To say no to this admission.

[Titsalinabumsquash]

Ds1 is currently in hospital, he was quite unwell but has made a real turn around, he has a chronic health condition and this isn't unusual for him.

He's currently local but the specialist unit 3 hrs away from home want him up there for another week.

To do this is need to take DD1 she is 1 but still breastfed, she has developmental delays and doesn't eat solid food.

The specialist unit have made me feel like complete shit about having to take her and have made numerous comments about how it's a shame I'm putting DS's treatment on hold because i refuse to leave DD at home.

(His treatment isn't on hold at all, he's having locally exactly what he'll have there!)

My other problem is, because it was an unplanned admission I am skint, I have a tiny amount of money to feed myself while we're up there, normally I'd just go without but I have to feed DD, the restaurant there is very expensive and there are no parent facilities to take cheaper food and cook it.

I have told them we can only go if they can arrange transport back home after the admission, I know it's not up to the nhs to transport patients around but I literally don't have the money for a train or taxi, there's absolutely nothing I can do it, I can't magic money up and I don't have anyone to borrow from.

They've brushed this off and given a vague "we'll see" answer.

So today I need to be firm and say, no transport, no admission! I'm expecting an argument.

This isn't a one off. This hospital refuses to acknowledge that we are a family of 6 and have 3 other children to look after. They often demand that we arrive there for 2 weeks out of the blue and then really bully me when I say I need time to arrange childcare and work etc.

I'm going to write a long email to PALS up there, I understand and appreciate that they have lots of patients to deal with and cater for but I'm so stressed with this reoccurring that it really effects my Mh.

If he's getting the sane treatment locally then there's no need to go at all surely

They sound very difficult and like they don't understand at all.

Are you sure you're getting all the benefits you're entitled to? It sounds like you've got at least 2 children with additional needs? - you really should have enough money for food

Normally we have plenty of money but we had our car written off and a the cost of the hospital car park etc etc, just unexpected bills. Usually we have planned admissions and we have time to plan childcare and work, this time we've had to use wrap around childcare and I've had to take unpaid leave from work.
We earn too much to get benefits but I do get DLA and carers allowance.

DD doesn't have any other additional needs except for the fact she won't swallow solid food and as a result she feeds from me like a newborn would, she's going to miss her dietician appointment because we'll be in London if we go.

They don't understand at all and the consultant leading the team up there is a bully.
I try and stand firm but either get ignored or lied too, they'll tell me we will be there for a week with transport and when we arrive they suddenly change to 2 weeks with no transport and then discharge us in the middle of the night leaving me stranded in London.

There is no parent advocate service at all.
They get really nasty and use manipulative language to try and make me feel guilty about not taking him.
They don't do anything different at all, same treatment just a different place.

Crikey that sounds awful. Can you get some support from your local medical team to help you deal with the specialists?

Not really, they do put my point across but it's almost like the specialist hospital are above the local in terms of hierarchy so they have to do what they're told.
DP is going to be with me today to fight our corner but even if we 'win' this round, it won't be long before it comes up again.

You need to request they refer to your local authority for a carers assessment. You will get the best advice about what help you are entitled to.

Have you tried a voluntary organisation (like Carers UK)? They may be able to offer advice or advocate for you.

The hospital absolutely can and should help. I have helped sort out any number of similar barriers to treatment in my job.

Your situation sounds incredibly tough. Like Laurie, I wonder if you are getting all the support you're entitled to. But..

..without knowing the details of your DS's condition and why the unit wants an unplanned admission, it's very hard to know whether YABU. I am an HCP and I cannot think of a single situation where a specialist unit would want to admit a child urgently without a good medical reason. I am absolutely not saying, "The doctor is always right', just that there must be a reason and you need to discuss with them what the risks are to your DS if he is not admitted and why he cannot be managed locally. It sounds very unlikely that a specialist unit would want him to come to them if he could really get the same treatment nearer home.

Get your local team on-side with your difficulties, and have your local consultant (and PALS) and any consultant your DD is under, to write to the other team ASAP explaining the situation and confirming the availability of the treatment (as so far described) at your home location.

And also ask if there is any other thinking about this admission which they have not yet described to you.

I think this is an important bit of arse-covering, because the last thing you need is for the second hospital to start making assumptions that you're not supporting your DS's treatment.

I hope you get this all sorted out.

And in the longer term, try to change specialist consultant. Most are just fine, but you do still come across ones with an awful manner all round or one which just rubs you up the wrong way. You don't need a person like that dealing long-term with your poorly DC.

Your situation sounds awful.

As a HCP the only advice I can add is that the general rule in the NHS is that anything not written down didn't happen. So it is really important to put everything in writing to PALS and copy it to all the relevant parties.

If you have a good, sympathetic GP, they could really support you on this.

I don't know what the condition is but I was about to offer the same advice as Shiney, please, please contact the relevant charity and see what support you can get.

How is this even a question? You son NEEDS medical care and you a whining about breastfeeding your daughter???

It's a question because her son has a chronic condition that involvres regular hosptal stays and the other people in the family matter too.

It's in the OP if youbwere interested in helping rather than asserting your certainties abiut things yiu know fuck all about.

Titsalina - YWNBU to refuse the admission now, under the circumstances.

I have seen specialists bully families in this way before. Some of seem to forget they are treating a person, not just a disease.

Is there any good reason whybthe admission has to happen right now?

clarrrp Learn to read FFS.

www.nhs.uk/NHSEngland/Healthcosts/Pages/Travelcosts.aspx

Don't be such an arse clarrp.
The OP has said he can have exactly the same treatment locally. She is skint and has other children to consider too.
Understanding.
Get some.

Clarrp if you read the full thread you would notice her breastfed child is currently not taking ANY other food but breastmilk so frankly I think OP has her priorities absolutely straight,

OP I hope PALS is of some help. I have recently had to deal with a fair few admissions as ds has a kidney problem and it is incredibility hard to deal with the logistics of it all. & I have teenagers (and a 12 year old) who can to some extend fend for themselves.

Op...a quick goggle help with costs whilst child in hospital found loads of charities and links depends on what ds is in for. Do you have access to internet. I suggest you also are very honest with everyone in the hospital and explain why you might have to say no and also contact pals. Hope ds is better soon x

Clarrp, you are a notoriously blunt poster but kicking a woman in a tough situation with more than one sick child is low.

Clarrrp. I'm no huge MN'er but I've started noticing your posts as often being quite unpleasant. I don't know if you get a kick out of it but if not you might want to think how you come across because it isn't good.

OP, there are a few organizations that offer an 'advocacy service' information here. I suggest you contact some and see if they can help.

The condition is cystic fibrosis, I'm not all that bothered about outing myself atm. Thanks for the shitty message about priorities, I've been running myself into the ground for 9 years so don't tell me to get priorities when you know nothing about my life.

DS normally is admitted every 3 months for 2 weeks at a time, every time it's a battle because they want him there and I can't manage 2 weeks of being out of work and childcare for the others and he genuinely isn't having any different treatment there than he is here, it's iv antibiotics and physio.

He was admitted urgently this time because he suddenly became very unwell, they stared his ivs early and he's back to normal after a week of treatment in our local.

If we go they will continue ivs and physio, they like to keep and eye incase the local are missing anything, DS's health has deteriorated quicker than a 'normal' cf child. This is because the damage done in the 2 years after birth that I was fighting to get a diagnosis, nothing is being missed, it just is what it is. Their policy is to have the regular admissions at least twice a year which I just can't do. I'm juggling 4 children a job a home and a relationship and I can't do it when I'm getting no flexibility and support, all that happens is it leaves a tense relationship between us and the people caring for DS.

We really aren't entitled to any other benefits, we had a good savings buffer but I had severe pnd after ds3 was born and DP had to take extended paternity leave and then take a lower paid job to be close me to us, we started building it back up then the car was written off and we had some tax stuff to pay so we're back to nothing.

Thanks for the kind messages, I'm going to say no this time and then contact PALS.

Op. www.cysticfibrosis.org.uk/life-with-cystic-fibrosis/support-available/financial-support

I had a friend whilst i was growing up suffer from cf. sadly she lost her fight whilst i was at secondary school (please bare in mind this is the 80s so medicine has gone on alot since then). ive also got two friends now in their early 30s with cf. Hope your ds is better soon x

Have you tried NHS transport? I ask because I've used it a few times to take DS3 to hospital. He's got a serious illness and is severely immunocompromised so we get transport on the grounds that he can't travel on public transport, I don't have access to a car during the day and the hospital is too far away to walk.

I'm quite that there are no parent facilities on the ward. If parents are expected to stay with their children during treatment than there needs to be a place where parents can prepare food for themselves.

Oh tits, that's tough.

Of course you also want the dietician appointment as if there is some way of alleviates DD's needs that could give Back to the whole family with your time and energy.

Good luck

Don't let them bully you. London hospitals are very busy I would demand accommodation. If they are throwing you out in the middle of the night with a vulnerable child and no transport I would report them to the CQC. That will put their noses out of joint. If they are not going to listen to you then take you're complaint higher. I wish you the best of luck.

We don't qualify for nhs transport because we don't receive the right benefits.

There used to be a great parents room with a fridge/microwave and milk/water dispenser.
You can't even get a glass of water in the day because the staff are so busy.
M

Obviously if he were needing something they could offer that we couldn't get here id be there whatever the fall out was but they're just not.

I'm yet to see the cf nurse here this morning.