Week 2
Breakfast Roll — 7/10 (a tad too burger’y)
- I’m still getting used to the idea of weeknotes. Since last week I’ve wondered whether these are weeknotes for work, or more of a personal thing? Maybe it’s somewhere in between. I’m also thinking ‘teamnotes’ might work well for us at Compassion in Dying, apparently BERG did this well.
- Alice Bartlett calls her posts ‘weaknotes’ which I like. She says it’s because they’re quite bad — I think they’re excellent.
- In the spirit of weaknotes, I wrote this post during and after eating a breakfast roll (see pic above). I might make this a weekly thing to incentivise myself to write by having a nice breakfast as a reward…
Twitter is dying
- Everyone seems to be very angry about Elon Musk taking over Twitter and ruining it. I’m not quite sure what to think. I kind of love Twitter. I think I and Compassion in Dying are quite fortunate in that the end of life / medical Twitter community is (in my opinion) very nice, welcoming and friendly. All the things Twitter should be. So I don’t like the idea of leaving it, and struggle to think how we could replicate it as an organisational tool for talking about the work we’re doing and to build relationships. I hope Twitter survives.
We launched a thing (on Twitter)
- This week we launched a research report (on Twitter). A perfect example of how important the platform is to our work. The sorts of people who need to see this are mostly (not all) on Twitter. We’re pretty happy with how it’s been received. It’s important research (from our amazing policy + research team) about Voluntarily Stopping Eating and Drinking (VSED). We get calls from people who are nearing the end of life and want information about stopping eating and drinking as a way to hasten their death. Difficult enough right? Even harder when there is no credible information or national guidance for people or healthcare professionals. You can read our Twitter thread if you want to know more.
Dying in the open?
- I had a bit of a wacky idea this week for a blog post. It came to me randomly whilst walking into the office one morning. I think prompted by my draft blogging guide I wrote for internal staff. The guide mostly about the why and how we should ‘work in the open’. All this got me thinking about a phenomenon I’ve noticed working in the end of life sector which is that:
More and more people seem to be starting blogs or posting on social media specifically to write about their experience of living with (and dying from) serious illness
- I’ve always been amazed by this. The impact can be enormous. The most notable and recent example has to be Deborah James who raised an astonishing £7.5m for Cancer Research UK. Other examples that come to mind are Jen and the Cancer Chronicles, Patrick Wyman and the Bowel Cancer Man and Molly Bartlett who’s written for our very own blog.
- Each of these people will have their own reasons for doing this. Without wanting to sound glib, whether intended or not I think this is in a way a version of ‘working in the open’. Except quite often it’s ‘dying in the open’. I’m not sure you can measure the impact of people sharing their experiences openly at the end of life? I want to talk about it though, partly to thank these people for what they’re doing — and also to figure out exactly how it helps others I think?
Website update
- We’re building a new website at Compassion in Dying. This week we had a good show + tell with staff where I and Simon showed a first version of some wireframes. I think it went well. I always feel good after sharing updates — need to do it more often.