Answer extracted from the Hull Trains – Moving Minds podcast — listen to the full episode below.
How did a brain injury survivor turn community need into a charity that now serves thousands?
After running marathons to fundraise for his own recovery, Paul Spence launched a Facebook page about brain injury and found people reaching out directly, asking him to visit their family members. What started as informal home visits revealed a gap no statistic could fill: brain injury survivors needed someone who truly understood lived experience. This community demand led him to formalize the effort, ultimately founding P.A.U.L For Brain Recovery, now an NHS-commissioned charity.
From Personal Recovery to Community Voice
In 2012, Paul Spence suffered a frontal lobe brain hemorrhage after an unprovoked attack during an Easter bank holiday weekend. After spending time on the major trauma ward at Hull Royal Infirmary and intensive care, he faced a long, uncertain recovery. As an electrical engineer and father of two, he had to rebuild his life from scratch while dealing with lasting cognitive deficits that made employment and daily independence uncertain for months.
Rather than retreat, Spence began channeling his energy into structured recovery—first through small home workouts, then running half marathons and marathons. He raised £25,000 across multiple fundraising events to support Hull Royal Infirmary, the hospital that saved his life. More importantly, he decided to document and share his insights into brain injury recovery through a Facebook page, aiming to give others hope and practical understanding.
The Moment Community Demand Became Clear
The turning point came when people began messaging him directly, not asking for financial advice or workout tips, but something far more personal: they asked him to visit family members in recovery. Spence began visiting people in their homes, sitting with them, listening to their experience. What he discovered was transformative.
In those conversations, people repeatedly said, "You get it"—not because Spence had medical credentials or statistics, but because his lived experience created an irreplaceable connection that no neuroscience report or clinical briefing could replicate. They felt truly understood by someone who had walked the same path. This insight—that authenticity and shared experience mattered more than credentials in moments of deep vulnerability—became the foundation for what would become his charity.
As Spence explains in the episode, the community was telling him something clear: there was unmet need, and he was positioned to meet it.
"I am different, I am no less—I've been judging myself as less of a person, and it was not fair. I needed encouragement, kindness and compassion."
Paul Spence — CEO and Founder of P.A.U.L For Brain Recovery. An electrical engineer turned brain injury advocate, Spence survived a frontal lobe brain hemorrhage in 2012 and spent two years in neuropsychology recovery. After losing his job due to lasting cognitive deficits, he transformed his recovery through structured goal-setting and fundraising, then founded P.A.U.L For Brain Recovery to provide accessible, lived-experience-led support. The charity is now commissioned by the NHS and partners with five departments at the University of Hull.
Formalizing Community Need Into Structure
The informal visits and Facebook page had proven the need, but Spence knew he had to move beyond grassroots effort. He sought a formal business plan and charity registration, recognizing that to scale impact and ensure sustainability, the work needed institutional structure. What began as one person's recovery journey became an organization with eight staff members (soon to be ten) delivering NHS-commissioned services.
The evolution from personal resilience to organizational leadership happened because the community itself demanded it. In the full episode, Spence details the specific steps that took P.A.U.L For Brain Recovery from a Facebook page to a fully registered charity, and how partnerships with institutions like the University of Hull and Hull Royal Infirmary expanded its reach and credibility.
See also
How does therapeutic intervention and mental health support contribute to brain injury recovery and identity reconstruction?
After two years of recovery, Paul accessed mental health services and worked with a psychotherapist who helped him reframe his thinking. A critical breakthrough was recognizing that he was not less than before, but different—and equally worthy of respect and opportunity.
What role did structured exercise and goal-setting play in recovery from brain injury?
Paul started with a small home workout of five press-ups, five sit-ups, and five squats, which gave his family hope and provided structure to his day. This initial framework progressively evolved into running marathons and major fundraising events that raised £25,000 for Hull Royal Infirmary.
What are the hidden challenges of brain injury beyond physical symptoms, particularly in social and professional contexts?
Brain injury survivors often look okay on the surface when walking and talking, which leads others to misunderstand their struggles. Paul couldn't drive for two years, couldn't leave his house alone for four months, and eventually lost his job despite his hard work in recovery.