The Brief I'd Write

Maya Kuzalti

Sep 23

6 min read

Five things I'd ask anyone building the next stroke service to design in from day one.

A woman tiredly staring at a computer, not understanding anything from her search

Dear you,

Three years in, I typed “stroke recovery guide” into a search bar and waited.

What came back was a wall of charity homepages. Bright banners. A donate button pulsing gently in the corner, as if it knew where my eyes would land first. Six menu items across the top, four more hidden under “Get Support,” a carousel of stories auto-advancing every four seconds whether I’d finished reading the first one or not.

I closed the laptop. Not because I wasn’t capable. Because nothing about that page had been built for a brain like mine.

That’s not a small thing, and I don’t think it’s an accident either. It’s the same shape as everything else I’m about to tell you.

Last time, I shared the list — what worked, what didn’t. I’m not going to walk through it again. I want to do the thing that list was always pointing towards.

Because underneath it there’s a pattern. Everything that worked, I found myself. Everything that didn’t fell down in the gap between one part of the system and the next. Which means the fixes aren’t mysterious. They’re a brief. And after five letters, I think I’ve earned the right to write it.

So here’s the brief I’d write.

Start with the person’s life, not the condition. Before anyone plans a single session, ask what this person’s life asks of them — their job, their kids, the stairs in their house. My community OT team never asked what I did for work. The back-to-work OT I later paid for got closer, and that’s when I realised how much one good question changes the whole plan.

One record, one plan. My GP and my neurologist were both managing my migraines, on two systems that didn’t talk to each other, so I became the go-between. Give every survivor one shared plan that follows them, and nobody has to carry their own notes across town on an injured brain.

Check for what doesn’t show on a scan — on a schedule. Speech, fatigue, mood, concentration. Mine weren’t picked up for over a year, not because anyone was careless but because nothing in the pathway prompted a look. Build the prompt in. Six weeks, six months, a year. Ask whether or not the patient raises it.

Show people their limits before they hit them. Fatigue is the one I’m still learning, mostly by crossing the line into a migraine. The most useful thing anyone could have given me in year one was a way to see that line coming.

Design for a tired brain. The first recovery guide I found was a homepage built for donors. The fix is simple and almost free: one clear page, no carousel, written for someone with fifteen minutes of focus left on a bad day.

The brief I'd write and with someone who's lived it in the room, from the start.

And the thing that ties all five together: write the brief with someone who’s lived it. Not after. Not as a quote for the launch. In the room, at the start.

None of this is exotic. Every piece of it already exists somewhere — in the therapists I found, in the peer group that answers at eleven at night, in services that are already doing it elsewhere. What’s missing isn’t the idea. It’s someone deciding to build it.

I want to be precise about what all of this actually means, because I don’t think it means nobody cared. I think it means nobody who’d lived it was in the room when any of it was designed.

The numbers back this up more than I wish they did. Community stroke teams in the UK are running 26% short of the physiotherapists national guidance says they need — so patients get therapy on just 15% of the days they’re supposed to, against 70% in hospital. The Stroke Association’s own chief executive has said sixty-five per cent of stroke survivors get no physiotherapy, no speech and language therapy, no mental health support at all. Only a third of us get the six-month review we’re meant to have, and that’s the lowest it’s been in six years. None of that is a mystery. It’s a staffing sheet nobody filled in.

And it doesn’t have to be this way — I know because somewhere else, it isn’t. Ontario runs dedicated community stroke rehabilitation teams: occupational therapy, physiotherapy, speech and language, social work, a stroke coordinator, all built around the same clinical guidance the UK also has on its shelf. First contact within 48 to 72 hours of leaving hospital. Two to three visits a week, for eight to twelve weeks, per discipline. Client satisfaction consistently high, readmissions down, people functioning better, sooner. Same evidence base as here. The difference isn’t the science. It’s that somebody actually built and paid for the delivery of it.

I keep coming back to what separates the things that worked from the things that didn’t, and it’s not complicated. PatientsLikeMe was built by people who’d lived the thing it served — a founder documenting his brother’s ALS — and it became something that actually helped people make decisions about their own care. Babylon Health was built the other way round: a tech thesis and political enthusiasm looking for a disease to attach to, and its own “AI” turned out to be, in one former employee’s words, “a standard medical if/then decision tree in a spreadsheet.” It lost 99% of its value in eighteen months. Rock Health, on the US side, and the Health Foundation, on the NHS side, have independently arrived at the identical instruction for anyone building health tools now: bring the people who’ve lived it in at conception, not after the prototype’s already built. A team building a long-COVID app called Visible has more than half its own staff living with the condition it serves, including a co-founder — which is a very different thing from a focus group consulted once, politely, before launch.

There was even a study, on stroke specifically, that found how engaged a patient was with a therapy tool predicted how much their impairment actually improved. Not a nice-to-have. A mechanism.

So here’s what I’m asking, at the end of five letters that were each addressed to somebody specific — a board, a CEO, the people I could put a name to. This one isn’t addressed to a person. It’s addressed to the shape all of you make together, the system that decided what the community OT team’s caseload would be, what the charity’s homepage would look like, which two departments would keep separate files on the same migraines.

Ask people who’ve actually had the stroke before you build the next thing. Not to be quoted at your conference. To be in the room while the caseload gets decided, while the website gets wireframed, while the two systems that don’t talk to each other get specified as one system instead of two.

I found what worked because I went looking for it myself, alone, mostly by accident, over years I didn’t get back. That shouldn’t be the design. That should be the thing that never has to happen to the next person again.

Maya

P.S. This is the last letter in the series, but it isn’t the last thing I’m writing about this. For the past few months I’ve been working on The Discharge Gap — an independent, patient-authored report on what happens to stroke survivors after the support stops, built from conversations with survivors, clinicians, researchers and the charities in between. The UK has built one of the best acute stroke pathways in the world. Recovery support stops years before recovery does. The report is about that gap, and what it would take to close it. It’s out in the coming weeks — subscribe if you’d like it the day it lands.