United Kingdom: Cases of people with ME/CFS with severe feeding problems, in the media

Sly Saint

Sly Saint

Senior Member (Voting Rights)
This thread is for social media and general media items about people in the United Kingdom with both ME/CFS and severe problems in achieving adequate nutrition. Please avoid speculating about the health or other personal aspects of people mentioned.

There is general discussion about severe problems with achieving adequate nutrition here: Severe difficulties with eating in ME/CFS. That thread is also a good place to post about any personal experience of tube feeding and other methods of medical assistance for feeding that you have had.

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It shouldn’t be possible to die of starvation in an NHS hospital, but that is exactly what will happen without immediate intervention for a woman in the UK who is at this moment fighting for her life in an NHS Hospital. Multiple failures by the medical system have brought her to this point.

Sami Berry is no stranger to illness or hospitals. Her initial experience came as an employee of the NHS and then as a patient living with multiple debilitating illnesses including epilepsy, Ehlers-Danlos Syndrome (EDS), and severe myalgic encephalomyelitis (ME).

Sami went into hospital last November because she could not keep any food down due to a worsening of her EDS and ME. She is vomiting repeatedly. Her body is not allowing feeds through the tube placed in her abdomen. Her blood sugar levels are dangerously low. She has lost a tremendous amount of weight. It has been almost 40 days since she had any true nutrition.

Sami is very concerned she is going into intestinal failure and is at immediate risk of joining those with severe ME and complex chronic illness who have died under the negligence of the NHS. Maeve Boothby O’Neill, Merryn Crofts, and Sophia Mirza are three recent examples.

Sami desperately needs immediate intervention from a specialist who understands her complex chronic conditions. She cannot continue as she is and she is not getting the help she needs now. She has always been an amazing advocate for herself and others. We cannot allow her to die when it is preventable with the right help. Sami is so full of life and is an amazing mom to three children. She is one of the most positive and kind people you will meet.

As of Wednesday the 8th of February following a Care Team meeting, Sami has no confidence that she will receive even the minimum of care she needs to stay alive, much less have a quality of life. While Sami has finally been given a tertiary to an expert, it is not scheduled until March 8th and will be done through private pay. Her past experience with her hospital care and what she has been told by her present consultant have made her extremely concerned that the specialist’s advice will not necessarily be taken on board and immediately implemented. She is running out of time.
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https://www.meaction.net/2023/02/22/starvinginnhshospital/
 
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Jonathan Edwards said:
If MEAction want to support PWME they would do well to produce something a bit more measured and less like tabloid journalism.
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There are certainly some technical aspects that make the request to share this with the UK media, rather pointless. Journalists will require a) an informed contact i.e someone who actually knows (in this case) the patient, their family etc) b) a validation source, e.g family member, c) an independent validation source e.g hospital, GP, Consultant etc. Asking people who don't have details of b) and c) to act as a) is a waste of time and effort, and risks reputational damage for ME/CFS advocacy.

As to the tone, it's certainly not what I would be looking for in terms of engaging either a wider discussion about NHS care of PwME, nor in recruiting some external intervention (if that is even desirable) in the individual case.
 
We just got done talking about Maeve Boothby-O'Neill's death. It's disturbing. However, no details are given. We don't know if there are any options the doctors refused to try.

Why do we never hear about this happening in America?
 
CRG said:
There are certainly some technical aspects that make the request to share this with the UK media, rather pointless. Journalists will require a) an informed contact i.e someone who actually knows (in this case) the patient, their family etc) b) a validation source, e.g family member, c) an independent validation source e.g hospital, GP, Consultant etc. Asking people who don't have details of b) and c) to act as a) is a waste of time and effort, and risks reputational damage for ME/CFS advocacy.
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MEAction do say “MEAction has been in contact with Sami and her family to ensure we are up-to-date on her care.” However I agree with @CRG we do not know if MEAction are willing or authorised to be a go between with Sami and/or her family for interested press outlets and it is not clear from this article what the hospital is not doing that they could be or what they are doing that they should not be doing, so I am not sure what the public are being asked to do other than publicise that this woman and her family are in a desperately difficult and distressing situation.

We do not have enough information to say anything about what further medical intervention might be appropriate for Sami, but as @Trish says it is not necessarily appropriate for us to have that information.

If involvement with a specific consultant is sought or Sami is seeking a particular course of treatment and Sami and/or her family feel the hospital is inappropriately obstructing this, using publicity or such as a petition or press releases might be useful to pressure the treating hospital or to try to locate a more appropriate inpatient setting, but the current article does not make this clear.

I understand this is a very emotive issue, and people desperately want to help, especially because of the cases cited where medical mismanagement may have contributed to avoidable deaths.

There is scope for general discussion about the poor level of services for people with very severe ME, and a general lack of knowledge in non specialist health care around ensuring adequate nutrition for those with very severe ME for whom oral feeding is not sufficient or safe. However this article raises a different point, about what to do when enteral feeding breaks down. In that situation there is lots to discuss around where is best to feed, what feed is used, bolus size, timing/duration of feeding, might additional medication help, is use of an intravenous line (eg Broviac/Hickman line) relevant, how much is malnutrition contributing to the current issues, etc. This is a very specialist area where it might be possible to discuss general principles but unhelpful for the uninformed to speculate on any individual’s specific needs.
 
There are of course concerns on both sides. The patient and family who have an intimate knowledge of the heath problems. The level of knowledge and expertise being unspecified in this particular situation.

And, the physicians who may, or may not have an in-depth knowledge of ME. The likelihood the doctors are well versed in ME is quite low.

In this crisis situation and others, what may be needed are cool-headed and knowledgeable advocates, perhaps for both sides. The patient and family should be heard and respected. The physicians may need to reach out to ME specialists or others more familiar with ME patient medical care.

I've seen an instance where a loved one died due to dismissal of the patient's and family's concerns. A medical work up neglected the obvious, pain complaints were ignored, and the patient died.

The first step in a medical error begins with the dismissal and disrespect of the patient and their loved ones.
 
Jonathan Edwards said:
What is not clear is what advice might be of help that is not already being implemented.
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if the tube-feeding isn't working, what would be next? Total parenteral nutrition? I agree, it would be better if the release were clear about what was being requested or what's being refused. I assume journalists would generally want to talk directly to the family, see documentation, and ask the hospital to respond before running a story.
 
dave30th said:
if the tube-feeding isn't working, what would be next? Total parenteral nutrition? I agree, it would be better if the release were clear about what was being requested or what's being refused. I assume journalists would generally want to talk directly to the family, see documentation, and ask the hospital to respond before running a story.
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TPN is an option but the reality of this problem is something even I know little about. I don't think journalists should touch this sort of story unless they are VERY well informed and that means far more than talking to family and asking the hospital to respond. The hospital is likely to be in an extremely difficult position with confidentiality issues. We often don't even have any idea whether the diagnoses are valid in such cases.

Personally, I think this is the worst way to go about supporting the ME community. If anybody actually knew what to do in these situations it would be standard practice. In a situation where nobody knows it doesn't help to create conflict.
 
RedFox said:
We just got done talking about Maeve Boothby-O'Neill's death. It's disturbing. However, no details are given. We don't know if there are any options the doctors refused to try.

Why do we never hear about this happening in America?
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dave30th said:
if the tube-feeding isn't working, what would be next? Total parenteral nutrition? I agree, it would be better if the release were clear about what was being requested or what's being refused. I assume journalists would generally want to talk directly to the family, see documentation, and ask the hospital to respond before running a story.
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Absolutely - there are major privacy concerns that have to be addressed and significant legal aspects in terms of reporting the actions of doctors and health care institutions. It's not at all clear whether the patient themselves is well enough to act with volition or whether someone is legally empowered to speak for her, significant personal information has already been given which it is not clear is held in legal form or is being shared appropriately.

The ask is to share this with media organisations, without any clear line of authority; it's almost impossible to find a UK journalist's email these days, and most outlets simply offer a 'tip line' type service where submissions are sorted by junior editorial staff, most going straight to Trash but from where stories may be traded across outlets. There's little opportunity for anyone to engage with the end story writer to evince sympathetic treatment, so the risk is either for a story binned at the first hurdle or in stoking up an intrusive process where the family at the centre of interest are just grist to the next deadline.
 
Jonathan Edwards said:
Seems to be a different person.
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yes, it definitely is. I actually heard about this completely independently. A friend of mine in Exeter--I knew her as a child when I lived in Russia, and she married an English guy--contacted me just now and sent me the link. The young woman is the daughter of her colleague.

Jonathan, can you explain the protocol for needing to be at least at a 30% incline for tube-feeding?

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This question is addressed in posts on this thread:
Severe eating difficulties in ME/CFS
 
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Thread merged

Petition: Save Alice Barrett’s life

“Exeter hospital is refusing to adapt their NG tube feeding policy for Alice's [unique] requirements. They have said she must be inclined at 30 degrees to provide nutrition for her.

Alice cannot tolerate being at this angle due to her POTs and her ME, it is having a detrimental impact. An ME specialist has informed us that it is safe to feed as low as 5 degrees if the person is lying on their right side and doesn't move.”

https://www.change.org/p/save-alice-barrett-life
 
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The thread is now open again.

This thread is for social media and general media items about people in the United Kingdom with both ME/CFS and severe problems in achieving adequate nutrition. Please avoid speculating about the health or other personal aspects of people mentioned.
 
There have been developments following the Times article this morning. From Dr Hng's fb page.
https://www.facebook.com/groups/113427572678279

Jenny Wilson
2h ·

Alice needs your help, please.

Wonford Hospital, following the publicity in The Times today, has stated that they will now consider feeding Alice at less than 30 degrees if the family can provide evidence that other patients have been successfully fed lying at about 5 degrees, which is all Alice could tolerate. They want the name of the hospital where this has been successfully done.

Is there anyone here who has experienced tube feeding while lying almost supine/prone, please, or do you know of anyone?
This is what they wish to know:
The names any other hospitals that have fed patients at a lower angle using an NG tube
- Any evidence that shows the risks are low (doesn't have to be for an ME patient)
-Provide a statement from a specialist regarding successful NG feeding of very severe ME patients at 5 degree/ flat.



Discussion is taking place on safe feeding practices.

https://aspenjournals.onlinelibrary.wiley.com/doi/full/10.1177/0148607116673053?fbclid=IwAR3RAVzc4Y6gcNB7O_Sgxj8-ElWsCp5ULhYEfxO9xf7b240f_kZxhtOb4gs#:~:text=Metheny et al,on a ventilator
 
Dr Hng's fb page - link above

Discussion is also taking place on why the hospital isn't researching this itself.

Christine Fenton

"Jenny Wilson the response to the hospital and NHS should be that they conduct a library search using their own resources to identify the feasibility of feeding at less than 30 degrees.

It’s a straightforward clinical question which, assuming the NHS has a library/digital section is a common daily practice and there should be a quick return.

The NHS will presumably have paid and qualified librarians.

Require those paid to answer these clinical questions to answer them!

This is a ‘fobbing off’ strategy.

Question: why hadn’t the Consultant already looked into this rather than standing their ground without having researched this question already?

If they have not already looked into the research themselves and based their clinical decision on their findings then what were they doing - holding out on a personal view based on past practice without taking an individual’s presentation into account?

Eminence versus evidence?

When there is a clinical guideline, I assume they are following one related to feeding, it can be deviated from for a number of reasons but the evidence base is key to making a decision to deviate.

A quick search of the NHS website returned this.


I suggest sending it to whoever asked the question and ask them to use the resources the tax payer funds for Alice.

https://library.nhs.uk/our-work/nhs-knowledge-and-library-services-awareness-week/"
 
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