Just swapped e-mails with another carer/friend. She's apologizing for having to drop out of the campaigning loop as her disabled son's condition has taken a turn for the worse. I understand her completely. I have to do it myself on a regular basis. As carers, we all understand and make allowances. It does mean we lose some battles because we simply can't be where we want to be to be heard because the care we do is more important than any meeting.
The people we find understand least are the paid professionals. This isn't meant as a dig at Social Workers etc. - it's simply a statement of fact. As a carer your first priority and prime motivation is the care - everything else comes second. There are very few paid professionals, no matter how committed, who would continue coming to work if the pay cheques stopped - and I wouldn't blame them.
It is however quite difficult when you raise an issue and are told, 'we decided on that at our last meeting - if you'd come you could have had your say.' I'm not saying that's wrong or that I have a solution, just that some understanding of the position we're in would be welcomed. I recently managed to instigate a working group to get a local issue on the agenda but then had to miss the first meeting for 'care reasons'. The result was that I didn't get told about follow on meetings and notes I'd sent in didn't get discussed. The working group has now gone off on a tangent and I'm going to have a battle to get the original issues back under consideration.
I offer this as a description of an unlevel playing field. I don't have a solution but it's certainly a problem. The extreme version of this is the carer who works alone and in isolation and never gets any consideration of their needs/views - and therefore no service. I know there are lots of them - I used to be one. I still meet them in hospital waiting rooms etc.. The more disabled the person you care for is, the worse this is likely to be - the most isolated and excluded tend to be those in greatest need (for the little evidence around, see the Mansell Report).
Carers and the severely disabled do need special consideration and more understanding than normal. It isn't easy putting yourself in their position but please try. Thanks.