Fighting the Broken System: Our Family’s Fight for Rora (A Story from March 2020 to Today
When I think back to March 2020, I don’t just remember a world suddenly redefined by a pandemic. I remember our family’s quiet admission that something inside Rora wasn’t functioning the way it should—something that would soon threaten her present and her future. What began as a whisper of concern grew into a battle against a broken system that left a child with incredible potential and a family fighting to keep up.
Rora’s Reality: A Life on the Edge of Exclusion
Social life: By the age of 10, Rora already carried the weight of a criminal log. Not because of anything she did as right minded, but because alsl her inability to regulate her impulses and emotions left a trail that followed her into every day. Schools, peers, and mentors struggled to see the person beyond the behavior, and the consequences stacked up.
Health scare: A bicycle accident that could have ended far worse. Rora broke her arm in four places and required emergency surgery. She wore a helmet, and yet the incident underscored a deeper truth: her body and mind sometimes fought against the structure set to protect her.
The system’s gaps: Despite repeated efforts by multi-agency teams, pediatric services and community supports left her on waiting lists for over 4 years. The urgent medical needs were obvious: behavioral regulation, mental health support, and timely access to specialists. But the system’s pathways and bottlenecks repeatedly failed to translate need into action.
The Turning Point: Private Assessment, Private Pressure, Public Hope
Private assessment: We sought an ADHD assessment privately, recognizing that time was a luxury Rora could not afford. By June 2024, medication began, and with it a steadier path—one year of medication with trials and adjustments, but finally something that allowed her to function and begin to grow.
The cost of care: By October 25, she had seen a pediatric consultant who arranged NHS nurse involvement in her care. This transition, while necessary, priot to had created a financial strain we had not anticipated, depleting savings and adding stress to a family already stretched thin.
A moment of relief in a long storm: Rora began to gain weight steadily, her mood lifting, her school life stabilizing, and her confidence returning. Her best subject is maths, and she flourishes in her specialist school setting. She even made friends which is huge.
The Current Landscape: Waiting, Advocacy, and Exhaustion
School and autism assessment: Rora thrives in school and awaits an autism assessment we cannot fund privately. The wait, potentially years long, sits like a weight on our family’s shoulders.
Appeals and engagement: In 2023, I raised concerns with PALS; the final outcome in 2024 offered no real resolution when attempting to appeal the decision not to expedite. Her needs persisted, and so did our attending calls for help.
Political response: In July 2025, I brought her case to my local MP, Alicia Kearns. The team provided support and ensured her case was acknowledged in Parliament. Yet the response remains generic, and the severity of what’s happening to vulnerable children and families in the UK feels once again dismissed.
A Turning Point: The Creation of The RORA Project
There are moments when exhaustion becomes a catalyst for change. For me, the moment came when I decided that walking away was my only option—because if I didnt walk away, I might not be here to tell this story. Instead, I created The RORA Project to build a safe space for parent-carers who are navigating similar battles. It’s a space to share, to be heard, and to develop practical solutions that could shape policy, practice, and everyday life for families like ours.I adore each and every family who walks through the doors but the sad reality is each of these families have been failed in similar circumstances.
What The RORA Project Aims To Do (Suggestions for Change)
Anya Kennedy, Occupational Therapist Scotland this week made a very valid point when i think back to the hardest times accessing support over the years.
Integrated neurodevelopmental assessments: Move away from separate assessment pathways that create long delays. A unified, streamlined process could cut waiting times and ensure timely access to supports.
Extend sensory rooms: Sensory-friendly spaces shouldn’t end at nursery. We need sensory integration options in mainstream and secondary schools to help all students regulate and participate.
SEN “betweener” schools: Create intermediate educational options that bridge gaps between mainstream and specialist settings, reducing the friction that can push families into crisis.
Expedite by need, not by pathway: A simpler triage system that considers School, Social Care, Health, Police, Mental Health services, and charities together—prioritizing urgent need rather than strict departmental timelines.
Clear pricing guidelines: Transparent pricing for private assessments, therapies, and care, with stricter rules to protect families from “daylight robbery” when facing desperate circumstances.
Patient-centered communication: Consistent, transparent, and empathetic updates from all services involved, with clear expectations and timelines that families can rely on.
Many families just like ours are trapped in border wars over funding leaving many families with no say in their care via the nhs. Example our gp is 15minute drive away. Our local is at capacity. Due to county lines this means regular outpatient care we are forced to travel up and down the country adding to financial difficulties, missing education due to longer travelling times not to mention when you have a sensory impairment which makes car travel unbearable often resulting in illness by the time we reach our apppintment.
A Personal Note: On Resilience, Care, and Courage
I won’t pretend this is easy. Standing as a lone advocate for Rora has been mentally and physically exhausting. There were days I felt I couldn’t continue—the fear of what would happen if I faltered loomed large. Yet choosing to step back from the brink isn’t the end; it’s a declaration that I still have more to contribute. The RORA Project is a commitment to the belief that families shouldn’t have to carry the burden alone, and that systems can and must do better for our children.
If you’re reading this and recognize your own family in Rora’s story, you’re not alone. We can build a community that supports each other, shares resources, and pushes for policy changes that make the difference between surviving and thriving.
Next steps and how you can help
Share this story to raise awareness about the gaps in pediatric, educational, and social care pathways.
Engage with local representatives to advocate for integrated assessments and better funding for autism and ADHD services.
Support or participate in The RORA Project: volunteer, contribute insights, or help widen our network of families and professionals who can drive practical improvements.
For families facing similar struggles: document timelines, keep a detailed log of appointments and decisions, and don’t hesitate to seek private assessments when public pathways fail. Use that information to advocate for urgently needed care. If your like us and found ourselves between the inability to fund but high needs are being overlooked. Speak up. I know the shame of admitting i cannot provide private medical care is hard to overcome but struggling in silence will only break you more. Reduce the stigma, its ok to not be ok.
Final thought
Rora is thriving now, medicated and growing steadier every day. Her resilience—paired with the stubborn hope of a family unwilling to give up—remains the beacon guiding The RORA Project. If we can channel that resilience into system-wide changes, we might spare other families the heartbreak of navigating a broken path and instead offer them a map toward timely support, understanding, and real life situations.
Much love
Chantelle