Oliver has been receiving the high rate for personal care since we first applied. Nothing for mobility because his legs worked. We had to reapply just before Christmas and I said to my husband “they’ll lower it to middle rate” and he laughed and said they couldn’t as he was no better in real terms- he still needed 24 hour supervision.
Fast forward to today and I got the letter- middle rate for personal care as he needs helping to toilet for a few minutes through the night and low rate mobility. What happened to all the other pages of the form? You know the ones where I wrote about his lack of sleep, his night time wanderings if not supervised, his lack of awareness of danger which means he will try to climb over the stair gate at the top of the stairs if it’s shut and he fancies one of his “lets turn all the lights on in the house and any electrical appliance I can find” nights, his screaming and wailing if he is left too long on his own which wakes the whole household. The 2/3 hours sleep I am on with him. The getting him dressed and redressed in pyjamas when he has an accident with trying to keep him calm and quiet in the semi dark, and it goes on. I provided evidence from school, his doctor, paediatrician, provided numbers for therapists. Do they actually get in touch with anyone?
Our GP has recently prescribed something that might be able to help with sleep, when we feel he needs it. Why would it be prescribed if he was a good sleeper? The mobility I expected, I don’t think it’s right but I did expect it.
Needless to say we are going to appeal it. Along with all the other things we have to do we now have to put together an appeal- although the rules for this have changed since my last appeal, so I will first have to figure out the new system, no doubt put in place so no one knows what they are doing and the people who need the money get fed up and stop claiming. How can people who aren’t medically trained make decisions regardless of what the professionals say- it’s absolute madness!