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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

AIBU that there should be more support or access to things in children’s ward.

78 replies

myreason25 · 30/09/2023 15:07

I know a lot of people will say that it is not a hotel and medical intervention is the only important factor but many don’t live in the situation where they spend more time in hospital than at home.

I have a dc who spends months at a time in a hospital cubicle. She spends less than 40 percent of her time at school.

for years to watch the movies on the telly it’s been 6.50 ish a day.
but the Wi-Fi was free.
this year they have started charging 5.50 a day for Wi-Fi. Using data isn’t an option as the signal is not the best at all.
to access her school classes / zoom / to see her friends at school, access to Google classroom is now costing us 5.50 a day
parking 10.00 a day.
food a ridiculous amount a day.
1 month in hospital is
400 odd a month in just being able to access school work and parking.
we can’t do it anymore and she is now so isolated / bored / lonely and frustrated
it doesn’t help their recovery at all and there is 0 holistic care anymore.

OP posts:
Theredjellybean · 30/09/2023 15:51

@myreason25 those suggesting take sandwhiches, why haven't you planned ahead ect clearly have never been in this situation.

You get there and the meals have already been served so you ask for a sandwhich for your child, they can't find any, or go off and never come back with one, there is only ham or cheese or whatever and your poorly child really fancies an ice cream or a tuna melt or something...

my dsd was a teenager and was given childs portions of chicken nuggets and chips ..i was forever going to hospital costa to get her iced lattes or ordering deliveroo

we often went in in a hurry and while we had 'grab bags' packed in car with puzzle books/scrabble/Nintendo switch/toothbrushes etc ..food was often not our priority then.

Plus frankly when you are spending days and days on a plastic chair or fold out camp bed going to get food from the shop or canteen is a highlight of the day !!!

Theredjellybean · 30/09/2023 15:54

please do go and speak to PALS or the hospital chaplin - we did not have financial worries but i found strangely the chaplins of all faiths were brilliant ( and we are aetheists) they came by and chatted to Dsd about all sorts, kept her company at times, allowed me to go for a walk for an hr etc.
Plus do ask about carpark, our paeds ward gave discount voucher so however long we parked it was never more than £5
a 24 hr session was £18 at our hospital
there maybe other charities who would help.
do not be ashamed to ask..its absolutely bloody awful that parents and children are in this situation.

LastNightAPandaSavedMyLife · 30/09/2023 15:55

Wifi is free at our children’s hospital and the food options for DS were really good. They catered his dietary requirements really well. Parents also get a voucher for discount parking.

The only downside was the amount it cost for us to eat. That includes staff as I also work in a hospital!

MyDogsPaws · 30/09/2023 15:56

thats awful op, my dd spends a lot of time in hospital and tv is free for children’s ward between 7am and 7pm, Wi-Fi is free and parking is free but as well as my car is often parked there for days and I couldn’t afford to pay for parking! Children’s ward can also provide tablets, consoles and dvd players in request as well as loads of other craft type activities if you want them!

Original poster
myreason25 · 30/09/2023 15:57

The sandwich situation as well is our ward is specific speciality which means it’s mainly home to long term patients. Our longest admission without seeing our house was 19 months. Eating sandwiches and snacks with no hot food for 19 months is hell.

OP posts:
Original poster
myreason25 · 30/09/2023 15:58

@MyDogsPaws nope not here. There is one console between 28 and about 2 games with it. Everything is locked up from 4.30 pm and weekends.

OP posts:
nicknamehelp · 30/09/2023 16:00

Although my daughter wasn't oncology due to her constant hospital stays our local treated her as such. This meant we got a free parking permit. I got a dongle for Internet access which helped.
Charities also helped us out Ray's of Sunshine and Spread a Smile in particular.

Smellslikesummer · 30/09/2023 16:01

Wifi should be free for all overnight patients in all hospitals, this is ridiculous. For your child it is about school, for some adults it could be about being able to do life admin, not everybody can rely on another adult to take over.
I thought internet access was considered a basic need?

Needmorelego · 30/09/2023 16:05

@myreason25 about the food for you - is there a parents break room with fridge and microwave? Could you get a supermarket order delivered to the hospital? Get a bunch of microwave meals etc.
Or get a friend/family member to drop off some shopping for you.

Smellslikesummer · 30/09/2023 16:08

Thinking about it, this is a money making exercise. But they are so many other things that could make money and enhance the patient’s stay: charge for extra food/drinks (nice coffee/bread instead of basic one, this type of things), reception of amazon deliveries, bed tray, tablet stands, this type
of things. The hospital earns money at minimal cost, patients are happier and rely less on nurses, win win.

Katrinawaves · 30/09/2023 16:10

That sounds really miserable @myreason25

Is there a parents room for the ward with a fridge and microwave? Would friends and family be able to do a meal train for you with someone delivering you several meals you could store in fridge and heat in the microwave once a week? I’ve participated in similar things in the past and it’s not a great hardship to make an extra portion for a friend when you are doing your own family’s meal every now and again. Would just need someone reliable to organise it for you and ensure it gets delivered to you!

For the wifi a contract mobile dongle sounds like it would be cheaper than paying the hospital charges and she could then watch TV and stream content via her laptop or iPad whatever she’s using for her schoolwork.

For car parking, would it be cheaper to taxi to and from the hospital rather than paying daily parking rates for long stays if you aren’t using the car at all or much whilst she is an in patient? Or again, would friends and family help with drop off and pick ups if these are infrequent to avoid the need to leave the car in the car park?

femfemlicious · 30/09/2023 16:11

Thank God for royal free!. Free WiFi for everyone in the hospital.

Ineedasitdown · 30/09/2023 16:16

That’s really shit. It was bad enough when I stayed in with ds for 10 days 15 yrs ago. The costs mount up and no, there is no escape , it’s not like planning a picnic.

the problem is when you’re in this situation you haven’t got the energy to start complaining.
however if you do have the energy to complain then I would. Dd is ill but she still had the right to an education and a family life , the conditions you describe don’t sound as though they facilitate either. If you were to complain then I’d suggest going all in and looking up the rights of the child. I’d look at healthwatch as well as pals.

Original poster
myreason25 · 30/09/2023 16:18

Regarding parking
10.00 a day is the paeds discount 😂

OP posts:
SisterMichaelsHabit · 30/09/2023 16:31

What we've done in the past when we've had long stays at the hospital is got a taxi in and back rather than drive.

I think there's a real issue with the food/drink situation in children's wards. It would have been neglect if I had left my nonverbal three year old alone while I went to the canteen but I couldn't take him out of the ward, I literally asked the nurse "what am I supposed to do? Starve?" and she said yes. Wasn't told about the parent's room, the nearest vending machines, nothing. Absolutely useless.

The way I see it is, as I was being left as the main carer of DC, changing his bed, washing him etc, I should have been fed and accommodated. If they'd actually looked after him the way nurses used to look after children in hospital e.g. when I went in in the 80s and 90s (and my parents dropped me off then picked me up 2-3 days later both times) I would feel differently.

They don't leave visitors to do the bulk of the caring on adult wards so I think there should be more done to support parents at children's wards.

ExtraOnions · 30/09/2023 16:35

When I went into the hospital in the 80s, I had visitors (including parents) twice a day

My daughter went in, I was expected to stay with her… but with zero facilities. They need parents to stay, and do caring, as it means they need less staff on the ward - if you want us to do that at least give us the opportunity for a hot meal, a brew, and (maybe) a day room.

Needmorelego · 30/09/2023 16:39

@ExtraOnions it's very unusual for there not to be a parents room on a children's ward. The only time there hasn't was when we were on Pediatric Short Stay (where it's generally not expected you will be in longer than 1 night).
A lot of the time things like the microwave and tea bags/coffee/milk are charity funded - @myreason25 has the hospital you are in got a charity connected to it? They could help you out with a food delivery.

TomatoSandwiches · 30/09/2023 16:43

YANBU but I'd settle for being able to have DH come with us as well so we could tag team ASD DS (7) who has a cognitive age of 18months non verbal and needs constant 24hr supervision because he will get up and wander, pull cords, touch everything and only sleeps for 2hrs at a time if lucky.
I had no sleep longer than 45mins at a time or a shower for 5 days during our last stay.
Fucking hate that place.

LastNightAPandaSavedMyLife · 30/09/2023 16:48

We’re not actually allowed to feed parents, it’s a disciplinary offence if caught.

I think I lived on a lot of Costa toasties when I was in with DS, it cost me a fortune. Our local does at least supply tea, coffee and endless bread to make toast. And a fridge and microwave to keep your own food.

nocoolnamesleft · 30/09/2023 16:49

Honestly? Of course there should be. And at one point it was more common that there were. But over a decade of cutbacks has pared things down to the bone, meaning that even some of the places that used to have better provision can no loner afford it. We're lucky that we do still at least have a parents' room, thanks to amazing fundraisers. We couldn't even get funding for a accuvein viewer, for difficult cannulas, to avoid sticking needles in children as many times. Thank goodness the fundraisers came through again. And that is actual medical kit for the actual patients.

Fuck the Tories.

Sunshinenrain · 30/09/2023 16:59

Parking and TV ( or nowadays wi-fi) should be free to staff and patients.

No one chooses to be there.

PlumpAndGrump · 30/09/2023 16:59

I'm surprised by this. Our two local hospital parking is free and the children's ward ds was on had a full playroom where he spent days playing and painting. They had speakers for audio books like those tonie boxes, and all sorts of craft supplies and different toys. I was very impressed. All of this is donated by the public via an Amazon wish list shared on the wards Facebook page so didn't cost the nhs anything apart from a room in the hospital to use.

They also had a fully stocked pantry for tea, coffee, juice as well as cereal yogurt jelly, toast making facilities and cereal bars etc we could help ourselves to. I'm not sure who funds this.

Are there other parents who regularly spend time on the ward who would agree with you? Maybe if you all come together and write some sort of letter suggesting something similar then something may come of it.

PlumpAndGrump · 30/09/2023 17:01

I wanted to add just after a PP said they aren't allowed to feed parents that I was given lunch and dinner whilst staying with my ds.

Bex5490 · 30/09/2023 17:03

No advice here - just a message to say that you are definitely not being unreasonable and your post has made me furious. So unfair for families already going through so much. Really sorry for this shitness and I hope something changes soon x