2 hours ago
10 
There was a crunch of gravel and then the snap of our letter box opening.
A small package landed on our door mat, the front inscribed with the neat cursive hand of my 26-year-old daughter, Jess.
The card inside featured a rainbow with the words ‘just to send you a little smile’. The carefully padded envelope also contained a brooch, made by Jess’ friend, to raise funds for our health service.
Jess was a fan of the NHS rainbows and all they represented during the Covid pandemic. A few months earlier, on her Instagram, she’d written, ‘Seeing all the rainbows in the windows for all the NHS workers, absolute heroes (words can’t do you justice).’
It was now summer June 2020. In six months, Jess would be dead.
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Writing that word ‘dead’ still feels preposterous. More accurately, the events that led to losing my kind and inspirational daughter, and the fallout of her no longer ‘being’, would better be described as cataclysmic.
I feel like my life has slipped out of focus. I no longer recognise myself, or the world I inhabit.
Jess became ill shortly after sending those rainbow gifts. I have recounted this story many times. It still doesn’t make sense. It is stuffed with imponderables, what-ifs, guilt and longing.
We all know the score; if you were ill when coronavirus hit our shores, you probably were not going to be treated in person. Online systems identified the severity of your complaint.
Initially, Jess experienced abdominal pain. A telephone call, not a urine test, determined she was suffering from a UTI infection. No examination, just a prescription of antibiotics.
But Jess did not get better. Her symptoms morphed and grew. Soon she was suffering from extreme fatigue and intermittent fevers. In the next few weeks she began speaking in a whispered voice, worried about further aggravating an irritated throat and persistent cough.
Of course, she was told it was Covid. Except it wasn’t. Covid tests emphatically disputed this.
And yet, the medics at her GP practice clung onto the notion that the virus holding entire continents hostage was the route of Jess’ problem.
She was suffering from long Covid. Of course she was. What else could it be? She was a young, previously fit and healthy, female.
As the days shortened and the temperature dropped, Jess experienced acute postnasal drip, vomiting, weight loss and the cough had now lasted five months.
The practitioners Jess encountered within our precious NHS, the NHS she so vehemently supported, assumed she was not seriously ill. This assumption proved fatal.
When Jess was finally diagnosed, after resorting to a private self-referral, she had stage 4 cancer of an unknown primary. Meaning, the cancer in her body was so rife and advanced no one was able to identify where the primary cancer originated.
My bright, aspirational daughter was admitted to hospital on the same day as her diagnosis.
Her oxygen requirements were such she could not leave her bed. She remained in a room with a vista of an adjacent high rise and, in late November and December, a sky washed slate grey.
Weeping medics did not conceal the brutal truth; there was no hope, she should not hope.
If there was a way of turning back time, I would. Believe me, I would defy all odds. I would, if I could. I would wrench protesting clock hands and yank them into a reality where my Jess lived.
Jess died three weeks after her diagnosis on December 20, 2020. Vibrant and vital, with a journal full of her aspirations. There is no way to describe the devastation. It is raw, visceral. The greatest fear of any parent is losing their child. We are their creators and protectors.
Jess died in the small dark hours of the morning while most people she knew gently slept. I wanted sirens to wail and rudely awaken everyone from their slumber. I wanted to claw out my traitorous, still beating heart.
However, I conformed to the expected norm and did not succumb to a guttural need to pull at my hair and crawl the floor. I watched a doctor examine Jess’ lifeless body.
Together with Jess’ boyfriend, we washed and dressed her. And then I said my last, excruciating goodbye. Against instinct, I left my daughter.
I had scribbled a note, beseeching anyone handling my precious girl to take care of her. From that moment on, I focused on functioning and attempting to live a life worthy of Jess.
Jess’ cancer had been sneaky. It had multiplied aggressively, consuming her perfect body, her spine, liver, stomach, lungs, bones, and lymph nodes. It had been sneaky, but it had been leaving vital clues.
The problem was, at Jess’ GP surgery, the doctors had made an incorrect, unsubstantiated diagnosis and had not deviated from that or looked for additional clues.
Jess contacted her GP surgery on 20 occasions. She knew her body and she knew that body was failing her.
Jess was fighting two battles; on the one hand coping with her debilitating symptoms and on the other persuading anyone to listen to her.
When blood tests flagged a raised D-dimer and poor liver function, the decision was to ‘wait and see’. Six weeks to wait and see.
I am sure those doctors did not anticipate that six weeks later we would be standing in a bitterly cold church yard, confronted with the impossible task of burying our daughter.
We’re told Jess was unlucky; it is rare to have cancer so young. My response?
Perhaps an appropriate retort to the ‘it’s rare’ argument is to say if the average life expectancy of a female in the UK is 83 years old then Jess missed 56 years of life.
When one considers that 9% of all cancers diagnosed fall in the 25 – 49 age bracket that is a considerable loss of potential and consequential heartache.
I’d say that is worth caring about.
Let’s stop calling cancer in young people rare and start calculating how many lost years. Let’s consider the devastation.
Now we come to the particularly gnarly concept that Jess was ‘unlucky’. Statistically speaking, one in two people will develop some form of cancer during their lifetime.
Yes, Jess had rogue cells, uncontrollably growing and dividing, but the biggest problem was no one considered for a moment this might be the case.
Jess was fit; she ran 5K. She didn’t smoke and rarely drank. She ate healthily. She wore sun screen and drank green tea, for goodness’ sake.
She was bright and articulate, a satellite engineer by profession. Jess was unlucky because she was the subject of ‘unconscious bias’. She was not a high risk for cancer and therefore no one looked for cancer.
The advice ‘when you hear hoof beats, think horses, not zebras’ (in other words when diagnosing a patient’s symptoms, common ailments should be considered as more probable than rare ones), came back to bite the GPs at Jess’ surgery in the proverbial backside.
In hospital, a rigid oxygen mask pulled tightly across her nose and mouth, obscuring most of her pale, fine features yet accentuating the watchfulness in her confused eyes. My lovely Jess was the model patient. Sweet natured, cooperative, uncomplaining.
However, she wanted her GP practice to understand the gravity of their mistakes. The significance of assuming there was nothing significantly wrong with her. If just one of the four doctors who dealt with Jess had taken a moment to think again and review her case afresh then possibly, she may have been the lucky one. Or at least she may have stood a chance. She deserved that.
To be told there is no hope, you will die, and soon, is the lowest of the low.
Like so many other parents, devastated by the death of their child, I would like to see positive change in Jess’ name. That’s why, for the last four years, I’ve campaigned for Jess’s Rule, which has amassed in excess of 465,000 signatures.
The proposal was simple: If, after three consultations, a patient’s condition remains unresolved, or the symptoms are escalating and/or they have no substantiated diagnosis, the patient’s case should be elevated for review and a new assessment made’.
‘Three strikes and we rethink’. Sound judgment, one would think?
Some may argue we have too many rules that a rule should not be necessary to ensure GPs do something that is common sense, something that should happen anyway.
Of course, that is right, if the correct systems are in place such regulation is irrelevant and unnecessary.
Jess’s Rule may appear to be stating the obvious, but our campaign demonstrates this is sadly not the case.
Countless accounts, shared with me, show clearly that GPs are not proactive in ‘thinking again’ when patients present with the same symptom or condition. Most commonly, I’ve heard that doctors do not deviate from their initial diagnosis, even when this is unsubstantiated.
The result of not feeling empowered to critically rethink a case is cancers are often diagnosed too late.
The horror of what happened to Jess and the incredible support for both the petition and our charity, Jessica Brady CEDAR Trust should spur action. And, I’m pleased to say, it has.
As of September 23, 2025, Jess’ Rule will be rolled out across the NHS in England. It means that, no matter your age or background, there is hope.
Hope that serious conditions can be caught earlier and comfort in knowing that GPs will now be supported by guidelines that bolster their clinical judgment, while also encouraging them to ‘reflect, review and rethink.
What is Jess's Rule?
The initiative, which comes into force September 23, 2025, will ask GPs to reflect and review a patient’s case if – after three appointments – they have been unable to offer a substantiated diagnosis or a patient’s symptoms have progressed
I’m thankful to the people who have listened and I would like to dedicate this initiative to all the young people who have been diagnosed too late. However, there is still work to do.
Jess was right, many NHS workers are heroes, but they are also human. Fallible humans.
There was a distinct absence of swishing capes and superpowers when Jess most needed them.
She was met with a plethora of platitudes and ‘I know best’ attitudes. We need to support our medical professionals to be curious, proactive and diagnose early and hopefully Jess’ Rule can do this.
This will stop other people experiencing the utter devastation of losing the people they love the most.
A version of this article was originally published May 21, 2024
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