Transfer or care from one hosital, to another?

[Mouseface]

Hello.

I'm just wondering if any of you have transfered your DCs care, from one hospital to another, due to the care, or rather lack of it, where they were?

I want to move DS from his current cleft palate team to another one.

We've had no support pre or post op and I have little faith in them at all.

His cleft nurse has never called to ask how he was following traumatic surgery, a year ago yesterday.

DS was rushed back to theatre with a major bleed an hour after the op and ended up back in PICU.

He is due another palate op around May.

Not one memeber of his 'team' has been in touch to ask for an update, is he eating/talking/drinking yet (he isn't BTW, he's still tube fed).

Nothing.

I'm wondering if I'm going to have a fight on my hands?

If you have a supportive gp itmight not involve a fight. If there is no obvious sencond choice hospital in the pct, it might be harder, you might have to go back to the original team, explain why you are dissatisfied and demand a referal to another team from them. Would start by discussing it with gp though. Good luck

would as hes due so soon for another op it be best to let them do the op but see if their is any other team that can visit him afterwards or can you speak to the dept head of the(cleft nurses)letting them know how unhappy you were last time as nobody contacted you and that you have been waiting for someone anyone to remember your still there as he is still being tube fed, may i ask also does that mena that perhaps the next op needs to be re sheduled if hes still having probs from the first bless

Hiya!

That's not great. Not sure what happens re transferring between services here. We did it but we moved from The Netherlands so Luuk could be treated at Sick Kids in Edinburgh due to major issues with his care in the Netherlands...........similar but different as we actually moved country.

Have you tried to contact anyone in the team to talk about how you are feeling and what your expectations were and how they haven't been met. Maybe it is resolvable, although I do think it's definitely not on that no-one followed up and that they need to know that.

Hope you can get it all worked out one way or another. You need to be confident in the team looking after your child, especially if they need surgery. xxxx

Sorry title should read 'of' care, not or.

That's twice in 2 days I've done this!

betty - He has Sensory Feeding Disorder so the NG has to stay I'm afraid.

The team in his current hospital were annoyed that he had an NG when he had his first op to repair his soft palate and close his throat at the back, and the surgeon 'demanded' that I keep weaning him 'until the tube can go'

He is still non oral and non verbal.

I have spoken with DS's Community Children's Nurse and his GP who is going to refer him to Manchester Children's Hospital, where they have a fantastic cleft team apparently.

My half brother has just gone back for more plastic and repair surgery on his cleft and he's now 23! He had a bilateral (SP?) cleft lip and palate.

It's only 1.5 hours from us and we have family there so I would have some support too. DH would need to stay here for DD to go to school.

His current hospital is 2.5 hours away.

I made a complaint at his follow up appointment with the surgeon, which was 9 weeks later than planned, because his Cleft Nurse said we refused to attend morning appts.

In actual fact, she asked which would suit us better am or pm appts, when we first met her.

Being so far away, we said pm so we could get DD to school.

And before his first op, on the day, I complained to the surgeon about the lack of contact and support that we have had from her and her colleagues. We'd had no explaination of what would happen etc.

Nothing has changed.

I'm not sure if it's too close to his next op, I just can't bear being on that ward, with no help or support at all.

It's traumatic enough without having no faith in the team or staff there.

DO you think the lack of follow up from the specialist nurses has been due to your distance from the hopspital? We found this with DS (different problems to yours) - they just left his care to the community nurses. The CCNs were excellent and really were all we needed and to be honest. Although we went back to the hospital to see the doctors I don't think I could have faced going back for regualr nurses appointments as well.

I would pursue the referral to the Manchester team. there might be a slight delay in the may op depending on their "work load" but it sounds like you would be much happier and more trusting of the care he would get there. I would say, don't settle for second best, you have raised these issues with the existing team, they have either ignored them, not told you the full story or not answered you at all, so frankly that is not good enough. If you have the energy I would write to the PCT and let them know why your gp is referring you elsewhere, someone needs to provide a well placed kick up the backside here.

It could be distance. DS's CCN said that when they PCT were 'dishing out patient areas', we were given to this hospital (rather not say where) which caused an uproar because of how big our county actually is.

Lots of CCNs said that there would be no way this could work.

His cleft nurse is based there so has a 5 hour round trip to come and see him, which she is supposed to do.

I'm going to fight for a transfer. I can't face taking him back there.

He has been in PICU there 3 times fighting for his life. It does hold very bad memories for me, for all of us.

I was told to call my DH and get him there asap on his second emergency admission from the ward. His lungs collapsed, he stopped breathing and nealry died.

The staff hadn't listened to me that there was something wrong with him.

I was ignored and his treatment was delayed due to him having MRSA, which he didn't.

I think I've posted about that before.

I just can't face taking him somewhere with so little support

Thank you for answering me.

You have more than enough reason and evidence to get your gp to refer you elsewhere. Fight all the way for it, I am sure from what you have said that it is exactly what I would do.

Thank you Sparkle

I guess I'm worried that they aren't taking new patients on or that his current team will refuse to pass over his care.

It's out of my control now, I''l wait to see what happens next.

I feel better just for posting. It's sometimes a lonely old world this full time caring, isn't it.

I don't think his current team can refuse to pass over your ds' care, and I am sure they will take him on, especially as his case sounds a little more unusual than most of their cases will be.

It is an extremely lonely world being a carer, I completely understand how you feel, Feel free to find me for a good cry any day, I am always around, and I like the company.

Hi- just wanted to 'second' Sparkle-
You sound like you and your family have been treated very badly-

It is lonely sometimes being a carer and this is made even worse if you are not given adequate after care and information

I hope you get the tranfer

Oh Sparkle - just reading that has set me off!

I'm so much worse when I'm tired too, plus DS has had two very bed nights on the run.

You know that beyond tired feeling......

Thank you to you all for the support.

I'm normally a lurker here but I'm pleased I posted