DigitalDrifter
Senior Member (Voting Rights)
If money were no object, describe your perfect ME hospital. For example, I would build sound proofed rooms.
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Design Your Own ME Hospital
- Thread starter DigitalDrifter
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- hospital
Staff who have empathy and have actually been educated about ME
Samuel
Senior Member (Voting Rights)
as many services and procedures as possible done on location, not in the hospital, for housebound and bedridden. rotation on duty for this so that personnel get to see what it is like. comprehensibe training for intolerances. full funding for this. more experienced personnel upon request for the most severe.
figuring out more services that can be done on location. major program at us nih.
ambulances quiet dark. drivers trained to drive smoothly.
all personnel trained fully on the disease and sibling diseases. all means all. janitors food staff launderers. intolerances described in detail and personnel tested regularly on their knowledge of them.
place to lie down quet and dark in emergency room.
front page news if a hospital unnecessarily makes you sicker.
complex diseases require more time.
priority and favorable triage for severe and complex cases where there might be more risk of complications.
if you have backward behavior toward the disease you get fired. visibly. legal protection for hospitals that do this. risk for hospitals that do not.
criminal trials considered extremely normal for cases of mistreatment. prosecutors well versed in relevant facts adn ready to go. specific laws against misopathy.
vettiung for hospitals in accreditation renewal and similar processes to include all of the above.
figuring out more services that can be done on location. major program at us nih.
ambulances quiet dark. drivers trained to drive smoothly.
all personnel trained fully on the disease and sibling diseases. all means all. janitors food staff launderers. intolerances described in detail and personnel tested regularly on their knowledge of them.
place to lie down quet and dark in emergency room.
front page news if a hospital unnecessarily makes you sicker.
complex diseases require more time.
priority and favorable triage for severe and complex cases where there might be more risk of complications.
if you have backward behavior toward the disease you get fired. visibly. legal protection for hospitals that do this. risk for hospitals that do not.
criminal trials considered extremely normal for cases of mistreatment. prosecutors well versed in relevant facts adn ready to go. specific laws against misopathy.
vettiung for hospitals in accreditation renewal and similar processes to include all of the above.
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InitialConditions
Senior Member (Voting Rights)
BPS lot on display in the basement.
ProudActivist
Senior Member (Voting Rights)
Doctors that are able to connect across specialisms and look at the whole body not just their own part. Also that listen and take time to discuss options and information.
DigitalDrifter
Senior Member (Voting Rights)
There would be a tilt-table to diagnose those with POTS/OI.
lunarainbows
Senior Member (Voting Rights)
My perfect hospital:
When you go in, you see that the floors are carpeted (like they are in some private hospitals), so that the trolleys and sounds of people walking, are much softer or even cannot be heard. There’s a reception desk straight away so that you can speak to someone, and the staff are really nice and don’t treat you like you don’t deserve to be there.
And the corridors are large, so you don’t really have to pass close by to people, and there’s lots of room even for a recliner wheelchair and carers, again everything is carpeted so you don’t hear the clip clop of people’s loud shoes!
The lift is really big, big enough to fit in a fully recliner and tilted wheelchair with a carer behind you / next to you, and the lifts don’t have loud noises, or at least they have a button to press which gives you an option of not hearing the noises and announcements just while you’re in the lift. It can be turned back on for other people who have hearing or visual difficulties.
Then there is an abundance of single rooms - single rooms are the norm. So you just get a single room regardless of what procedure or treatment you’re in for, you get to wait there before and after. It’s so nice. And you also get to have your carers with you, without some questioning why someone is with you and why you think you are apparently a “special case”. Doctors talk to your carers without making you feel like there’s something wrong with you, when you can’t talk.
Also each room is cosy and comfortable, good temperature, doesn’t smell of strong disinfectants, and feels calming to be in. You get to have visitors when you want and need someone.
Beautiful grounds outside - which are quiet importantly, and not busy - just acres of green and grassland - with hardly any people walking around outside, so that if you would like to or are able to take a break, you can be taken for a stroll or wheelchair ride in beautiful serene surroundings. Oh, and a lake with those cute coloured fishes. Maybe a mini waterfall thing. And a bridge. That looks like a fairy garden.
And the nurses are nice, and doctors are nice, everything you need is written in your care plan and they actually read it and remember it, so don’t come barging in or turning on the light or treat you badly or raise their voice and shout or in any way just make you feel like there’s something wrong with you and that you shouldn’t be the way you are or that you shouldn’t be as ill as you are. Treated with kindness and respect.
Having someone who will just come and hold your hand in hospital, even if you can’t talk, because they know you are scared and worried while in hospital, and it’s away from your usual environment and it’s so hard being there when you have all these sensitivities.
No loud noises coming from outside your room, as they’ve put you in a quiet part of the hospital, and you don’t have to feel scared that you’ll suddenly get noises and be unable to cope.
Basically if money was no object I would want all these. Now I just wish someone can build this. Please?!?!?!
When you go in, you see that the floors are carpeted (like they are in some private hospitals), so that the trolleys and sounds of people walking, are much softer or even cannot be heard. There’s a reception desk straight away so that you can speak to someone, and the staff are really nice and don’t treat you like you don’t deserve to be there.
And the corridors are large, so you don’t really have to pass close by to people, and there’s lots of room even for a recliner wheelchair and carers, again everything is carpeted so you don’t hear the clip clop of people’s loud shoes!
The lift is really big, big enough to fit in a fully recliner and tilted wheelchair with a carer behind you / next to you, and the lifts don’t have loud noises, or at least they have a button to press which gives you an option of not hearing the noises and announcements just while you’re in the lift. It can be turned back on for other people who have hearing or visual difficulties.
Then there is an abundance of single rooms - single rooms are the norm. So you just get a single room regardless of what procedure or treatment you’re in for, you get to wait there before and after. It’s so nice. And you also get to have your carers with you, without some questioning why someone is with you and why you think you are apparently a “special case”. Doctors talk to your carers without making you feel like there’s something wrong with you, when you can’t talk.
Also each room is cosy and comfortable, good temperature, doesn’t smell of strong disinfectants, and feels calming to be in. You get to have visitors when you want and need someone.
Beautiful grounds outside - which are quiet importantly, and not busy - just acres of green and grassland - with hardly any people walking around outside, so that if you would like to or are able to take a break, you can be taken for a stroll or wheelchair ride in beautiful serene surroundings. Oh, and a lake with those cute coloured fishes. Maybe a mini waterfall thing. And a bridge. That looks like a fairy garden.
And the nurses are nice, and doctors are nice, everything you need is written in your care plan and they actually read it and remember it, so don’t come barging in or turning on the light or treat you badly or raise their voice and shout or in any way just make you feel like there’s something wrong with you and that you shouldn’t be the way you are or that you shouldn’t be as ill as you are. Treated with kindness and respect.
Having someone who will just come and hold your hand in hospital, even if you can’t talk, because they know you are scared and worried while in hospital, and it’s away from your usual environment and it’s so hard being there when you have all these sensitivities.
No loud noises coming from outside your room, as they’ve put you in a quiet part of the hospital, and you don’t have to feel scared that you’ll suddenly get noises and be unable to cope.
Basically if money was no object I would want all these. Now I just wish someone can build this. Please?!?!?!
lunarainbows
Senior Member (Voting Rights)
I forgot to add, soft mattresses, and soft blankets/duvets, and dimmable bedside lights. Dimmable light switches but the lights are not straight overhead but to the side (more like those upturned lights so the light is not shining straight in your eyes from the ceiling.
All the different investigations we need - to be done from our bed or done via portable equipment as much as possible ( eg portable ECG, blood tests). If not, everything we need (sedation, pain relief) to be given to us when undergoing tests or procedures.
Doors that don’t bang each time someone open/closes one.
All the different investigations we need - to be done from our bed or done via portable equipment as much as possible ( eg portable ECG, blood tests). If not, everything we need (sedation, pain relief) to be given to us when undergoing tests or procedures.
Doors that don’t bang each time someone open/closes one.
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Bill
Senior Member (Voting Rights)
I have never pictured a hospital per se as a place I'd ever wish to be, but I have had visions of being at a sanitorium where I'm propped outdoors in a very comfortable wooden lounge chair with nice cushions and covered with soft blankets as I drink in the sun while gazing out towards the sea from my perch on a grassy promontory.
Part of the fantasy includes having a very large and well-muscled attendant dressed with crisp whites who stands ever vigilant to act on my commands and to provide me with refreshments.
The sun is always warm. There is a light breeze and the only sounds are of nature and sea beyond.
Bill
Part of the fantasy includes having a very large and well-muscled attendant dressed with crisp whites who stands ever vigilant to act on my commands and to provide me with refreshments.
The sun is always warm. There is a light breeze and the only sounds are of nature and sea beyond.
Bill
Forbin
Senior Member (Voting Rights)
That's a pretty good description of a TB sanitorium around the turn of the 20th century. On the downside, those were usually located in pretty cold climates because cold air was thought to be good for TB.
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