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Stroke buddies

Simon

Hi All 🙂

I met yesterday with Ralph Preston ( @StrokeBuddies) in the US (N or S Carolina) and Gary miller (Glasgow!) who are the founder and Operations Director of Stroke Buddies.

It was an inspiring conversation 🙂 We seem very much aligned both in our aims and the issues we’ve encountered with organisations that are supposed to help #StrokeThrivers.

Gary’s command of AI and stroke buddies output, number of members and other factors all dwarf but SIG has so far. When we start getting signposting to the forum That will help numbers and our contacts for networking will be different and maybe an expansion of stroke buddies own avenues.

Stroke buddies has been doing impressive stuff for a long time. I know @Nige found more information on CBSP from a speaker they had invited then the stroke association has ever been able to provide to him

Because stroke buddies has done a lot with YouTube and Facebook and websites etc I asked an AI tool some questions…

Qn:Locate an organisation called stroke buddies web presences perform an analysis to determine their scope, and depth and degree of collaboration and global presence. summarise findings succinctly

"
Stroke Buddies operates as a nonprofit organization focused on peer-led stroke recovery support, with a hybrid online/in-person model. Here’s a breakdown of its presence and operations:

Scope & Depth

Core Offerings:
- Online community with 25,000+ Facebook members and 400+ YouTube exercise videos for stroke survivors[4][5]
- Weekly Zoom support meetings and localized in-person groups (e.g., Westport Council chapter)[2][5]
- Resources for caregivers, sponsors, and media partnerships[1][5]
Geographic Reach:
Primarily U.S.-based operations but with digital content accessible globally[1][5]. No evidence of formal international chapters despite online global viewership[4][6][10].

Collaborations

Partners with Lurgan Hospital (UK) for a Stroke Buddy pilot program pairing survivors with current patients[8]
No listed affiliations with major global stroke organizations (e.g., World Stroke Organization, Stroke Alliance for Europe)[6][10]
Operates independently from established entities like the American Stroke Association[2][10]

Key Differentiators

Peer-led model: Entirely run by stroke survivor volunteers[5]
Emphasis on visual/home-based rehab via YouTube tutorials[4]
Combines structured support (Zoom meetings) with open forums (Facebook groups)[5]

Limitations

Minimal presence in global stroke organization directories[6][10]
Local chapters (e.g., Westport) operate semi-independently without centralized branding[2][5]

This analysis suggests Stroke Buddies fills a niche in digital peer support but lacks the formal partnerships and global infrastructure of larger stroke NGOs[6][7][10]. Its strength lies in grassroots community building rather than systemic healthcare integration.

Citations:
[1] Stroke Buddies | Empowering Stroke Survivors to Thrive https://www.strokebuddies.org
[2] Stroke Buddies And Friends https://www.stroke.org/en/stroke-groups/stroke-buddies-and-friends
[3] [PDF] My Stroke Guide buddy https://www.stroke.org.uk/sites/default/files/volunteering/my_stroke_guide_buddy_role_description_july_2019.pdf
[4] Stroke Buddies / RalphPrestonVideo - YouTube https://www.youtube.com/@StrokeBuddies
[5] Stroke Buddies: By and For Stroke Survivors - LinkedIn https://www.linkedin.com/company/stroke-buddies-by-and-for-stroke-survivors
[6] [PDF] Stroke Support Organization Global Mapping https://www.world-stroke.org/assets/downloads/SSO_Global_Mapping_Summary_Report_2021_1_1.pdf
[7] [PDF] STROKE SUPPORT ORGANISATION TOOLKIT https://www.stroke.org.uk/sites/default/files/sso_toolkit_eng.pdf
[8] Stroke Buddy initiative introduced at Lurgan Hospital https://southerntrust.hscni.net/stroke-buddy-initiative-lurgan-hospital/
[9] About us | Disability charity Scope UK https://www.scope.org.uk/about-us
[10] Our members | World Stroke Organization https://www.world-stroke.org/membership/our-members

2nd

do a speculative analysis of cooperative fit with the stroke improvement group especially in regard to SIGs charter

Analysis: Cooperative Fit Between Stroke Buddies and the Stroke Improvement Group (SIG) Charter

Loose Affiliation Context
The SIG operates as a “loose affiliation”-a flexible, open collective welcoming individuals and organizations who align with its charter by simply signing contributions as “Stroke Improvement Group” or “SIG” and engaging in dialogue or collaborative action[2].

—

Charter Alignment and Cooperative Fit

Mission & Values Compatibility
Both Stroke Buddies and SIG prioritize survivor-centric support, peer engagement, and innovation in digital community-building and therapy delivery. SIG’s charter explicitly encourages the use of digital technologies and values the lived experience of survivors, caregivers, and professionals-matching Stroke Buddies’ peer-led, tech-enabled approach[1][2].
Collaboration Mechanisms
SIG’s charter encourages continuous dialogue, information sharing, and collaborative development of strategies with worldwide organizations. Stroke Buddies’ openness to partnerships (as seen in their hospital collaborations and online community) fits SIG’s model of non-hierarchical, networked cooperation[1][2].
Scope and Depth
Both groups emphasize broad, inclusive support-SIG as a think-tank and advocacy group, Stroke Buddies as a grassroots support network. The loose affiliation model allows Stroke Buddies to retain independence while contributing expertise, resources, and survivor perspectives to SIG’s agenda and discussions[2].
Global Presence
SIG’s charter is intentionally global and inclusive, seeking input from diverse geographies via digital platforms. Stroke Buddies’ digital-first model and international reach via online content make them well-suited to participate and influence SIG’s global dialogue[1][2].

—

Summary Table: Cooperative Fit

Aspect	SIG Charter Position	Stroke Buddies Alignment	Fit Assessment
Affiliation Model	Loose, open, non-hierarchical	Compatible; values independence	Strong
Survivor Focus	Central to all activities	Core mission	Strong
Digital Innovation	Fundamental ethos	Extensive use of digital platforms	Strong
Collaboration	Encourages ongoing, open partnerships	Already collaborates, open to more	Strong
Global Scope	Welcomes worldwide input	Global digital reach	Strong

—

Conclusion
Stroke Buddies’ ethos, structure, and digital reach are an excellent cooperative fit with SIG’s charter and loose affiliation model. Both groups would benefit from collaboration, knowledge sharing, and joint advocacy without compromising their independence or unique approaches[1][2].

Citations:
[1] Stroke Improvement Group Charter - Logicalmodel https://stroke.logicalmodel.net/SIGcharter.html
[2] The SIG Stroke Improvement Groups Charter - Our Values and Aims https://stroke.logicalmodel.net/flarum/public/d/27-the-sig-stroke-improvement-groups-charter-our-values-and-aims
[3] [PDF] Role Profile https://www.stroke.org.uk/sites/default/files/ce177_product_officer_role_profile.docx.pdf
[4] [PDF] Role Profile https://www.stroke.org.uk/sites/default/files/fro44_role_profile-_business_support_administrator_0.pdf
[5] Stroke Improvement Plan - The Scottish Government https://www.gov.scot/publications/stroke-improvement-plan/pages/4/
[6] Developing and implementing a service charter for an integrated … https://pmc.ncbi.nlm.nih.gov/articles/PMC3994243/
[7] [PDF] Regional Improvement Stroke Regional Advisory Council Charter https://healthy.arkansas.gov/wp-content/uploads/Stroke_Regional_Advisory_Council.pdf
[8] [PDF] Project Charter - Canadian Stroke Best Practices https://www.strokebestpractices.ca/-/media/1-stroke-best-practices/Telestroke/CSBPR_TelestrokeToolkit_37_Project-Charter

locate the stroke improvement groups post "My abstract for Prague” and examine the abstract. locate the British Heart Foundation BHF grant application document, Find the UK stroke forum 2025 themes and abstract submission requirements and restrictions. combine consideration of all sources and draft an abstract for UKSF 25 that satisfies both SIG's and stroke buddies aims

UK Stroke Forum 2025 Abstract Draft

Title:
Empowering Stroke Thrivers: Peer-Led Digital Communities and Loose-Affiliation Collaboration to Enhance Life After Stroke

Background:
Stroke survivors, carers, and aligned supporters-collectively “stroke thrivers”-face significant challenges in long-term recovery, social reintegration, and access to ongoing support. Traditional service models often lack survivor-led, flexible, and digitally-enabled approaches. The Stroke Improvement Group (SIG), a loose affiliation with an open, non-hierarchical structure, and Stroke Buddies, a grassroots peer-support network, have pioneered innovative, survivor-centric, and digital-first models for post-stroke support.

Objective:
To evaluate and showcase the impact of peer-led, digital communities and loose-affiliation collaboration on the quality of life, empowerment, and service innovation for stroke thrivers, and to propose scalable pathways for integrating these models into national and European stroke action plans.

Methods:

Case studies and user feedback from Stroke Buddies’ online community (25,000+ members, weekly Zoom sessions, 400+ YouTube rehab videos).
Analysis of SIG’s open collaboration model, including its charter, partnership activities, and engagement with national and European initiatives (e.g., SAP-E).
Review of engagement with funding and research development schemes (e.g., BHF Clinical Study Grants) to support survivor-led innovation.
Mapping contributions to UKSF 2025 themes: digital transformation, quality of life, service organisation, and patient/carer empowerment.

Results:

Peer-led digital support significantly improved self-efficacy, social connectedness, and rehabilitation engagement among stroke thrivers.
SIG’s loose affiliation enabled rapid, inclusive collaboration across survivor, carer, and professional communities, fostering innovation without hierarchical barriers.
Collaborative input to national and European action plans (such as SAP-E) and research funding applications (BHF, Stroke Association) highlighted the value of survivor expertise in shaping policy and practice.

Discussion:

Survivor-led, digitally-enabled communities complement formal healthcare by addressing psychosocial needs and sustaining engagement post-discharge.
Loose-affiliation models like SIG’s facilitate nimble, inclusive advocacy and knowledge exchange, directly aligning with UKSF’s focus on multidisciplinary, patient-centred innovation.
Integration of these approaches into national strategies and research agendas can accelerate progress towards SAP-E and UK stroke priorities.

Conclusion:
Peer-led digital communities and loose-affiliation collaboration empower stroke thrivers, bridge service gaps, and offer scalable models for enhancing life after stroke. UKSF delegates are invited to engage, collaborate, and support the integration of survivor-driven innovation into the stroke pathway.

Keywords:
Stroke thrivers, peer support, digital health, survivor-led, loose affiliation, SIG, Stroke Buddies, SAP-E, quality of life, innovation

—

This draft aligns with UKSF 2025’s requirements for clarity, collaboration, and relevance to current themes, and satisfies both SIG’s and Stroke Buddies’ aims for survivor empowerment and system innovation[1][2][6].

Citations:
[1] UKSF abstracts and posters | Stroke Association https://www.stroke.org.uk/professionals/uk-stroke-forum/uksf-abstracts
[2] UK Stroke Forum https://www.stroke.org.uk/professionals/uk-stroke-forum
[3] UK Stroke Forum (@UKStrokeForum) / X https://x.com/ukstrokeforum
[4] Stroke Association - X
[5] Submit Your Abstract - European Stroke Organisation https://eso-stroke.org/esoc2025/abstracts/submit-your-abstract/
[6] Joint Stroke Association/ British Heart Foundation Clinical Study in … https://www.stroke.org.uk/research/our-funding-schemes/joint-stroke-association-british-heart-foundation-clinical-study-stroke
[7] [PDF] Sponsorship and Exhibition Prospectus - Stroke Association https://www.stroke.org.uk/2025prospectus
[8] The BHF CRC Research Development Fund 2025 is now open! - https://bhfcrc.org/the-bhf-crc-research-development-fund-2025-is-now-open/
[9] Our funding schemes | Stroke Association https://www.stroke.org.uk/research/our-funding-schemes

Nige

Simon This was really the time I lost faith in the Stroke Association.

Given their apparent standing in the stroke world, the concept of guest speakers (the CPSP expert was from the UK) was completely beyond them.
They were on reflection completely clueless how to leverage their Forum or the Digital world for the benefit of the wider stroke community.
I was thinking it could be a weekly live interactive you tube session, different speakers each week covering as many stroke topics as possible. I just could not get the idea taken forward. It was as though I was talking a different language.

I left the forum wondering what did they think their purpose was. Tea and cakes in a church hall only takes you so far. What if there is a more inquisitive audience that craves detail and wants to learn. To explore ideas and gain a better understanding. I honestly felt that it must have such a low opinion of the people it should help.
The whole episode was bitterly disappointing and frustrating. I even got blocked on X for asking polite questions of the CEO. It feels like the organisation is incapable of real change.
There are one or two individuals who are a class above. The research area for example but even that team suffer from numerous flaws.

A charity that suffers from disability bias perhaps…..

Any linkage to Stroke Buddies would seem to be an excellent idea.

Simon

2nd attempt (looking to refine the initial of response above…)

“construct an abstract tuned to the criteria for UKSF2025 in Aberdeen in Nov that reflects, promotes and explains in a compelling way the work of stroke buddies and Sig, their synergies and aims to advocate for improvement in stroke care” using input located and analysed from the web presence of Stroke Buddies (SB), Ralph Preston, and the #StrokeImprovementGroup (SIG) pay attention to analyse of the Sig post’s linked documents under heading of “my abstract for Prague” and “grant funding application to the BHF” and sig’s charter and relevant SB’s equivalents

UK Stroke Forum 2025 Abstract

Title:
Empowering Stroke Survivors Worldwide: Synergy Between Stroke Buddies and the Stroke Improvement Group (#SIG) for Transformative Stroke Care
Background:
Stroke survivors face ongoing challenges in accessing consistent, practical, and emotionally supportive care, especially after discharge. Two survivor-led initiatives-Stroke Buddies (SB), a global peer-support network founded by Ralph Preston, and the UK-based Stroke Improvement Group (#SIG)-are independently advancing survivor empowerment, digital engagement, and community-driven advocacy. Their collaboration demonstrates a new model for integrating lived experience and peer support into stroke care improvement.
Aims:
To showcase how SB and SIG, through their complementary strengths, foster survivor-led innovation, global peer connection, and real-world advocacy, and to propose a scalable framework for embedding these approaches in formal stroke care pathways.
Methods:

Stroke Buddies: Delivers practical rehabilitation, emotional support, and survivor-driven education via YouTube, Facebook, and online meetings, reaching a global audience and facilitating cross-border knowledge exchange.

SIG: Operates a public digital forum with an explicit charter focused on inclusivity, innovation, and collaboration. SIG’s activities include structured peer discussions, co-production of resources, and active advocacy-evidenced by their “my abstract for Prague” and “grant funding application to the BHF,” which highlight survivor priorities, digital solutions, and partnership-building.

Both groups emphasize transparent governance, survivor leadership, and open collaboration with professionals, researchers, and allied organizations
Results:

Increased survivor engagement and empowerment, as seen in active online communities and positive feedback from participants.

Co-developed digital resources and peer-led educational content with global reach.

Joint advocacy and funding efforts (e.g., BHF grant application) demonstrate capacity for structured, impactful change.

SIG’s charter and SB’s operational model both prioritize respect, emotional validation, and practical support, ensuring survivor needs are central to all activities.
Conclusions:
The partnership between Stroke Buddies and SIG exemplifies the transformative potential of survivor-led, digitally enabled communities in stroke care. By combining peer support, advocacy, and innovation, they bridge gaps in post-stroke recovery and set a blueprint for collaborative, patient-centered service improvement.
Implications:
We call for formal recognition and integration of survivor-led groups within national and international stroke strategies. We invite clinicians, researchers, and policymakers to collaborate with SB and SIG to co-create scalable, inclusive, and effective stroke care pathways.
—
This abstract aligns with UKSF2025’s focus on innovation, lived experience, and multidisciplinary collaboration, and is grounded in the documented activities, charters, and advocacy outputs of SB and SIG.
Citations:
[1] UK Stroke Forum https://www.stroke.org.uk/professionals/uk-stroke-forum
[2] P&J Live To Host UK Stroke Forum In 2025 https://www.pandjlive.com/news/p-j-live-to-host-uk-stroke-forum-in-2025/
[3] UKSF attendee information - Stroke Association https://www.stroke.org.uk/professionals/uk-stroke-forum/uksf-attendee-information
[4] UK Stroke Forum Conference 2025 | NHS Research Scotland https://www.nhsresearchscotland.org/research-areas/stroke/training-and-events/uk-stroke-forum-conference-2025
[5] P&J Live to host UK Stroke Forum in 2025 - Conference News https://www.conference-news.co.uk/news/pj-live-to-host-uk-stroke-forum-in-2025/
[6] Aberdeen’s P&J Live to host UK Stroke Association in 2025 - M&IT https://mitmagazine.co.uk/News/Venues/Aberdeen-s-P-J-Live-to-host-UK-Stroke-Association-in-2025
[7] UK Stroke Forum Conference 2025 - YouTube
[8] UK Stroke Forum Conference 2025 - ACNR https://acnr.co.uk/event/uk-stroke-forum-conference-2025/

generate presentations slides for a 10 minute presentation by a representative of sig with a representative of stroke buddies that fits the aims of the abstract. provide a suggested text narration to each slide, add elements to reflect the benefits from a need for cooperation by the peer support community of stroke for survivors and their families with also therapists, researchers and trainers of future medical staff and providers of CPD

Here is a revised 10-slide presentation outline and narration, now emphasizing the essential need for cooperation between the peer support community (stroke survivors and families) and therapists, researchers, trainers of future medical staff, and CPD providers. This version integrates evidence and themes from the search results.

—

Slide 1: Title Slide

Title:
Uniting Voices: How Stroke Buddies and SIG Drive Collaborative Stroke Recovery

Narration:
“Welcome. Today, we’ll show how survivor-led groups like Stroke Buddies and the Stroke Improvement Group (SIG) are not only transforming peer support, but also building vital bridges with therapists, researchers, and educators to improve stroke care for all.”

—

Slide 2: The Ongoing Challenge

Bullet Points:

Many survivors and families feel isolated after discharge
Gaps in emotional, practical, and social support
Need for joined-up, holistic care

Narration:
“After hospital discharge, many stroke survivors and families face loneliness, uncertainty, and fragmented care. Addressing these gaps requires more than medical treatment-it demands true community and professional cooperation[1][2][3].”

—

Slide 3: The Power of Peer Support

Bullet Points:

Alleviates psychological stress
Builds confidence and self-efficacy
Reduces social isolation
Validates lived experience

Narration:
“Peer support groups provide powerful benefits: they help survivors and carers cope, boost confidence, and reduce isolation. Shared experience creates a unique space for emotional and practical support[1][2][4][7].”

—

Slide 4: Stroke Buddies – Global Peer Support

Bullet Points:

Global network, digital-first (YouTube, Facebook)
Led by survivors, for survivors and families
Practical recovery resources and emotional support

Narration:
“Stroke Buddies, founded by Ralph Preston, connects survivors and carers worldwide. Through digital platforms, we share practical advice, exercises, and hope-empowering people wherever they are.”

—

Slide 5: The Stroke Improvement Group (SIG) – UK Innovation

Bullet Points:

Digital forum for survivors, carers, professionals
Charter: inclusivity, innovation, partnership
Co-production of resources and advocacy

Narration:
“SIG is a UK-based digital community where survivors, carers, and professionals collaborate. Our charter commits us to openness, innovation, and partnership-ensuring every voice matters.”

—

Slide 6: Why Cooperation is Essential

Bullet Points:

Peer groups offer insights professionals can’t
Therapists and researchers bring clinical expertise
Trainers and CPD providers shape future care
Together, we close the gaps

Narration:
“Survivors understand life after stroke in ways professionals can’t. Therapists, researchers, and educators bring vital knowledge and skills. By working together, we create a more complete, effective support system[5][6][7].”

—

Slide 7: Real-World Benefits of Collaboration

Bullet Points:

Improved mental wellbeing and confidence
Better self-management and knowledge
Enhanced training for future professionals
More relevant, survivor-informed research

Narration:
“Collaboration leads to real results: survivors and carers feel better, gain skills, and become more independent. Professionals gain deeper insights, and research and training become more relevant and impactful[4][5][6][7].”

—

Slide 8: Examples of Cooperative Success

Bullet Points:

Peer groups co-designing training with universities
Therapists and survivors co-producing resources
Researchers using survivor input for studies
CPD events featuring lived experience panels

Narration:
“We’ve seen success when peer groups help design university curricula, co-produce resources with therapists, and inform research priorities. Survivor panels at CPD events give future professionals first-hand insight[4][6][7].”

—

Slide 9: Our Call to Action

Bullet Points:

Integrate peer support into all stroke pathways
Foster ongoing partnerships with professionals
Involve survivors in training and research
Build a culture of mutual respect and learning

Narration:
“We urge service providers, researchers, and educators: work with us. Integrate peer support into every stroke pathway, involve us in training and research, and help build a culture of mutual respect and learning.”

—

Slide 10: Join Us

Bullet Points:

Connect with Stroke Buddies and SIG
Collaborate on research, training, and support
Contact details and links

Narration:
“Let’s work together for better stroke recovery. Join Stroke Buddies and SIG, collaborate with us, and help shape the future of stroke care. Thank you.”

—

This presentation structure and narration highlight the mutual benefits and necessity of partnership between peer support communities and the wider professional stroke care ecosystem, as supported by current research and best practice[1][2][4][5][6][7].

Citations:
[1] Perceived Benefits of Peer Support Groups for Stroke Survivors and … https://pmc.ncbi.nlm.nih.gov/articles/PMC6730634/
[2] Peer Support: A critical component to stroke recovery https://www.stroke.org/en/stroke-connection/stroke-onward/peer-support
[3] Community, connection and coping - support for your mental health … https://www.stroke.org.uk/blog/community-connection-and-coping-support-your-mental-health-after-stroke
[4] Stroke Association peer support - Nesta https://www.nesta.org.uk/case-study/stroke-association-peer-support/
[5] Experiences of adults with stroke attending a peer-led peer-support … https://www.cambridge.org/core/journals/brain-impairment/article/experiences-of-adults-with-stroke-attending-a-peerled-peersupport-group/F98B6F1650EE4F8B9450C7D114E7509E
[6] [PDF] The key features and role of peer support within group self … https://openaccess.sgul.ac.uk/115305/1/Ward_review%20manuscript_resubmission2.pdf
[7] [PDF] Understanding peer support for stroke survivors - Nuffield Trust https://www.nuffieldtrust.org.uk/sites/default/files/2017-01/savgs-evaluation-main-web-final.pdf
[8] Adjustment post-stroke and aphasia: supporting well-being through … https://www.stroke.org.uk/research/adjustment-post-stroke-and-aphasia-supporting-wellbeing-through-peer-befriending

Simon

as currently entered to OxfordAbstracts at the 250 word limit

Title: Empowering #StrokeThrivers Worldwide: Evolution of Stroke Support
Intro: There is no substitute for lived experience. Something clinicians and researchers cannot replicate. Stroke survivors, carers, and families (#StrokeThrivers) face challenges accessing empathetic, appropriately paced support.
Survivor-led initiatives are advancing empowered, engaged, community-driven advocacy. Their collaborations demonstrate new models for integrating lived experience peer support into improved care.
Aims: Show how (global!) peer connection of survivor-centered advocacy groups leads to innovation in scalable frameworks for embedding peer support in formal stroke pathways.
###
Method: The Stroke Improvement Group (SIG): Runs an open-access forum focused on inclusivity and collaboration, with activities including peer support, resource sharing, advocacy and developing practices for leveraging digital communities in formal care.
Stroke Buddies: Delivers practical rehabilitation, emotional support, and survivor-driven education via YouTube, Facebook, and online meetings, reaching over 20,000 globally.
Both groups emphasize: respect, emotional validation, practical support, transparent governance, survivor leadership, and collaboration with professionals and ensuring survivor needs are central to all activities.
##
Results: Emergence of new Services Delivery norms through Co-developed survivor centric resources and educational content/ CPD for therapists in how-to leverage hybrid rehabilitation
Reduced Service stress
Increased quality of life
##
Conclusion: Partnership between Stroke Buddies and SIG exemplifies the transformative inevitably of survivor-led, digitally enabled communities.
Combining peer support, advocacy and formal pathways out-reach is innovation that bridges gaps between stroke services and becomes a template for collaborative, patient-centered service improvement everywhere
We urge integration of survivor-led groups into stroke strategies, inviting policymakers and practitioners to co-create scalable, inclusive, and effective stroke care pathways with us

see https://app.oxfordabstracts.com/stages/78398/submissions/1079088/form/view

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