Advocating for yourself in hospital

[Wheezy-penguin]

Hi there first time poster here! Picture of one of my hospital lunches for tax purposes!

just wondered if anyone has any advice for self advocating when hospitalised with asthma. I was brought in my ambulance on Wednesday evening, almost took 24hrs to get a bed.

Doctor listened to my chest first thing today (Friday) and said I was good to go home and he was going to get the asthma nurse to speak to me. They tried to discharge me at 2pm after my asthma getting noticeably worse, my peak flow has dropped again. I keep telling staff I’m struggling and they don’t give me any answers of what I can do or what meds I can take or if I can have any more nebulisers. I was told the asthma nurse left at 3pm today and they asked me to see her as an out patient next week. I don’t feel well enough to go home and no one seems to be listening.

I know they’re short staffed and want to send as many people home before the weekend but I don’t know what else to do - even tried ringing patient liaison and they weren’t about.

(picture of one of my lunches for tax!)

[Bevvy]

Ask to speak to the sister in charge or matron if there is one. Say you won’t leave until you have spoken to a doctor again. Issue could be that because it’s now the weekend there may not be a respiratory doctor on duty.

If you get no response from that, just calmly refuse to leave. They can’t/wont do anything at this stage. Point out if they do an unsafe discharge and you end up in a&e again over the weekend there will be an investigation.

[Wheezy-penguin in reply to Bevvy]

Thank you so much for taking the time to read, respond and for the validation. I was getting anxious that I’m making a deal out of nothing but my peak flow has dropped to 300 again so I know something isn’t right.

[Poobah]

I had to prevent my discharge from hospital on one occasion, but not for asthma. I had broken my shoulder and was told I couldn't walk to the loo without a nurse because of my low blood pressure, they assessed I would come to harm. But at the same time the Dr wanted to discharge me (I was on a ward attached to A&E). So I asked the Dr how does that square with a safe discharge? He was under a lot pressure, but admitted that they had a team who would facilitate care at home until I could cope and he stressed it was something they jealousy guarded. It took another 24 hours to get the team in place, so I stayed in hospital until they could carry out a safe discharge.

Safe discharge are the key words. An unsafe discharge from hospital in the UK is when a patient is discharged before they are ready to leave, or if they don't have the care they need after discharge.

Examples:

• Discharging patients before they are medically stable

• Discharging patients without a follow-up care plan

• Discharging patients without a place to go

• Discharging patients without proper assessment or consultation

• Discharging patients without informing carers or relatives

I'd say there's been a lack of engagement with you in any discharge planning and they've failed to acknowledge worsening asthma symptoms. Definitely tell the Dr or senior nurse in charge of the ward that you haven't been involved in the discharge decision and your deteriorating asthma appears to have been overlooked, so you think it's an unsafe discharge. This should start alarm bells ringing that you're aware of hospital protocols and they will be less likely to take a risk by discharging you too early.

I hope you receive the care you need and make a full recovery.

[Wheezy-penguin in reply to Poobah]

Thank you so much, I didn’t know anything about safe/unsafe discharges. When I was last on hospital a year or so ago with my asthma they rushed me out after one night and then I was back in two weeks later. Since then my asthma hasn’t been the same. Definitely wish I’d have looked more into it back then but just thought the doctors/nurses were right!

[WheezyChick]

Hi Wheezy-penguin! I felt I had to reply because - are we related?? I hope you have stood your ground and been kept in until you feel better. I have been told that in our local A&E people know how to get attention being the opposite of 'stiff upper lip', and lying down, unable to move... channelling their inner theatrics. You have to learn a bit of that, girrrl! Hope you are doing well - from one wheezy bird to another xx

[Wheezy-penguin in reply to WheezyChick]

Haha! My friend always used to call me wheezy after the penguin in Toy Story! Guess it’s a bit of a trend with us asthmatics 😆 i have seen a lot of theatrics while I’ve been in here! Still here at the moment, my peak flow hasn’t dropped from 400 since 9pm last night. Haven’t had any one examine me yet so will see how that goes! Thanks for reading and replying x

[Pipsqueak77]

Hi

Just to say that when I’m hospitalised the protocol is that you are safe to be discharged when peak flow is equal to or above 75% of your best.

Are you requiring oxygen or anything? You don’t say what treatment you are receiving?

Take care 👍😊

[Wheezy-penguin in reply to Pipsqueak77]

Thanks that’s interesting, I’m pretty much there then! I’ve been taking doxycliclin and predisorone (excuse the spelling) since Monday. Normal meds are salbutamol, fostair and montelukast. Also had x4 nebs a day. Haven’t had oxygen.

[Bigoil]

Have you got an asthma plan with hospitalisation details on? My plan includes drop below 60%, start steroid rescue pack and present to A&E. ( The attack is moderate and unresponsive to salbutamol)

They're obligated to keep an asthmatic until a return to 75% is achieved before release.(The attack is mild and responsive to prednisolone)

My last episode included a drop to 40% (which is classified as a severe attack) and a 4 day stay.

If anyone drops below 33% then intensive care/resuscitation unit should take over case management as now classified as life threatening. You will need arterial blood gas analysis and lots of intravenous medication.

If, like me, this has happened before then tell them your history. They do listen if you mention GINA.