The Patient Leader

On the difference between having a voice and being a leader - and what David Gilbert's The Patient Revolution taught me about closing the gap.

I’ve been writing on Substack for a few months now. Not exactly setting the world on fire — I haven’t built the following, haven’t found the rhythm I thought I’d find by now. And somewhere in that quiet, I’ve had to sit with a question I didn’t expect to be asking myself this early: what am I actually trying to do here?

My original goal was simple enough on paper. Talk about my stroke. Make life after it relatable. Show people that recovery doesn’t end when the hospital discharges you — it just becomes invisible. I wanted to show that lived experience isn’t a sideline to real expertise, it is expertise, and that there’s a whole cohort of us who could be filling a gap in care that nobody with a clipboard seems able to fill.

Somewhere along the way, I got bored of myself.

Bored of my own story, specifically. Which felt like a strange and slightly shameful thing to admit. But here’s the thing — when I was working, I hated it when someone brought me a laundry list of problems with no solutions attached. I still say this to my kids. Don’t tell me what’s wrong unless you’re also willing to sit with me and figure out what’s next.

And that’s what I kept running into in the survivor spaces. Forums, groups, conferences.

People gather to be heard, and that matters — I’m not dismissing it, being heard after a stroke is its own small miracle. But being heard, in practice, usually means talking about what’s not working. What hurts. What the system got wrong. All of it true. All of it necessary, even.

Here’s the thing I couldn’t quite name for a long time, and I think it’s the actual thing. There’s a difference between having a voice and being a leader, and we use the two words like they’re interchangeable when they are not even close. David Gilbert says it better than I’ve managed to anywhere in this post: patient voice, he’s written, is “an often meaningless phrase upon which others hang a thousand meanings.” You can be filtered into it, quoted in it, ticked off a consultation list because of it, and still change absolutely nothing. Patient leadership, in his words, means becoming an equal partner in decision-making — and even then, not being the voice in the room, but being a channel.

Creating the space where patients and professionals actually work together, instead of one side politely listening and then going back to doing exactly what it was always going to do.

I found the same argument from a different angle, from a stroke writer I follow, Paul Quinn, over at The Esk. He put the sharper, more structural version of it: the system keeps stroke survivors as “passive recipients of care or as unpaid volunteers, rather than as a credentialed, compensated workforce.” That’s patient voice. What he argues for instead is survivors “leading change rather than merely participating in consultation” — actual voting seats on the boards that decide how stroke care gets funded and built. That’s patient leadership. Same badge. Entirely different job.

I’d been doing voice work for two years and calling it leadership. That’s the part that stung.

I kept thinking: shouldn’t we also be talking about what we’re going to do about it? How do we build something so the next person doesn’t hit the same wall we did? How does stroke recovery get anywhere near the funding, the attention, the machinery that cancer or mental health or rare disease get? Nobody in those rooms seemed to be asking that question out loud. Or if they were, I wasn’t finding them.

I did the numbers once, out of curiosity, more than I probably should have. Two of the Stroke Association’s eleven trustees have had a stroke themselves. Parkinson’s UK, by comparison, has ten of thirteen trustees living with Parkinson’s. The MS Society sits at eight of fourteen. We’re not just behind on funding and attention. We’re behind on believing our own people belong at the top of the table, deciding things, rather than being consulted about them from the room next door.

I went to the conferences. Patients as Partners. Life After Stroke. The PPI circuit, such as it is. Rooms full of people with real, hard-won expertise, mostly being asked how something felt rather than what should be built. And somewhere in the middle of all that, I felt my path start to wane. Not dramatically. Just — thin. Like I was walking and not actually getting anywhere. Now I have a better word for it. I wasn’t waning. I was doing voice work in a body that wanted to lead.

I know this feeling, the thin one. I’ve had it before, in other parts of my life. And I know what it usually means. It means it’s time to poke the bear.

That’s not a metaphor I chose lightly. It’s uncomfortable. It means making noise, pushing on something, risking looking like the person who won’t just be grateful and quiet, grateful for the seat at the table even when the seat has no vote attached to it. But the alternative — staying in the waning feeling — is worse. So I’ve decided: if I agitate a little more, push a little harder for something to actually get done, maybe I’ll stop feeling like I’m whining. Which, if I’m honest, is exactly how the last few months have felt. And maybe I’ll start being what I actually want to be. Not a voice. A leader.

I recently read David Gilbert’s book, The Patient Revolution. I wrote him a note afterward, telling him it gave me something I hadn’t had in a while — a sense that the path forward actually exists. If you’re doing any kind of health advocacy work, I’d recommend it without reservation. It’s full of real people, across stroke and mental health and every other kind of life-altering diagnosis, who didn’t just get invited to describe their experience. They built something out of it, and then ran it.

Michael Seres had Crohn’s, received one of the UK’s first small bowel transplants, and went on to found a health tech company inventing sensors for ostomy patients — because he’d lived the problem and knew exactly what needed fixing, and didn’t wait for a commissioner to ask his opinion on it. Alison Cameron turned her own experience of psychiatric trauma into a role advising the NHS on patient safety, chairing a national network, becoming the first patient leader accepted onto its leadership programme. Ceinwen Giles was diagnosed with stage IV lymphoma in her thirties and co-founded a cancer charity for people her age, then went on to chair a national NHS forum. Karen Owen built a peer-support programme for people living with long-term conditions, out of her own experience with a rare one. Patrick Ojeer became an advocate for the Sickle Cell Society after his son was born with the condition. And Gilbert himself became the NHS’s first ever Patient Director, after thirty-five years of doing this work from the outside, wanting in.

The exact title Gilbert held doesn’t exist any more, as it happens. Sussex MSK Partnership, where he did that work, wound down and became something new — and in its own words, the single Patient Director role evolved into something bigger. A Health Builders Programme. People with lived experience, paid partners, embedded in how decisions actually get made, not “wheeled out when consultation is required, as part of a tick box exercise,” to use their own words. And it isn’t theoretical. Thirty stroke survivors in Sussex are already doing it, through a project called Stroke Catalyst, shaping stroke services directly. The role changed shape. The idea didn’t die. It’s already running, in stroke, right now.

None of them waited to be invited. They just started, and then they stayed long enough to actually run something. It took years, in every case — “patient” turns out to mean a lot of things. But reading their stories did something I didn’t expect. It gave me the sense that this is actually climbable. Not that I’ll ever reach the top. I probably won’t. But I can get to the next floor. And the next floor is leadership, not another consultation.

Being a health advocate has felt, most days, like climbing up the escalator the wrong way. You put the effort in and you’re not sure you’re moving. Some days you’re sure you’re sliding backward. But these people got somewhere. Which means somewhere is real. It exists. It’s not a story I’m telling myself to feel better about the waning.

So — ten deep breaths later — I’m cracking on.

I don’t know yet exactly what that looks like. But I know what it doesn’t look like anymore. It doesn’t look like another post about how hard my Thursday was. And it doesn’t look like being grateful for a voice when what I actually want is a seat with a vote. I’ve got more to say than that, and I intend to say it.

Sources:

• Patient voice/patient leadership definitions from David Gilbert’s The Patient Revolution (Jessica Kingsley Publishers) and his HSJ “ImPatient” column.

• Paul Quinn’s argument on stroke survivors and consultation vs. governance is from The Esk (theesk.substack.com).

• Detail on the Health Builders Programme and Stroke Catalyst is from Here — The Health Builder difference and Here — Health Builders case study.

• Board composition figures (Stroke Association, Parkinson’s UK, MS Society, Versus Arthritis, Diabetes UK, British Heart Foundation, Macmillan Cancer Support, Alzheimer’s Society) are my own August 2026 spot-check of each charity’s published trustee bios — not a formal study, a snapshot of what’s publicly disclosed. Sources: Stroke Association, Diabetes UK, Alzheimer’s Society, Macmillan, MS Society, British Heart Foundation, Parkinson’s UK, Versus Arthritis.