Over 1,000 people are diagnosed with a brain or CNS tumour in Scotland every year, and unfortunately of those who are diagnosed with a malignant brain tumour, more than half do not survive one year.
Early diagnosis remains a unique challenge for brain tumours, with estimates suggesting that up to 64% of patients are diagnosed via an Emergency Department.
Recent Public Health Scotland estimates also suggest there may have been nearly a 25% drop in diagnoses from January to Nov 2020, compared to the same period in 2019, as a result of the COVID-19 pandemic.
In addition, the pandemic has seen many patients face disruption to their care, including to clinics and appointments and treatments such as surgery or chemotherapy.
While the NHS took extensive steps to keep cancer services running, we heard that in most areas in Scotland, operations for those living with a low-grade brain tumour were delayed – however the scale of these impacts is not yet known.
Driving Progress Forward in Scotland: The Brain Tumour Charity’s Manifesto is calling for the next Scottish Government to:
- Ensure everyone diagnosed can access support from a Clinical Nurse Specialist or key worker, regardless of their tumour type or location in Scotland
- Drive earlier diagnosis by:
- committing to reducing the proportion of brain tumours diagnosed in A&E
- piloting a promising new blood test – developed by researchers at the University of Strathclyde and the University of Edinburgh – in primary care across Scotland as soon as possible, to explore its potential to triage those with possible symptoms
- Establish the extent of any emerging backlog of brain tumour surgeries and scans due to the pandemic, and set out a clear plan to ensure everyone affected by a brain tumour gets the diagnosis, treatment and support they need as soon as possible
- Accelerate access to real-world data for Scottish brain tumour patients, cancer researchers and charities, including through BRIAN, The Brain Tumour Charity’s patient-led app.
Heather Dearie from Prestwick said: “I am adding my voice to The Brain Tumour Charity’s call to drive earlier diagnosis because I am a poster child for the difference that earlier diagnosis would have made.
“I was misdiagnosed for 18 months before my tumour was finally discovered and by then it was too late for any alternative treatment to surgery, which caused facial paralysis, 50% deafness, balance and vision issues, fatigue, nerve damage, muscle spasms and because there is still some residual tumour, constant pain.
“Brain tumours are so much more complex than just causing a headache which is why it’s so important to me to raise awareness of symptoms so that future patients can be diagnosed quicker, treated quicker and then maybe have a more normal life with less long term side effects than I have.”
Alice Russell, Scotland Development Manager at The Brain Tumour Charity, said: “Brain tumours still kill more children and adults under 40 than any other cancer in the UK. Of those that do survive, quality of life for many is severely impaired and late effects are heart-breaking for far too many families.
“This urgently needs to change. After speaking to our community in Scotland, we've developed this manifesto to lay out the action the next Scottish Government needs to take to help deliver long-awaited progress towards a world where brain tumours are defeated.
“For everyone affected by a brain tumour, we urgently need the next Government to act to improve access to nurse specialists and key workers, drive earlier diagnosis, address any backlog in brain tumour surgeries and scans, and accelerate access to real-world data.”