#1
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Hi (this is my first post sorry if I ramble on) I was wondering if anyone could help,
my sister has been told today that her 5month old has Spinal Muscular Atrophy and she is unsure what help there is, she has been told he will never walk or crawl and may always need a feeding tube, he stops breathing and goes blue (5 times this week). he is still in hospital but when he comes home she doesn't have any of the equipment that the hospital are using, the chair he is in at the moment costs £120 alone and as he cant sit up it is something she desperately wants to get him, she has put in for DLA but we don't know if there is any other help she can have, she doesn't have a social worker and we are unsure if she can ask for one or if the doctor has to request one for her, any help would be really appreciated
#2
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hi,first of all i'm sorry to hear about your nephew.
If he needs any equipment at home this should all be provided before he is discharged home,oxygen,feeding stuff etc.the chair should be provided by the physio or OT.
not sure about the social worker as we dont have one but good luck with everything.x
#3
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Hi, sorry to hear about your nephews diagnosis. Your sister can ask for a social worker herself, it can sometimes take a while to get one but as long as your persistent then they can be very helpful. If you contact your local childrens disability team they should be able to tell you what kind of wait their is (but don't be fobbed off with too long!). We had ours to arrange respite for our son.

As crissie said, OTs and physios can help with equipment. If theirs something specific as he gets older that you think will help him and they won't fund it, their are lots of charities out there that can also help. Goodluck with DLA, once that's sorted, depending what rate he's awarded your sister could put in for carers allowance (depending on how much/if she works etc) xx
#4
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Thank you chrissie and lucy for your replies, my sister is currently on maternity but wont be returning to work so I will let her know about carers allowance, last time she took him home they didnt give her any equipment so maybe more of a pushy attitude is needed, but on a positive note our childrens disability team are great (I use them for my son) so i will call them for her tomorrow see if they can help, Thanks again xx


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