Advocacy to help access health care

Thank you to all of you who responded to my last post.

On a personal level, it's comforting to me to know I am not alone in experiencing these problems.  Having been called "delusional" for my medical anxieties in the past by mental health, it is nice to know they are anything but.

On a practical level, I was hearing a number of things in that discussion largely around how to access GPs etc and the absence of reasonable adjustments to communicate with them etc.  Clearly, there is a need for a huge amount of training in this regard. There are further issues with respect to the physical and psychological misdiagnoses and unhelpful or inappropriate treatments sometimes arising from professionals' ignorance.

I have also dug into the helpful links provided by Autonomistic on Autistica's work to progress the issue of annual Health Checks, akin to those offered to people with a Learning Disability.

This post is specifically about advocacy.

Given that so many of us have difficulty in self-advocating in medical environments, to the point of not even getting through the GP's door and past the receptionist to self advocate, what are our thoughts specifically with respect to a service to help us get into the surgery and communicate with the GP.  (Email can do a lot, but regrettably we can't be physically examined by e-mail.  We have to go in sometimes!)

My ex-husband who was a nurse used to advocate for me.  He could approach the reception desk for me, make the phone call for me, intervene and explain what the problem was when I could not find the words, explain what was happening when sensory overwhelm was pushing me into shutdown or meltdown, negotiate reasonable adjustments for me, even made medical decisions for me, when I could not.

Without his help now - I'm stuffed.  Can't get any health care at all.

It seems to me that what is needed to plug the gap for those who don't have a family member to step in, is some sort of autism expert service embedded into the NHS to advocate even at short notice in emergencies.  No such service appears to exist at present.  I've been trying to find one for two years.  Adult social care won't help, existing advocacy services don't go to GPs appointments with people and it takes weeks to get an advocate anyway and the Learning Disability and Autism Team are only commissioned to be doing this for people with a learning disability.

So, do you think this is a good idea?  What would such a service look like to you?  What would you want from it?  Would this make the difference between getting to and through an appointment for you?

Parents
  • Hi Dawn,

    You're amazing and I hope you know how much we all appreciate your efforts. 

    Many times I've been called delusional because I presented with problems but doctors didn't believe they existed because there was no 'proof'. My tiredness and sore throat eventually revealed itself to be mouth cancer, my doctor didn't have much to say after that!

    I wish we were more heard and understood. A lot of it is medical professionals don't even try to understand us, they just assume, normally that we're not really ill when we are and that we're suffering mentally.

    I think everything you suggest is an amazing idea!

  • Oh Lord!  Have you made a recovery from the cancer?

    And yes, it's about more than mental health misdiagnoses.  Doctors haven't understood my physical symptoms either at times.  But I've never faced anything that serious.

    I hope your doctor learned a lesson to listen to you and other autistic people next time.

  • Yes fully recovered thanks, no problems from that department anymore. My doctor never did apologise but I now see a different GP but she isn't fully aware of autism.

    I'm sorry you're own doctor doesn't listen to you and your health complaints. I'm hoping that one day doctors will actually be given autism training, it's something that's definitely needed as it's being encountered in the medical sector more and more now.

  • I'm relieved to hear you've come through the cancer.

    GPs seem to get a once over of the diagnostic criteria in med school and that's it. That's the medical model of autism, of course, with language focused on all our so called "deficits".

    That probably explais why my GP who does want try, sticks his foot in it at the get go by apologising for the fact he can't "cure" my autism. (SIGH).

    GPs can't be expert in everything. Get that. But they do seriously need training from those with lived experience.

Reply
  • I'm relieved to hear you've come through the cancer.

    GPs seem to get a once over of the diagnostic criteria in med school and that's it. That's the medical model of autism, of course, with language focused on all our so called "deficits".

    That probably explais why my GP who does want try, sticks his foot in it at the get go by apologising for the fact he can't "cure" my autism. (SIGH).

    GPs can't be expert in everything. Get that. But they do seriously need training from those with lived experience.

Children
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