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So sick of disorganised hospitals impacting my son’s care

11 replies

SinkGirl · 03/04/2019 09:27

At the hospital with DS because he needs another medical test which is supposed to take an hour. Getting pretty pissed off now. As always happens when we bring him in for tests, turned up on time to be told that he was in the diary but they had no idea where he was meant to be. Eventuality they stuck us in the day surgery ward in a side room.

After an hour of being here the nurse comes in to say they’re looking for his notes, that was 20 mins ago. She’s just come in again saying now they have found his notes but we have to wait for the doctor to prescribe the drug that needs to be given as part of the test. They could put the cannula in while they wait for the doctor, but are they doing that? Clearly not.

We have a bed rather than a cot and it has rubbish barriers so he can’t even sit on that as he would fall off. So I’ve been stuck in a room for nearly an hour and a half with a bored toddler with ASD, who picks up and eat anything he can find (like the crumbs all over the base of the bed and in the heating vents). I’ve already given him a load of snacks, trying to save Hey Duggee on my phone for when the needle happens.

I know they’re so busy so I don’t complain but I’m starting to get so tired of this sort of thing - it’s so counter productive because we could have been gone by now and instead we are blocking a bed / private room that someone else may need. If they’d taken time initially to put the cannula in and take the sample, we could be out of here. They haven’t even put any sodding numbing cream on, which could have at least been left to take effect while we waited. He won’t be having it now as I’m not making him wait another 30 mins so the spray will have to do.

Sorry - I do so appreciate the NHS and everything they do but the lack of organisation is shocking and costs them so much time and money. So far he’s being quite calm but there’s only so long I can trap him in a room with one toy he’s not very interested in before he loses it. I think I might lose it myself soon

OP posts:
Happynow001 · 03/04/2019 10:41

Oh dear OP I feel for you! I hope things are moving/have moved now and that your son is OK. 🤗

rightreckoner · 03/04/2019 10:44

Agree. This sort of thing happens so often - I think it’s under resourcing of the sort of planning role that you need in a complex environment like a hospital.

Sirzy · 03/04/2019 11:06

The admin side of the nhs drives me mad. I seem to spend half my life chasing up poor communicaton problems

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bigbluebus · 03/04/2019 12:22

I feel your pain SinkGirl. I spent 22 years at the mercy of the NHS's inefficiency with my disabled DD. I am grateful for everything they ever did for her (she's sadly no longer with us) but I would hate to think of the hours and days I/we wasted unecessarily just sitting around waiting for them to get their act in gear just to do something seemingly straighforward.

The staff are overworked and will be busy doing other stuff so they will momentarily forget about you. You need to politely tell them that as your DS has ASD his tolerance level for being kept waiting is very low and if they do not do something soon then the chances are they will be unable to get blood out of him as he will be too distressed, then you will all have wasted your time. You'd think that would be obvious to them but sadly not!

Toddlerteaplease · 03/04/2019 12:26

Most paediatric nurse don't cannulate (I am one) so the doctor will have to do it. Can't he go to the play room while waiting.

SinkGirl · 03/04/2019 13:04

Couldn’t use the play room sadly - too much of a risk of infection with his hypoglycaemia issues.

Just got home now - the cannula finally went in at 11. Turns out they booked us to come in two hours before the nurse who was dealing with him was on shift. Brilliant.

Is it too early for wine? 😂

I am so grateful for everything they do for him, I really am - and so appreciative of living in a country where his conditions don’t bankrupt us. I just find the inefficiency so frustrating (and the grotty bed, which I ended up cleaning the base myself because he kept trying to pick up and eat whatever was all over it 🤢).

OP posts:
postitnot · 03/04/2019 17:49

Ask if you can have the contact for Pals. You don't need to be stroppy and 'complain' as such, but just give feedback as to how you think it could be better. Management do tend to listen to patients when they don't always listen to staff who make the same points.....

GinTimeAtHome · 03/04/2019 18:26

Sounds like my hospital - honestly they couldn’t find their way out of a paper bag even if you gave them directions 🙄

4 times they tried to give me penicillin - the antibiotic that will cause me to quite probably die within minutes all because they read the wrong notes...and yes I did have a big red wrist band on 🤷‍♀️

Ultrasound booked at 1.40 - get wheeled down....3 hours later I get my ultrasound I was put in a side room and forgotten about!

The mixed mine and my sisters notes up, by the end I was just so glad to be out before they actually did kill me

As much as I love the nhs I do wonder what the heck kind of admin system they have 🤷‍♀️

EggysMom · 03/04/2019 18:35

I was once sat with our ASD son in paediatric outpatients for two hours simply because somebody forgot to move his file from the main reception desk to the clinic desk, so nobody knew we had arrived and were waiting (until I pointed it out ....) That's not admin, that's simple logistics.

SinkGirl · 04/04/2019 10:44

The mixed mine and my sisters notes up, by the end I was just so glad to be out before they actually did kill me

You have no idea how often they mix up the twins - I once called to rearrange an appointment only to be told the appointment didn’t exist, none of his five appointments existed, took me 20 minutes on the phone to different people before I realised they were looking at the wrong twin’s notes. Turns out the identity checks they do don’t work so well for twins when they focus so much on surname and date of birth!

My little one was so good yesterday, got through it all without a fuss which was some kind of miracle. Will definitely email PALS about it and include the photo of the grim bed and the random plugged in power cable that was dangling by the bed he grabbed and tried to put in his mouth!

OP posts:
Wheretheresawill1 · 04/04/2019 11:05

I’m having an operation on Friday and have no idea what they are doing as I can’t get the consultant to ring me back. I’m a nurse and assertive so god help others in this situation

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