DD has had 3 asesments since she was diagnosed at 4, the last one carries her through until she is 16.
The problem with something like her condition is that it is so variable. One week she can be in apparent perfect health to an onlooker, so a tick form based on what she can do on one of those days would take her off any benefit at all, and take no account of what she has to go through daily to be able to BE like that (medication, physiotherapy, care with where she goes/what she does/who she comes into contact with)
But then BAM, within hours she gets a chest infection, loses the function of half her lungs in one go, weight drops off her like a stone, its an effort to walk, to breathe, she needs to take a mountain load of drugs which make her sick, she is literally drowning in her own mucus and hasnt the energy to do the physiotherapy, is up half the night coughing and sweating her blood sugars go awry and she needs to go into hospital to be hooked up to IV antibiotics and blood taken every other day - sometimes her kidneys get affected and the drugs have to stop, and its a long hard slog to regain her previous health, and we pray that this infection hasnt damaged her lungs so that they never get back to what they were.
Added to that she's just a little girl. She's frightened. She knows this disease kills, and it kills kids, and it doesnt progress steadily, its insiduous and unpredictable. You need to care for her through that, when she just wants to be a little girl like her friends, to do what other kids do.
Her condition is genetic. 1 in 25 of us in the UK are carriers and we show no symptoms. So Pendeen, we cant be so sure that it will never affect us. My life and my family's lives have been turned upside down by the genetic bad luck of the draw. The reality turned out to be so far removed from the future planned. And depending upon the fates of what day my daughter gets called for her PIP assesment will literally dictate whether her life is liveable or an extra struggle over and beyond what her future struggles will be, as she gradually deteriorates year on year. The average life expectancy for a child with her condition is 31. Do you really think it is fair that she, and so many others like her, should be one pushed by poverty to the edges of society, not even given the dignity of a decent quality of life just to balance the books of politicians who only appear to have the interests of the financial services and their friends in big business in mind.
At least the DLA forms allowed the full medical history to be taken into account, verified by consultants and other medical professionals. Not a simple tick box form filled in by a call centre kid who wouldnt know his arse from his elbow.