“Rachel faced multiple cancers with extraordinary courage. Sadly, red-flag referrals were missed, and by the time her genetic condition, Cowden syndrome, was recognised, it was too late.”
Rachel’s story is one of love, courage, and deep humanity — but also one that exposes the painful consequences of system failures that should never have been allowed to continue.
Rachel is remembered by her husband Stuart as "known for her infectious smile, her love of life, and her extraordinary empathy for others despite her own challenges." She poured that empathy into her work as a teaching assistant and first-aider — pupils, families, and colleagues adored her.
For over 20 years, Rachel faced cancer after cancer. Each diagnosis was a moment when the system had another chance to act, another opportunity to join the dots, another red flag that should have prompted genetic testing. But those chances were repeatedly missed. The safety net that should have protected her simply wasn't there.
By the time Rachel was finally tested in 2019, the results revealed the truth: she carried PTEN hamartoma tumour syndrome (Cowden syndrome), a hereditary condition that explained her long history of cancer.
But this vital diagnosis came far too late. Rachel died following a recurrence of breast cancer that had spread to her liver. The harm was avoidable. The loss was preventable. And the heartbreak is lifelong for those who loved her.
Stuart now shares Rachel's story so others can be empowered to advocate for themselves and their families: "Do not assume that clinicians will always 'join the dots' — sometimes it takes persistence and awareness from patients and families to push for the right investigations."
His campaign for Rachel's rule calls for annual hereditary risk reviews — simple yearly safety checks for anyone with repeated red-flag cancers or serious related health issues. It is a practical, achievable change that could save lives, spare families trauma, and strengthen the system for everyone.
Stuart's love for Rachel runs through every word he shares: "I was so proud to call Rachel my wife. She was devoted to me, to our family, and to everyone she cared for. She will be missed more deeply than words can ever express."
Click here to learn more about Rachel's rule and sign the petition calling for its implementation.
At AvMA, we are here for families like Rachel and Stuart’s – to offer clarity, compassion and practical guidance when care falls short, and to push for a system where no one is left to navigate avoidable harm alone.
This Christmas, your monthly gift can help ensure families have the expert advice and transparency they deserve when the unthinkable happens.
With just £7 a month, you can help fund AvMA’s helpline, giving more people access to the support they need during the most difficult moments of their lives.
