Our son, Joe, was diagnosed with a brain tumour on December 24 2019. Just 10 days later, on January 3 2020, he passed away. His death certificate listed the cause as “complications due to a brainstem glioma.” Joe was only 26 years old and his sudden passing was a complete shock to his friends and family.
What we now know is that brain tumours are the biggest cancer killers of the under 40s and that 34 people a day are diagnosed with a brain tumour in the UK alone. So could Joe have been diagnosed earlier? Should he have been? And if he had been, would it have made a difference?
To answer these questions, let me share a little more about Joe’s journey.
Joe’s story
Joe first began feeling unwell in late September 2019, describing a vague sense of feeling “a bit odd.” Over the following weeks, he developed seemingly unrelated symptoms, starting with neck pain, then progressing to bowel and bladder issues. His GP didn’t consider these symptoms concerning.
By mid-November, Joe was experiencing difficulty swallowing. At first, this was mild, but it steadily worsened. His GP diagnosed acid reflux and prescribed medication. However, by early December, he was struggling to eat solid food. He was referred for an endoscopy, which came back negative for acid reflux.
Despite multiple visits to the GP, Joe was repeatedly given different medications for acid reflux, along with blood tests, but no clear diagnosis emerged.
On December 16 2019, I accompanied Joe to his GP appointment. By this point, he could barely eat and even drinking fluids was difficult. Yet, the GP remained convinced it was acid reflux and simply wanted to change his medication, despite the fact that Joe couldn’t even swallow the tablets.
Over the next 48 hours, Joe’s condition deteriorated further. His mobility declined and on December 18, when his speech began to slur, we took him to A&E in desperation.
A delayed diagnosis
At A&E, Joe was immediately placed on a drip due to severe dehydration. A CT scan revealed anomalies, prompting further investigation. He was transferred to the main hospital for an MRI scan. On Christmas Eve, we were shown the results: a mass in his brainstem and spine. Initially, we were told there was no immediate cause for alarm. However, due to holiday staffing shortages, no action was taken until December 29, when a neurosurgeon finally reviewed the scans and recognised the severity of Joe’s condition.
A full medical team was assembled and on New Year’s Eve, Joe underwent a six-hour operation to remove as much of the tumour as possible. By then, he’d been sedated and intubated due to increasing agitation, likely caused by both his deteriorating condition and the drugs he was on. Tragically, we never had the chance to speak with him again.
Although the surgeons initially believed the procedure had gone as well as possible, Joe never regained consciousness. The critical care team did everything they could, but on January 3 2020, we were told he wouldn’t recover. With our consent, further treatment was withdrawn and Joe passed away shortly after we said our final goodbyes.
The importance of early diagnosis
Losing a loved one is always difficult. But as parents, losing a child so suddenly and under such circumstances is devastating. It leaves you with many questions, of yourselves and of the medical profession. The first and foremost: Could – and should – Joe have been diagnosed earlier?
With the benefit of hindsight, our answer is a categorical yes.
After numerous visits to the GP without resolution, Joe should have been referred for a second opinion. A safety-netting approach, such as the one advocated by Jess’ Law and the Jessica Brady Cedar Trust, could have made a difference. We also believe better awareness and education in primary care, as well as the use of diagnostic decision-support tools and AI in patient record systems, should have been available to assist in identifying his condition sooner.
Would an earlier diagnosis have helped?
Again, we firmly believe the answer is yes.
Had Joe been referred for broader investigation, such as an MRI scan, based on his varied symptoms and the lack of a clear diagnosis, his cancer would have been detected earlier. That faster detection could have allowed more time for treatment, and potentially, a better outcome.
Brain tumours are notoriously difficult to treat, and the prognosis is often poor. This makes faster diagnosis even more critical. If found sooner, Joe could have had the opportunity to explore different treatment options, something he was never given the chance to do. Even the surgical intervention may have had a better outcome had it been performed earlier, before the tumour had progressed so aggressively.
More than just time for treatment
Beyond medical treatment, an earlier diagnosis would have given Joe, and us, something equally valuable: time.
Once he was admitted to the hospital, everything became a whirlwind, compounded by the challenges of a holiday staffing shortage. A few of Joe’s friends visited before Christmas, but within days, the medication and his worsening symptoms took their toll. He had no time to process what was happening, to see his friends and family properly, or to prepare for what lay ahead. While it may seem an old fashioned concept, we know Joe would have wanted to get his affairs in order and say his goodbyes.
And we, as his family, had no time to say our own goodbyes.
Joe’s diagnosis came so late that we had no opportunity to understand his illness, research treatment options, or even know exactly what kind of brain tumour he had until after his passing.
Richard Rawcliffe
Turning grief into action
One of the few comforts we found in the days following his death was hearing the outpouring of love from Joe’s friends and the stories they shared about what a kind and supportive friend he’d been.
As a family, we decided to take action to prevent others from experiencing what we went through. Our mission is to increase awareness of brain tumours and their symptoms so that earlier diagnosis can become a reality for more families and so that they and their loved ones have the chance for a better outcome than Joe and we, as his family, had.
We partnered with The Brain Tumour Charity, which enables Supporter Groups to raise funds and have a say in how they’re used. In Joe’s memory, we created Northern Joe’s Fund as a way to channel our love for him into meaningful action. To date, thanks to the incredible generosity of our family, friends, and colleagues, we have raised over £115,000.
Through various efforts, including personal physical challenges, an annual Northern Joe Cup squash tournament, and persuading larger events to adopt The Brain Tumour Charity and Northern Joe’s Fund as their charity partners we’re determined to make a difference.
A final request
If there is one thing I ask, it’s this: please take a few minutes to familiarise yourself with the common signs and symptoms of brain tumours. Early detection can make all the difference.
You can find more information here: Better Safe Than Tumour
Learn more about the causes we support:
Together, we can help make sure that more families get the time we didn’t.