Coping with long term hospitalisation of child

[Sofabitch]

Has anyone else got a Dc that has been in hospital a long time.

My DD has been in hospital as an in patient for 9 months now and we are really struggling as a family. As the oldest child it feels as though my children are missing out on so much as well as her.

It's been so long we are out of flexible working options and the whole family is starting to crack under the pressure. In the early days we stayed in the Ronald McDonald house. But with the hosputal being 20 miles from home it was just impossible with schools etc

I feel so constantly guilty and stressed esspecially when i have to leave her in pain.

Anyone have any words of wisdom to stop me going insane. I'm really feeling like life isnt fair right now.

Financially its a nightmare as they have stopped child tax credits and child benefit now and the cost of travelling back and forth to the hospital is just really adding up.

And to top it off they are now considering sending her to another hospital 100 miles away.

I'm so sorry you and your family are having such a hard time. I dont have much to offer but wanted to bump the threat for more knowledgeable people.

I'm assuming you already will have, but incase not definately find out if the hospital have a family support unit type of thing. They might be able to offer advice about finances etc. Possibly worth speakibg to CAB about any other benefits you could possibly apply for? Maybe some sort of carers allowance? If your daughter has a diagnosed condition you could see if theres a charity that works with people with the condition and get in touch to see if they can offer any support. There are also some charities that can help siblings of ill children, depending on the situation.

I hope you get the help and support you need x

Hi thanks thanks for the reply.

She doesn't have a known condition. Part of the reason she has been in so long i think. There is no unit and I can't get to the CAB as I'm so short on time. Perhaps actually i might be able to use there email/telephone advice line.

When looking on line it seems that most things aren't paid if you are an inpatient.

Perhaps I'm just hoping to find someone who has been there and understands the life on hold feeling that I'm experiencing right now.

I work at a CAB. If your child was hospitalised under the age of 18 then the DLA should continue indefinitely. If you don't have DLA, I would definitely apply, it's not about what she has, but how it affects her in terms of additional care/supervision. DLA can have a big boost on family finances in terms of additional tax credits, the DLA itself and you can claim carer's allowance if you earn under a certain amount.

I am assuming your daughter is under 16, otherwise it is PIP.

CTC and CB should also definitely continue as long as you're contributing towards her (which you are). Have you given HMRC a ring to ask what's happened? They normally send a review to complete in July and if it's not returned, your benefits can stop. I wonder if that's happened here? Feel free to message me. I think making sure you're getting everything you're entitled to will give you a bit more breathing space.

Hi so sorry to hear about your DD, like you our DS was hopitalized for months at a time, the longest was 15 months over 100 miles from home. I stayed with him in his room as DH was able to care for the 3 DCs at home. Having said that it was awful, most of the staff were good but in all fairness I was probably a PITA and being an expaediatric nurse/midwife did not help.
As for benefits we were not affected and we kept them all.

Hope things get sorted for you all, good luck and take care.