The Challenge

Young Epilepsy wanted to develop a bold, future-facing strategy to take the organisation into 2030 — one that would transform the lives of children and young people with epilepsy, raise the organisation’s profile nationally, and align internal teams and trustees around a shared ambition.

There was already great work happening across education, health, and research. But there wasn’t a unifying “north star” for why the organisation existed or what it should focus on most. Young Epilepsy recognised the need to shift from delivering good work in many areas, to achieving measurable change in the things that matter most to young people with epilepsy and their families.

The Objective

To co-create a clear, ambitious and validated 2030 strategy that:

  • Articulates a bold vision and mission

  • Defines priorities and goals for the next 5 years

  • Is informed by the voices of young people with epilepsy and the wider ecosystem

  • Inspires staff, Trustees and partners with a sense of urgency, direction and creativity

  • Provides a roadmap for operational delivery and investment

The Approach

The project was delivered over three tightly-scoped strategic phases:

Phase 1: Building the Burning Platform

We conducted a deep dive into where Young Epilepsy is today, where it wants to be, and what’s changing around it. This included:

  • Interviews and roundtables with executive team and Trustees

  • Review of existing insight, strategy and data

  • Ecosystem mapping of existing support for young people with epilepsy — from the NHS, charities, education providers and others

  • Foresight research on trends shaping the future of childhood, education, health and charity

  • Creation of a shared ‘burning platform’: a clear articulation of the urgent case for change, used to anchor the strategy moving forward

Phase 2: Defining the Vision

We facilitated a series of high-energy workshops with the executive leadership team and Trustees to co-create:

  • A refined vision, mission and end goals

  • A set of compelling “vision realities” – storytelling examples of what a better future could look like for young people with epilepsy

  • Audience validation via surveys and stakeholder feedback

  • This created alignment and momentum across senior leaders and gave voice to the young people and professionals that YE exists to serve.

Phase 3: Priorities and Goals

The final phase turned strategic ambition into practical direction:

  • Prioritising the strategic pillars to focus on over the next 5 years

  • Defining clear goals, activities, and outcomes for each

  • Building the foundations for operational planning and capability-building

  • Drafting and iterating the full strategy document with feedback loops across leadership and stakeholders

Impact

  • A bold new 2030 strategy with:

    • Clear vision and mission

    • Strategic priorities and goals to guide investment and delivery

    • Shared belief in the change Young Epilepsy can lead

  • Leadership team and Trustees aligned around a common direction

  • Strategy grounded in evidence, insight and lived experience

  • Greater clarity on YE’s unique role in the system and how to increase national influence

  • Foundation laid for cross-directorate delivery, operational planning, and partnership growth

  • Renewed energy, creativity and confidence across the organisation