Rachel’s Rule: Catching Red Flag Cancer Patterns Earlier
Rachel’s Rule: Catching Red Flag Cancer Patterns Earlier
The Issue
Rachel’s Rule:
Catching Red Flag Cancer Patterns Earlier
My wife died because repeated cancer warning signs were never connected together.
This is still happening — and it doesn’t have to.
Many people with hidden genetic cancer risk do not have an obvious family history. Their warning signs appear gradually — across years, hospitals and specialties — until it is too late.
In fact, some serious hereditary cancer syndromes can arise without any known family history at all through what is known as a “de novo” genetic change — meaning the condition begins for the first time in that individual and may go completely unrecognised.
Most people think of the word “hereditary” as meaning strongly inherited through family history. In medical terms, however, hereditary or genetic cancer risk can still exist even where no obvious family pattern is recognised.
Recent Government responses point to future NHS reforms and long-term genomics plans. But patients do not present in policy timelines — they present in real time. Families at risk need protection now, not years from now.
1 in 10 cancers are linked to inherited or genetic risk, yet many people at risk are never identified or tested.
That is why Rachel’s Rule is calling for Annual Hereditary Risk Reviews on the NHS — structured reviews designed to identify red flag cancer patterns earlier, before opportunities are missed.
These reviews would help ensure patients presenting with warning signs such as:
-cancer at an unusually young age
-multiple primary cancers
-unusual clinical features
-or overlapping red flag patterns across specialties
are properly reviewed and referred for genetic assessment sooner.
Rachel was finally diagnosed with PTEN Hamartoma Tumour Syndrome (Cowden Syndrome) in 2019, after years of missed opportunities to recognise the pattern. By 2024, her breast cancer had returned and spread to her liver. She died aged 47.
Rachel’s Rule is not about blame. It is about prevention, protection and patient safety.
Because cancer warning signs should never depend on chance recognition.
Sign and share to help stop red flag cancer patterns being missed earlier — for patients, for families, and for the future.
https://questions-statements.parliament.uk/written-questions/detail/2025-12-04/97432
AvMA Action Against Medical Accidents have shared Rachel's story in their Christmas Campaign
https://fundraising.avma.org.uk/it-can-happen-to-anyone
Patient Association
I’m really pleased to share that the Patients Association has kindly featured Rachel’s Rule in their latest weekly newsletter — helping raise awareness of the petition among over 5,000 members nationwide.
Check out and follow the Rachel’s Rule Facebook page
www.facebook.com/RachelsRuleCampaign/
Patient Safety Learning are actively promoting this campaign:
FULL POLICY PROPOSAL: RACHEL'S RULE- ANNUAL HEREDITARY RISK REVIEWS (AHRR)
PHASE TWO - FULL POLICY PROPOSAL: RACHEL'S PATHWAY- ONE REVIEW. ONE SCAN. ONE PLAN. (OOO)
Thank you for supporting Rachel’s Rule. To understand how a unified approach to hereditary cancer surveillance can prevent missed recurrences and unnecessary procedures, read the full Phase 2 policy: One Review. One Scan. One Plan.
https://medium.com/@rachelsrule/rachels-pathway-3b6d04d36037
My memoir, Rachel’s Rule Signs in Plain Sight, is now available on Amazon. It tells Rachel’s story — the signs that were missed, the love we shared, and why I’m campaigning for Annual Hereditary Risk Reviews so this never happens to another family. Link below.
2023 April Vow Renewal, Port Erin beach, Isle of Man
4,358
The Issue
Rachel’s Rule:
Catching Red Flag Cancer Patterns Earlier
My wife died because repeated cancer warning signs were never connected together.
This is still happening — and it doesn’t have to.
Many people with hidden genetic cancer risk do not have an obvious family history. Their warning signs appear gradually — across years, hospitals and specialties — until it is too late.
In fact, some serious hereditary cancer syndromes can arise without any known family history at all through what is known as a “de novo” genetic change — meaning the condition begins for the first time in that individual and may go completely unrecognised.
Most people think of the word “hereditary” as meaning strongly inherited through family history. In medical terms, however, hereditary or genetic cancer risk can still exist even where no obvious family pattern is recognised.
Recent Government responses point to future NHS reforms and long-term genomics plans. But patients do not present in policy timelines — they present in real time. Families at risk need protection now, not years from now.
1 in 10 cancers are linked to inherited or genetic risk, yet many people at risk are never identified or tested.
That is why Rachel’s Rule is calling for Annual Hereditary Risk Reviews on the NHS — structured reviews designed to identify red flag cancer patterns earlier, before opportunities are missed.
These reviews would help ensure patients presenting with warning signs such as:
-cancer at an unusually young age
-multiple primary cancers
-unusual clinical features
-or overlapping red flag patterns across specialties
are properly reviewed and referred for genetic assessment sooner.
Rachel was finally diagnosed with PTEN Hamartoma Tumour Syndrome (Cowden Syndrome) in 2019, after years of missed opportunities to recognise the pattern. By 2024, her breast cancer had returned and spread to her liver. She died aged 47.
Rachel’s Rule is not about blame. It is about prevention, protection and patient safety.
Because cancer warning signs should never depend on chance recognition.
Sign and share to help stop red flag cancer patterns being missed earlier — for patients, for families, and for the future.
https://questions-statements.parliament.uk/written-questions/detail/2025-12-04/97432
AvMA Action Against Medical Accidents have shared Rachel's story in their Christmas Campaign
https://fundraising.avma.org.uk/it-can-happen-to-anyone
Patient Association
I’m really pleased to share that the Patients Association has kindly featured Rachel’s Rule in their latest weekly newsletter — helping raise awareness of the petition among over 5,000 members nationwide.
Check out and follow the Rachel’s Rule Facebook page
www.facebook.com/RachelsRuleCampaign/
Patient Safety Learning are actively promoting this campaign:
FULL POLICY PROPOSAL: RACHEL'S RULE- ANNUAL HEREDITARY RISK REVIEWS (AHRR)
PHASE TWO - FULL POLICY PROPOSAL: RACHEL'S PATHWAY- ONE REVIEW. ONE SCAN. ONE PLAN. (OOO)
Thank you for supporting Rachel’s Rule. To understand how a unified approach to hereditary cancer surveillance can prevent missed recurrences and unnecessary procedures, read the full Phase 2 policy: One Review. One Scan. One Plan.
https://medium.com/@rachelsrule/rachels-pathway-3b6d04d36037
My memoir, Rachel’s Rule Signs in Plain Sight, is now available on Amazon. It tells Rachel’s story — the signs that were missed, the love we shared, and why I’m campaigning for Annual Hereditary Risk Reviews so this never happens to another family. Link below.
2023 April Vow Renewal, Port Erin beach, Isle of Man
4,358
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Petition created on 28 September 2025