By appointment

Half hour trek each way to wheelchair clinic for ten minute consultation on damaged footrest to our sons wheelchair today. (Normal wear and tear on chair.) It's being mended - the meeting was to agree it, not to actually mend it. It'll be a month before we get a replacement. (Normal wear and tear on time.) Meanwhile we had to be in two places at once as usual, so I did the wheelchair, while my wife did the NHS meeting.

These consultations are important and we wouldn't want to miss them, and for people with a disability and their carers it's normal life. My own assessment is that we do about three appointments (each about half a day each) every week. They're all important but they do take up a large part of our and our sons life. (not to mention his petrol - todays wheelchair trip was a 50 mile round trip, no expenses claimable.)

In an ideal world, we'd have one professional who we could contact with all our problems and they could get things agreed/authorized as necessary - but the world isn't like that. So we'll just have to continue shoehorning our life around the professionals. Getting a life is hard when most of your time is taken up in waiting rooms, meetings and consultations.

We did have one minor success - our very helpful occupational therapist agreed to attend the wheelchair clinic as well, and while there, agreed also to sort out some problems we have with a damaged hoist sling and supplies of some medical equipment we'd been sent the wrong thing for.

In the main, the people are helpful (in the main!) - it's the systems and beurocracy that make it hard work.

P.S. Why is the medical profession the only one that gets away with being always massively late for 'appointments'? If your solicitor, bank manager or other professional made you sit in a grubby waiting room for three hours every time you went there, you'd be upset - the medical profession seem to be alone in their total disregard for the value of other people's time.