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A National Consultation Rooted in Lived Experience
At last year’s Rebuilding Lives conference, we launched a Call for Action. A bold proposal for five systemic changes that could transform outcomes for people with spinal cord injury (SCI).
These changes aimed to improve physical and mental health, reduce inequalities, and deliver better value through innovation and efficiency. Together, they formed the foundation of what could become a National Spinal Cord Injury Strategy.
At the time, the question of whether such a strategy was needed remained open. But through conversations at the conference and across the UK, one message became clear: there is overwhelming demand for a coherent national vision—a shared understanding of what “good” looks like for SCI care and support.
Following Rebuilding Lives 2024, we committed to working with the sector to explore this further. In autumn 2024, we convened a coalition of SCI charities and launched a national consultation. This included a call for evidence and a survey targeting both professional stakeholders and people with lived experience.
The response was inspiring. Not only did the consultation confirm the need for a national strategy, it also expanded our understanding of what it must include. We heard powerful insights about capacity building, the needs of children and young people, and the challenges of a changing demographic. The fundamentals of our original Call for Action held strong—but the consultation made it richer, more inclusive, and more urgent.
The Open University was commissioned to analyse the results, while the All-Party Parliamentary Group on Spinal Cord Injury launched a parallel inquiry into the same question.
Download the full report below:
Spinal Cord Injury Strategy Consultation
Aspire | Back Up | Cauda Equina Spinal Cord Injury | Horatio’s Garden | Inspire Foundation | Regain | Spinal Injuries Association | Spinal Research | Stoke Mandeville Spinal Research | WheelPower
We are a coalition of spinal cord injury (SCI) charities and partner organisations and we are working with the NHS, government bodies, and the healthcare community to make sure the strategy prioritises:
- Accessible rehabilitation
- Lifelong support
- Adequate funding and resources
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