European life after stroke forum 2025

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The European Life After Stroke Forum (conference) is accepting abstracts from people with lived experience :slight_smile:

They’re pretty short 250 words!

It’s in Prague in March next year

Here’s my draft submission I would be grateful for any reflections

Abstract (max 250 words)

title

Digitally enabled peer support networks - Biggest game changer EVER (for ALL stakeholders)
12w

Describe your experience with stroke and how it relates to the chosen theme. Focus on specific events or insights that highlight your journey and how it impacted you*

i had a ischemic stroke.
Overnight it invalidated all our (self & family) heuristics for sense making to navigate the world. It is scary.
23
The equivalent to ”It takes a village to raise a child" is ‘it takes a community to support recovery of each #StrokeThriver’
22
‘Villages’ are popping up like mushrooms all over social media. I give & recieve value as a member of multiple.
Realising potential needs amendments to: Training curicula & practices, Governance frameworks, policies, strategies & safeguards, Community platform software, Rehab metric collection & aggregation for AI led research, ATTITUDES, EXPECTATIONS & IMAGINATION
46

23 22 46 = 91

Give a short summary of the presentation including key points, personal insights and how it relates to life after stroke. Focus on education, practical advice, strategies and recommendations based on lived experience*

Hello & audience engagement
3
Description of the Peer Support reality I’ve had for 4yrs - good & BAD, In multiple communities
15
Stakeholder and (some) Imaginable potential for each
7
Benefits: Reduced costs, Increased support quality & availabilty + therapist job satisfaction + superior & quicker outcomes, Empathic emotional support with visceral understanding and the wisdom of crowds 24x7, New routes for research/ AI(Deep Learning), ‘Voice of the Customer’ becomes LOUD
36
Bumps on the road: Curation of social community is a new (poorly practiced :frowning: ) skill, Changes the demographic of service users BUT not (short-term) funding of providers, Existing charities & institutions a BARRIER to realisation, Loud voice demands influence
39
Stroke Improvement Group: Fellow #StrokeThrivers wishing to pay forward the support received (are invited to) sign there social media posts “member SIG”, the SIG Charter
25
Thnx, contact
2
3 15 7 36 39 25 2 = 127

12 91 127 = 230 (20 spare)

And a draft charter

TL/DR; The Stroke Improvement Group are a loose affiliation of people who believe that stroke care will be significantly improved when institutions listen to us and embrace digital community

The STROKE ACTION/IMPROVEMENT GROUP

Stroke Improvement Group is a collective of passionate individuals with lived experience of The impact of stroke as survivors, care givers, family & friends (#StrokeThrivers), care professionals and specialists

PURPOSE:
A think-tank engaging with organisations within The stroke arena for The betterment of stroke reduction and improvement of post stroke lives and professional’s job satisfaction

OBJECTIVES:
To:

  1. BE A SOURCE OF SUPPORT TO SURVIVORS and of INFORMATION/ ADVICE for ALL STAKEHOLDERS
  2. USE INNOVATION OF THOUGHT AND PRACTICE TO remove misconceptions and limits in STROKE practices
  3. MAINTAIN CONTINUOUS PRODUCTIVE DIALOGUE WITH EXISTing ORGANISATIONS TO share all STAKEHOLDER’S OPINIONs TO SUPPORT balanced DECISIONS

METHODOLOGIES:
Innovation and The future of technology is a fundamental aspect of our ethos. We promote digital technologies for community, service delivery of Therapies & use of data in research

Via continuous dialogue with existing worldwide organisations we will operate with a willingness to share information and work collaboratively to develop effective strategies that positively impact The occurrence of stroke

To use The breadth of community knowledge to enhance survivor centric support services for The benefit of all members of The wider stroke network.

VALUES:
Listen, Seek To Understand, Make Your Points Respectfully, Recognise everybody’s emotions are valid (and may not fit your definition of rational)

CALL TO ACTION
to join and have an equal access to raising agenda items and action plans simply sign The last line of your community and social media contributions Stroke Improvement Group or SIG

Contributions welcome

Caio
Simon

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I was going to post a mirrored image of your post, but thought the joke might fall wide.

Incoming honest opinion … I have a bit of experience in this area. It’s a draft but their guidelines are standard sentence structure for title: Digitally enabled peer support networks - biggest game changer ever (for all stakeholders). To me, this is a statement as opposed to a title, perhaps, something like: Enabled digital peer stroke support networks: empathy and empowerment. Or something like that.

Without going through each section bit by bit, I will just summarise and you can do with my summary what you will.

  1. Your experience with stroke, stick to your experience, not “our” or the “village”, this section is from your perspective looking outwards, particularly, pertaining to the theme of your abstract.

  2. "Hello and Audience engagement, null, don’t need it. Save three words. Is stakeholder the right word here? I think you are trying to say too much all at once, an abstract is an idea presented in simple terms, your description of the Stroke Improvement Group is actually closer to the mark of an abstract.

PM me for any clarifications. Symptoms aren’t great tonight but I did have a wee squizz. Can elucidate more if you need to on this thread also.

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Thnx :slight_smile:

Sorry to hear your symptoms are intrusive :frowning:
I wish you well with them but I guess after time and tide you know how to manage or medicate them

Your comments are very Valuable :purple_heart:
There’s also drop in zoom with International Development Lead - Sarah Belson & Jenny (Involmemt Lead) has offered to critique

The big challenge is that I am Not able to 2nd guess what will peak the selection panel’s interest - hence throwing the kitchen sink at the limited number of words :frowning: a failing I know.

I See where your reflections come from (was that what you meant by the joke

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I take your point on the title; it was intended as a statement of conclusion - can it be both simultaneously?
Your amendment has value - seeing through another’s eyes is always an opportunity to be grasped imho

I wonder what chat GPT would do with my words - I’ll try in a bit :slight_smile:

The “my experience” section is restricted to My direct experience so I’ve not made my message clear. Our means Simon, Lea, Jess & Toby, Popping up = “I found lots & joined several” and is meant to say “this is happening (So the conference should consider the plurality of ways that advantage can be created by embracing/ learning/ guiding/ developing/ being guided by/)”

“Hello and engage” (while three words and I haven’t run out yet!) was intended to convey more interaction then 10 minutes of talking AT people

Putting this together reinfoced to me that SIG needs a hub to exchange thoughts & info - I do not feel safe exploring thoughts here even though my motives are altruistic and align to published goals

While I & others tweaked the words another member wrote the SIG charter - maybe that’s why it’s clearer ! :slight_smile:

I would very much value you ongoing thoughts. I believe broadly welcomed change (progress ?) comes through sharing thoughts and ideas.

Divergence followed by convergence followed by synthesis.
It’s one of the frustrations that there arent ideas coming forward from the people who c/sh-ould enact them. Coordination of the efforts of others :frowning: has to be done like this and always under the threat of unilateral censorship & censureship.
The lack of effective habeas corpus is one of the learnings from the creation of community in the digital space.
Several thousand years has thrown up norms in governance such as separation of court and state yet digitally those fundamentals of effective democratic society have yet to be recognised as key principles to be embedded into governance structures.

Conference would be a nice opportunity to spread the message at one opportunity is not sufficient so Sig needs to create more opportunities and then perhaps it’s visibility in future years will mean an abstract is almost immaterial because the organisers will want to hear more about something they already have awareness of - perhaps by getting sponsorship from some individuals and organisations with a voice

Caio
Simon

Ps what’s a squizz? (Or are you now speaking in Cornish dialect??!)

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Newest development

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It never ends does it

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It a bit much that administrators feel the need to moderate your post. It may be that they are a bit worried about what is going to be presented at conference. What makes this so sad is that it is usually you who is the first to reply to anyone new who comes to the forum, offering some much needed support at what we all know is a traumatic event in their lives. I hope you will continue and give freely of your advice. Look at this as an inconvenience that’s not worth worrying about, and know there are many, some who probably just read posts, but I’m sure appreciate all your help and advice.

Sending you my best wishes
Ann
Stroke Improvement Group.

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If i recall i had that happen to one of my posts in the past & i think it was because I’d used a word that was classed as a watch word so it automatically went to nerding approval. When i reread my post I changed one of the words that I thought might have been the problem & the post the appeared.

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Newest draft

As well as anything else it needs it needs some words removed to come below 250

title

Empathy, Recovery and Empowerment: The Potential for Digital Peer Support Networks:
11words

Describe your experience with stroke and how it relates to the chosen theme. Focus on specific events or insights that highlight your journey and how it impacted you*

I had a ischemic stroke 4yrs ago
Overnight it invalidated my whole family’s basis for navigating our lives. It is still scary; a source of anxiety.
26
I’ve found Life After Stroke (LAS) Much improved within the community of #StrokeThrivers. Folk who ‘just get-it’. Who share setbacks & progress. I couldn’t have managed so well without them
31

11 26 31 = 68

Give a short summary of the presentation including key points, personal insights and how it relates to life after stroke. Focus on education, practical advice, strategies and recommendations based on lived experience*

Sharing my fears, needs, advice, challenges, discoveries, insights & progress has been crucial to my 4 year recovery struggling with anxiety, sleep, medication, decompensations, rehab motivation. 24x7 emotional support has been received and given!
33
My peer communities exist on Facebook, Instagram, Reddit, stroke organisations. Everywhere.
11
None is yet tuned to our needs in configuration, moderation attitudes or skills nor used by therapist to aid & extend rehab services, reduce pressures on services, nor deliver superior & quicker outcomes for #StrokeThrivers with greater job satisfaction for professionals
41
As the Stroke community’s demographic changing so Servicing & funding must develop too
13
We’ll need new ATTITUDES, EXPECTATIONS & IMAGINATION where existing charities & institutions are enablers (not BARRIERS) to realisation
18

33 11 41 13 18 = 116 68 ==184

I’m Co-Chairing a Steering Committee to build hybrid Physical / Digital hubs in my local NHS trusts. A university school of Allied Health Professions is collaborating to align under- & post-grad curriculums to embrace and leverage community rehab through digital channels.
40
Experience shows adjusting/ developing: Training curricula & practices, Governance frameworks, Policies, strategies & safeguards, Community software, Service delivery pathways needs all stakeholders collaboration
23

184 40 23 = 247

‘We’ve’ formed a Stroke Improvement Group to explore Wisdom Of Crowds & to advocate. It’s charter is at https://bit.ly/SIGchater. #StrokeThrivers wishing to pay forward the support received (are invited to) sign there social media posts “member SIG”

37 247 =

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Have you submitted it yet?

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@Rups
Yes but can edit upto midnight tomorrow

[Edit as it was at midnight]
Submission ID 228 (for 5 slots!)

Title (required)

Empathy, Recovery and Empowerment: The Potential for Digital Peer Support Networks

Describe your experience with stroke and how it relates to the chosen theme. Focus on specific events or insights that highlight your journey and how it impacted you (required)

My ischemic stroke 4yrs ago invalidated my family’s basis for navigating our lives.

It is still scary.

I’ve found Life After Stroke much improved within a community of peer #StrokeThrivers. Folk ‘just get-it’, they share setbacks & progress. 24x7 emotional empathy & practical support received (and given!)

I couldn’t have managed as well without them

Give a short summary of the presentation including key points, personal insights and how it relates to life after stroke. Focus on education, practical advice, strategies and recommendations based on lived experience (required)

How sharing my fears, needs, challenges, discoveries, insights & progress has been crucial to recovery’s struggles with anxiety, medication, decompensations, rehab motivation etc

Communities I’ve used on Facebook, Instagram, Reddit, stroke organisations; Everywhere.

Why all are currently sub-optimal in configuration, moderation attitudes and skills.

How they could be:

  • Used by therapist to extend rehab services,
  • Reducing pressures on services,
  • Delivering superior & quicker outcomes for #StrokeThrivers and greater job satisfaction for professionals.
  • A research data source

Stroke community’s demographic has changed.
Services & funding must evolve too in ATTITUDES, EXPECTATIONS & IMAGINATION (Charities & institutions must become enablers - not BARRIERS)

Share strategies that informed and changed treatment, policy and/or support services (required)

I’m Co-Chairing a Steering Committee to build hybrid Physical / Digital hubs in my local NHS trusts. A university school of Allied Health Professions is collaborating to align under- & post-grad curriculums to embrace and leverage the sociology of digital community rehab.

Experience shows successes improve with all stakeholder’s collaboration developing/ adjusting: Curricula, Service delivery practices, Governance, Policies, AI use of Data, Software.

‘We’ve’ formed a Stroke Improvement Group for all stakeholders to advocate (Charter at Stroke Improvement Group Charter #StrokeThrivers wishing to pay forward support received (are invited to) sign social media posts “member SIG”)

https://app.oxfordabstracts.com/stages/76524/submissions/899856/form/view

1 Like