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

Binkie4 said:
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
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I asked Jenny and she said this could be shared publicly (so I've shared to my Facebook page)
 
From Dr Hng's fb page, Jenny Wilson

Adam Broderick has agreed to record the interview with Dr Weir and upload it to utube and fb.

The interview should take place at 3.30 pm today, and it is expected to be shown on Spotlight SW at 6.30pm and maybe 10.30pm.
 
Trial By Error: After Maeve Boothby O’Neill’s Death, More Concerns About Severe ME Patients at NHS Hospitals

"I recently wrote an article for Codastory.com about Maeve Boothby O’Neill, who died from complications of severe ME in October, 2021, after three separate admissions to her local National Health Service hospital in Exeter, England. During her hospital stays, she and her family fought with the hospital over the need for tube-feeding or an alternate approach called total parenteral nutrition that bypasses the digestive system altogether.

Conflicts involving malnutrition are also at the crux of a dispute involving Alice Barrett, a current patient in the same facility, the Royal Devon and Exeter Hospital. The issue is the hospital’s tube-feeding policy, which requires patients to be able to sit up at an incline of at least 30% in order to minimize the risk of complications like aspiration pneumonia. This policy conforms to standard medical practice."

https://www.virology.ws/2023/02/28/...ns-about-severe-me-patients-at-nhs-hospitals/
 
If they're that concerned about risk of aspiration lying flat, then why won't the team consider nasojejunal feeding? That's well established to run continuously at low flow overnight, with the patient flat (eg in older children or adults with CF). We have loads of patients with shorter term NJTs or long-term gastrostomies, GJTs or direct jejunostomies (years).

From Nutritional Care in Children with Cystic Fibrosis (2023, Nutrients) —

When the oral caloric intake is not sufficient to reach the anthropometric nutritional goals, supplemental enteral feeding should be initiated to improve growth and nutritional status. There are various devices, formulas, and timing for feeding enterically; the approach is lastly determined by the patient’s preference and his clinical status. Among the devices for enteral nutrition, gastrostomy tubes are the most frequently used, especially for long term enteral feeding. While feeds may be administered as a bolus during the day, or at a continuous rate overnight, the CFF recommends the latter, in order to encourage the consumption of high-energy meals during the day.
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According to the CFF consensus, the enteral feeding should provide 30–65% of the total estimated calorie and nutrient needs. The Italian Ministry of Health recommends that 50% of the total calories should be consumed during the day and the remaining 50% at night. If comorbidities, such as gastroesophageal reflux disease, gastroparesis or pancreatitis are present, enteral feeds should be introduced directly into the jejunum, via jejunal or gastro-jejunal tubes. In this case, continuous infusions are required.
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I just don't understand this. What is the thinking? If this is the same Trust, surely they realise that they're already about to come in for some real criticism. It's really not going to go well for them if Maeve's inquest resumes and there is another high profile case with identical circumstances.
 
SNT Gatchaman said:
If they're that concerned about risk of aspiration lying flat, then why won't the team consider nasojejunal feeding? That's well established to run continuously at low flow overnight, with the patient flat (eg in older children or adults with CF). We have loads of patients with shorter term NJTs or long-term gastrostomies, GJTs or direct jejunostomies (years).
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Is there a way this information can be sent to the doctors involved?
 
On the face of it, from a short media clip, things look pretty simple. It's hard to understand why the doctors in charge don't apply the approach that @SNT Gatchaman sets out above.

Rosie Barrett's support of her sister is so staunch. I assume Alice's family have tried every sort of other possible approach before going to the media. I hope the media attention brings some more creative thinking on the part of the hospital to solve whatever problems they think are preventing assisted feeding.
 
SNT Gatchaman said:
If they're that concerned about risk of aspiration lying flat, then why won't the team consider nasojejunal feeding? That's well established to run continuously at low flow overnight, with the patient flat (eg in older children or adults with CF). We have loads of patients with shorter term NJTs or long-term gastrostomies, GJTs or direct jejunostomies (years).

From Nutritional Care in Children with Cystic Fibrosis (2023, Nutrients) —





I just don't understand this. What is the thinking? If this is the same Trust, surely they realise that they're already about to come in for some real criticism. It's really not going to go well for them if Maeve's inquest resumes and there is another high profile case with identical circumstances.
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The 'what happens when other diseases become similarly debilitating' was something I wondered too as highly relevant.

Agree with this and @Hutan 's comment
 
The hospital in the utube clip ( Royal Devon and Exeter) say they are relying on NICE guidelines and "the expertise of national specialists" for advice.

I wonder who the national specialists are and whether alternative ways of treating ME patients could be conveyed to them?
 
Jonathan Edwards said:
I don't have experience of the details of options and risks but it does appear that the healthcare professionals are making things more difficult than necessary and potentially putting the patient at much greater risk.
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In 2018 this issue of feeding and risk was made public via an excellent stakeholder petition to the NICE review by the 25% Group.
I found it today and have attached here it as it is buried within the extensive records of stakeholder engagement for NICE. I also am aware that NICE requested a nurse expert in NG feeding to give evidence. One was found, a paediatric nurse who had worked in our Eastern area. Not sure why her expertise was not used on Guideline Development Committee?
 
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