Introduction

Each week in the UK, around ten children or teenagers are diagnosed with a brain tumour in the UK. The  time taken from a child’s first symptoms to diagnosis of a brain tumour for half of the children to be diagnosed is currently 12-13 weeks (median) in the UK, the other half take longer, sometimes up to a year or two.  In comparison, similar figures in other countries show that half the cases are diagnosed in as little as 5 weeks.  This shows that UK figures compare unfavourably.

The aim of the HeadSmart campaign is to reduce the time it takes to diagnose children and young people with brain tumours in the UK by educating healthcare professionals and the public about the symptoms of brain tumours in children and young people.

Reducing the time to diagnosis should reduce the long term disability that many children and young people diagnosed with a brain tumour currently experience.

How delays in diagnosis occur and how we hope to reduce them

Research has shown that there is considerable variation in the time taken to diagnose childhood brain tumours in the UK. Half of all children and young people diagnosed with a brain tumour take longer than three months to be diagnosed. The aim of the HeadSmart campaign is to reduce the time taken to diagnose brain tumours so that half of all children and young people with a brain tumour are diagnosed within six weeks of developing symptoms or signs of a brain tumour.

Delays in the diagnosis pathway can occur at different stages and for different reasons. This project intends to reduce delays at all stages:

Delay in visiting a health professional:

Sometimes a parent or teenager may put off going to see a doctor – they may be busy or have circumstances that make it difficult to visit the doctor, or they may not feel that the symptoms are serious enough. With our symptoms information, we aim to raise awareness of the symptoms among parents, young people and their family members so that, if the symptoms are severe or persist, they are advised to urgently visit their GP.

Health Professional doesn't recognise the symptoms:

Doctors, and particularly GPs, have a very difficult job that requires them to make decisions about the care of patients of all ages and with lots of different symptoms and conditions. The symptoms of a brain tumour can be similar to those that occur with other much more common and less serious childhood illnesses. Sometimes doctors don't realise that symptoms could suggest a brain tumour. The Diagnosis of brain tumours in children guideline and the HeadSmart website advise GPs and other health professionals on the symptoms to watch out for and when to reassure a patient and their family / carers, when to review them after a short period of time and when to refer them for a brain scan.

Delays in referral:

Sometimes there can be delays with referrals or while waiting for appointments. Our information for parents and the public and the guideline for health professionals give guidance on how long children and young people should wait for a referral or scan appointment.

 

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The HeadSmart campaign is run by a partnership between the Children's Brain Tumour Research Centre (CBTRC) at the University of Nottingham, the Royal College of Paediatrics and Child Health (RCPCH) and The Brain Tumour Charity (formerly Samantha Dickson Brain Tumour Trust), and has been funded by The Health Foundation and The Brain Tumour Charity. These diverse organisations have joined force to tackle the issue of brain tumour awareness in order to speed up diagnosis times.