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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

AIBU to think that I should have been given the aftercare booklet for major surgery produced by the hospital I was in?

25 replies

MajorSurgery · 07/02/2021 02:55

Had major abdominal emergency surgery 18 months ago, been quite a long haul recovery wise, still things going on that I'm not happy with and tonight I was googling as you do and found a leaflet online written apparently by a HCP in the hospital I was in. It contains lots of useful information none of which I have ever had: I basically got discharged with a six week sick note and no referral not to physio or anyone else.

I mean I get that the NHS is underfunded and everyone who works in it is a hero yadda yadda but really not even making basic referrals or giving basic advice to people first hand, is this where we're at?
The hospital that sent me home with no aftercare or advice has actually produced a very helpful booklet two years before I was there. But I've never seen it before tonight. I've been finding my own way via Google and my GP and frankly running into lots of issues. AIBU to think I should have at least have given a booklet that the hospital itself publishes before being sent on my merry way?

OP posts:

Embarrasedaf · 07/02/2021 02:58

I had a minor day surgery. I remember they ensured I had a leaflet and wouldn’t go ahead with the surgery if I didn’t. It was part of the consent form, I had to sign with a disclaimer that I received the relevant leaflet

Original poster

MajorSurgery · 07/02/2021 03:01

Maybe I should have had minor surgery lol. Shame I would have died if I hadn't had the surgery I did. Fuckaroo.

OP posts:

TaraR2020 · 07/02/2021 03:04

Well it might be that the leaflet isn't actually being used for some reason which is why you weren't given it.

But if you're struggling you should absolutely be able to reach out to someone for help. Do you have a follow up apt?

Also, have you tried support groups? Either here or searched Google or fb? There's loads for abdominal surgery i believe.

Would you like to share on this thread for help?

Whalespeak · 07/02/2021 03:04

I guess no one can say why you didn't get it and if it should have been given

It might be that it was due for revision, contained out of date / incorrect information, hadnt been published yet. It might just be they didn't have any that day.

Embarrasedaf · 07/02/2021 03:06

Yeah I know my procedure was completely different but presumably the same premise still stands with your surgery; as you need the relevant information to make an informed decision to go ahead with surgery. Could you check your copy of your consent form and see if it makes any reference to the leaflet/information?

You can raise a complaint with PALS but after 18 months they will probably just take the feedback on board rather than investigate the lack of leaflet. It may be worth speaking to them anyway if you’re struggling with the aftermath

Embarrasedaf · 07/02/2021 03:07

This reply has been deleted

Message withdrawn at poster's request.

Embarrasedaf · 07/02/2021 03:08

Sorry ignore my last post

Original poster

MajorSurgery · 07/02/2021 03:11

Yeah I guess maybe it's out of date. It would have been fucking handy though to have had some kind of bloody guidance on being discharged from hospital after having my torso opened.

I mean, my employer rung me up four weeks in to the sick note asking when I'd be back. I was only just making it round the garden by then. So I went to my GP and he was like oh yeah you're supposed to come to me after the six weeks and I'll give you sick notes. No one fucking told me. I honestly thought I was failing or slacking or whatever by not being able to do do normal things six weeks in, because that's what my sick note said.

It's been a long long journey and they told me fuck all.

OP posts:

Raindough · 07/02/2021 03:13

It’s possible that the leaflet wasn’t officially endorsed by the hospital at the time of your procedure.

I’m sorry that you weren’t given adequate aftercare advice. Would you mind providing more information as to what you were told vs what the leaflet advises? How wide is the discrepancy - would it have majorly impacted your recovery?

alexdgr8 · 07/02/2021 03:16

emergency surgery is by its nature not going to be so well planned as to patient information, as non-emergency.
many things that happen are not optimal, but the main thing is that the emergency surgery was performed and you survived.
i agree the aftercare sounds somewhat lacking.
has your GP been able to help with that. they should be able to refer for physio etc, and refer back to hosp for any follow-up appts.
also patients' groups for particular conditions can be v useful.
all the best OP.

Mintjulia · 07/02/2021 03:17

Maybe it was out of print or had been withdrawn as no longer within guidelines. Lots of possibilities. Since it's all in the past and you're on the mend, I wouldn't give it head space. Hope you are back to your peak fitness soon.

Original poster

MajorSurgery · 07/02/2021 03:19

In all honesty I wasn't told anything other than not to lift heavy objects.

I know now that there is a lot more to abdominal surgery than that but only because I've googled. I wasn't given exercises. I wasn't given advice. I wasn't even given a timescale, just a six week sick note. As I said that caused problems because my employer rang me four weeks into it asking for a return date. I was in no state to even consider a return at that point and the thought distressed me: either I was really bad at having surgery or something was desperately wrong.

OP posts:

Original poster

MajorSurgery · 07/02/2021 03:21

And actually I am still having related problems and I worry it's because I didn't get the information.

OP posts:

alexdgr8 · 07/02/2021 03:26

hosp staff do often assume patients know things that are obvious to them, like that your sick note was a minimum period.
maybe they can only write sick notes for up to 6 weeks. it was probably meant to get you to the stage to be fit enough to stagger to the GP to get a further one.
i remember once asking about a blood test to be done some months ahead as an out patient. the young doctor was quite sharp with me, i remember the nurse looked shocked. she snapped, i'm just about to write it. i had no idea whether i had to get a form, or how the blood room would know about it. i didn't know she, the doc, would write a request form and give it to me to take to the blood room in x months time. to her it was obvious, she did them every day, it was her job. to me the whole panoply of hosp services was strange and puzzling in its complexity. it wasn't my job. not chosen. just life. endured.

TaraR2020 · 07/02/2021 03:27

I'm sorry you're still struggling op, call your gp on Monday to get an apt and discuss with them. They can refer for anything that needs specialist supervision but may be able to do a lot to help you themselves.

Of course you're angry, its a frightening thing to go through and you've clearly been left in the dark.

Raindough · 07/02/2021 03:28

@MajorSurgery

And actually I am still having related problems and I worry it's because I didn't get the information.

It’s worth sending an email to the hospital’s patient advice and liaison service to discuss this with them. It does sound like they didn’t comprehensively debrief you at the time.

Original poster

MajorSurgery · 07/02/2021 03:37

They didn't debrief me at all. I was on the ward for days after and I couldn't walk properly because bits of my legs and back were numb from the epidural. The epidural had been in a long time because it was a big surgery. Those bits were still numb when I got discharged and ofc it was difficult to move around anyway because of the big scar etc and I remember asking the nurse about it and she said it would go and not to worry. I still trip on kerbs so it hasn't.

OP posts:

Raindough · 07/02/2021 03:45

So your legs/back are still numb in areas now?

It does sound like a difficult experience. Highly recommend writing everything out in as much detail as you can just in case you do want to contact Pals in the future. Perhaps they could arrange for you to see a neurologist

OwlBeThere · 07/02/2021 03:47

In fairness they can’t have known how long your recovery would take, some people heal much faster than others, when I had my hysterectomy there was another girl around my age (I was 25 she was about 27) on the ward after snd we sort of bonded as the only people under 60 there. She was back in work after 5 weeks, I wasn’t able to go back for 18 months due to various issues, you just never know.
I second support groups. They are fantastic sources of info and help.

Original poster

MajorSurgery · 07/02/2021 03:48

Yeah this wasn't a hysterectomy.

OP posts:

Original poster

MajorSurgery · 07/02/2021 03:51

@Raindough yeah they are. I've actually had an MRI and nothing amiss apparently but I'm tripping over kerbs. That's just the epidural thing though there are other abdominal issues. It's all a bit of a fucking mess to be honest with you.

OP posts:

PodgeBod · 07/02/2021 03:51

I've had 2 c sections. The NHS describes them as major abdominal surgery before you have them but ignores you completely post op. I was given no advice at all, not on how to keep my wound dry and clean, on how to build my muscles...nothing

Original poster

MajorSurgery · 07/02/2021 03:55

Sounds similar @PodgeBod it's shit isn't it. I got ripped from tit to hip and sent home with a six week sick note and no advice. What the actual fuck is this health service about anyway?

OP posts:

TaraR2020 · 07/02/2021 10:25

[quote MajorSurgery]@Raindough yeah they are. I've actually had an MRI and nothing amiss apparently but I'm tripping over kerbs. That's just the epidural thing though there are other abdominal issues. It's all a bit of a fucking mess to be honest with you.[/quote]
Physiotherapy might be able to help with this, speak to your gp or find a private physio practise if that's an option for you

RoomOfRequirement · 07/02/2021 12:03

You're being a bit precious about a leaflet. Which you may not have gotten for a whole host of reasons including maybe they don't approve that leaflet anymore, maybe it was on your table and mistakenly got thrown out or maybe someone just forgot.

However YANBU for the complete lack of advice for discharge. Every hospital I've ever worked at the surgeon comes to see the patient, gives advice and gives the patient a chance to ask them any questions. The leaflet doesn't really matter, that info should be given in person anyway. The fact this didn't happen is ridiculous and I'd definitely call for an appointment with your GP (unsure if emergency surgeons take regular follow up appointments at your hospital - if they do try that). Call PALs and ask them the best way about to go about this and give feedback at the lack of info. Medical staff are supposed to document what they told you so they should see in your notes this didn't happen.

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