I cant believe what they are doing tbh.
Well I can actually, but it doesnt stop it being terrifying for anyone who is disabled or cares for someone who is disabled.
My 11 year old DD has cystic fibrosis. Its a progressive disease, how she is now is the best she will be (and long may we keep her this way) but its a constant battle with many hospital visits, 11 different types of medication regularly throughout the day, plus extras for specific infections, inhalers, nebulisers and physiotherapy. Some nights she gets night sweats and nightmares because of infection or some medications, and wakes up screaming and unable to breathe.
At the moment she is quite well. She can run about with her friends and its important for her to do extra sporting activities while she is able to, so as to keep her as fit as possible, because physical fitness is a better indicator of prognosis than something like lung function. This costs money of course. Its important that she eats well. She takes so much medication which affects her digestion and appetite, and she requires high calories and high fat and protein, but its got to be 'good' fats and calories to avoid issues relating to bad diet, as her liver and kidneys are under alot of strain from processing all the drugs. So again that doesnt come cheap. And she's fussy, but you cant risk letting her go without, so you buy what you know she will eat, whatever that costs. Soon she will get diabetes, and her diet will become even more difficult to manage and she will need more medication and intervention. These are the kinds of things that her DLA pays for, things which dont necessarily fall into the normal categories of care, but which have a profound effect on her health and keep her out of hospital inpatient care.
We are very lucky, in that we recieved good advice in filling out the forms and she gets the highest rate of DLA for care, which obviously has the knock on effect of other benefits, as I work from home. Her head has ducked as the axe swings this time, her DLA assessment goes through until she is 16, but whether that will still apply in a year or so I dont know, and what will happen to her when she hits 16 and needs to apply under new rules I cant say.
It does seem to be luck of the draw alot of times. Many people with the same condition who seem to me to be worse that DD are on lower rates. Some people who seem to be better are on the higher rate and get the mobility (we havent applied as we dont have that issue yet) yet they all have the same condition. The problem with a condition like this is like the poster above, who's brother had the kidney problems, is that it can change from day to day, from week to week, and a short assesment on the wrong day would have serious implicatons on their lives. The old form may be long and cumbersome, and in many ways not easy to apply to many specific illnesses, but it did need alot of medical proof with it, and did seem to do the job although maybe not as well as it should. Its a waste of time and money to reassess alot of conditions, for which there is no cure, and which will only get worse - they could save some money that way for a start - a list of 'one off' applications for a list of progressive disease.
The more I hear about this, the more I think its another one of these crony-benefitting situations. I cant even say any more its just sickening me so much....