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

[myreason25]

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.

I remember when Ds was in hospital once asking my mum to bring tea spoons in for the parents room because so many had disappeared I was using a knife to stir my my needed coffee!

the idea of having things to leave in the fridge is great but as with any communal fridge relies heavily on the honesty of others using it.

even a well stocked vending machine on the wards would work for most. Or a way to order a meal for yourself even at a small cost .

Tea spoons disappear from all hospitals, even from the staff room. I don’t know where they go.

That’s shocking. I’m a paeds nurse, no longer in wards but we had free Wi-Fi, tv parking etc the disparity across the uk is shocking: this is the worst time of families lives and they should not be worrying about money and eating. Our manager was very good though and would never have allowed parents to go hungry if in long term.

also a disciplinary if you feed a parent? I’d like to think I’m a qualified, experienced professional and if feeding a child’s parent so they are able to stay with them and not be hungry and exhausted worrying about how to get a hot meal then I’d fight any disciplinary that was thrown at me! Shocking lack of care and awareness of families who are in hospital long term. I’m sorry this is your reality op, pretty shocking that’s what families are going through. I’m not sure how you would challenge any of it, and if you’d want to whilst your child is in hospital very poorly, seems very cruel and opportunistic profiting from the families of sick people!!

I feel your pain. It's expensive and difficult enough as it is without charging for wifi. I'd definitely get onto your MP about that, it's disgusting to charge for it.

We were long term at Great Ormond Street. Some lovely parent had fundraised for iPads in each room, and then you couldn't really use them because people kept stealing the chargers. Same for the TV remotes.....

A decade ago, another mum of a long-term patient on the children's ward was chosen to be someone to go and talk to hospital management about what it was like from the parent/patient POV.

They had excellent provision of toys, books and play workers, good catering inc some provision for parents, and were (perhaps) expecting praise or at least significant positivity.

She tore in to them about lack of reliable free wifi - pointing out how vital it was both socially and educationally for the patients, and an important way for both patients and parents to keep in touch with wider family (as phone signal inside hospital buildings is always crappy). And that the play facilities were great for primary age DC, but not right at all for the older patients.

They were (polite version) a little taken aback - being vaguely aware already that wifi was something that should be on the "to do" list - because they had simply failed to grasp its importance when you are an inpatient, especially preteen and teen.

Good on them, they took the message - and more importantly acted on it (IIRC, using infrastructure put in for staff use, with upgrade funded by "Friends of" and then just accepting any ongoing costs as they were pretty much inseparable from the staff ones)

I am aghast to read that now, so many years down the line, that it's not considered a basic facility for patients and provided everywhere.

Does your hospital have a 'friends of hosptal xyz' they can be a god send if you get in touch

Cup a soups were my go to hot food.

Luckily canteen was cheap so did one meal a day from there.

Most trust have free parking passes for long term patients and their is usually a fund yoi can apply to for help

Would u be willing to name the trust as people may have advice

They're being stolen by elves who are trying to work out how to make chargers and zappers from them......

The classroom wi fi should have its own code so I'd be asking for that

It does bemused me. I worked for a place that filled their own vending machine with food they made. Super cheap for staff to buy, sandwiches were like 50p, biscuits 20p etc. I never understood why hospitals don't do this

That's awful OP. I've been in for prolonged periods with both my DC in a couple of hospitals. Always had free Wi-Fi and free parking even if the rest of the hospital was charging for parking.

The food situation is universally a nightmare, even if there is a parents room/communal fridge/microwave but even worse without. Some charities do give grants, may actually be worth looking into. What a sorry state of affairs.

Do you get disability for your dc? If so, would that cover costs in the hospital, as it would if at home? If not home for that period of time, the dla you would use for her at home would instead cover the additional costs at the hospital. That’s of course if you do receive some sort of dla.

This is so sad.

my DC recently spent a stretch in paeds

our local hospital has free wifi and freeview tv, Free/subsidised parking for parents of sick children, a big play area for the children with table tennis, outdoor toys etc, a lady that comes round and does painting/drawing/crafts/reads with the children, a dog that visits them weekly, a kitchen for parents to cook in.

I assumed they were all set up like that but I guess we are really lucky

I agree re contacting the paper - having a sick child shouldn’t put you so wildly out of pocket

Even working on Higher Rate Care and lower mobility that works out at just over £150 a week (I have used LRM as HMR is automatic entitlement to blue badge which should be automatic free parking)

from the OP it is costing her £22 a day just for parking/wifi/TV so that’s the DLA gone before food and the whole host of other costs. And also worth remembering the house will still need running while not there!

I've always thought it's bad that you have to pay to park at hospitals. You're either ill or worried about someone else who is ill and now on top of that you have to worry about the extortionate parking costs. I know when my dad was ill in hospital with cancer my mum used to drive to see him every day and used his blue badge to get free parking, even though the badge wasn't for her. She felt guilty but I felt the parking charges were very unfair anyway so I thought it was fair enough!

When my daughter was a few days old she was admitted into the NICU for a few days for weight loss and jaundice and we stayed in the mother and baby room so I was allowed to stay with her. I didn't like to complain but I was a first time mother with a baby who I was very worried about, plus with issues breastfeeding, and meals weren't provided for me. I also wasn't allowed to leave my baby so I couldn't go to the hospital canteen or shop. I had to rely on my husband bringing in stuff for me. Looking back I really do feel that I could have been included in the meal service for the maternity ward next door.

Do you have a tablet or old phone? You can get things like youtube premium or netflix downloaded, so could do one day of wifi to download loads of programs and videos to watch later. There are also games you can download and then play without an internet connection. Kindle have an app that you can download to, so do many libraries.

Absolutely obscene that you would have to do any of this. Their internet provision rates can't possibly be that high so they are deliberately targeting those who are in the longest to make the most profit out of.

@AmyandPhilipfan im sure I read somewhere that hospitals do feed nursing mums if the baby is under 1!!

Oh, although of course maybe you weren’t nursing!! No judgement, just something that immediately sprang to mind when I read your post.
I follow a page on Instagram where a mother who lost her daughter to cancer is campaigning to change things in hospitals to make sure every parent is fed while in with their dc. On a Saturday night companies can sponsor a pizza night and these get distributed around children’s wards of a few hospitals here in the SE. She’s an amazing woman who seems totally determined to make sure parents don’t go hungry like she often did while sitting with her very poorly daughter not wanting to/being able to leave her. They have also managed to load up snack boxes in the family kitchens/parents rooms:
I get so angry that these things are issues.

I’m quite shocked. Our local isn’t shiny but manages
-free parking for inpatient paeds
-a parent room with basic coffee/ tea/ cereal
-wi fi
-a rather tired playroom
-free tv

The bigger better funded one has play people handing out lego/ slime/ magazines and stuff too and activities

It sounds really shit and unfair

I’m learning to appreciate my local hospital. They feed all breast feeding mothers. I was really shy to admit to still feeding a 2.5 yr old for comfort still and they just smiled and insisted on feeding me!

Probably a stupid question, but is there a Ronald McDonald House at the hospital? My friends child was in Birmingham Children's and stayed there. They also had day passes though, so you could go and cook yourself something, at least. They have WiFi too so, if your daughter is able to leave the ward, she could use that.

The DLA is likely already accounted for, even if the OP receives it. For instance, she may have had to get a new car for her daughter's needs and the DLA pays for this. She wouldn't be able to stop paying in order to use the money elsewhere.

I was in hospital for 6 months with my son when he was being treated for s brain tumour. His food was provided for but not mine. There was a parents room with tea and coffee facilities and a microwave. Food could only be in the fridge for a little while incase it went off and nothing with mushrooms ( at that time we were told it was dangerous for children with cancer - not sure if that has changed). There was a hospital canteen but even leaving my son to go to the parents room was often impossible let alone going to the canteen.

I lived on chocolate that visitors bought in and occasionally got a meal in the canteen if someone sat with my son.

It was an horrendous time all round.

At that time there was no WiFi until about 4 months in to our stay. Children were rarely allowed to visit due to norovirus so I barely saw my other son in 6 months.

Being in hospital long term with a very poorly child is frightening, lonely, isolating and exhausting to all.

The nurses were flat out with their patients so there was little help for all the parents on the ward.

I'm not sure what the answer is, except the obvious more money to the nhs to provide for staff and facilities, but there should be more compassion for parents in this situation.

My love to all who find themselves in these desperately sad times.

On a practical note, have a look for a mobile data dongle - you put a SIM card in. Unlimited data sim will be much cheaper than the hospital WiFi and probably more reliable! You can get usb ones that you plug into a laptop or small ones that you can connect more than one device to - so maybe a couple of phones and a laptop....

Will that work in a hospital?

They're buildings with more dead zones of no mobile reception than places with reliable signal

You do need mobile signal unfortunately... I use them for work and often leave the pebble by a window or somewhere with signal - the range is pretty good from the pebble to the laptop.