Help my little girl as been just left by bridgend trust

[SqueezyLouise]

Woundering if you can help me my little girls 4 as spina bifida / hydrocephalus , discolated hips and she's just been left with no equipment only a wheelchair that we had to fight for because they wanted to go to school in a buggy , we made loads of complaints after Reading bad stuff writen in her medical notes , in august she had her clubfeet corrected in Blackpool , and since October the doctor put a refural in to Physio we rang them up and app they never got it for ages and made excuses , we got a appointment today they said it was for equipment but when we got there Blackpool had sent them down afos they fitted them and did nothing else we asked for a standing frame but Physio said she asnt done that for ages and to her opioion Ashley can't go in a frame because of her hips , i spoke to head of Physio today and she said the physio is able to assess Ashley and said the appoinment wasn't for. Equipment , I'm sick of Ashley being left she can and wants to stand but needs support , we never been given any equipment all we ever been told to go and by it which we ave done before , I think it's wrong as ashleys been neglected by the physios and ave been 4 , 4 years

that sounds awful squeezylouise :(

i don't have any advice, but bumping for people who can!

Hi Squeezy, I live in SW Wales and my dd also has SB/Hydro, the dislocated hips and loads of other things.

Tia is 6 and I have had to kick off to get everything for her, I even threatened to get private physio for her when she was about 18 months as it was regarded not necesary for her.

I complained for ages for Tia to have a manual wheelchair, as she had an R82 Panda chair and she was getting frustrated about being stuck in one place all the time, I managed to get her a chair when she was 2 and she has been using one ever since, I don't have a stander for her as it stays at her school.

All I can say is contact the child disability team, ask if you can have a social worker if you don't already have one and complain about your LO being let down all the time and complain to the head of the physio services with regards to the way your LO is being treated.

Hopefully you will get some help soon XXX

Have to sympathise with the no help / equipment though. We've experienced the same.
Would SS - OT be able to help you? Think they have to do an assessment if you ask for help. (We've got a meeting in a couple of weeks between LEA, NHS and SS to agree what he needs and who ought to be providing what.)
FWIW ds's hips are dislocated too (cp, just turned 4) and he's not allowed to stand as it risks damaging the socket. (He's waiting for surgery.)
If he were allowed to stand it would need to be a prone stander (so not all weight goes through feet) and it would be for no longer than 30 minutes / day) apparently.

It's terrible , I've made complaints to trust and everything but they just laugh it off , the worse is I no Ashley can do more but they've never given her the chance , Ive fought for 4 years to get her things and even though I don't want to give up I'm gettin to the point were , I'm goin to ave to she here's so much stuff going on it's not fair , it's as if I've got the problem not them , I don't really bother with the disabled team but I'm just going to ave to rethink about them , I mean school can't do anything with her because they need involvement in physios , we did ave a Ot but she went on long term sick leave then I found out we was taken off there books , I told Ashley the other day we gettin somin to help her stand because she stands on to my sons cot but she needs extra support and I feel terrible now for tellin her because i should of known theyed let us down , it's all cruel , does tia go to mainstream school ? Even With that we just been to a tribunral with council and won , she goes to nursary now

Yeah Squeeze, she does attend mainstream school, I have found that if you don't keep on at them, they just don't bother, which I think stinks.

I would maybe think about complaining to your LHB about the shoddy treatment Ashley is getting and maybe threaten them that you will take it further by contacting the local press.

maybe post another thread on here with something like "advice on children with spina bifida" so that more people see it?
then you can ask other people what kind of help they get, which will give you an idea of the things you can go back to them and say you expect for Ashley

I would def second the idea of going to the local press too if nothing improves.