I couldn't agree more with what is said in this article. During my hospital stay earlier this year, once my procedures were done to widen my bile duct and remove my gallstone, I would say my condition deteriorated due to sleep deprivation. https://www.nytimes.com/2018/12/03/upshot/why-hospitals-should-let-you-sleep.html
When I said to the doctors I wasnt getting sleep on an nhs ward, bright fluorescent light on till midnight, old ladies toileting through the night, nurses changing cannula at 6 am because the day staff would be too busy and then all go from 6am onwards as people wake and lights go on, I was told that hospitals weren’t the place to expect sleep. Not in a horrible way just matter of fact way. NHs hospitals are about emergency care on a shoe strong budget, not about deeper levels of caring and support for well being. It’s deeply ironic that such an important thing to well being, comfort and mental health is still disregarded. I saw this was hospital in the USA not UK but it’s a topic here too
It's a huge problem for all patients, for us and others who are chronically ill, it means that a stay in hospital really depletes your energy rather than building it up.
I hope I never have a long hospital stay because part of their 'recovery' protocol is making you get up and walk. This can be detrimental for the ME patient and autonomic issues if hospital staff don't understand the illness, and they most likely won't.
In the U.K. hospitals are doing this initiative called pyjama day where staff wear them to demonstrate that they don’t let people lie around all day...
I'd much prefer they just did their job. They don't let the patient lie around all day - even if that's what they might need. Since when and why did the patient become the enemy who must be made better despite themselves? What about mutual respect and consideration? Some people should bear in mind that without patients, or when they're all queuing in the IAPT clinic, there won't be jobs. Then they'll be joining us in our dealings with Jobcentre Plus (Benefits Agency/DWP).
I believe they have data showing that patients who move more in some conditions, particularly surgery/injury in an otherwise healthy person, are doing better, but I'm not sure it isn't a correlation/ causation mistake. I haven't seen the studies. I doubt they considered people with ME and other conditions where moving or exertion is detrimental.
I do believe this is true, for some patients. I naffs me off is the them and us tone. I don't/won't tolerate being pushed or dictated too. I don't see why anyone should. Patient/carer relationships be that doctor or nurses, should be based on mutual respect and trust - a working, equal partnership.