I'm not but have been accused of being a CF.

[TitsalinaBumSquash]

My son is in hospital, he come regularly for 2 weeks at a time. He has major food issues after being pushed and pushed to eat more and more for 2 years. He now has a gastrostomy but still has to eat 3 meals a day. He has a very, very limited list of foods he will eat.

He will NOT eat anything on the menu on the ward, eating is hugely important we have to get his weight up.

I am on my arse skint at the moment, these trips cost us a lot and I'm self employed so don't get paid when I'm not there.

What I've been doing is taking his meal from the ward for myself (always order a small portion) and then using my very small food budget I'd set aside for myself to buy DS a meal he will actually eat. (I walk to the nearest Tesco and get a ready meal for £1)
I figure I'm not taking anything extra from the hospital and both of us get to eat this way.

I've overheard a couple of mums complaining that I'm a CF and should just buy 2 meals a day if DS won't eat ward food. I can't see that I am but thought I'd check the jury of MN.

Expat. That went to supreme court last year. Thanks to the Mathieson family payments are no longer stopped.
OP if you aren't already, look into DLA it sounds like you should apply.

My DS in hospital alot. I'm encouraged to eat from the trolley instead of/as well as DS. It helps normalize eating if he's eating with a family member.

OP if you’re going to be in for another wee while and you’re close to me I’ll bring you in some food

This is so sad @TitsalinaBumSquash, you're resourceful and amazing and not a CF!

Can I ask where you are?

Ignore them. By the way what is a CF I keep meaning to ask?

@welshmist it's cheeky fucker

Is he in hospital specifically to get his weight up? And they're giving him things they know he won’t eat?’

Haven't RTFT so sorry if I am repeating but... if weights an issue and your son wont eat ward food dietitian is able to authorise canteen vouchers.

That's how it's been at all the hospitals I have worked in including the current one.

Why? It would just be thrown away otherwise?

We do get DLA and we don't qualify for any help from charities because DH earns too much but it's that bracket where it's not enough to cope with these things. I am losing £100 a day in wages so it's big chunk.
There is a microwave/toaster and kettle here that I can use in the parents lounge so I do pack bits but that doesn't help DS to eat so I'm still buying food for him.
This is every 3months for 14 - 21 days, sometimes closer together if he's unwell (which he often in) this year we've had 8 weeks in hospital, 2 hours away from home.

I've come a long way, I vividly remember being transported and dropped here in the middle on the night, DS1 was in critical condition, I had just been given his diagnosis and told he wouldn't outlive me, I had a new born DS2 and my ex had refused to accompany us. I didn't know where I was and I had no belongings or money with me, we ended up staying 6 weeks.
Now I bring a huge suitcase and I'm familiar with the area (Chelsea) but it's an expensive area so I can't pop out for a cheap meal and I can't jump on and off the tube all the time.

We get by but these women really got to me, I make damn sure to always be polite to staff, get to know them by name, compliment the nicer dishes and I always clear my rubbish and scrape my plate, I go last in the queue to make sure everyone else gets fed and I never take the piss.

Also on a side note, my DS has advanced Cystic Fibrosis which we all shorten to CF so the constant use of CF for cheeky fucker on here often confuses me and I have to double take.

hospital stays with children are expensive for everyone
They are
So they are obviously more expensive for someone with a chronically sick child who has frequent admissions and for those parents who are unable to work due to their caring responsibilities.

The expense of a hospital stay is not being used as an excuse to be horrible to the other parents so not sure why its ok for them to be excused because of it.

I just came on to say what tessliketrees said, when a relative of mine was in children’s hospital she didn’t like any of the food on offer - also the timings didn’t akways suit (she used to feel sick after medications etc) so they gave vouchers so she could choose her own meal at her own times from the canteen.
You are not a CF for doing what you are doing - but you shouldn’t have to be doing that to get your son something he will like, there are other options.

Op how long are you going to be there?

He comes into hospital for iv antibiotics and a general 'tune up' he has significant lung damage and needs the intensive physio therapy and various combinations of antibiotics.
The dieticians are really good but he get obsessed with only one food at a time and if it's not something simple they can get from the kitchen then there isn't much they can do. They often offer vouchers for local chain restaurants though if they will cater for DS instead. He is gaining weight now, 2kg since feb which is the first time he's gained in 2 years.

Now I bring a huge suitcase and I'm familiar with the area (Chelsea) but it's an expensive area so I can't pop out for a cheap meal and I can't jump on and off the tube all the time

DD used to be in hospital off Tottenham Court Road. Lots of places to get food but at tourist prices.
Her other hospital was local but stuck off in the middle of nowhere (relatively speaking, for London) so the nearest food places would have been cheaper but I couldn't get to them!
The hospital canteen wasn't subsidised so a meal there would have cost around £7.
Ok for a one off but not ok for every meal for three weeks at a time.

We're going home in the next few days,

Like Expat I lost weight.
I also develop stomach issues that I still have a decade later.

well technically only patients are allowed to eat hospital food the rest supposed to be binned but i worked as a care assistant for 9 years part time in a hospital and i just used to go round and offer any visitors anything that was left .better someone eating it than going to waste just ignore other folk

Yeah the canteen here is super expensive, to get myself breakfast, lunch and dinner every day would be around £20-£25 a day minimum, there son parking fees because we come by train but that's £50 a ticket so it all adds up.

As a HCP in a paediatric hospital, I would actively encourage you to do this. Our catering allocations are one meal per patient but if he isn't eating it, then I would gladly ensure you had his portion and didn't go hungry. It's vital we also look after parents so they are able to be with their children. Parents staying also indirectly helps nursing staff as there is someone by the bed all that time.

We know and love parents of our long stay patients and never think of ones like you as an inconvenience

brazen it out with them. nobody would choose to eat hospital food. same as noone would choose to eat from a foodbank. doesnt stop people saying stupid things.

Get someone to print out a few copies of this thread and hand them to the nasty mums with a polite smile.

OK, I get this. My daughter also has CF so Im in and out of hospital with her and she is SOOOOOOO fussy, especially from the kids menu. she hated it.
They SHOULD be offering a specialised diet - that means access to the kids and the adults choices, and in fact anything that the kitchen or staff canteen will make for him.
have you a CF social worker assigned to your team? we were based at Kings (moved to adults this year) and the social worker applied for all sorts of things for us - last time we stayed in London they applied for a family fund grant to cover some of the extra expenses.
The other mums are bitches.
Takwe the food and eat it in his room.
He is IN a room isnt he?

do you get tax credits? Because tax credits means you can claim travel back and forwards and should entitle you to family fund

I’m a paediatrician. I’d be heartbroken if one of my patients was made to feel like this. Yes to ticking the large portion. Could you talk to the nurse in charge? In my hospital we have access to an emergency fund that can be used for this kind of purpose but even if not an option I’d say take anything you can and we would slip you snacks discreetly too

My DD was in hospital briefly last week. While she was sleeping, I asked the nurse if the hospital shop would still be open so I could buy myself a meal. They offered me a sandwich straight away but I said I was happy to get my own.

Just as I was about to leave, DD woke up, so I couldn't go (it was my job to force feed her via syringe as she was dehydrated!). They supplied me with multiple sandwiches, various pieces of fruit and a yoghurt.

YANBU.