need a bit of a rant about respite care and the lack of understanding

[mummeeee]

prob not going to be able to get it all down as my dd has such complex needs, but just find the whole 'system' so confusing and difficult to handle. Feel like we're navigating our way through a swamp most of the time, just trying to get what I think we're entitled to....or if we're not entitled to it why can't someone just tell me and stop getting my hopes up??!! No health care professionals in the community (hv, community health nurse (paediatrics) or social workers) seem to actually understand what her care involves, or whether this complex care entitles us to any help/respite. However, our hospital consultant is confident we are entitled to it and even that it was included in our original care package when we were discharged from hospital. All I want to know is....are we entitled, if so, where does the money actually come from (as this seems to be everyone's answer i.e. wellllll, not from us you see, it's the PCT blah blah) but how I am I supposed to understand the workings of the health care funding system when as I say none of the health care professionals can give us a definitive answer. Also, how can we actually get the right person's signature on the right bit of paper to actually authorise the 12 hrs/month respite we're told we're entitled to and we want to save up to ensure we have medical cover when I go into labour with baby number 2????

dd is 16 months old & has a serious but very rare medical condition. She became ill without warning at 10 weeks old and spent nearly 6 months in hospital (discharged in Jan 09). she has a central line (semi-permanent iv access) and is connected to an iv drip every night at home and flushed off every morning. dh and I do this every night and morning - if one of us can't be there, we have v kind neighbours who come in and help. Their help involves holding her hands out of the way and keeping her safe (procedure means dh or i need to go to bathroom and wash hands, keep sterile etc, so we can't hold dd still at same time). Hence, it's a 2-person job, and 1 of those 2 people need to be dh or me. Granpdarents live too far away and though we've tried to train them, they're not confident to be able to perform the procedure. It's v difficult to account for all eventualities, so really a v experienced nurse is our only other option. (dd is v prone to infection, regularly hospitalised, pump alarms etc etc)

dh was made redundant as a result of dd's illness (saw a lawyer, got the best we could), so now works from home. I am back at work 2 days/week, but involves travel so we have to be v organised. So far struggling to cope with neighbours hols etc. Expecting baby number 2 (realise that might sound mad, but happened sooner than we thought.)

Spoke to hv the other day about respite (again!). Tried to explain that only options for care during labour of baby number 2 seem to be, (1)get dd hospitalised (e.g. say we're concerned about her temp or something - i don't need to say how much this is a bad option and will end up costing HNS (i.e. taxpayers a LOT of money). Also, her regular hospital is not near the maternity hosp i'll be in OR (2)dh doesn't attend birth & I go through labour alone (obviously me & dh not happy with this option either), esp as my family live a long way away so I would be alone & had v traumatic birth 1st time. When I explained 2 options to hv, she said hmm, yes, sounds like a good idea to do option 2!!!

am i being unreasonable?? I need to arrange nursing care for my dd for approx 2 days in 6 months time. The same people were employed for 15 days when we were discharged from hosp the 1st time, to make sure that we were settled performing the procedures at home, so I know & trust the nurses involved....and it would be a LOT cheaper than getting dd hospitalised or worse, her becoming ill from improper care & needing 2 weeks in hospital.

rant over. thanks everyone

Hi Mummee, what an impossible situation & sounds like a useless HV you have.
Somebody needs to take ownership of dd's respite care plan, do you have a specialist SN social worker.
If so she should be able to co-ordinate everyone to ensure that you can have a break or a worry free labour ideally both.
The social worker or family co-ordinator/keyworker should be in a position to host a multi disciplinary or Team around the child (they seem to be called all different things depends on postcode) & agree a care plan.
Have you looked at residential respite?

It may be that you ahve to shout loud & hard at either your social worker, gp or dd's paed to get the help you need.
Good luck x

Hi Mummee, that sounds really tough going - I feel for you. Your HV sounds like a nightmare.

Agree with anon that you need a social worker to own your case, your paed or GP should be able to refer you to one.

In our county our local childrens' hospice not only provides respite care for terminally ill children but also respite care for children that require nursing care due to a long term condition e.g severe diabetes (don't suppose you're in the SW?). It might be worth looking at your local hospice to see if they offer similar nursing respite care.

Another thought is to speak to the lovely team at SNAP. They can probably help you find short term cover for say a couple of weeks, and often advertise posts that are being funded by LAs so they should know how to work the system. I'd have thought that they would have ex-nurses on their books.

SNAP

Good luck xx

Hi anon and salty

thanks so much for your posts. SNAP in particular I had never heard of. It may well be expensive, but thinking of contacting them anyway, as we could try to find someone who could nanny for a month or so, over the period around my due date; thereby making the whole experience better for us all - consistency for our dd over a time of change etc

had a social work assessment before but didn't seem to move us forward - was a trainee though. Hopefully now scheduled another assessment for Nov and you never know, they may 'find' some way of funding some respite.

have never looked at residential respite, but maybe we ought to think about it. she seems so young; but perhaps we need to 'let go' a bit more.

thanks again

It may be worth looking at whats available locally, lots of children your dd age would go to stay with family etc during the birth of a little brother or sister.
Residential does not necesarily mean a residential unit, often it is provided in the home of a "link carer" or similar. They become friends of the family & should be a good experience for you all.
I hope you get sorted.

Sounds like you really have you hands full!

Maybe you need to get your Paed to put pressure on the Social Services to re-assess you for respite: for some reason, the higher up the scale the more clout they medics have for these requests - sad but true.

You have to emphasise that there will be no-one to look after dd when you are in labour.