Well we have finally had our DLA decision and it was a no!! Had been warned that they often say no first time and then change decsion when you appeal but was hoping, stupidly, that that would not happen. In essence they said she does not need any supervision with regards to bodily function during the day or night she can do that herself and she does not experience pain on a frequent basis. Here are the reasons and my verbal responses when I called to disagree see what you think and any advise will be greatly received. Mobility: She only rarely develops pain in some joints after 20 mins walking uphill but is fine on the flat?? She has been diagnosed with chronic pain that is there all the time, sometimes I need to carry her downstairs in the morning because it is so bad first thing. It does worsen when exercising and involves her legs, feet, hips, back hands and arms and causes a permenant headache. She also dislocates frequently so far she has dislocated her hip, shoulder, wrists, elbow her fingers and toes daily, her jaw popped out recently. Most days I have to massage her legs and feet for around 45 mins just to try to ease some of the pain. Even as the duration of her mobility increases that just means shes getting stronger it does nothing to reduce the level of pain she feels. She does not take pain med - many with her condition do not respond to pain med the same way as others, it does not work for her if there was a pain med she could take I would give it to her! She can ride a bike (oh yeah thats why we spent so much on a specalist bike last week) and takes part in PE at school - she cant ride a bike and does not go to school! She fatigues after exercise - this is normal for children her age. Care: It is normal for a child of 7 to be incontinent day and night so no extra care is needed above the normal. She is able to take her self to the toilet and at 7 should be able to change her own nappy, clothing and bedding. - What could I say to that. I explained that she cant go to the toilet as she has no awarness of when her bladder is full since her pelvic floor gives way before it fills. She may need encouraging to do her physio at home but at 7 she should be doing it alone not needing anyone to supervise or aid her. - Idiots!!! Most of her exercises requqire two people her and someone to support, hold or manipulate her. And yes when my child is crying in pain and cant carry on I shout from the kitchen get on with it like any good parent would?? I now have to put into writing why I think the decision is wrong thinking I should maybe get a third party to help with this any suggestions?
Posted on: Fri, 08 Aug 2014 17:20:12 +0000
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