I trust they must because the sitting and swallowing and feeding rehab unwittingly inflicted upon Miss Boothby O'Neill was a cruel and unusual punishment to which she submitted with deference, and excruciated grace, in good faith ( that she could be helped ) unable to insist - being too dependent - unable to insist that increases in small exertions were eroding her last margin to swallow and digest more ( and more often, and more ingredients ) than she safely could, her innards were failing, not just her muscle stamina, so Simon Wessely led a U-turn after NG206 saying we don't do fixed increases any more
A hospital ( or a special commercial laboratory ) can make up a bespoke medicine without an ingredient that bothers a patient, the hospital ( or GP ) only has to ask on the prescription. Has N.I.C.E asked what was in the feed that upset her gastro-intestinal tract ? Is N.I.C.E preparing to indicate a specific break with convention in cases of M.E when the rehab theory still insists that no such accomodation be made while applying fixable increases instead ?
I can't now trace how the Larun review and its ancient references led to speech and language and nutrition and dietetic "therapy" (.a.k.a."rehab ) applying increases likewise to a malnutrition they know they do not understand and also applying the suspension of alternative feeds designed for people who get jip from the usual feeds. N.I.C.E can trace it, they have a long list of alternative feeds, shows the ingredients and costs and the conditions needing special formulas. These are bespoke feeds
for instance:
https://bnf.nice.org.uk/borderline-substances/oral-nutrition/
> restrictive-therapeutic-diet/
> foods-for-special-diets/
> specialised-formulas/specialised-formulas-for-specific-clinical-conditions/
> nutritional-supplements-non-disease-specific/nutritional-supplements-more-than-1-kcal-ml-and-less-than-5-g-protein-100-ml/
But first - to prevent future deaths - N.I.C.E must break with and break the convention still being mishandlled and inappropriately applied to some people with ME / CFS as if its a professional lifestyle choice, citing N.I.C.E or Cochrane when it suits as if its mandatory, but when it doesn't suit both N.I.C.E andd Cochrane are flung out the window (think endometriosis), as its only guidance, the doctor must have margin to choose, true, but authority must set bounds upon the discretion allowed its officers, the police know this, the doctors know this, so do N,I.C.E and Cochrane being the authorities that can be cited or disdained
Pity the child exposed to the 2 mutually exclusive clashing theories with N.I.C.E saying Cochrane's theory is putting the child at risk ( section 6 I think ) so Cochranes said no it is N.I.C.E theory putting the child at risk ( of deconditioning ... see BacME ? ) and unfortinately the Judge was confined to disputes between parents and doctors over some unfortunate child, as if there is a lot of it about just because of one case history alleging that the deceased father had indoctrinated his daughter with a false illness belief
I am so very sad
THese cases should not come to court they shuld be multi-disciplined before it comes to that. Happily the British Psychological Society is setting a new standard, so maybe it will cover misdirected rehab, and prevent furure deaths
Due to the rehab model still being indiscriminately and inconsistently and arbitrarily ( in undisciplned quarters ) applied to any body-system that ails - Miss Boothby O'Neill was not only pushed a mite beyond limits and endurance even while bedridden - she was also, on the same rehab model, plainly, in my view, denied what she could have been offered, the full range of available alternative feeds listed on N.I.C.E for people with conditions that cause them intolerable problems with the usual feeds, but as she was made an exception, inexplicably, no-one could offer her an alternative to the feed that gave her too much jip, even though her local dietician sets the guide at BAPEN
