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Adventures in Psychiatric Reform: 5 Sept
(building a crisis response guide for manic episodes, mostly)
(Note to the astute reader: this was mistakenly not published when it was written! Chalk that up to user error; it seems I managed to not hit publish even in the easiest of user interfaces uhh sorry Substack)
I skipped the last update–not for a good reason, but because I found it hard to bring myself to say that I did ‘more of the same’ and discovered ‘things I probably can’t yet share publicly’ because that sounds like an uninteresting update.
So, what has happened since last time?
What did I try?
I finished the initial Lived Experience research project, and presented the findings from it to an encouraging online audience–you can watch the presentation here.
The majority of the interviewees had dealt with manic episodes, and their specific advice has been helpful for the development of the mania guide.
I finished a v1 draft of the guide for supporting someone through a manic episode, and presented it to a small handful of advisors, who simultaneously gave heartfelt encouragement and helped me rip it apart. This is my love language, and I’m very grateful to that crew.
I discovered I needed to make it simpler to navigate
I discovered I needed to account for extremely varied attitudes towards hospitalisation and risk
I discovered I needed to think carefully about how include the person experiencing mania
I’ve been working on ~v2 of the mania guide:
It has two components–advice for what you can do yourself to support a loved one through a manic episode, and a guide to getting professional help.
I’ve been getting feedback on the guide from some people with experience of crises, from some clinical advisors, and from a bunch of people from a bipolar family support group online.
It has gone through several iterations in this edition, and this edition has a lot more writing!
The guide to finding a professional involves a database of treatment providers, and as part of building this I have interviewed staff at a few residential treatment centres to find out what their process is to accept and treat patients, which has been great to learn independently
This prototype uses google docs, GuidedTrack, and Airtable, and incidentally the most coding I’ve done in my life, thanks to how easy GuidedTrack is to use, and some advice from my housemate.
V2 isn’t done yet, but it’s close! And much simpler than I expected. I plan to user test this version with the people who signed up to test the app from a previous newsletter, so if you did, thank you!
I finally submitted the 501(c)3 paperwork! That is a great relief, and it only took–waaay too long.
I pitched some funders, who I will name if it works out and I’m allowed to name them :P
What happened? What worked? What did I learn?
The v1 mania guide was sent through to people handling one crisis situation involving an acute manic episode, although I have not heard about how it went.
I met someone who was able to give me some inside perspective on why things stay the way they are, and pointed at the strength of the white-collar mental health worker class as an obstacle to getting things done more simply, persistently and cheaply. The observation was that it’s difficult to propose solutions that employ fewer highly paid doctors and therapists, to a system run by and beholden to those doctors and therapists. A counterintuitive point given so much reform effort cries out ‘we need more workers’!
I’ve been learning a lot through trying to articulate the parts of the crisis guide using simple language; I published Psychiatric Treatment in Plain English in part as a way of sharing the simpler understandings I’ve developed to others.
I’ve been getting some great fundraising advice from people at Recidiviz, another nonprofit org aimed at social system change that got started with an Emergent Ventures grant.
What am I doing next?
I’m focused on three things:
getting to a launchable version of the crisis guide
finding a clinical collaborator
finding longer-term funding to support said clinical collaborator and a slightly bigger team to run the guide and subsequent projects
In the background, I’m also doing a more informal continuation of the Lived Expertise project with clinicians who have a great track record.
How can you help?
Ask me for the guide if you need it: The mania guide is not yet ready to be published publicly, but it has already been sent to people who needed it in one real-life situation, because the alternatives are awfully sparse and unhelpful.
So, if you, or someone you know, finds themselves in a situation where a guide to helping someone through a manic episode would be helpful, DM me on twitter at @utotranslucence (faster), or email me at jess@psychcrisis.org (slower) and I’ll send it to you, because even as a prototype I think it’s the best we’ve got right now.
Help me cast a wide net for interested clinicians: Send psychcrisis.org to friends who work in mental health and might know someone in the field (ideally a licensed psychiatrist or therapist who has worked in crisis care) who could be interested in contributing to this project–I have some leads but I would love as many as I can get.
Help me find world-class crisis clinicians: If you know of any clinics or individual clinicians with an insanely impressive track record–100% of their first-episode mania/psychosis patients avoid having a second episode, or zero suicides for several years at a time, for example–please tell me about it! I’m investigating such high-performers to interview as the follow up to the Lived Expertise Project.
Thank you to everyone who has given feedback, sent encouragement (i.e. on Twitter when I was having a bad day), sent leads, and kept reading these updates. These days the guide project sort of has its own momentum, somewhat, which makes up for working alone! The improvements in the mania guide are really meaningful and exciting to me, and I’m looking forward to the point where it can be shared more widely.
Much love, thank you,
Jess