Medical advocacy

[kaberett]

If I offer to accompany you to an appointment, or to act as a medical advocate for you, what I am offering 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.
  
• Helping you find an appropriate (and if necessary more competent) medic, via my various research algorithms or via my extended network.
  
• 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.
    
  • 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.
  
• Taking you for warm beverage and decompression time after the fact.

This list probably isn't exhaustive, but everything on it is included in any offer I make to act as a medical advocate for you. 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).

I'd be very, very interested to hear from people about what steps I'm missing, because inevitably there'll be some ;) And also how this matches up with your concept of medical advocacy, if you had one, and so on and so forth!

Comments

[shadowspar]

This is an amazing and thorough list! Seriously, a good resource for anyone helping another person out with medical matters.

Other items that may or may not really be permutations of the above, and that you may or may not wish to include:

• Recounting my recollection of the salient points of the appointment and my understanding of the agreed plan of action some time afterwards when things have settled, possibly during the aforementioned decompression time.
• With your explicit consent and appropriate prior discussion, recounting my observations of your symptoms, difficulties, or concerns.

[kaberett]

Yes good! Thank you. Those are both in the nebulous thoughtspace but didn't manage to get articulated. :-)

[lilysea]

Great list, thanks! ^_^

[kaberett]

Welcome!

[shehasathree]

This is awesome!

[cesy]

Great summary! I will save this.

[alexwlchan]

As a meta-point, having these as a concrete list that I can pick and choose from is super helpful – as opposed to just saying “tell me how you want me to help you” and giving somebody a free choice, because there’s stuff here it wouldn’t occur to me that you could ask somebody to do?

I will no doubt have more suggestions if/when I actually start asking for medical advocacy.

<3

[kaberett]

YUP. That's some of why I have actually written this up -- I have A Lot of practice at needing & providing medical advocacy, and I got bored of giving people the full list every time one-on-one so I just... wrote this up. :-p (I'm always open to suggestions for additions!)