I'm a bit unclear whether the NHS are beginning to see things from our point of view a bit or whether it's just another admin. error. I seem to have had an invite onto a training course to help me be an 'expert patient' with a long term condition. As you're probably aware, I don't actually have a long term condition (if you don't count terminal grumpiness and an incurably black sense of humour), though I do care for someone who has, who's unable to speak for themselves or manage his own condition.
I think I'm going to regard this an opportunity and go on the course as an 'expert carer'. If it's a mistake ... tough. I should get something out of it and the NHS should get a perspective they weren't quite expecting. There is a real place for 'expert carers'. My wife used to be a nurse and I worked for a housing association, and we also have almost 30 years each specialist experience with our son. I suspect that's rather more training and qualification than most of the professionals we have to deal with, but it actually counts for just a little more than nothing. Carers, no matter how experienced, have no status when dealing with professionals in the NHS or Social Care system - and we're often treated as an irritation rather than a resource.
We do get the lip service of being 'consulted' about various things - usually at things like 'visioning events' where no real decisions are being made - but when it comes to one to one discussions/negotiations with professionals about actual care, the attitude is sometimes dismissive, rarely cooperative and quite frequently confrontational. I know respect has to be earned, but by my reckoning, it takes us about 2 years to earn that respect from each new member of staff - and with our NHS and Social Services staff rarely dealing with us for more than a year before they move on/get made redundant/are re-organized, we don't usually get there. They do however expect us to respect them from day one.
This is unfair and counterproductive. It could be solved by giving long term carers (anything over a year or two) a recognized status at least on a par with some of the untrained, newly recruited assessors we are regularly faced with. There are good Social Workers and good NHS staff, and they tend to be the ones with experience. Why can't the same respect be shown to carers?
P.S. Taking away Carers Allowance from people when they reach state pension age doesn't show any respect for long term carers.