Why can't hospital outpatient clinics cope with patients who can't sit for long in the waiting room? Or can they?

[Haveyoutriedyoga]

What about taking one of these foldable stools to put our feet up?

And a pump up neck cushion for support and a folding gel cushion (the latter I take everywhere!)

And the kitchen sink of course...

Eta: i do think the problem needs solving on a bigger level than us individually putting plasters on it, I wonder how. Sometimes individuals can influence their local hospital by educating them but that takes a lot of effort.

Also, little aids like this won't help with more moderate-severe needs

 

[Haveyoutriedyoga]

that looks like a great chair! do you have the actual link please i may want to buy it

#WEJOY Camping Chairs Folding Recliner Chair Adjustable with Detachable Footrest Headrest Cupholder Pocket Lightweight Portable Reclining Camp Chair Fold up Chair for Outdoor Beach Garden Cyan https://amzn.eu/d/9DLqCNv

Not an endorsement

 

[Haveyoutriedyoga]

Eta: i do think the problem needs solving on a bigger level than us individually putting plasters on it, I wonder how. Sometimes individuals can influence their local hospital by educating them but that takes a lot of effort.

More on this - it would be good to know more about examples of where a department or hospital got it right, because it's easier to spread good practice when there are existing examples. Also whether any POTS or dysautonomia charities have any info on campaigns about this, and, as mentioned, whether any other illnesses have similar issues.

On of the barriers is that when you're in a hospital, especially A&E or for a procedure, they often don't care about you having a bad time as long as your surgical/'acute'/immediately life threatening needs are met, they often don't care that a condition they see as non critical might deteriorate, because nothing must get in the way of them doing busy hospital business (I.e. inconvenience *them* or interfere with their 'efficiency').

My elderly grandparent just spent three unplanned days in hospital, was struggling with the noise and business and constant changing over of patients through the night, barely getting any sleep (and really needing it given the circumstances) they said to him that it's a busy ward and they have to go about their business and that's the way it is. I know he won't deteriorate in the same way as pwME, but the same argument will be used and be hard to overcome even if you get them to believe in ME.

 

[bobbler]

To be fair I read an article (non ME) from a wheelchair user describing their experiences when they had cancer.

The cancer ward he was staying on didn’t have a disabled toilet or bathroom and other facilities you’d expect eg different height benches or couches to make them accessible

which seemed shocking in itself when you think of it as a workplace or somewhere someone is having to ‘stay’ and hotel or office regulations

and then when you think how for some cancers most might be older and might be so ill at some point either due to the illness or the treatment that they needed a wheelchair. It can’t be helpful for the staff

 

[bobbler]

There just doesn't seem to be much consideration for the human element at all. Something they just never got around to thinking about and it's been this way for so long that no one can find the wit to point out how absurd it is. No doubt the usual response is the same we are familiar with: we've always done things this way.

Hospitals and clinics both are built to be utilitarian, but if androids were involved on both sides of the job. I remember one time going to see my GP who works in a medium-sized clinic. Before she had an OK office with a window, something you'd maybe give to lower-level management in a typical small business office. But this time she worked out of what is basically a closet. Just a tiny room with no window, barely any ventilation and exactly zero consideration to pretend that this is a place where humans do anything. A dreadful place to be in for 10 minutes, I can barely imagine spending 10-12h working there.

No wonder most HCPs are so unhappy. Those are worse working conditions than almost any other entry-level job outside of things like meat-packing or very dirty jobs that pay minimum wage. The facilities are built to process as many cases and equipment as possible, but there isn't any consideration that the HCPs are human as well, no more than that the patients also happen to be. I don't know who makes decisions at this level, what their expertise is, though it must vary a lot since they all seem to be made locally and independently. There is no human design or architecture involved, that's for sure. It's a warehouse mentality. Bare everything, dreadful environment that screams: you don't want to be here a minute more than you have to. But they also don't want to provide the means for people to stay away and only get there on time. Go figure what they even want, they don't want to think about it and no one makes them.

Which shows just how empty the entire biopsychosocial ideology is. It has captured the medical profession over the last few decades, and has made zero impact on one of the easiest 'holistic' thing that could be done to improve this aspect of health care. It's all empty MBA slogans and demotivational posters over there.

Has anyone ever been to the ‘facilities management’ or similar department of a large organisation?

it’s like walking back in time to the male heavy offices. Where people still often takes lunch at the same time every day And normally somewhere off site or in a basement. Talk about siloed.

Having meetings to discuss needs in a project on a project management tracker can only get so far if it’s an area that hasn’t yet had that revolution where user-insight and other aspects starts to be built in and valued as part of the model.

but also it’s that day in day out seeing things or not being there that would take so long to explain vs if they were on the wards or in those offices and had lots of disabled people on the team and in management

Maybe I'm wrong and those in hospitals now recruit nurses, patients and OTs that they train to be on their design team..

for some reason our knowledge even on our own issues isn’t valued (and the critical thinking and curiosity not being 'the norm/majority' can mean you have as a skillset)

I admire it in some ways (you've gotta laugh or you'd cry in others) but I remember two new senior managers doing a news post where I worked saying they’d each taken a different type of wheelchair for the day to see how they got on round all the buildings and area

I guess in theory it’s at least going to give some empathy but different to when you are going to miss a meeting (and actually have a full day of real things, not just a day to wheel about) and it’s years on end and did they do it for the journey from home too?

 

[JemPD]

thanks for the link

On of the barriers is that when you're in a hospital, especially A&E or for a procedure, they often don't care about you having a bad time as long as your surgical/'acute'/immediately life threatening needs are met, they often don't care that a condition they see as non critical might deteriorate, because nothing must get in the way of them doing busy hospital business (I.e. inconvenience *them* or interfere with their 'efficiency').

absolutely

in case it helps anyone i take a stool like this one (dont know if it this exact one as i bought elsewhere 20 yrs ago, but it looks like this ) it fits in my wheelchair bag. plus a cushion
Folding Handy Step Stool - For Bathroom, Kitchen, Toilet, Office, Home Storage Collapsible Multi Use | One Step Fold Plastic Stool, Portable Footstool, Holds Upto 80kg : Amazon.co.uk: Home & Kitchen

 

[MrMagoo]

As an aside: If anyone needs a more robust version of this kind of portable chair (perhaps not for hospital, but maybe the garden), search for fishing bed chairs. You can lie completely flat if need be. I spent an hour on a borrowed one whilst I waited for someone who's been delayed in traffic, and they're definitely comfy!

I have a zero-gravity chair for gardens, it’s lovely and comfy! Not light to carry, though.

 

[MrMagoo]

Has anyone ever been to the ‘facilities management’ or similar department of a large organisation?

it’s like walking back in time to the male heavy offices. Where people still often takes lunch at the same time every day And normally somewhere off site or in a basement. Talk about siloed.

Having meetings to discuss needs in a project on a project management tracker can only get so far if it’s an area that hasn’t yet had that revolution where user-insight and other aspects starts to be built in and valued as part of the model.

but also it’s that day in day out seeing things or not being there that would take so long to explain vs if they were on the wards or in those offices and had lots of disabled people on the team and in management

Maybe I'm wrong and those in hospitals now recruit nurses, patients and OTs that they train to be on their design team..

for some reason our knowledge even on our own issues isn’t valued (and the critical thinking and curiosity not being 'the norm/majority' can mean you have as a skillset)

I admire it in some ways (you've gotta laugh or you'd cry in others) but I remember two new senior managers doing a news post where I worked saying they’d each taken a different type of wheelchair for the day to see how they got on round all the buildings and area

I guess in theory it’s at least going to give some empathy but different to when you are going to miss a meeting (and actually have a full day of real things, not just a day to wheel about) and it’s years on end and did they do it for the journey from home too?

I have worked with some amazing Facilities Management teams. Like many “back office” functions, nobody notices them until something goes wrong. They don’t have the final say on things like budget and spend, that’s the top brass. It’s very rare they are given “carte-Blanche” to actually design things, replace things etc.
Howpitals recruit a nurse, OT etc on the design team in the way certain researchers recruit pwME PPI pets to green-light their preconceived ideas.

 

[ukxmrv]

What about taking one of these foldable stools to put our feet up?

And a pump up neck cushion for support and a folding gel cushion (the latter I take everywhere!)

And the kitchen sink of course...

Eta: i do think the problem needs solving on a bigger level than us individually putting plasters on it, I wonder how. Sometimes individuals can influence their local hospital by educating them but that takes a lot of effort.

Also, little aids like this won't help with more moderate-severe needs

I have a folding stool that I take with me if not using a wheelchair. It's painful for me to sit using one for long periods of time. I also have blow up feet supports but the bigger ones are too heavy for me to to carry.

Due to the cramped conditions in Waiting Rooms sitting with the folding footrest and legs out stretched makes it hard for people to get past me. The ideal seating places are taken up quickly and there is a lot of competition for them. Sometimes I will be asked by the staff to stop using it.

I spoke about this previously I think. I was assaulted by a Security Guard at A&E in a London hospital after trying to lie down across some seats. There was room to do this. He has assumed I was drunk. This was years ago. I made a formal complaint after by letter as I was too sick and weak at the time. There was no A&E manager at the time. They couldn't fill the position. There were no other staff 'front of house' at that time apart from an occasional nurse in reception and a huge queue.