Victoria on Radio 5 has just asked to hear from any parents in this position this morning - she says they want to know what the scope of the problem is.
Obviously this is following from Riven's situation. Riven also wants to expand the focus off her, and on to all carers struggling with this.
Her show is 10-12 and the contact details are here www.bbc.co.uk/5live/shows/victoria-derbyshire/get- in-touch/
If anyone is in the same situation with respite (because we know there are lots of us out there) or you know of anyone who is, maight be good to send an SMS.
Could be a good way to move forward with this and show how big the problem is and that real changes need to be made.