To be cross on behalf of my friend - even though there's nothing can be done about it????

[FAQinglovely]

Her DD has scolosis (curviture of the spine), in addition to that she was born with 2 ribs fused on one side, and a gap on the other side where the rib should be, plus and extra "bit" (that no-one else has).

It's meant she has regular operations - first one was to straighten the spine and put a bar in to help her grow straight, the subsequent ones have been either to lengthen the bar, or to put a new one in.

It's recommended that these operations happen every 4-6 months, but the NHS seems to take the longer line and does them every 6 months.

However, it's such a specialised lot of equipment that's used that there's only 2 (irrc) lots of it around the country and obviously not many surgeons around to do it. Fair enough means that the dates may change.

They left her waiting 8 months for her last operation (bar replacement - which is a bigger operation) and not only was she in pain, she wasn't growing straight either (she's 4yrs old btw - so rapid growth atm).

They promised her that it wouldn't be a huge wait again and provisionally had her booked in for the 6th May (which will be just under 6 months since her last op).

Today she's found out the the op has been cancelled and probably won't happen until mid-July which will be another 8 months since her last operation.

She, naturally, is devestated that it's going to be another huge wait and I feel totally useless, and angry on her behalf. Her DD is good friends with my DS2 so I see her lots and last time she had the wait I saw how difficult it was for both of them. The DD was in pain and absolutely shattered constantly fighting her curving spine in a bid to walk straight (at first glance she looked like she was "straight" but a closer look you could see that one side of her body was dropping down - but she compensates for it).

Her mum (my BF) was drained as well, and now she's going to have to go through the whole thing again.

[differentID]

Is there any way that she could complain to the head of department? It's absolutely necessary that these ops are done no more than 6 months apart for a reason. My cousin spent pretty much half of his childhood in hospital because of these ops, and even now has a pronounced curve in his spine.
Poor little girl. Could you draft the letter to the Health Authority on behalf of your friend and sort of get the local press involved?
As you said, it gets very wearing for her, for them both I'm sure.

[FAQinglovely]

I don't know Diff - I only got a chance to have a quick chat to her this afternoon at school run time - will see her more tomorrow so will be able to find out more.

You know the stupid thing is that at one of her latest check-up appointments the consultant explained to her (my BF) that there is a possibility the the bar could snap, especially as it draws towards the end of the recommended time period (which as you say is recommended for a reason) and depending on which bit snaps and where it goes could either end up sticking out of her back, or sticking into something inside.

Surely that risk must increase the longer a growing chlid's body is left with a static bar inside

[FAQinglovely]

and I could be wrong, but I'm sure these problems with cancellations have only started since the actual surgery switched from one major Oxford Hospital to another, although all the other care (check-ups, etc is done at the one where the surgery used to be).

[FAQinglovely]

The worst thing is with the pain is that as she was born with the condition (was picked up at her 20 week scan) she never actually "felt" the pain of her body not growing normally..........that is until she started having her operations 2yrs ago.

Most of the time she doesn't actually say she's in pain, but her behaviour changes dramatically, and she's very difficult to manage, add that to the tiredness from a little girl still struggling to cope with full days at school (and she's one of those children who go hyper when tired) and the tiredness from overcompensating with her body position as it starts to "lean" and my poor BF is faced with a long period of really hard work and worry.

[differentID]

Has your BF asked about a support brace for use in the meantime- I know they are a fiddle to get fitted properly and they want her muscles to work, but perhaps some support for her spine while she's waiting for the op will help her to not tire so easily.

[FAQinglovely]

I don't know tbh - it's all rather complicated with this added factor of missing ribs and fused ribs and a metal extendible bar (but has to be replaced with a bigger extendible bar every so often)..

the only things I know for sure are the above mention facts, the fact the the op has been delayed again and that when her DD bends forward you can see the bar poking out of her back -eek!!

[saintlydamemrsturnip]

I think she needs to kick off big time, and might be worth talking to a medical negiligence solicitor as a stick to beat them with (i.e letter to the boss of the hospital trust copied to MP, councilors etc saying 'if anything goes wrong because of these delays I will be filing a medical negligence claim'.

What does her consultant think about the delays?

[kissyfurschaos]

yanbu poor liitle girl, bless her. life can be very unfair and cruel i know the nhs are stretched but ffs she is an innocent child in pain.
makes me wwhen I think back to all the nhs funds and time wasted on scrotes getting drunk on The Hospital show on CH4.

[differentID]

Poor little mite.

[saintlydamemrsturnip]

BTW I have been asked by various health care professional to make complaints when services are not up to scratch because of underfunding. Patient complaints are the only way things change so often clinicians welcome them- especially if you are complaining about things like waiting times.

[macdoodle]

oh poor little girl YANBU obviosuly
If i was her GP I would be writing some very strong letters to lots of people it really isnt acceptable, does she have a sympathetic GP, has she been to see her/him, most of us would do our best !

[FAQinglovely]

thanks for your all your ideas.

tbh I don't know too many ins and outs this time around - I only found out this afternoon that the op has been cancelled

From what BF has said her consultant is fabulous - he's based at the hospital where she started off having her surgery and where she gets all her other care. The surgery has recently been moved to another hospital (for reasons unknown to BF) and that's when it all appears to have gone to pot with cancelled/delayed operations.

And of course having the operations and immediate post-op care in a different place from the majority of the other care that's given means that those looking after any of the patients from "X" hospital means they don't really know their history - apart from what is written on a piece of paper, which is nothing compared to having staff who actually know you caring for you.