Stay in emergency hospital ignorance of some staff towards MS

Everyday living
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Sunday morning found myself carted off to hospital with very high BP and a UTI that would not shift.

Long story turned out after an ECG and a blood test i had at some point a heart attack so still here undertaking tests. The reason I am writing this is I am horrified at the shear lack of knowledge of people with MS by some of the nurses I met in accident and emergency department.

Asking for a commode as i was desperate for a pee, can you not stand on your own. No i have to hold on to something, oh so you cant do it yourself I cant help you i cant hold you, you will have to have a bed pan. I told her i cant as i cannot use one, as i have water retention and i need to rock forward. why she said well you can imagine the conversation. Eventually i had a new nurse i asked for commode she got me one and between us we were like a machine i told her my right leg was strong i could use it to stand if she could make sure i was able to swivel to left and get on it worked and done safely. But two nurses in my time in A&e FLATLY refused to help me with the commode.

when i did try and pee in the bed pan i had to hold on to the bed rail they are high up. whilst doing so it collapsed and i went tumbling to the floor and now bear the bruises.

when i was talking to one who did help she had no idea that sometimes you cant feel we have peed. so when i asked her have i done anything she didnt realise that.

The attitude to me by some was appalling as though i was making it all up. i left A&E feeling very deflated.

in the ward some have an idea but many dont. they think if you can stand on one leg you can walk to the toilet. it doesnt work that way. at home i use a rollator as to try and walk safely without is not possible.

A ward like cardiology didnt even have a WALKING FRAME. NOPE. SO FOR several days i am more and more bed bound and getting weaker as i am not doing my normal walking. i could try with a stick but my left side since the attack on sunday has made me so much weaker. i am worried i will fall.

I think staff should all be trained in different areas of disability. all wards should have access to standard equipment like a walking aid. there is another lady opposite me who needs one.

i have kept away from covid for 2 years, i have come in here and now my ward is being isolated as one patient who has been here 7 days tested positive. So now until i have so many days clear tests I cant finish my tests.

Mind you one good thing has come of this as one nurse is lovely and i have been teaching her all about our specific needs and she had no idea how MS AFFECTED US, so i at least have managed to changed someone who hopefullly will be able to pass on her new knowledge to colleagues.

TAKE CARE what an adventure i have been on. lol. Lets hope i dont develop the dreaded covid i have enough to put up with including a UTI which is still not fully gone yet lol.

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You are obviously aware you need to keep moving. On my only hospitalisation (when I was diagnosed) I ended up in two different wards the first was primarily for people with broken femurs. They were well versed in the importance of getting people back on their feet and the second was the bed and breakfast ward where fit people came in for their operations the next day (so no breakfast for them).
My mother has had a few stays in hospital and it is interesting to see how they actually work and the different types of patients and staff. There are some things that are carefully assessed (such as bed sores) and other scores to identify risk. My favourite was the picture of leaves above patients beds to indicate fall risk.
I think all you can do is attempt to take an interest and look at things from their side too.
But do keep as active as you can (not easy in hospital)

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so sorry you have had this experiance but i have always found this to be the case most do not have a clue at all…i have been on a neuro ward where there were some very ill and badly disabled people there and i saw some terrible things,food was left at the end of the bed wehn some patients could not even sit up or move much,the food went cold and was cleared away.so the poor patients that could not get to their food was not fed.I had to help feed one lady.Its disgusting just how ignorant they are,and in 30 years of me having ms its only got worse too.hope you recover soon.i avoid going to hospital when possible,as even when you have to go for tests they think everyones able bodied so theres no special equiptment for the disabled unless you arrange it before you go.Its hard been disabled but whats even harder to cope with is the lack of awareness in the hospitals.

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I am so sorry to hear that you are poorly and hope you will be back at home soon.
When I had Covid and a UTI I was admitted to hospital and I was appalled at the ignorance and lack of help I received.
For example when I asked for a commode I was told but you have recently used one and I was made to wait thirty minutes!
Despite my daughter delivering my rollator to the ward I was not allowed to use it to the bathroom as staff did not have the time to accompany me. I did not need staff to help me but health and safety rules would be broken.
I asked a nurse to help me alter my bed/pillows as I continually kept sliding down the bed. Answer it is not the bed but your right sided weakness and she walked off!
The list is endless after eight days I asked the ward doctor if I could go home. I needed transport and was finally discharged at 10.15 pm!
I was too weak to use the stairs and had to sleep on the sofa for a few days but that was preferable to being in hospital.
Take care
Sue

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OMG Crazy_Chick! What an awful experience and I’m so sorry to hear you’ve been so unwell. I do hope you are able to get your tests done and get discharged home quickly.

Good on you for trying to educate the nursing staff, but yes, really they should already be well versed in how various conditions can affect patients and have the appropriate equipment available. If you feel up to it, I’d make a complaint once you are home again!

Thinking of you and wishing you well.
Willowtree x

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Hi CC

I live in the same area as you, so unless you were away from home, I know the local hospitals, and am sad to say I am not surprised. Last time I was in they said my power hair had to stay in the day room, long way down a corridor which I could not get to! Suffice to say my family moved the chair by my bed and my power hair quickly was put there.

As for having no understanding of MS I totally agree with you.

Sorry to hear you are unwell and wishing you a speedy recovery to get you back home.

Pam x

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Sorry should say power chair not power hair!

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Not even remotely the same, but I’ve noticed that when I go to the local hospital for MRI’s and ask for a wheelchair and escort to Radiology, most of the staff begin treating me like I’ve suddenly grown 2 heads. There’s only ever been one person who saw me walking in with my cane and came to me immediately with a chair and said “It looks like you can use this.”

If I don’t ask for a chair, the escort (mandatory now due to Covid) takes off like a bat out of h*ll and doesn’t notice that I’m struggling to keep up.

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I am sorry that you are having a rough time. Get better soon.

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Hello CC, oh my word, what a nightmare for you! But I have read so many times, how many MSers are in hospital with stories like your’s.

We appreciate all staff can’t know about all disabilities, but surely some knowledge/training should be given for mobility problems…there will be many, many elderly and infirm patients with these…let alone us.

I wish you all the best and send love
Boudsxx

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thanks to all responses its very interesting.
UPDATE.
My daughter brought my rollator in wednesday afternoon just as we had gone into covid lockdown.

I have still not had a little walk even though they have said they will get me up to walk to the toilet.

I am shocked now at how quick my mobility is decreasing and its scary.

i made a suggestion the bed next to the toilet is now empty because of the covid lockdown why not swap me round i have about 4 steps with rollator and i am in toilet. Now i wonder how long it will be before i get moved.

i woke up in a full meltdown. I dont know what is happening, when i will have my angigram which means i have to go to another hospital. If there is a day then i am at the end of the list because of testing for covid first. This means i could be stuck over there and not go back here, i have no idea what is going to happen to me. i live on my own. Before i came here i could get out of bed onto my commode now i can barely move. I had no idea mobility could go so fast its scary.

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Hi CC
I was in a similar position but once out of hospital I was lucky enough to have some physiotherapy. Not arranged by the hospital but through my GP.

There was quite a long wait to see a neuro physiotherapist and I was shocked at how weak my legs had become. My illness had exacerbated my right sided weakness. However physio once a week for seven weeks combined with exercises at home every other day I did make some improvement. It took huge effort to exercise at home (on bed) but was worth it.

Concentrate on getting well and then hopefully you will be able to sort out your mobility.

By the way I am one of the oldest members on this site!
Wishing you well
Sue xx

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Sounds ghastly. It shocks me when hospitals make little or no effort to keep inpatients on the move, but I hear it so often.

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Oh goodness gracious me what a horrid experience for you - do hope you are feeling so much better and out of isolation. I had a little trip out yesterday to the Wheelchair Assessment Centre for my NHS chair to be modified!! Ha what a laugh that turned out to be. To start with my legs had to be tied together with a scarf to stop them falling off the footrest but when the technician had modified it the wheelchair got stuck on the ramp into the ambulance. So it was an exhausting morning out for me with no satisfactory outcome but I must admit all the staff

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Oh sweetheart, this is truly awful for you.

Thinking of you and hope you get moved to that better bed area.
Boudsxx

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