Rachel's Rule
Annual Hereditary
Risk Reviews
on the NHS
Rachel’s Rule is a UK patient safety campaign calling for practical NHS pathways so people with clear hereditary cancer red flags, and related hereditary indicators, are reviewed regularly. The aim is simple: earlier recognition, clearer accountability, and better coordinated follow-up so families are supported and lives are protected.
THE MISSION OF RACHEL’S RULE
Rachel’s Rule is a patient-safety campaign created to strengthen how hereditary cancer risk is recognised and followed up across the NHS.
It focuses on identifying and joining up “red flags” — patterns in clinical history, related medical indicators, and family history where present — that can signal an underlying hereditary condition even when there is no known family history.
The mission is to turn those signals into practical action through clear policy proposals, consistent review, and appropriate surveillance.
Rachel’s Rule calls for:
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Annual Hereditary Risk Reviews — ensuring high-risk individuals are not assessed once and then lost to time
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Rachel’s Pathway: One Review. One Scan. One Plan. — a joined-up approach that connects review to imaging, testing, and follow-up where clinically justified
Rachel’s own case shows why this matters: the signs were there, but they were not connected in time.
I believe families deserve clarity, clinicians deserve better systems, and earlier recognition can save lives.
Bradda Head, Isle of Man — one of Rachel’s favourite places
Advocate for Systemic Change
Rachel’s Rule is more than a policy — it’s a call to turn hereditary risk signals into earlier action. Explore the resources and proposals designed to support families, clinicians and decision-makers, and to strengthen joined-up care across the NHS.
How Rachel’s Rule aligns with the NHS 10-Year Plan — and the gap that remains
What the NHS is proposing
In Fit for the Future: The 10-Year Health Plan for England (July 2025), the NHS sets out a long-term ambition to shift healthcare from reacting to illness to predicting and preventing it earlier. This includes:
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a Single Patient Record, accessible via the NHS App
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personalised health risk scores, drawing from genomic, demographic and lifestyle data
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a future genomic population health service to support predictive and preventative care
This is an important direction of travel.
Where the gap remains
A single patient record — and even a personalised risk score — does not automatically create:
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a routine review
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a named responsible person
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clear triggers
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or a guaranteed clinical pathway into action
Rachel’s Rule exists to fill that gap.
Side-by-side: NHS 10-Year Plan vs Rachel’s Rule
NHS 10-Year Plan vs Rachel’s Rule
Data Focus
NHS 10-Year Plan (Fit for the Future)
Prevention and prediction through integrated records and risk scoring.
Rachel’s Rule (Annual Hereditary Risk Reviews)
A patient safety standard designed to stop hereditary risk being missed.
Record
NHS 10-Year Plan
Genomic, demographic and lifestyle data used to support risk scores.
Rachel’s Rule
Uses the full clinical picture: history patterns, red flags, risk factors, and genetics when known.
Ownership
NHS 10-Year Plan
Not yet defined as a named responsibility for hereditary risk review.
Rachel’s Rule
Requires a named accountable role so risk does not fall between services.
Review Frequency
NHS 10-Year Plan
Not specified.
Rachel’s Rule
Structured, repeatable review (annual or defined intervals).
Triggers
NHS 10-Year Plan
Not yet defined in operational detail.
Rachel’s Rule
Clear triggers based on clinical history and red flags — not family history alone.
Clinical Action
NHS 10-Year Plan
Prevention advice and future service models.
Rachel’s Rule
A review must trigger action: escalation, referral, surveillance decisions and follow-up.
Feature
Data Focus
Record
Ownership
Review
Frequency
Triggers
Clinical Action
NHS 10-Year Plan (Fit for the Future)
Prevention + prediction through integrated records and risk scoring
Genomic + demographic + lifestyle data to support risk scores
Not yet defined as a named responsibility for hereditary risk review
Not specified
Not yet defined in operational detail
Prevention advice and future service models
Rachel’s Rule (Annual Hereditary Risk Reviews
A patient safety standard to stop hereditary risk being missed
Uses the full picture: clinical history patterns + red flags + risk factors + genetics when known
Requires a named accountable role so risk does not fall between services
A structured, repeatable review (annual or defined intervals)
Clear triggers based on clinical history and red flags, not family history alone
A review must trigger action: escalation, referral, surveillance decisions, and follow-up
Why time matters
Even if long-term ambitions are delivered, they take years to implement consistently across services. And in cancer, the consequences of missed hereditary risk are often delayed — unfolding over years through fragmented follow-up, missed opportunities, recurrence, and avoidable harm.
Rachel’s experience shows how someone can be diagnosed, treated, and still face devastating outcomes years later when hereditary risk and its implications were not properly recognised and owned early enough.
What is being asked for now (an interim minimum standard)
Alongside the NHS’s long-term ambitions, Rachel’s Rule calls for an interim minimum safety standard that can be implemented now, using information already held in NHS records:
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A named accountable role for hereditary risk review
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A standardised review process that uses clinical history and red flags, not family history alone
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Clear triggers for escalation and referral
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A short-term implementation timeframe, so patients are protected now, not only in the 2030s
Full policy proposals
A comprehensive full Rachel’s Rule policy proposal is available to read in the Proposal & Policy section of this website.
How you can help
If you support the principle that hereditary risk should not be missed through fragmented care, please sign the petition and share Rachel’s story.
READ MORE: Why Rachel’s Pathway (Interim) is needed after risk is identified
The Book Behind Rachel’s Rule
Rachel’s Rule: Signs in Plain Sight tells the story behind the campaign. After Rachel’s diagnosis with PTEN Hamartoma Syndrome (Cowden syndrome), difficult questions emerged about how hereditary cancer risk is recognised and coordinated within the NHS.
Part memoir, part patient-safety reflection, the book traces the origins of the call for Annual Hereditary Risk Reviews — and the determination to ensure warning signs are no longer missed.