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Rachel’s Rule Campaign Milestones & Support
28/09/2025 Rachel’s Rule petition launched on Change.org
Implement Annual Hereditary Risks Reviews on the NHS
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A structured system to identify and join up hereditary cancer red flags
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Clear NHS responsibility for reviewing cumulative risk
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Annual Hereditary Risk Reviews (AHRR) for those with relevant history
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Earlier referral for genomic assessment where clinically indicated
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Implementation of Rachel’s Pathway – One Review. One Scan. One Plan.
11/10/2025 First 1000 signatures
14/10/2025 Patient Safety Learning share 1st Rachel Rule blog
How one woman’s missed referrals exposed a systemic gap in hereditary cancer care: Why I'm campaigning for Rachel's Rule
15/10/2025 Liverpool Echo shares tribute to Rachel
Teaching assistant 'people would gravitate to' dies
10/2025 Clinical governance perspective (LinkedIn discussion, 2025)
In response to the Patient Safety Learning blog on Rachel’s Rule, an NHS clinical governance professional highlighted the importance of:
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addressing systemic gaps
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improving care coordination between services
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strengthening accountability frameworks
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and ensuring investigations identify root causes rather than surface symptoms.
This reinforces the patient safety issues raised by Rachel’s case.
10/11/2025 2000 signatures
02/12/25
Department of Health Response (via MP)
The Department of Health and Social Care responded to concerns raised about hereditary cancer risk recognition. The reply referenced the NHS Genomic Medicine Service and the National Genomic Test Directory.
04/12/25 Public Parliamentary Question (UIN 97432)
In December 2025, a Public Parliamentary Question (UIN 97432) asked what support is provided to primary care in assessing hereditary cancer risk where there is no clear family history. The Government’s response outlined genomic services, the National Genomic Test Directory, and GP education resources. However, it did not define a mandated cumulative hereditary risk review process or identify a named accountable role for recognising hereditary risk patterns in the absence of family history.
07/12/25 Department of Health and Social Care – Direct Correspondence
In December 2025, the Department of Health and Social Care responded to correspondence regarding hereditary cancer prevention. The reply outlines expansion of genomic services, the National Genomic Test Directory, and development of a future Genomics Population Health Service. However, it does not clarify whether there is a named accountable owner for cumulative hereditary risk recognition, a defined review checkpoint when red flags accumulate, or a mandated model for coordinated post-diagnosis surveillance. The central question of structural ownership remains unresolved.
08/12/2025 First 3000 signatures
AvMA It Can Happen To Anyone Christmas 2025 Appeal
Rachel's story was included
14/01/2026 Healthwatch Sefton shares Rachel's Rule
Sefton Man calls for ‘Rachel’s Rule'
08/02/2026 Rachel's Rule: Signs in Plain Sight Memoir Launched
The memoir Rachel’s Rule: Signs in Plain Sight was published to document Rachel’s story in full — not only as a tribute, but as a detailed account of how cumulative red flags were recorded yet never structurally reviewed together.
16/02/26
Further Department of Health Response received (via MP)
The Department reiterated that hereditary cancer risk is managed through GP or specialist referral to clinical genetics services under the National Genomic Test Directory. The reply referenced Jess’s Rule, the NHS Genomic Medicine Service, and planned expansion of population health genomics.
05/03/26
Rachel’s Rule featured in the Health Service Journal
The Health Service Journal (HSJ) has published a commentary examining the hereditary cancer risk review gap highlighted through Rachel’s case and the Rachel’s Rule campaign. The article discusses the absence of clear operational ownership for reviewing cumulative hereditary risk and coordinating surveillance across NHS care.
06/03/2026 Rachel’s Rule Petition Passes 4,000 Signatures
More than 4,000 people have now signed the Rachel’s Rule petition — a growing call for the NHS to strengthen hereditary risk recognition and prevent missed opportunities for early intervention.
2026 Support from the Less Survivable Cancers Taskforce
Rachel’s Rule was recently supported by the Less Survivable Cancers Taskforce, which works with Parliament to improve outcomes. This highlights a major issue: patients with complicated cancer backgrounds are being missed because no one is officially responsible for tracking their hereditary risks. This milestone shows the urgent need for a more joined-up approach within the NHS to ensure that these warning signs are caught much earlier. Follow the taskforce on Bluesky: @lesssurvivable.bsky.social
26/03/2026 Patient Safety Learning: Hereditary Risk Requires Clear Ownership A second article published by Patient Safety Learning builds on earlier work, highlighting the lack of clear ownership for hereditary cancer risk within the NHS and the need for an accountable, system-wide approach.
14th April 2026 Government
The latest Department of Health response to Rachel’s Rule acknowledges the importance of clearer ownership, defined review triggers and coordinated surveillance where hereditary cancer indicators emerge across time and specialties. However, while the reply outlines long-term ambitions around genomics and digital integration, it does not define a current accountable mechanism for cumulative hereditary risk review, nor any interim safeguard while these reforms are being developed. This remains the central concern of Rachel’s Rule: patients do not present in policy timelines — they present in real time.
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