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When Stuart Ball previously wrote for the hub, he described how his wife Rachel’s death was not the result of one single missed appointment or one incorrect clinical decision. It was the result of fragmentation—significant red flags recorded across time and across specialties, but never structurally reviewed together. Since then, Rachel’s case has been raised through a Parliamentary Question, Stuart has received written replies and there has been renewed discussion around the NHS 10 Year Health Plan. The Plan sets out a long-term ambition to move from reacting to illness towards predicting and preventing it. It speaks about digital integration, genomics and a single patient record. In this follow up blog, Stuart explains why this direction of travel is welcome, but how ambition and infrastructure are not the same as accountability. Stuart asks for an accountable model, with clear ownership, for cumulative hereditary risk review across time and specialties. "Rachel’s Rule: Protecting Today, For Tomorrow" In recent Parliamentary correspondence, it has been confirmed that hereditary cancer services are delivered through the Genomic Medicine Service, with referral based primarily on clinical and family history criteria, and with clinicians expected to maintain appropriate knowledge. The 10 Year Health Plan has been cited as the framework for longer term genomic expansion and reform. These responses clarify direction and capability. However, they do not clearly describe a mandated, accountable model for cumulative hereditary risk review across time and specialties. Rachel’s case was not a technology failure Rachel did not lack access to doctors. She did not lack access to records. She did not lack access to treatment. What she lacked was a defined point where someone was responsible for stepping back and asking: Does this pattern mean something more? She was diagnosed with ovarian cancer at a young age. Later, she developed a second primary ovarian cancer, and years later breast cancer. She had multiple liver hamartomas and ongoing clinical indicators recorded across different specialties. Each event was documented. None were structurally joined. There was no named owner for cumulative hereditary risk recognition. There was no mandated checkpoint requiring a review of the whole picture. And after diagnosis, there was no single, coordinated surveillance plan owned by one accountable role. This was not about individual clinicians failing. It was about system design. The 10 Year Plan: capability versus structure The NHS 10 Year Health Plan outlines important ambitions: Expansion of genomic capability. Better data integration. Personalised risk information. Digital coordination through shared records. These are enabling tools. But tools do not automatically create safety standards. A record is not a review. A risk score is not accountability. Current public responses confirm that hereditary cancer services operate through the Genomic Medicine Service, with referral based on clinical and family history criteria, and with clinicians responsible for maintaining knowledge. That describes capability and professional expectation. It does not clearly describe: A mandated longitudinal hereditary risk review checkpoint. A named accountable owner when cumulative red flags emerge. An automatic re-review trigger after second primary cancers. A defined operational standard for coordinated post-diagnosis surveillance. Without those elements, expanded genomics may still sit within a structurally fragmented system. The gap before diagnosis In Rachel’s case, hereditary risk was not recognised early enough. Importantly, she did not have a strong family history. Her risk lay in the pattern of events over time. If risk recognition depends heavily on family history or opportunistic identification, patients without obvious family clustering remain vulnerable. A structured, repeatable review process—triggered by defined criteria such as early cancer, second primaries, unusual pathology, or cross-specialty indicators—introduces a simple but powerful safeguard: Someone must pause. Someone must review the whole picture. Someone must document a decision. Ownership reduces diffusion of responsibility. The gap after diagnosis Diagnosis does not end the safety question. In many cases, it increases the need for coordination. In cancer, the consequences of missed hereditary risk often unfold over years. Surveillance can become fragmented across hospitals, clinics and appointment systems. Imaging may focus on one organ or site without stepping back to ask whether a broader, coordinated plan is required. Rachel received treatment and follow-up. At the time, we believed the cancer had been dealt with. Six years later, it returned and she died. Earlier recognition does not guarantee different outcomes in every case. But delay reduces available options. Fragmented surveillance compounds risk. That is why Rachel’s Pathway calls for: One named owner for surveillance coordination. One written, shared plan across services. Defined re-review points when new pathology emerges. Clarity about what surveillance is intended to detect, and what it is not. This is not about demanding universal scanning. It is about preventing predictable fragmentation. Why interim standards matter The 10 Year Plan is long term. Delivery will be phased. Large reforms are subject to operational pressures and parliamentary cycles. Meanwhile, patients continue to present. In safety critical systems, known vulnerabilities are usually mitigated while reform is being built—not left exposed until infrastructure is complete. An interim standard does not compete with the 10-Year Plan. It complements it. It introduces structural accountability now, while contributing to durable long-term design. The central question This ultimately comes down to one question: Who owns cumulative hereditary risk recognition and coordinated surveillance when patterns emerge across time and across specialties? If the answer is “all clinicians,” responsibility risks being diluted. If the answer is “no one specifically,” then the vulnerability remains. Clear ownership is not a technological issue. It is a patient safety issue. Rachel’s Rule is not a rejection of genomic ambition. It is a call to translate ambition into accountable structure: One owner. One review. One coordinated plan. That is how patterns stop being missed. That is how fragmentation is reduced. And that is how long-term ambition becomes real patient safety. Further information about the full proposals for Rachel’s Rule and Rachel’s Pathway can be found at rachelsrule.org. If you would like to support the campaign, please consider signing and sharing the petition at change.org/RachelsRule. Further reading on the hub: How one woman’s missed referrals exposed a systemic gap in hereditary cancer care: Why I'm campaigning for Rachel's Rule 10 Year Health Plan for England: fit for the future Rachel's Rule: Signs in plain sight by Stuart Ball Top picks: Rare diseases

When Stuart Ball's wife Rachel passed away in August 2025, she was just 47 years old. Her death was not inevitable. It was the result of years of missed opportunities—signs that were there in plain sight but never joined together. What happened to Rachel should never happen to another family. Stuart shares Rachel's story and tells us why he is campaigning for Rachel's Rule—a call for a system safeguard that ensures hereditary risks are not missed. "Rachel’s Rule: Protecting Today, For Tomorrow" From childhood, Rachel faced several health challenges, including asthma, massive urticaria and recurring skin lesions. In 2006, she was diagnosed with her first ovarian cancer. She was still young, and while her gynaecological care was appropriate for the time, there was no referral for genetic assessment. The key moment came in 2012, when a second ovarian cancer and multiple liver hamartomas were discovered—clear indicators of an inherited syndrome. This was the point at which a referral to clinical genetics should have been made and early identification could have changed the course of her care. By 2019, after more than a decade of fragmented treatment, Rachel was diagnosed with breast cancer. Only then was a referral finally made. Cowden Syndrome was confirmed. But by this stage, the damage was already done. Surveillance was started for some organs, but still not for others, including her liver—the very place her cancer would later return. In 2024, she developed advanced breast cancer recurrence with liver metastases. It was treatable, but not curable. Less than a year later, she was gone. A caring, proactive patient failed by a fragmented system Rachel did everything right. She attended every appointment, followed every piece of advice, and even chose preventative surgery to reduce her risk of further cancers. She trusted the system completely. But the system was not joined up. At every stage, she was seen by good people working within a structure that divided her symptoms into separate boxes—each specialist treating their own part, without anyone looking at the whole picture. The NHS has the expertise, the science and the technology to detect hereditary cancer risk early, but without an integrated approach, patients like Rachel fall through the gaps. Her death is not just a personal loss but a case study in systemic fragmentation—how information sits in silos, how guidelines are inconsistently applied and how, without oversight, warning signs can go unnoticed until it’s too late. From personal loss to systemic change In the months following her death, I channelled my grief into something constructive: a campaign called Rachel’s Rule: Protecting Today, For Tomorrow. Its aim is simple—introduce annual hereditary risk reviews for patients with multiple red-flag cancers or associated health issues. These reviews would act as a safety net within the NHS, ensuring that patterns like Rachel’s are recognised early. They would trigger automatic referrals to genetic services when warning signs appear, standardise practice across Trusts and raise public awareness so families know to ask for hereditary risk checks. Around one in ten cancers have a hereditary component. NICE guidelines exist, but application is inconsistent. The NHS Genomic Medicine Service provides world-class infrastructure, but patients can only benefit if they are referred in the first place. Rachel’s Rule would bridge that gap—turning awareness into action and preventing future tragedies. The human story behind the campaign Rachel wasn’t a statistic—she was a wife, sister, daughter and aunt, as well as a much-loved teaching assistant known for her warmth and humour. Even through years of treatment, she never lost her ability to lift others. At her school, Bishop Rawstorne, colleagues remember her laughter and empathy. At home, she made every season brighter: decorating for Christmas, photographing sunsets, planting marigolds in memory of her father. She found beauty in ordinary moments and shared it generously with others. To everyone who knew her, Rachel was the heartbeat of the room. Losing her has left a silence that can’t be filled—but in that silence there is also purpose. Her life now speaks through the campaign that bears her name. Learning from Rachel’s story Patient safety begins with pattern recognition. Just as Martha’s Rule was created to empower families to call for a second opinion, Rachel’s Rule calls for a system safeguard that ensures hereditary risks are not missed. It asks a simple question of our health system: when a patient has multiple serious illnesses or cancers under the age of 50, who is responsible for joining the dots? Rachel’s story exposes what happens when that responsibility is no one’s job. She represents thousands who may be living with undiagnosed hereditary syndromes—people who trust the system, attend every appointment, yet are never given the full picture. Protecting today, for tomorrow The legacy of Rachel’s life is more than memory — it’s momentum. Her campaign is supported by her local MP who continues to raise the issue nationally, and by a number of organisations that have already pledged their support. The Change.org petition is steadily growing, each new signature representing another voice calling for change, another family determined to prevent future harm. Earlier answers save lives. Genetic testing protects families. Structured hereditary risk reviews would turn hindsight into foresight, ensuring that what happened to Rachel will not happen again. You can read more and support the campaign at www.change.org/RachelsRule and download the campaign poster attached below. Rachel's Rule poster.pdf Because the best way to honour her story is to make sure it never needs repeating. Further reading on the hub: From ambition to accountability: why hereditary risk needs ownership now