of all of our patients is of paramount importance to us. We are always focused on providing the best possible care and experience for all of our patients, in line with national clinical guidance.”

The petition can be found here.