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SN undiagnosed genetic conditions

Can i complain??

2 replies

Penguina · 21/09/2016 08:44

Dd is 16 months. She is undiagnosed but has had seizures since birth, sdd, movement disorder etc etc. She 82cms and 10kg so pretty tall. She has nowhere to sit except her highchair. We used to sit her on the sofa but that became dangerous once she slipped and couldn't move to get back to a safe spot.
Approx 11 weeks ago the physio ordered her a "floor sitter" so she could sit somewhere else and we could do activities with her. It's still not here. I have chased and chased it and have been told it takes 6 weeks from when they ordered it which has passed. But no one seems really that bothered. My poor girl just has to sit in her highchair at the table all day.

Can I complain to anyone given that it's something we aren't paying for? I feel so sorry for her. No one seems to give a flying fuck about her welfare and never have done. We are just left to our own devices.

A leckey standing frame has been ordered as well apparently so we may get that next year....
Am waffling....

OP posts:
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Overtiredbackagain · 28/09/2016 22:05

We're taking delivery of a squiggles chair tomorrow for our 15 month old, it's taken 4 months.

It's very frustrating isn't it x

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Cathaka15 · 29/09/2016 22:22

My dd is 14 now and it doesn't get any easier. But you do get used to it. Unfortunately it is up to us to chase them all the time and it doesn't matter at all if you're not paying. It's for your dd and her health and well being. If you have a social worker you should contact them too. they can sometimes to the chasing for you and can push things along much faster.

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