Proposed UKSF Session Structure — 50 minutes of content
Framing principle: The audience are professionals. The goal is to change what they do on Monday morning, not to move them emotionally. Lived experience lands the problem; evidence gives them permission to act; the close gives them the tools.
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1. What is CPSP and why are we here? — 5 min
Speaker: 30s Intro Simon 5m content Cat (clinical definition, prevalence, why this session exists)
The range 3–30% is itself the story: poor diagnosis, not low incidence. Stroke Association estimates 20% — that’s one in five of every patient in the room’s caseload. This section sets the stakes without requiring any StrokeThriver to do the heavy lifting upfront.
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2. What it is actually like — 15 min
Speakers: 3 community members Video, 5 min each, structured not open-ended or in discussion between selves with ‘Script’ of key points to make
Suggested speakers: Nigel (long journey, DBS, TMS experience), Helen (recent diagnosis, GP dismissal, isolation), one further voice (Ruth or Philip — different geography/pathway).
Each person covers: how they first noticed it, what diagnosis looked like, what the medication journey cost them. Factual and personal. Not blaming specific clinicians. Christine’s framing applies: facts from experience, not institutional complaints.
This is the half of the session that belongs to lived experience. It needs to be heard before the evidence, not after.
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3. What the evidence says — 12 min
Speaker: Arnas
Not a methodology lecture. Structured as: what we know works (TMS: 50% response, outperforming other options; medication classes and their limits), what we know doesn’t work well (cocktail prescribing), what hasn’t been tested at all (psychological approaches — no controlled trials), and where research is going.
The TMS finding is the headline: 50% response rate in a condition where most treatments fail most people. That’s the number the audience needs to carry out of the room.
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4. The psychological and holistic gap — 8 min
Speaker: Emma Hale (if confirmed), or Cat if not
Arnas’s review found no controlled trials for psychological treatment despite CPSP being associated with depression and suicidality. Pain management programmes are built for physical injury, not neurological pain — Nigel’s point, and it’s an actionable critique. This section acknowledges the non-pharmacological landscape without overstating the evidence, and sets up a clear gap for future research and service design.
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5. What you should do differently from Monday — 7 min
Speaker: Cat or / and? Simon
Audience-segmented. Tight. Probably slide-based:
- GPs: suspect it, name it, know the pathway to specialist care, know the Liverpool and Oxford centres exist (Cat)
- Stroke professionals: CPSP can develop after discharge; forewarning matters; a community exists to receive patients after your service ends (Cat)
- Policymakers: TMS evidence is there, access isn’t; **existing depression TMS centres could be extended ** (BOth)
- Everyone: there is a peer community with lived knowledge that exceeds what any professional pathway currently offers (Simon)
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6. Signposting and close — 5 min
Speaker: Simon
The community exists. One slide: forum URL, Facebook group, Thursday Zoom sessions, how to refer a patient. QR codes if the AV allows it.
This is the single highest-value thing the audience takes home. A GP who signposts one patient a month compounds enormously over time.
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Optional: 3 minutes Q&A if time permits, chaired tightly
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What this buys
It honours Christine’s constraint — it’s teaching, not venting — while giving lived experience the structural weight it needs (sections 2 and 6 are survivor-led). Cat gets her definitional and evidence framing. Arnas gets a proper evidence slot. The close is actionable for every audience segment. And the community gets the signposting mechanism it actually needs from the room.
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Ready to revise when your additional inputs arrive.