Sarah Marie (mangofandango) wrote in vaginapagina,
Sarah Marie

MMMMonday! Medical Advocacy

It's MMMMonday! Each Monday, we bring you special, maintainer-curated content intended to enrich your VP experience. Please note that you can find past MMMMonday posts using the "mmmmonday" tag.

Also, a quick reminder about the other places you can find VP: vp_bulletins for local announcements; contact_vp for questions and feedback on the way VP is run; the Vulvapedia for basic questions; and don't forget about our sibling community over on Dreamwidth!

Today we have a piece written by our very own <lj user= "kaberett">, about medical advocacy and what it can look like. Check it out, and chat with us in the comments!

We often say that it can be very helpful to have a trusted friend or family member come with you to medical appointments, especially if you're stressed or anxious about them. Following a couple of offline conversations, I thought it might be helpful for me to write down what I mean when I offer to accompany people to an appointment, or to act as a medical advocate for them.

What I am offering when I ask this is anything you like from the menu below, plus probably some other stuff I haven't thought of. I am not trained; I've just spent a lot of time around the NHS and private healthcare, one way or another. As far as I'm concerned, these are some of the things that medical advocacy can look like - and wanting one doesn't mean you want any of the others.

  • Sharing my own experience - if it's bits of the healthcare system I've worked with before, or ones I've Heard Lots About (e.g. I have never personally dealt with the local Crisis Team for myself, but I have sat in on them being shit to other people, and I have heard an awful lot about their general... competence).

  • Researching process and possible pathways.

  • Making appointments.

  • Brainstorming before the appointment - providing a sounding board, or providing suggestions, or both, about things you might want to say or ask, or topics that might come up.

  • Keeping an up-to-date list of topics you think you want to raise.

  • Accompanying you on the journey to/from the appointment.

  • Speaking to the receptionist.

  • Accompanying you into the waiting room.

  • Accompanying you into the appointment itself.

    • Silent moral support.

    • Physical contact, e.g. providing a hand to hold.

    • Making notes on or recordings of the appointment, and what is said and agreed.

    • Prompting you about topics you'd like to raise, or relevant symptoms or experiences.

    • Monitoring you for distress, and taking appropriate action.

    • Calling the healthcare professional on any questionable statements, or asking them to cite examples or evidence.

    • Prompting about any possible medicine interactions.

    • Reinforcing your statements if necessary.

    • Speaking on your behalf, including talking about relevant symptoms or my own observations of your function.

    • Summarising my understanding of the agreed plan of action at the end of the appointment.

  • Confirming the date of the next appointment.

  • Accompanying you to the pharmacy to collect any prescriptions.

  • Collecting prescriptions on your behalf.

  • Telling you my interpretation and memories of the events of the appointment.

  • Taking you for warm beverage and decompression time after the fact.

Obviously negotiation is needed - and more negotiation is needed the more involved you want me to be. For example, if you want me to speak on your behalf that is fine, but I will need an extremely thorough briefing on what to say, and will want to negotiate ways to check in with you in advance. If you want me to monitor you for signs of distress, I'll need to know your "tells" (for me, one is that I start rubbing my throat when I'm getting stressed).

What are your experiences - on either side of this negotiation? Can you think of anything I'm missing?
Tags: mmmmonday
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