Rachel’s Rule: Make the NHS check hereditary cancer risk
Rachel’s Rule: Make the NHS check hereditary cancer risk
The Issue
My wife died because no-one checked her hereditary cancer risk.
This is still happening — and it doesn’t have to.
Sign now — and help stop this happening to others.
1 in 10 cancers are hereditary.
Up to half of people at risk are never identified or tested.
That’s not chance — it’s a failure in care.
We are calling for Annual Hereditary Risk Reviews in the NHS — so no one is missed.
Rachel’s Rule: Protecting Today, For Tomorrow
I lost my wife, Rachel, to a tragedy that did not have to happen.
For more than 20 years, she faced multiple primary cancers — each one a red flag. Yet the NHS missed repeated chances to refer her for genetic assessment.
In 2019, she was finally tested. The results confirmed what the system had failed to recognise:
PTEN Hamartoma Tumour Syndrome (Cowden Syndrome).
Had she been referred earlier, routine surveillance may have detected or prevented later cancers.
By 2024, her breast cancer had returned and spread to her liver. Treatable — not curable.
Rachel was 47. She was my wife. My best friend. My entire world.
And she was taken from me when inherited risk was confirmed too late to change the outcome.
Referrals missed. Opportunities lost. Lives changed forever.
Earlier detection works. Late detection devastates.
The change I'm urgently calling for
Annual Hereditary Risk Reviews on the NHS — a standardised trigger point for patients who present with:
🔹 A single cancer diagnosed at an unusually young age
🔹 A cancer accompanied by significant clinical features linked to hereditary conditions
🔹 Multiple primary cancers over time
🔹 A pattern of red-flag health issues that, taken together, raise concern for inherited risk — even without family history
This would enable:
Earlier referral for genetic assessment and testing
Faster access to surveillance, screening, and personalised care
Fewer missed chances, fewer avoidable losses
What the evidence tells us-
Major studies show early identification of inherited cancer risk can reduce cancer incidence in high-risk groups by 30% or more
UK cancer research bodies warn that current NHS testing rules miss around half of harmful variant carriers
Relying on family history alone means many at-risk patients remain unidentified until cancer is advanced
Rachel’s story is no longer isolated.
AvMA and Patient Safety Learning — two of the UK’s strongest patient-safety advocates — are now sharing her case nationally to highlight the urgent need for earlier hereditary risk oversight.
This can no longer be ignored
Local political momentum is already building, including a public pledge of support from Rachel’s MP. Now I’m asking for your voice too.
This isn’t a campaign rooted in blame — it’s a campaign rooted in prevention, protection, and patient safety.
No family should ever have to hear: We found it. But we found it too late.
Your signature won’t just honour one story — it could help protect countless families from preventable heartbreak.
Earlier intervention saves lives.
But lives protected today means futures protected tomorrow.
Sign and share — for Rachel. For families. For change.
Once signed, please check out the support below -
Latest Parliamentary update:
Rachel’s case has now been raised formally in Parliament through a Written Parliamentary Question asking how primary care is supported in identifying hereditary cancer risk in patients without a clear family history.
The Government response outlines existing genomic testing infrastructure but does not set out a clear national system for detecting patients like Rachel earlier. While it places emphasis on individual clinicians maintaining their own knowledge, it does not describe a structured detection pathway to support them, reinforcing the system-level gap this campaign seeks to address.
The exchange is now on the public parliamentary record.
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
Stunning Bradda Head, Port Erin, Isle of Man sunset
Port Erin beach, with stunning cloud formation
Barry Island, promenade. She loved colour.
She loved taking pictures, she knew how precious life was, capturing every second of it.
4,124
The Issue
My wife died because no-one checked her hereditary cancer risk.
This is still happening — and it doesn’t have to.
Sign now — and help stop this happening to others.
1 in 10 cancers are hereditary.
Up to half of people at risk are never identified or tested.
That’s not chance — it’s a failure in care.
We are calling for Annual Hereditary Risk Reviews in the NHS — so no one is missed.
Rachel’s Rule: Protecting Today, For Tomorrow
I lost my wife, Rachel, to a tragedy that did not have to happen.
For more than 20 years, she faced multiple primary cancers — each one a red flag. Yet the NHS missed repeated chances to refer her for genetic assessment.
In 2019, she was finally tested. The results confirmed what the system had failed to recognise:
PTEN Hamartoma Tumour Syndrome (Cowden Syndrome).
Had she been referred earlier, routine surveillance may have detected or prevented later cancers.
By 2024, her breast cancer had returned and spread to her liver. Treatable — not curable.
Rachel was 47. She was my wife. My best friend. My entire world.
And she was taken from me when inherited risk was confirmed too late to change the outcome.
Referrals missed. Opportunities lost. Lives changed forever.
Earlier detection works. Late detection devastates.
The change I'm urgently calling for
Annual Hereditary Risk Reviews on the NHS — a standardised trigger point for patients who present with:
🔹 A single cancer diagnosed at an unusually young age
🔹 A cancer accompanied by significant clinical features linked to hereditary conditions
🔹 Multiple primary cancers over time
🔹 A pattern of red-flag health issues that, taken together, raise concern for inherited risk — even without family history
This would enable:
Earlier referral for genetic assessment and testing
Faster access to surveillance, screening, and personalised care
Fewer missed chances, fewer avoidable losses
What the evidence tells us-
Major studies show early identification of inherited cancer risk can reduce cancer incidence in high-risk groups by 30% or more
UK cancer research bodies warn that current NHS testing rules miss around half of harmful variant carriers
Relying on family history alone means many at-risk patients remain unidentified until cancer is advanced
Rachel’s story is no longer isolated.
AvMA and Patient Safety Learning — two of the UK’s strongest patient-safety advocates — are now sharing her case nationally to highlight the urgent need for earlier hereditary risk oversight.
This can no longer be ignored
Local political momentum is already building, including a public pledge of support from Rachel’s MP. Now I’m asking for your voice too.
This isn’t a campaign rooted in blame — it’s a campaign rooted in prevention, protection, and patient safety.
No family should ever have to hear: We found it. But we found it too late.
Your signature won’t just honour one story — it could help protect countless families from preventable heartbreak.
Earlier intervention saves lives.
But lives protected today means futures protected tomorrow.
Sign and share — for Rachel. For families. For change.
Once signed, please check out the support below -
Latest Parliamentary update:
Rachel’s case has now been raised formally in Parliament through a Written Parliamentary Question asking how primary care is supported in identifying hereditary cancer risk in patients without a clear family history.
The Government response outlines existing genomic testing infrastructure but does not set out a clear national system for detecting patients like Rachel earlier. While it places emphasis on individual clinicians maintaining their own knowledge, it does not describe a structured detection pathway to support them, reinforcing the system-level gap this campaign seeks to address.
The exchange is now on the public parliamentary record.
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
Stunning Bradda Head, Port Erin, Isle of Man sunset
Port Erin beach, with stunning cloud formation
Barry Island, promenade. She loved colour.
She loved taking pictures, she knew how precious life was, capturing every second of it.
4,124
Supporter Voices
Petition created on 28 September 2025