Good news, bad news

The good news is - there are two bits of good news.
The long promised shoes have actually arrived. My son, after 9 months, has a pair of shoes that don't further damage his feet, complete with soles, all the way from Sheffield via Lithuania. I'd like to drink champagne from them but don't dare do anything that might damage them.
Also, we've had a reply from CQC to say they've spoken to the member of staff who agreed his care package originally and although he doesn't fit the tick boxes, we can carry on with the package that works. Didn't need a meeting and they did listen - there are human beings out there.

The bad news is that the suction machine is still broken. Loan Store eventually sent a replacement for the obviously broken bit - at the third attempt, but didn't check the machine actually worked. It doesn't. There's obviously a more deep seated problem so back to the telephone again.

So, life in aggregate, is just a little less complicated than it was this morning.

All God's children apparently still don't have shoes

So, we went to the hospital (had to put in a formal complaint to get the uppers back from Lithuania!) and the uppers were ready! And we were told its easy now, another week and the soles will be fitted and he'll have a pair of shoes ........ So, it's now over a fortnight later and, not only no shoes, they still don't know when they will be ready - apparently the factory doesn't work on Fridays and someone has been off on holiday. Net result - no shoes. Better re-activate the formal complaint. So being disabled means you have to live in inappropriate footwear and being a carer means you have to shout at people until they threaten to cut you off for discourtesy. I am a reasonable person really - all I want is a pair of shoes for my son. Everybody else can go to a shop and buy them that day. If they aren't going to be ready as promised, at least someone could have told me .... again.

All God's children need shoes

At long last it looks like my son may be getting his shoes - soon but not quite yet. The tops are back from Lithuania where the NHS get them made, and they now fit - at third made to measure attempt. They just need soles - apparently Sheffield, and then he can have them. We only got to this point by putting in a formal complaint - it worked but should it have to be like this? He's been without shoes that fit for two years while this hasn't been sorted out. We thanked the lady 'for kicking some arses' but got a fairly blank reaction - she just seemed relieved we weren't taking the complaint further - why would we, all we wanted was the shoes all along, blaming someone wasn't an objective.

Where are the magic shoes?

We had to make a formal complaint to get any action on my sons shoes. (All gods children got shoes - so maybe he's on the NHS's side after all!) We've been waiting years - but we've just been informed that they are on their way back from Lithuania (?) and we might get a consultation in a couple of days to see if they fit. Why does it need to get to this level before anything happens. We had the same with his seating system, his wheelchair etc. etc. I'm only a serial complainer because I have to be - nobody takes you seriously until you shout.

Shoes and nursing

So, my son needs new shoes. But he needs special ones, we've been trying to get them made for at least two years now. He has three pairs - sandals, not ideal in winter, one pair that damage his toes so he doesn't use them and one pair that are two inches too long. So he has to wear them or his slippers. His new ones have been measured three times and arrived wrong each time, the current attempt is being made for the NHS (National Health Service) in Lithuania and won't be back in Sheffield (why Sheffield it's 80 miles away?) for another 2 weeks. Maybe they'll fit this time?

He has a care package but we've just been told the registration doesn't allow the nurses to work at our house - so major meeting next week to iron out what to do. He comes home if he's ill to keep him out of hospital - so just when he needs nurses, he can't have them. Oh, and if he comes home that also means we have to do the waking nights as well as days - he has fits and needs his airways cleared at night as well as during the day. So much for sleep next month.