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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To have discharged myself?

19 replies

Peppermintpatty56 · 09/12/2024 14:05

I was sent to A&E on Friday after having a chest infection for over a week. I'd had a course of antibiotics and it had worsened instead of improved. I have a rare neuromuscular condition and I'm immunocompromised.

It was found I had a double lung infection with a viral cause and therefore antibiotics wouldn't help. I had a chest X-ray, bloods, ECG and saw a neurologist because of my condition. I was admitted for regular nebulisers and monitoring. That's when I it went down hill really. I was put on a trolley originally as my condition means that's my muscles fatigue easily including my breathing and swallowing muscles. It can be really dangerous and the risk is increased with heat, tiredness and illness. It got really busy though so they moved me off the trolley. I was put on a hard chair. I moved to a slightly softer chair and the nurse had a go at me- as my disability isn't obvious, I tired to explain but she literally shouted for me to sit back down and walked off.
I was told it was another 24 hour wait for a bed. I'd been there 12 hours already at this point. I was really concerned about the effect of not sleeping on my already flaring condition and my neuro team who are based at that hospital had left by this point so couldn't advocate for me. I felt awful.
I discharged myself because I didn't feel safe. I'd had no planned monitoring or nebulisers at this point.
Was I unreasonable to go? Part of me thinks I did the right thing as I have been able to rest at home and I knew I didn't need antibiotics or anything and had had all the bloods/x/rays.

However I am concerned I'm not really recovering.

I know, due to a lot of first hand experience, that the nhs is broken. But when I saw what it was like on Friday it was a shock. They're were people lying in the gaps between chairs 😞

OP posts:
Sansan18 · 09/12/2024 14:14

It's like a war zone and I'm sure it will get worse over Christmas.
You didn't have much choice but I wouldn't allow myself to be shouted at by anyone.

Ovalframes · 09/12/2024 14:23

That sounds awful. Do you have MG? If you have any way of contacting your consultant/ specialist nurses/ or the secretary, do that now and explain exactly what has happened. Hopefully they can step in.

Peppermintpatty56 · 09/12/2024 14:24

I know, It happened so fast I didn't have chance to respond as I wanted to. I tried to approach her at the staff base and she just walked off! I can't imagine the levels of stress that goes with working in a&e right now. But there's no need to shout at people who don't deserve it.

OP posts:
PickledPurplePickle · 09/12/2024 14:25

If you’re not improving can you go to your GP and ask them to send you to hospital?

Peppermintpatty56 · 09/12/2024 14:28

Ovalframes · 09/12/2024 14:23

That sounds awful. Do you have MG? If you have any way of contacting your consultant/ specialist nurses/ or the secretary, do that now and explain exactly what has happened. Hopefully they can step in.

I do @Ovalframes! I've been in touch with the neuro team and they've advised me what to regarding my MG meds etc but because I was assessed by a neurologist who said my MG was flaring due to the virus as opposed to it being my dominant problem at the moment I was passed back to general medical and told if I need further treatment for my chest etc I'd need to go back to an a&e

OP posts:
Peppermintpatty56 · 09/12/2024 14:37

PickledPurplePickle · 09/12/2024 14:25

If you’re not improving can you go to your GP and ask them to send you to hospital?

Only way back in is through a&e apparently 😞

OP posts:
Ovalframes · 09/12/2024 14:52

I am so sorry to hear that. What a scary situation. Your neuro team really should liaise with the A&E consultant so that they are ready for you. I guess much depends on how long it takes to get there, what transport you have got and whether you have somebody with you.

Peppermintpatty56 · 09/12/2024 15:41

Ovalframes · 09/12/2024 14:52

I am so sorry to hear that. What a scary situation. Your neuro team really should liaise with the A&E consultant so that they are ready for you. I guess much depends on how long it takes to get there, what transport you have got and whether you have somebody with you.

This would have 100% happened when the old previous head neuro nurse was there. She was amazing. She's now on leave and the care now is unfortunately no where near the same.
I feel in a really vulnerable position and it's horrible.
I just can't get my head round the fact I felt safer going home but I still felt bad for discharging myself

OP posts:
MumOfOneAllAlone · 09/12/2024 16:34

The NHS standards are so so poor I don’t blame you. You have to advocate for yourself and sometimes if you can’t do that, you have to just keep yourself safe.

I saw a woman who was really poorly discharge herself when I was last in a&e - 8 hour wait time for me - and the nurses couldn’t care less! they just said okay bye. Poor woman.

I feel like before we at least had nurses and doctors who cared. In my experience now they just don’t care.

I hope you can contact your relevant team as soon as possible and get them to help you. Get well soon. X

Peppermintpatty56 · 09/12/2024 16:52

Thank you @MumOfOneAllAlone - I appreciate it. There were hugely mixed messages for me- the Dr made a huge fuss about how it was the sensible thing for me to stay and how I needed to be there for the treatments. Soon as she left it was like it was all forgotten, no nebuliser, no obs, nothing. Nurses weren't bothered when I left either. I was in tears by this point, they didn't even acknowledge that.

OP posts:
Sushu · 09/12/2024 17:12

Oh gosh, that’s awful and I am so sorry!
apologies if I missed it but is the neuro team based at the A&E?

SkunderlaiSkendi · 09/12/2024 17:15

Id contact your GP for an urgent referral / letter of expidite to your regular Doc at the hosp / phone them

I feel like this. I discharged recently for a simlilar reason, i do better at home sometimes and i feel a&e is for the loudest - either for piss takers or for those about to die, anyone in the middle doesnt get a look in

Peppermintpatty56 · 09/12/2024 17:40

@Sushu it's a huge hospital so there's various neuro teams/wards. Im under a neurologist nurses team who are based in same hospital but not in a&e.
I had a neurologist come and see me in a&e to assess me. He was excellent. All the drs were and so were the nurses at first. It makes sense that care becomes more strained as it gets busier but it just turned to absolute carnage.
Ive had to multiple times since my diagnosis in 2021 and the decline in that time is shocking.

OP posts:
Peppermintpatty56 · 09/12/2024 17:43

@SkunderlaiSkendi that is true. There was an argument that got out of hand about the wait times and the police were called.
I just wanted to wait quietly on a softer chair and have my treatment I'd been told I needed! But, they were not in a position to provide that which is scary.

OP posts:
Sushu · 09/12/2024 17:49

Peppermintpatty56 · 09/12/2024 17:40

@Sushu it's a huge hospital so there's various neuro teams/wards. Im under a neurologist nurses team who are based in same hospital but not in a&e.
I had a neurologist come and see me in a&e to assess me. He was excellent. All the drs were and so were the nurses at first. It makes sense that care becomes more strained as it gets busier but it just turned to absolute carnage.
Ive had to multiple times since my diagnosis in 2021 and the decline in that time is shocking.

Ahh ok, got it.
I just wondered if you felt more comfortable going to an A&E where your team are based. That said, it sounds like it wouldn’t make a huge difference.

How long have you had MG, do you live alone? I fully understand why being at home is more comfortable but obviously there are risks in not being monitored.

I cannot believe what is happening in the system right now. Hospitals should be safe for unwell people.

please do take care.

Peppermintpatty56 · 09/12/2024 19:23

I've been diagnosed almost 4 years now.
Don't live alone no, I live with my husband our 3 teens and our 6 year old. It's not exactly peaceful at home for resting, but still a million times preferable!

OP posts:
Sushu · 10/12/2024 11:45

How are you feeling today? I imagine it’s a noisy home but hope you’re resting (somewhat!) and comfortable. A good Netflix series helps most things, I find! 🤗

Peppermintpatty56 · 10/12/2024 14:45

Ah @Sushu thank you so much for asking.

I'm about the same I'd say. My chests isn't as loose but I now have new whistling noises instead!! I've also now got these noises breathing in and well as out. Don't know what that means, if anyone medical is reading this please let me know!

I went to watch a new Netflix show,.. but somehow ended up watching Motherland for the 6954 time instead 😂

OP posts:
Sushu · 10/12/2024 16:53

That’s so funny because I, too, am unwell with a dodgy chest and having flicked through everything on every streaming platform, have returned to Motherland. 😂

Is it too hopeful to suggest you can maybe get a GP appt to listen to your chest to check all is as ok as can be?

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