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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To say no to this admission.

45 replies

Titsalinabumsquash · 13/06/2016 07:54

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.

OP posts:
Rafflesway · 13/06/2016 10:22

This reply has been deleted

Message withdrawn at poster's request.

Rafflesway · 13/06/2016 10:23

This reply has been deleted

Message withdrawn at poster's request.

AndNowItsSeven · 13/06/2016 10:29

Contact the family fund they can give you money with a couple of days in your situation.
I do think you should save all/most dla for hospital admissions costs in future. I appreciate you may have other costs linked to your dd disability but you need the money for situations like this.
I do really doubt they would want to admit your ds unnecessarily.

3littlefrogs · 13/06/2016 10:29

The hospital are supposed to give you a car park pass.
Contact PALS and ask them.

Honestly - it is shocking that parents and relatives of seriously ill patients are not told about this straight away.

I am in London so please let me know if I can help.

Flowers
AndNowItsSeven · 13/06/2016 10:30

www.familyfund.org.uk
Phone the family fund today they process applications very fast in situations like yours.

AndNowItsSeven · 13/06/2016 10:31

They don't always give hospital passes in my area you can buy them at a reduced rate of £10 a week.

Arfarfanarf · 13/06/2016 10:42

This reply has been deleted

Message withdrawn at poster's request.

littleducks · 13/06/2016 11:19

Has your dd been referred to an Speech and Language Therapist? She needs a referral for the swallowing difficulties. Dietician can only help with keeping her adequately nourished on fluids.

I don't think you should say "no" maybe site it is documented your difficulties and try to say "yes but at local" the last thing you need is a SS refferal for failing to meet DS's needs.

Try and get a parent advocate from charity or something to support you.

Do you have team around the family meetings? Sounds like these would be useful for people to see the full picture and try to support you not pressure you

Titsalinabumsquash · 13/06/2016 11:59

Sorry I should have said, I wouldn't say no but more, unless transport and accommodation is sorted then the answer is no.

I have spoken to put Dr's here and they've left messages but there's no reply up there so far.

I'll try the various charities, the DLA goes on sports clubs and a physio to spend a session s week with him to take some of the pressure off me.

Good news is DS's lung function has gone form 50% on Monday to 80% today, the best it's been in years! Grin

OP posts:
fanjolamps · 13/06/2016 12:14

In your op you mention that your dd is exclusively breastfed. Then say you cannot afford to go to specialist unit as you have no money to feed her whilst there. Thats a bit confusing.

AndNowItsSeven · 13/06/2016 12:16

However useful the sports club and private physio are if you can't afford food and transport when your dd needs admissions then you will need to cut down on those or save money elsewhere.

AndNowItsSeven · 13/06/2016 12:16

Sorry ds.

AndNowItsSeven · 13/06/2016 12:19

Fanjo the op means she needs to eat to produce breast milk.
Op food is always provided in hospitals free for breastfeeding mothers so you need to let them know your dd is exclusively breastfed.

ApostrophesMatter · 13/06/2016 12:19

In your op you mention that your dd is exclusively breastfed. Then say you cannot afford to go to specialist unit as you have no money to feed her whilst there. Thats a bit confusing.

I'm not confused. OP says she needs to feed herself so she can feed her DD.

AllegraWho · 13/06/2016 12:20

fanjolamps, she needs money to feed herself, in order to be able to produce enough milk for DD. If it wasn't for having to feed DD, she would go without food herself.

fanjolamps · 13/06/2016 12:38

Ah ok right sorry i read it wrong.

JustWantToBeDorisAgain · 13/06/2016 13:10

Titsalina have you considered changing specialist centres? If the consultant is a bully they are unlikely to change ( not helpful when this is an ongoing relationship until18) I would definitely look at travel times and distances for other specialist centres. The cf trust has a list I'm sure, if you are on fb there is a parents group ( private) and you could ask about experiences of the other centres.

As for this admission hold your ground, he is receiving treatment and 80% is a huge improvement in LF ! Cf impacts everyone in the family and the sooner they accept that the better.

Toddlerteaplease · 13/06/2016 13:15

Many parents of children with CF do their child's IVs at home. Is this an option for you? Speak to the ward your child is going too and see what support they offer. On my ward we do our best to accomodate siblings if the parents have no other option but to bring them in.

irretating · 13/06/2016 21:48

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

Benefit entitlement doesn't come in to it for using the Patient Transport Service. It's for non-emergency patients who do requite medical treatment, who don't have access to transport and can't travel on public transport. I've booked it a few times and not once been asked to provide details of income, benefits or otherwise.

PALS should probably be able to give you more info on this but do look in to it.

Toddlerteaplease · 14/06/2016 06:50

We don't provide hospital transport for anyone. Unless there is a medical reason why the child can not travel by car. We are a specialist centre so have children from miles away and they don't get transport. Sometimes GPs will provide it but not all will.

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