Introduction

The Journey That Shaped My Writing

When my child was diagnosed with complex medical needs, I didn’t just enter a new role as a carer—I entered a new world. It was a world of medical terminology, endless appointments, complex systems, and profound love mixed with profound challenge. For a decade, I navigated this landscape, learning its contours and creating maps where none existed. I discovered both the extraordinary resilience of families and the systemic barriers that make their journeys unnecessarily difficult. Two years ago, I experienced another profound transition with the loss of my child. This grief journey has further deepened my understanding of palliative care, bereavement support, and the ways systems can either support or fail families in their most vulnerable moments. These experiences don’t just inform my writing—they are the foundation from which it grows. They give me perspective that cannot be learned from research alone, allowing me to write with authenticity about topics that are often misunderstood or oversimplified.

Writing Approach

I believe in honest, compassionate storytelling that educates while honoring the dignity of disabled children and their families. My writing aims to:

– Challenge misconceptions about disability, care, and family experiences
– Advocate for better support systems based on actual family needs
– Create spaces where families like mine can see their experiences reflected with authenticity
– Build bridges between families, professionals, and the wider public
– Influence policy and practice through evidence-based arguments grounded in lived experience

Whether writing personal essays, reported features, or educational content, I approach each piece with respect for the complexity of these topics and the diversity of experiences within the disability community.

Areas of Knowledge

My expertise spans several interconnected areas:

Child Disability Support Systems
Understanding how healthcare, education, and social care systems work—and don’t work—for disabled children and their families.

Children’s Palliative Care
The specialised field that combines medical expertise with profound emotional support for children with life-limiting conditions and their families.

Parent Carer Experiences
The daily realities, emotional journeys, and practical challenges of caring for a disabled child.

Child Bereavement
The complex grief journey following the loss of a child, including the unique aspects of bereavement after caring for a child with complex needs.

Disability Rights Advocacy
Working toward a world where disabled children are valued, supported, and celebrated for who they are.

Healthcare and Social Care Navigation
The practical skills involved in accessing appropriate support in fragmented systems.

Why My Perspective Matters

My writing comes from a place of lived experience, allowing me to bring depth, nuance, and authenticity to topics that are often misunderstood or simplified. I connect with readers through:

– Firsthand knowledge of the daily realities of caring for a disabled child
– Experience navigating complex healthcare, education, and social care systems
– Understanding of the emotional journey of parent carers and bereaved parents
– Insight into the challenges and joys that are often invisible to the outside world
– Perspective as a bereaved parent within the palliative care system

These experiences allow me to write with honesty about difficult topics while maintaining respect for the dignity of disabled children and their families. I believe that authentic storytelling has the power to create understanding, challenge misconceptions, and ultimately contribute to a more inclusive and supportive world.

Let’s Connect

I welcome opportunities to collaborate with publications, organizations, and individuals who share my commitment to improving understanding and support for disabled children and their families.

If you’re interested in working together or learning more about my writing, please get in touch. I’m particularly interested in projects focused on:

– Improving understanding of child disability and palliative care
– Advocating for better support systems
– Amplifying the voices of families with lived experience
– Creating educational content for professionals and the public

I look forward to hearing from you.