Quote:
Originally Posted by Chirley
Alcof, I'm so pleased to hear everything is coming together and that the Doctor is filling out the forms. I'm just a bit disappointed that you had to start the ball rolling rather than the Doctor initiating this himself. Thank goodness you are a very good advocate for your Dad. But what about other patients of this Doctor who don't have advocates such as yourself? Do you ever wonder why sometimes they just don't mention these options themselves and you have to do the work? I was in that position a lot for myself and now for my mother and father...it's frustrating isn't it?
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Yes, Chirley I agree. In an ideal world we could just relax and just provide the moral support. It is so exhausting, constantly being on top of what is happening - and even knowing what to ask for.
I guess the way I've been rationalising it is that in NZ with rare diseases there is so little experience and knowledge - and also nearly all medical treatment is government funded. Public health in New Zealand is by and large very good. But it is a largely a thankless task that I do not think I would have the patience nor inclination to do.
But yes I do agree. it would be lovely if everyone that got diagnosed with a scary disease had a loving advocate with the time and energy to put into researching everything for them and standing by their side the whole time. I used to be an advocate carer for intellectually disabled people and that is what we were taught. Be an advocate for the person. I guess it is forgotten sometimes in the medical world that sick people need advocates too. That they sometimes don't have the strength, inclination or will power it takes to fight their own corner and ask WHY all the time.