Late diagnosis is common for people diagnosed with a brain tumour and in 2013 53% of high grade brain tumours were diagnosed as an emergency. According to the NCIN. Routes to Diagnosis 2006-2013 workbook, this was more than any other cancer.
To improve the experience of diagnosis and survival Cancer Research UK and partners will undertake a National Cancer Diagnosis Audit (NCDA) to better understand the journey to diagnosis.
A failure to diagnose early can have a significant impact on an individual’s experience and prognosis. Misdiagnosis and the recurrence of unexplained symptoms can cause added stress and uncertainty and survival for patients diagnosed with a high grade brain tumour through emergency presentation is significantly worse than for patients presenting through all other routes.
Only 28% of people diagnosed through this route are still alive one year following diagnosis, compared to 38% diagnosed through an urgent “two week wait” GP referral.
The NCDA analysts will combine primary (General Practice) and secondary (cancer registry) care data to analyse patterns of cancer diagnosis for people diagnosed in the UK in 2014. The study will look primarily at the length of time from presentation of symptoms to diagnosis and what use is made of investigations prior to referral.
This is an opportunity to learn from each person diagnosed with a brain tumour in this period. The audit will highlight diagnostic challenges and potential solutions. For example, our Finding Myself in Your Hands report showed that women are more likely than men to have made more than five visits to a doctor prior to diagnosis of a brain tumour.
The audit may also help us better understand why this is. Analysis of the audit data can also help highlight good practice, enable GP’s practices to understand their own trends in referral’s and identify cases to learn from where individuals have been diagnosed in emergency presentation.
We will continue to campaign for early diagnosis for everyone with a brain tumour. We have a number of recommendations for politicians and health bodies across the UK that could improve diagnosis for people affected by a brain tumour.
These include direct access for GPs to MRI scans, raising awareness of the signs and symptoms of paediatric brain tumours by ensuring our HeadSmart cards are distributed in schools, and committing to early diagnosis campaigns based on our HeadSmart campaign.
We are also funding research into adult diagnostic pathways with a view to developing a similar awareness campaign in adults.