When you have a physically disabled child, you get a referral to the Orthotics and Prosthetics Department at the local hospital. They organise fittings of splints, casts, specialist shoes etc etc.
My daughter needs specialist shoes, amongst other things. Without them, she cannot bear her weight at all, as she needs the extra support that they give her round her ankles.
These days, she received the Orthotic Service through school. Last summer, when her supportive sandals became too small, we asked for a pair of winter boots to be ordered. These boots cost about £80, but you are not able to buy them in the shops, or even online.
We were told that she no longer needed supportive footwear and that we could just buy any old pair of shoes off the peg.
Well, we didn't believe that! For one thing, we need her to weight-bear to assist with transfers - on and off the loo, in and out of her wheelchair etc. Another is her comfort and of course her dignity.
So, we had to pay £120 and travel to London for an independent assessment, by a private orthotist who, of course, recommended specialist footwear (and splints, for that matter).
So, £120 of our money, in order to get £80 of the NHS's money. Great.
The boots are on the small side and it will be Spring soon ... just gearing myself up to go through it all again.
Your experiences reflect our own. My son also uses wheelchair, gastrostomy feed (though we use a pump rather than bolas syringes these days), various orthotics etc. similar. My own blog is at http://nedluddcarer.blogspot.com/ and we've been caring for him for 28 years. Good to know we're not alone (in an odd sort of way) and that it's not just us who have these difficulties.
ReplyDeleteAll the best,
Ned Ludd, carer.