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3rd June meeting

Simon

Possible Session Questions (tap click to expand)

How would you describe your CPSP?
How informed have support service staff such as clinicians and others been for you
What are your experiences of discussing CPSP with NHS staff or non NHS staff such as Sirona physios?
How has CPSP affected #LifeWithStroke?
What do you want people to know about living with CPSP?
What might help people with CPSP?

Struggling to find any information on…

…CPSP and trying to make sense of why there is no info easily available? See CPSP on the #StrokeImprovementGroup #SIG forum
Feeling completely alone?
Being accused of being oversensitive / misunderstood?
What hope do you have of a big reduction in your pain levels in the next 5 years ?
What support do you currently receive ?
On your worst day, out of 10, what score would you give your pain ?

Proposed UK Stroke Forum conference session: "Living in Pain: Poststroke Pain, focussing on Central Post Stroke Pain"

Purposed Draft to Refine

To highlight and explain the experience and needs of stroke survivors in pain and especially those with central post-stroke pain (CPSP),
To discuss interventions for CPSP and where we need more research.
To provide a sense of hope and connection to stroke survivors with CPSP.
To help increase recognition of CPSP and access to information, interventions and support for CPSP.
To help a mixed audience (likely to include stroke survivors, carers, people involved in stroke organisations and charities, health and social care professionals from different disciplines and researchers) learn:
- what it is like to live with post-stroke pain, especially CPSP;
- what research on the experience and treatment of post-stroke pain shows so far (and some of the gaps in research); and
- what they can do to help / find help (if they have CPSP).
A proposal had to go to the UK Stroke Forum at short notice. We proposed the following talks; these can be updated and the order changed round:
- Simon Harris (Member of SIG) Session Chair
- Nigel Price, Ruth Oxley, Phillip Retti, … (Experts by Lived Experience In CPSP and Members of SIG with CPSP)
- Johanna Bruger and Cat Ford (clinical psychologist / clinical neuropsychologist) on research that interviewed stroke survivors about their experiences of persistent pain including CPSP and found themes about the loneliness of the experience and feeling let down by healthcare.
- Arnas Tamasauskas a PhD student at the University of Liverpool on his published review of treatments for CPSP;
- People with CPSP –many stroke professionals and carers may not have come across CPSP before, had training on it, or understand what it is like to live with CPSP; videoed first-hand accounts will allow people to explain what it’s like to live with CPSP to raise awareness and understanding.
- Emma Hale (clinical neuropsychologist) on how it’s possible to make sense of why pain happens and support people to manage it and the need for more research on this.

Cat Ford

Hi, I am the British Psychological Society representative on the UK Stroke Forum committee. I work 3 days a week as a consultant clinical neuropsychologist in inpatient neuro-rehabilitation, 2 days a week as a clinical associate professor at the University of East Anglia, where I am part of the team training clinical psychologists and supervising clinical psychology research and outside work I’m part of a family affected by stroke. The research I supervise focusses on unmet neuropsychological needs after stroke such as post-stroke apathy, post-stroke pain and detecting low mood and suicidality in people with communication disorder after stroke. I worked with stroke survivors in the community for many years; meeting stroke survivors referred for help with CPSP led me to propose and supervise Johanna Bruger’s research study on experiences of post-stroke pain. - Dr Catherine Ford, PhD, ClinPsyD, QiCN, FHEA, AFBPsS.
Simon Harris Campaigning for Digitally Enabled Peer Support Networks integrated with formal healthcare pathways - a paradigm shift for the post-stroke sector. Convener of ISRRA working group on the above, Co-chair NHS Lothian’s “Hybrid Hubs” implementing an example of the above. Member #StrokeImprovementGroup #SIG

We have a session scheduled on the 3rd of June at 11:30 via https://bit.ly/zoomsimon) as part of the preparation for moving central post stroke pain on as an agenda item and possibly a UKSF session.

CPSP Meeting

Central Post-Stroke Pain isn’t rare. It’s just rarely heard of.

Some of us have been discussing how to get CPSP more visibly ‘on the agenda.’

We’re meeting on the 3rd of June at (I’ll be there at 11:00 a.m.) official start is 11:30 UK time (BST) in Simon’s zoom meeting-room https://bit.ly/zoomsimon takes you to Simon’s zoom room. Just tap/ Click here–> https://bit.ly/zoomsimon

We’ll bring together lived experience experts who bear it 24×7, a researcher/clinician/professor or two, and people building the routes to reach for better care. We are all going as subject matter experts in different aspects (from enduring onward towards curing - but no-one can yet claim to be curing).

What we’ll do in the meeting

Recording testimony for UKSF. What you say may be used as video input into a UK Stroke Forum CPSP session. This is our platform — Prof. Cat Ford is on the UKSF committee and helping open the door wider. We want what’s actually true about living with CPSP to land in front of the people who shape research and clinical pathways.
Co-designing the session itself. The formal machinery of session design doesn’t correctly recognise us. We want to reshape that. It’s a bigger endeavour than one conference. This is a beginning
Mapping who else needs to be in this conversation
- across the UK and beyond — so the things that may help (DBS, anterior cingulotomy, the unwritten knowledge held in peer communities, off label use of drugs such as vortioxetine,…).
- Holding organisations that claim the centre ground in research — but have not listened to us accountable for acting when we tell them of the desperation of our needs so that the research that’s missing gets prioritised and results are delivered into front line services.
Why it matters that you’re there — Every person in this room knows something the literature doesn’t. Drug responses no trial has captured. Side effects no clinic visit lasted long enough to surface. What it costs to discover CPSP when you are never warned and or your concerns were dismissed as overly dramatic. That knowledge has nowhere formal to land unless we put it there.
What we’re aiming to come out with
1. Material that can carry into UKSF — in our words, on our terms.
2. A session design owned by the people it’s about.
3. The beginnings of a wider mobilisation: who else, where else, what next.
If you’ve not previously responded you can come anyway. The point of this meeting is to widen the circle, not narrow it. If CPSP touches your life, your work, or your research, you belong in the conversation.

Simon
#StrokeImprovementGroup #SIG
The Stroke Improvement Group are a loose affiliation of people who believe that stroke care will be significantly improved when institutions learn to Listen & HEAR us and embrace digital community

Ruthy

I’m really looking forward to the meeting.

Phil

Excellent work Simon. Truly..

Your drive and enthusiasm shines through. I’m flying back to.uk today.

Nige

I thought we would be recording video separately? To tell our own stories ? If everyone was to do it, might be a long meeting ?

Ruthy

Nige not sure. But my understanding was that the meeting on Wednesday was to discuss what we/Simon/Cat thought was the best option to convey what we wanted to say as a group 🤔 (e.g bullet points for people to follow for their 3 minute video or something like that).

Nige

Ruthy @Simon can you clarify for us ?

Ruthy

Nige have I misunderstood what you were saying? Sorry if I did.
I thought you were thinking about the videos talks for the UKSF and had thought we were doing that on Wednesday. Does that give more context to my previous reply to you?

Nige

Ruthy tbh, I’m just not totally sure what’s happening. If it was to set the scene for what to do for uksf, it presumably doesn’t need all the people who might be attending this event ?

I think it’s the recording of Wed which has possibly led to the confusion on my part.

Having had a reply from Arnas, got to say he looks to be a very good person to know CPSP wise. His knowledge is seriously impressive imo. I have not come across the area of the brain which he is now investigating (BA3a and BA3c) as perhaps being the part that is impacted.
He is also looking to see if they can tell in advance that someone will go on to develop CPSP.

Ruthy

Nige I see what you mean now. I hadn’t considered it in that way.

Simon

We will record the meeting on Wednesday cuz that way if there’s anything of value in it we can edit and chop up things so they’re not lost.

There’s nothing fixed at this stage about the approach. I fully anticipate on Wednesday will say let’s have a few smaller sessions to record for UKSF as well or instead of Wednesday’s content but I don’t know yet because I’m not prejudging anything

There’s a lot of us with insights. There aren’t forums to exchange them. My approach is to be inclusive. I’m bringing people together but I’m not trying to put words in anybody’s mouth or silence anybody.

We have a slight problem with UKSF assumed process. They assume that we’re running a research project or an operational system and have lots of resources behind us and a firm idea of the message to be delivered. They are not set up for The situation where a bunch of people with a serious need trying to establish a serious proposition about how that need can be better met.

Nor of how this particular challenge is illustrative of the whole of the stroke care ecosystem That people like the stroke association and different strokes strangle attempts by survivors to improve their own lot.

The meeting will be as much one where you can express how you want things taken forwards as it will be anything else.

You may have detected in the stuff I circulated that I will be there for 11 with an official start time of 11:30 and I anticipate in that half hour beforehand there can be some getting to know and confirming or challenging of assumptions

Ciao
Simon

Ruthy

That’s brilliant Simon . Thank you for the clarification 😊👍

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