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Hypermobility syndrome and the bloody DLA form. Please help before I go nuts.

(6 Posts)
LadyMaryChristmas Sat 12-Jan-13 20:13:33

Ds can only walk for a few minutes without the pain starting or before he falls over. He's 13 and it's so not cool for me to escort him to school, he also has to hold my hand for stability. He's seen the orthotics ladies yesterday (wehey!) who have said his feet are possibly the worst they have ever seen. When he has no shoes on they seem to squish out flat as the ligaments are far too loose and she could move them in all sorts of ways that shouldn't physically be possible. They are making new insoles and have suggested that he wears boots.

I applied for DLA a couple of years ago as I was spending a fortune getting him to school/getting him home due to the pain and the falls, but they turned him down. I put him an appeal but it was rejected on the grounds that he could actually walk. hmm He also gets overanxious and becomes distressed at loud and sudden noises but this is a new thing so wasn't documented on the form.

I was sent another form in November (it should have been sent back at the start of December. sad) but I'm not sure if I'm wasting my time. I have very little by way of evidence; they didn't contact the school or the physio that he used to see, only his GP who ds has seen once in 4 years. I have a letter from his paediatrician which states his problems but I'm not sure if this will be enough. I can give them the details for the orthotics whom he saw yesterday but they didn't bother to contact anyone who supports him last time. Is there anything else that I can do?

Thank you. smile

mariammama Sat 12-Jan-13 22:06:50

You can request copies of his medical notes from the orthotics people, it'll be all scrawls and abbreviations but proves you aren't lying. Either that or ask if they'll put their findings and advice in writing for your GP (and then you'll get a copy).

mariammama Sat 12-Jan-13 22:08:37

And take his weird feet in to show the doctor, so they have a fighting chance of knowing something about him when the paperwork comes in. You can ask about the funny gearing at the same time.

LadyMaryChristmas Sat 12-Jan-13 23:25:38

He didn't get to see a doctor last time, even though I said we would. I have a letter from the paediatrician though. They make it so hard. sad

Thank you for answering. smile

mariammama Sun 13-Jan-13 09:22:24

I meant show to your dr. They can't convince the dwp if they don't know the issue

LadyMaryChristmas Sun 13-Jan-13 12:11:34

Sorry, I had brain freeze last night. The paediatrician CC'd the GP in when she wrote her letter, it was very comprehensive. It would be better if the DWP got their own doctor to look at him though, I can't understand why they didn't do this last time.

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