From ambition to accountability: why hereditary risk needs ownership now

Summary

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"

Content

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

About the Author

Stuart Ball is the Founder of Rachel's Rule.