You're still not crippled enough, Sorry

[jessiroarrr]

After a particularly gruelling visit to hospital today mum was kindly informed informed that she would have to wait until August to find out if she will be given a new medication for her rheumatoid arthritis. No big deal you may think, couple of months and all will be well. That's what I said when this was told to us the first time, OVER A YEAR AGO

Comments

[jetlagjen]

My job is all about those targets. There are a dozen different sets I could list of the top of my head. The *idea* behind them is a good one - make sure people don't have to wait too long in A&E, for example, fine and laudable goal. However, they have been very poorly written such that there are gaps you could drive at artic through, and the implementation in a lot of trusts is exactly the kind of box-ticking patient-screwing crap you describe.

You may be interested to hear that things are changing quite significantly. The Care Quality Commission (CQC) has had full powers over NHS Trusts for three months now, and the target system they use is very, very different. The whole focus is on what they call "Patient Outcomes" and a lo9t of the evidence they use to back it up is from patients rather than admin teams who are well versed in fiddling numbers. One of the things they hope to do is stop atrocious things falling between the cracks. It has yet to bed in and start making much difference, but I'm hopeful that it will help.

[jessiroarrr]

Its changing finally and its hopefully a concept which will be very successful and have a hugely positive impact on many many people, but from a purely selfish point of view its far too late as mums condition degrades with time.
On a positive note, better late than never

[poppymayhem]

I empathise! Having worked with disabled people for several years, I've come to detest NICE and the various red tape mazes that obstruct the very people they are set up to help as they try and obstruct people taking advantage of the system (who ironically are usually the only ones with the energy to get through it!)

If your mum is applying for DLA (or contesting a result), I have some advice about it, which basically boils down to writing it out as if the worst day (needing help dressing, standing, walking etc) is every day. It's a horrible negative affirmation, but the DLA demands it sadly.

You have every right to be furious - find something to hit and let it out, don't keep it bottled it inside.

xxxxxx