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Wow, my tweet about being able to book appointments with my GP yesterday really struck a chord!
I think I should share the story of why this is so fraught for me.
I think I should share the story of why this is so fraught for me.
When I was 22, I woke up one morning with what felt like a hangover and a lump on my breast. I booked an emergency appointment with my GP, who said it was weird, because it looked like an abscess but she'd never seen that outside of nursing women.
She gave me antibiotics and told me to come back in immediately if anything changed.
I remember she emphasised that a couple of times - don't be put off. Tell the receptionist I'll make time for you if you call.
I remember she emphasised that a couple of times - don't be put off. Tell the receptionist I'll make time for you if you call.
Over the next few days, my breast doubled in size, and I felt sicker and sicker. I rang for an appointment but couldn't get one. There was no note on my file to say my case was urgent. I was brushed off. Somehow I couldn't get across how ill I felt.
By the end of that week I was in a seriously bad way. I had a high fever, was delirious and my joints were so stiff and painful that I couldn't walk. I felt like I was dying. My breast was four times its normal size and red hot.
I rang the surgery and begged to see someone.
I rang the surgery and begged to see someone.
I told all this to the receptionist. She said it sounded like I had a cold.
I sobbed. I literally begged.
She said maybe it was the flu.
I sobbed. I literally begged.
She said maybe it was the flu.
I got lucky, because that afternoon the abscess burst and I phoned a friend. But before that moment I was going in an out of consciousness on the sofa.
When I got to the hospital, they said I had sepsis and would have died without treatment. I was kept in on IV antibiotics.
When I got to the hospital, they said I had sepsis and would have died without treatment. I was kept in on IV antibiotics.
I didn't know I was autistic then, but now I realise that over and over again, when I try to communicate my distress, it doesn't come across as distressed enough. I don't know why.
I should have taken myself to A&E, but my surgery had made it clear I was making a fuss.
I should have taken myself to A&E, but my surgery had made it clear I was making a fuss.
I felt ashamed to be wasting their time. I trusted their authority. I had no idea what was happening.
A couple of years ago, a friend's sister died in similar circumstances, and I realised how much danger I'd been in.
A couple of years ago, a friend's sister died in similar circumstances, and I realised how much danger I'd been in.
I know this is an incredibly icky example (believe me, I'm sparing you the details), but it shows how the barriers to access that autistics face can be fatal.
But I also want to say to everyone who has told me that they struggle to get appointments too: don't give up. Don't just leave it. Don't be fobbed off. If you can't talk, email and INSIST they help you to access care. Or walk into the minor injuries unit and ask for help.
I'm telling you this story because I need to make sure I do this too.
We can't let their indifference - and their unwillingness to accommodate different needs - kill us. We must help each other to get the treatment we need. We must stop feeling ashamed.
We can't let their indifference - and their unwillingness to accommodate different needs - kill us. We must help each other to get the treatment we need. We must stop feeling ashamed.
Anyway, I'm still here (although my right boob won't win any beauty contests). But I remain deeply suspicious of medical receptionists making clinical decisions about access to care.
