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Hospital stays
After the hospital admissions I’ve had recently I’ve been thinking about different aspects of managing in a strange environment, and unfortunately some hospitals don’t seem all that geared up for people with complex disabilities.
A few things that I will now ask beforehand:
What are the beds like? How are they controlled? During a stay last year, I discovered that the hospital had changed the type of electric bed they had. The upshot of this was I could not reach the control panel mounted on the side as my reach is limited and I had to use my electric toothbrush as a prodding device. This year I made a point of mentioning this to the ward and they arranged for me to have a bed with a handheld control unit.
Toilet facilities? I had an ensuite bathroom a few weeks ago however the toilet was positioned in the corner next to the sink and my carer had great difficulty assisting me as she could not get where she needed to. In other hospitals, toilets can lack rails, be like a shoebox.
Is there a hoist and do I need to bring my own sling?
Pressure care mattress? I take my own mattress topper because the ones provided are air mattresses that I don’t get on with – they swallow me up! I have found this is an area that hospitals are hot on, I’m always asked if I need a special mattress before admission.
I will add more things as they come into my head and please add to my list – I think it could be really helpful if we can share any tips to making staying in hospital a better experience. In an ideal world things would happen automatically and I know it remains a hot campaigning issue but for now….
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Re: Hospital staysThis is a very valid and important idea.
With rare and progressive conditions people with Neuromuscular Disease will
inevitably face visits and stays in hospital and the experience we report is that things
do not go as simply and straightforward as they should.Yes, let us compare notes and add things to come up with a cumulative database.
"Even if you are not paranoid, it does not mean they are not out to get you!".
Re: Hospital staysWe have discussed it many times, but it does not hurt repeating that a vital
factor is Anaesthetic !This does cause a lot of confusion and problems.
Get a medic alert card and inform them in advance. Usually they
will write to your consultant.In my case they did both, but still panicked and five minutes before the op changed their mind
and decided to keep me awake throughout as they admitted they did not understand.The more information you give them the better.
"Even if you are not paranoid, it does not mean they are not out to get you!".
Re: Hospital staysToilet facilities are vital of course and there are never enough of them.
MD people often look stronger than they are and due to the rare nature of their disease
the tendency to “fall off a cliff” in regard to strength and movement is all too often
not understood.The one thing I remember vividly in the worst night of all was them finding
me trying to use the last vestige of strength to try and tie their wheeled commode
to the bed leg with shirtsleeves.Try to get en suite facilities lie Sarah.
"Even if you are not paranoid, it does not mean they are not out to get you!".
Re: Hospital staysWhen I was last in the Orthopedic ward of all place getting injections into my back they had zero disabled toilets and no grab rails in the tiny toilet. now this is a ward full of shiny new hips and knees and they cant run to a few grab bars. I asked the ward sister where the ward disabled loo was thinking not every bay would have one and she very cheekily told me that they only need to provide a comode or bed pan if patients require a 2 person help to assist toileting. I dont normally need a 2 person lift just the one but I could touch all 3 walls and door from the pan. sink was in another room.
Re: Hospital staysI thought that might be the case regarding commodes but I cannot balance properly and rarely are they the right height plus I need to be able have my feet back further underneath than they usually allow. I know others who have similar problems.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Re: Hospital stays@sar78 wrote:
I thought that might be the case regarding commodes but I cannot balance properly and rarely are they the right height plus I need to be able have my feet back further underneath than they usually allow. I know others who have similar problems.
embarrassing to explain in a public place infront of other patents but apart from the obvious of having to go behind a curtain. I cant sit even on a comode due to hips. and multi use ones aren’t all that clean. bed pans are whole different nightmare.
Re: Hospital staysI hear ya! Same here.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Re: Hospital staysIf ever I end up in hospy, it is the toiling and bathing that scare the crap outta me.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
Re: Hospital stays@amgmod wrote:
If ever I end up in hospy, it is the toiling and bathing that scare the crap outta me.
Yep – that’s probably the worst aspect of it. 5 years ago, one week in hospital and I had to use a commode behind my curtains every time I needed the toilet – and this was in a ward with 6 other patients plus any visitors who happened to be there [the “disabled” loo had a really wobbly grab rail and I wasn’t strong enough to manage; the bathlift didn’t work]. The basic necessities of life mean so much when you’re in hospital and it’s depressing when it could so easily be better.
Re: Hospital staysAnother thing some of might need to think about is having carers/PAs with us.
In the past when I have been particularly poorly and having someone who understands me close by (understands quite literally when I’m unable to communicate well) I have had a PA or my Mum stay by me at night. If it’s a side room it’s worth asking if there is a put-up bed or reclining chair available.
My stays tend to be a fair way from home so if I’m ok to go with the nurse call system, my PAs need accommodation and many big hospitals have accommodation nearby that you can reserve in advance.
It would be very stressful and uncomfortable for me to have nurses take care of washing, dressing, moving. They are always willing and hell in any way possible but it would take hours to explain everything and they simply do not have the time to devote to one patient. If my stay is respiratory related I would feel even more vulnerable without someone who was used to me Anne could see just by looking at my face and positioning that something wasn’t right. Mentally, as well it is draining to have to start afresh with a new caregiver.
Another thing to consider is parking if you drive or get driven to the hospital – this last time I enquired beforehand and was told if we could get a space in the main carpark I’d be able to park there free of charge if my blue badge was displayed. Thankfully there was a space! Parking is not at all easy at some the other hospitals I go to mind you
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Re: Hospital staysIts also worth finding out if you can park for unlimited time even with Blue badge or need an overnight permit
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