Jess’s Rule – a welcome reminder to reconsider persistent symptoms

The NHS has launched a new initiative called Jess’s Rule aimed at improving the diagnosis rate of General Practitioners. Jessica Brady tragically died when she was 27 years old after her cancer diagnosis was repeatedly missed, despite 20 visits to her GP in the five months prior to her death. Whilst arguably the NHS could have taken this initiative further, it nevertheless serves as an important reminder to GPs to reconsider diagnosis and treatment plans in the face of persistent and/or escalating symptoms, and of the potential consequences of failing to do so.

Jess’s story

This new initiative is the product of tireless campaigning by Jess’s mother, Andrea Brady. Andrea has spoken widely about what Jess went through in the months prior to her death, including in an interview with the BBC’s Nick Robinson – linked here (from 2:38:46) – that I would urge you to listen to.

Andrea describes how Jess had been a formerly fit, happy and healthy young woman. She began experiencing unusual symptoms in the summer of 2020. Her initial complaint was of abdominal pain. Her GP attributed this to a Urinary Tract Infection, a diagnosis which was reached over the telephone without Jess having any examinations or tests.

Over the following months, Jess’s symptoms worsened. She suffered with extreme fatigue, profound weight loss, a persistent cough and irritated throat, and a postnasal drip. She also had persistently enlarged lymph nodes.

Jess arranged appointments with her GP over and over again to try and find an explanation. She was repeatedly told that her symptoms were most likely due to COVID-19 despite Jess consistently testing negative for the virus. Despite the absence of a positive test, Jess’s GPs maintained that COVID was the probable explanation for her symptoms and that, with more time, she would get back to normal.

Unfortunately, Jess’s condition only deteriorated. Seemingly as a last resort, her family arranged for a private referral for her to be seen by a specialist. This referral led to Jess being admitted to hospital and receiving a diagnosis of stage 4 adenocarcinoma of an unknown primary (meaning that the cancer had become so widespread that Jess’s doctors could not identify where it originated from).

Jess received this diagnosis in early December 2020. She died on 20 December 2020. In the five months prior to her death, Jess had had 20 consultations with her GP who failed to refer her for specialist review.

What is Jess’s Rule?

The details of Jess’s Rule have been published by the NHS on its website.  The initiative asks GP teams to “Reflect, Review and Rethink” if a patient – like Jess – presents three times with the same or escalating symptoms. The guidance goes on to explain what is expected of GPs within this process:

“Reflect: Think back on what the patient has said and consider what has changed or been missed. Offer ongoing episodic continuity of care for future direct patient care. If previous consultations have been remote, see the patient face-to-face and conduct a physical examination.

Review: Where underlying uncertainty exists, consider seeking a view from a peer and review any red flags that may suggest another diagnosis, regardless of the patient’s age or demographic.

Rethink: If appropriate, refer onwards for further tests or for specialist input.”

Comment

It is important to note that this initiative does not introduce any new laws or strict professional requirements. The initiative represents only an attempt to spread the new guidance (above) amongst GPs. Moreover, it will not be accompanied by any additional training or formal materials for distribution amongst GPs. Some commentators have gone so far as to suggest this renders the initiative little more than political performance (see this Spectator piece “The Problem with Jess’ Rule”  (behind a paywall)).

Although I am not as critical of the initiative as the Spectator, I consider it should have been given more teeth. Even something as small as a new checklist for GPs to complete could help to ensure that the principles behind Jess’s Rule are actioned on a regular basis, and therefore not forgotten. Checklists might seem like bureaucratic chores, but they have the potential to save lives (see for example this research on the successes of the World Health Organisation’s Surgical Safety Checklist).

With that being said, Jess’s Rule is overall a welcome reminder to practitioners that treatment plans and/or diagnoses need to be reconsidered when patients present with persistent or escalating symptoms. As a clinical negligence practitioner, I regularly meet with clients who have suffered avoidable harm because of missed diagnoses. Often, upon reviewing a client’s medical records, it becomes clear that a correct diagnosis was missed multiple times because at each appointment the client’s care was looked at in isolation, rather than with proper consideration being given to their clinical history and how their symptomatology had developed over the days, weeks, months and years prior. It is therefore encouraging that Jess’s Rule puts an onus on GPs to consider what patients have previously said, and how things have changed since previous attendances. Hopefully this will enable GPs to form a more holistic understanding of a patient’s developing condition, and therefore to reach diagnoses with greater speed and accuracy.

It is of course too early to know what impact Jess’s Rule will have on clinical practice. We can only hope that it is adopted widely, and its principles never forgotten. Ultimately, even if only one life is saved by this initiative – and one family spared what the Bradys went through – it will have accomplished something enormous.