Urgent brain tumour scans, education for the public and health professionals.

At only 16, my daughter, Lucy Goulding tragically lost her life. Lucy died through lack of knowledge of brain tumours among health professionals and also myself. Lucy died due to an undiagnosed raised intracranial pressure (accumulation of fluid in the brain) due to the most benign brain tumour.

Although being a rare cancer, the mortality rate due to brain tumours has increased over the past 13 years and kills more children than leukaemia or any other cancer. There is frequently reluctance among healthcare professionals to undertake a scan of children who may have a brain tumour until clinical signs become apparent – one of the reasons being that the initial symptoms of a brain tumour frequently mimic those that occur with many common childhood conditions. So referral time is critical.

We were really sorry to hear about Lucy’s death from a brain tumour.

Improving early diagnosis of cancer is a priority for this Government, and was highlighted as a strategic priority in the report Achieving World-Class Cancer Outcomes published last year by the Independent Cancer Taskforce. Earlier diagnosis makes it more likely that patients will receive effective treatments and the strategy noted specifically that more could be done to improve earlier diagnosis of brain tumours in children.

GPs in England see fewer than eight new cancer cases per year on average, but many more patients present with symptoms which could be cancer. In order to continue to support GPs to identify patients whose symptoms may indicate cancer and urgently refer them as appropriate, the National Institute for Health and Care Excellence (NICE) published an updated suspected cancer referral guideline in June 2015. The guideline includes new recommendations for brain tumours in adults and; children and young people. NICE also addressed generally, symptoms of concern in children and young people, recommending that GPs should take into account the insight and knowledge of parents and carers when considering making a referral for suspected cancer. NICE noted that more lives could be saved each year in England if GPs followed the new guideline, which encourages GPs to think of cancer sooner and lower the referral threshold.

Following publication of the updated guideline, the Royal College of GPs (RCGP) has worked in collaboration with Cancer Research UK (CRUK) on a programme of regional update events for GPs to promote the new guideline. RCGP and CRUK have also worked to develop three summary referral guidelines for GPs to enable them to adopt the guideline. The British Medical Journal published two summaries including one for children and young adults and Macmillan Cancer Support produced an updated Rapid Referral Toolkit. Summary guidelines and the toolkit are available on the Cancer Research UK website at: www.cancerresearchuk.org/health-professional/learning-and-development-tools/nice-cancer-referral-guidelines