A patient with incurable cancer is campaigning for improved access to specialist care and support for brain tumour patients in Jersey.
A petition on the States Assembly website by Sophie Reid, the founder of Jersey’s Brain Tumour Support Group has already garnered over 340 signatures.
It aims to address critical gaps in neuro-oncology services in Jersey, highlighting the absence of specialist care, delays in diagnostic scans, and insufficient support structures.
Mrs Reid is calling for Jersey to align its care standards with the National Institute for Health and Care Excellence (NICE) guidelines to ensure fair and effective cancer treatment across the island.
Upon reaching 1,000 signatures, Ministers are compelled to respond. Reaching 5,000 signatures will prompt consideration for a debate in the States Assembly
Earlier this year, Mrs Reid formed a Brain Tumour support group for islanders affected by the condition.
Express spoke with Mrs Reid about her diagnosis with incurable brain cancer — and how that experience has driven her to advocate for better care and support other islanders affected by the disease.
Can you share what inspired you to launch this petition? Was it based on personal experience only or from observations within the Jersey medical system as well?
The petition came from a mix of my own personal experience and what I’ve seen happening to others. Last year I had a seizure which led to the discovery of my brain tumour, and since then I’ve had to navigate a really difficult and confusing care pathway in Jersey. There were long delays, poor communication, and at times I felt completely unsupported especially with no specialist nurse here to guide me through what is a life-changing diagnosis.
It quickly became clear that my story wasn’t unique. Speaking to others, I realised many people with brain tumours and neurological conditions in Jersey are going through the same struggles: delayed scans, lack of access to specialist neuro-oncology care, and limited emotional and practical support.
So while my own diagnosis opened my eyes to the gaps in our system, this petition is about more than me. It’s about making sure everyone in Jersey who faces something as serious as a brain tumour gets timely scans, proper specialist input, and the support they and their families deserve.
What specific shortcomings in Jersey’s brain tumour care system concern you the most?
The biggest shortcomings are the lack of timely access and the absence of specialist support. In Jersey, if you’re suspected of having a brain tumour, scans and appointments can be delayed for weeks or even months. For a condition where every day matters, that’s frightening.
How have you been directly affected by the gaps in brain tumour care in Jersey and can you share a bit about your experience?
I was first diagnosed after suffering a seizure last September. From that moment, my life changed completely but the support I expected just wasn’t there. I faced long waits for scans and follow-up appointments, with no clear communication about what was happening or what the plan was. That uncertainty caused enormous stress for me and my family.
One of the hardest things was the lack of a dedicated brain tumour nurse or specialist in Jersey. When you’re told you have a brain tumour, you have hundreds of questions and fears, yet there was no one to turn to locally who understood the condition in detail. I often felt left in the dark, piecing things together myself, or relying on my oncologist appointments in Southampton for clarity.
It’s also impacted my day-to-day life. I’ve had to stop work for almost a year, adapt to living with seizures, fatigue and side effects from treatment, while also being a mum to two young daughters and having a business. Having to battle the system for information and support has made an already overwhelming situation even harder.
My experience isn’t unique. I know others here who have faced the same delays, confusion, and lack of guidance. That’s why I feel so strongly that things have to change.
How could regular clinical audits enhance care for brain tumour patients in Jersey?
Regular clinical audits would make a huge difference because they shine a light on what is really happening in patient care. At the moment, there’s no clear accountability or measurement of how quickly patients in Jersey are being scanned, diagnosed, or referred to specialists. Without that data, delays and gaps can be hidden.
Audits would track key things like waiting times for MRI scans, time from referral to diagnosis, access to a specialist, and patient outcomes. If the results show that Jersey is falling behind UK standards, it would be clear where improvements are needed.
Most importantly, audits would give patients and families confidence that the system is being monitored and held to account. For something as life-threatening as a brain tumour, patients shouldn’t have to rely on personal stories or luck to highlight problems, there should be a built-in process to ensure care is safe, timely and up to national guidelines.
That’s why one of the key things I’m calling for in my petition is the introduction of routine audits, so we can make sure brain tumour patients in Jersey aren’t left behind.
Could you explain the role a CNS (clinical nurse specialist) plays, and why having one is crucial for brain tumour patients?
A Clinical Nurse Specialist (CNS) is often described as a lifeline for brain tumour patients. They act as a single, consistent point of contact. Someone who understands both the medical side of the disease and the emotional impact it has on patients and their families.
A CNS explains the diagnosis and treatment options in plain language, helps coordinate care between different doctors and hospitals, and is there to answer questions when you’re feeling lost or overwhelmed. They also provide vital emotional support, helping patients and families cope with the shock and uncertainty of a brain tumour diagnosis.
In the UK, having a CNS is considered standard best practice, and patients consistently say that they are one of the most valuable parts of their care. In Jersey, we don’t have a dedicated brain tumour CNS, which leaves patients like me without that guidance and reassurance. If I had access to a CNS, I wouldn’t have felt so alone in those early weeks after my diagnosis. That gap makes an already frightening journey even harder, and it’s one of the key changes I’m campaigning for through my petition.
What challenges have you encountered in raising awareness about this issue?
One of the biggest challenges has been getting people to realise that this is a real problem here in Jersey, not just somewhere else. Brain tumours are less common than other cancers, so there’s a lack of awareness about how serious they are and how much support patients actually need.
The data makes it very clear. According to the Channel Islands Cancer Report (2007–2020), Jersey has an age-standardised incidence rate of 11.5 cases per 100,000 people, compared to 8.9 in England. Mortality is even more alarming: Jersey records 10.1 deaths per 100,000, while in England it’s 7.1. Statistically, that means if you are diagnosed with a brain tumour in Jersey, you are around a third more likely to die than if you were diagnosed in the UK.
The report also shows a worrying trend — in the first reporting period (2007–2009) there were 11 deaths from brain tumours in Jersey, but by 2018–2020 that had risen to 29 deaths. Despite this increase, services here have not been improved in line with the growing need.
It can also feel daunting as a patient to speak out. I’m still going through treatment myself, and sharing such a personal experience isn’t easy. But I know that if people like me stay silent, nothing will change. Without proper investment in brain tumour services, these statistics will only get worse.
The positive side is that once people do hear about this, they’re usually shocked and very supportive. It’s just about breaking through that initial lack of awareness.
What has the response been like from medical and Government officials since launching the petition?
The public have been incredibly supportive, sharing their own stories and backing the petition, but so far the silence from officials has been deafening. With statistics showing patients here are more likely to die from a brain tumour than in England, we need action, not avoidance.
How will the petition’s milestones (1,000 and 5,000 signatures) help advance the cause? And what are your reasons for urging people to sign?
Every signature is powerful because it shows this isn’t just my story, it’s a community demanding better care. Reaching 1,000 signatures demonstrates that this issue matters to a significant number of Islanders, and it gives weight when presenting the petition to Health and government officials. Hitting 5,000 signatures would be a game-changer: it would make it impossible for decision-makers to dismiss this as a niche concern. It would show overwhelming public backing for urgent improvements in brain tumour services.
My reason for urging people to sign is simple — brain tumours don’t just affect the person diagnosed, they affect families, children, and entire communities. The Channel Islands Cancer Report shows patients here are more likely to die from a brain tumour than in England. That should be a wake-up call for everyone. By signing, people are helping to demand faster diagnoses, proper specialist support, and a fair chance of survival for Jersey patients. It’s about giving people hope, now and in the future.
If the Government responds or acts on this petition, what changes would you consider a success for patients in Jersey?
For me, success would mean seeing real, practical changes that directly improve patient care. At the top of the list is appointing a dedicated Clinical Nurse Specialist for brain tumour patients in Jersey, someone who can provide expert guidance, emotional support, and continuity of care.
I’d also consider it a success if we had guaranteed access to timely MRI scans and clear referral pathways so patients aren’t left waiting in limbo for weeks or months. Alongside this, regular clinical audits are crucial to measure waiting times, outcomes, and whether Jersey is meeting UK standards, without that accountability, the same problems will keep happening.
