What needs to change to ensure better care for people with ME/CFS with feeding difficulties?

Kitty said:
Part of the problem seems to be the use of shadowy categories that are both explicit and not. Some people are put into them, explicitly or not, when guidelines don't provide answers.

The danger is that this allows healthcare to do nothing. If a system's based on guidelines and there's no guideline, there's no responsibility.

That's palpably indefensible, but it'll happen by default if no one stops to think about what's going on in front of them, or if no one is in charge, or if people don't know what they can do in guideline-free zones and common sense has been regulated out of the system.
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I guess I agree with all of this except the ‘common sense’ part. Common sense doesn’t have to be good. There is a sense about us that they share and it’s fatal to our hopes of treatment.
 
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Kitty said:
The danger is that this allows healthcare to do nothing. If a system's based on guidelines and there's no guideline, there's no responsibility.
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Yes, except it looks as if we now have a situation with too many guidelines from which people can pick and choose.

I don't buy the argument that there are no resources for dealing with people with severe ME/CFS. In Exeter a physician with knowledge of ME/CFS was there. The facilities and technology for feeding support existed. A bed was found. And so on. It looks very much as if quasi-guidelines were used to deny care.
 
Jonathan Edwards said:
I don't buy the argument that there are no resources for dealing with people with severe ME/CFS.
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No, absolutely not. But whether the problem is to do with the guidelines themselves or how they're applied, it has to be approached transparently.

Denying nutrition when there are ways to supply it isn't an unfortunate omission, or an unexpected failure, or outside of what doctors can reasonably control. It's a considered clinical decision with a potentially fatal outcome. It's not hard for anyone to see why the evidence for it shouldn't be sought in the long grass on the outskirts of neighbouring guidelines.
 
A great example of how our health care system fails chronically sick people: My Jtube clogged. I can't get food or any supplements or meds into it or into me. And many of these meds cannot be skipped, not for a day, definitely not for a week.

It's Saturday so I'll have to call the hospital on Monday and get an appointment mid next week at the soonest if my mother begs them. A Jtube breaking or clogging is an emergency - it means a person cannot eat or take meds.

Yet our system treats it like a casual, routine issue that can be dealt with whenever. Most people treat dogs better than this. You would not leave a dog stuck in a house with no food or water.

This has caused me profound stress over the last 8 years depending on something so fragile, seeming to always lean on catastrophe. Something I depend on for life that our health care system regards as trivial and unimportant.

PS. As if part of some divine intervention, the clog pushed through the end of the Jtube as i was taking the photograph for this piece of writing, pushing on the syringe putting pressure on the clog. As I’ve been doing for over 24 hours now over and over again and only met with absolute resistance - nothing would move through. Ha! I think I’m giong to pump water through the Jtube as fast as i can tolerate for the rest of the day and maybe flush some citric acid solution through the tube too. Tiny miracles… But the point is that my Jtube could clog or leak or break or come all the way out of my stomach from catching on something at any time and I would have to go days or even a week without food or meds. Which is unconscionable. And not only is that a dire threat to my health, but causes me pretty serious stress all the time.

Love,
Whitney
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https://www.whitneydafoe.com/mecfs/?post=health-care-failings
 
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