Respite

[Pazzaz]

I dont know arranged respite with my sons
care home and then they cancelled four days
just sharing really, felt quite down about it earlier. I rang the manager up and we discussed and wrote the dates down for three
months in advance and then two days later
she cancelled two of the dates. Probably
doesnt seem anything to them but when you are caring for a severeley disabled teenager on one owns - quite alot really.

same thing happened to my ds who is 17 and has asd, respite kept cancelling so i told them that next time i would bring ds son in and they could tell him personally, ds has to know whats going on or gets very anxious, so told them that i was not taking the blame again, turns out i pulled him out anyway as he was made to sleep in bed in staff office with a shelf full of books hanging over bed ( too terrified to sleep in case shelf fell on him )also came home in same clothes ( had over night bag, jamas, tioletries etc ) covered in foodstains, not showered, hair not washed and toothbrush untouched, their excuse was that they had an emergancy admission and that ds got night staff bed and night staff had to sleep on floor, ( i think i was supposed to feel sorry for night staff ) hopefully your respite will be better but the only way to get things done is to hassle the living daylights out of them and point out their mistakes ( they dont like that ) good luck.

Pazzaz that is really tough. Its very unfair of them to keep cancelling at short notice without a good reason.

anett - that is dreadful - I hope you have complained long and loudly, I would hate to think that such level of care is considered acceptable.

We have the same problem my daughter is severly disabled we have had a lot of respite cancelled just lately and sometimes it can be like a few hours before she is due because they have not got a nurse or the weather or they have not got room.I find it so infuriating especially as it is booked 6 months in advance.

This is shocking, I realise how lucky we have been. Can you involve social services or at least copy them on emails about the cancellations? AND who would want their child in such a terrible place as anetcurtain described?

omg i was advised to get assesed for respite but that has totally put me off what a terrible situation all the canc (impossible to explain to them) and anettcurtains exp so ghastly