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(Post-Diagnosis / Post-Risk Identification)

Rachel’s Pathway (Interim)

Preventing fragmented surveillance after diagnosis

The missing part of the conversation

The NHS 10-Year Plan sets out an important ambition: to integrate data and improve prevention through a single patient record, risk profiling, and predictive care.

But hereditary risk is not only about identification.

Even when a person is diagnosed with cancer, or later found to have a hereditary risk condition, outcomes can still be harmed by fragmented surveillance, unclear responsibility, and disjointed follow-up across hospitals and specialties.

This is where Rachel’s Pathway sits.

What Rachel’s Pathway addresses

Rachel’s Pathway focuses on what happens after:

  • a cancer diagnosis

  • a high-risk clinical picture

  • or a confirmed hereditary risk finding

It is designed to ensure that the patient receives coordinated, consistent surveillance and follow-up, rather than care being split across multiple services with no single overview.

Focus

NHS 10-Year Plan (Fit for the Future)
Long-term prevention and risk prediction.


Rachel’s Pathway
Immediate safety and coordination once risk is known.


Record

NHS 10-Year Plan
Single Patient Record to support joined-up care.


Rachel’s Pathway
A record alone does not coordinate appointments, surveillance, or accountability.


Ownership

NHS 10-Year Plan
Does not specify who owns surveillance coordination for hereditary risk patients.


Rachel’s Pathway
Requires a named coordinator / accountable role to ensure follow-up is not fragmented.


Surveillance

NHS 10-Year Plan
No defined national surveillance coordination model described.


Rachel’s Pathway
Structured follow-up plan agreed across specialties.
 

Cross-Hospital Care

NHS 10-Year Plan
Not addressed in operational detail.


Rachel’s Pathway
Designed specifically to prevent gaps when care spans multiple trusts or services.
 

Timelines

NHS 10-Year Plan
Long-term ambition (years).
 

Rachel’s Pathway
Practical and implementable now using existing pathways.
 

Patient Experience

NHS 10-Year Plan
More access to records and risk information.
 

Rachel’s Pathway
A coordinated plan so patients are not left navigating complex systems alone.

Side-by-side: NHS 10-Year Plan vs Rachel’s Pathway

Focus

NHS 10-Year Plan: Long-term prevention and risk prediction

Rachel’s Pathway: Immediate safety and coordination once risk is known


Record

NHS 10-Year Plan: Single Patient Record to support joined-up care

Rachel’s Pathway: A record alone does not coordinate surveillance or accountability


Ownership

NHS 10-Year Plan: No named model specified for long-term coordination

Rachel’s Pathway: Requires a named coordinator or accountable role
 

Surveillance model
NHS 10-Year Plan: Operational surveillance model not specified

Rachel’s Pathway: Structured surveillance plan agreed across services


Cross-hospital care

NHS 10-Year Plan: Cross-trust coordination not described in operational detail

Rachel’s Pathway: Designed to prevent gaps when care spans multiple trusts


Timelines

NHS 10-Year Plan: Long-term ambition over several years

Rachel’s Pathway: Implementable now using existing pathways
 

Patient experience

NHS 10-Year Plan: Greater access to records and risk information

Rachel’s Pathway: A single coordinated plan so patients are not left navigating complex systems alone

Feature

Focus

Record

Ownership

Surveillance

Cross-hospital care

Timelines

Patient experience

NHS 10-Year Plan (Fit for the Future)

Long-term prevention and risk prediction

Single Patient Record to support joined-up care

Does not specify who owns surveillance coordination for hereditary risk patients

No defined national surveillance coordination model described

Not addressed in operational detail

Long-term ambition (years)

More access to records and risk information

Rachel’s Pathway (post-diagnosis / post-risk identification)

Immediate safety and coordination once risk is known

A record alone doesn’t coordinate appointments, surveillance, or accountability

Requires a named coordinator / accountable role to ensure follow-up is not fragmented

Structured follow-up plan, agreed across specialties

Designed specifically to prevent gaps when care spans multiple trusts/services

Practical and implementable now using existing pathways

A coordinated plan so patients aren’t left navigating complex systems alone

Why this matters: Rachel’s experience

Rachel’s case shows why identification alone is not enough.

Rachel was diagnosed with breast cancer and received treatment. At the time, it was believed the cancer had been dealt with. However, the cancer later returned and she died six years after her original diagnosis.

In the years between, care and surveillance can become fragmented across hospitals, services, and appointments — especially when hereditary risk is not clearly owned by one accountable pathway.

Rachel’s Pathway exists because patients should not be left in a system where the burden of coordination falls on them — or where each service assumes another service is responsible.

The urgent point

Even if the NHS successfully delivers long-term ambitions by 2035, this will not automatically prevent harm for patients who:

  • are diagnosed during the next decade

  • have complex clinical histories

  • move between services

  • or require long-term surveillance and coordinated follow-up

That is why interim safety standards are needed now — both before diagnosis (Rachel’s Rule) and after diagnosis (Rachel’s Pathway).

What is being asked for

Rachel’s Rule and Rachel’s Pathway together call for two practical interim safety standards:

1) Before diagnosis

A minimum, accountable process for hereditary risk recognition using clinical history and red flags — not family history alone.

2) After diagnosis / after risk identification

A minimum standard for coordinated surveillance and follow-up, with a named responsible role to prevent fragmentation across services.

Full policy proposals

A comprehensive full Rachel’s Pathway policy proposal is available to read in the Proposal & Policy section of this website.

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