Young people and parents of children with cancer often tell us about delays at time of diagnosis. So we surveyed families and commissioned research with GPs to inform our campaign.
We conducted research with 188 parents, 160 young people (aged 15-25) and 11 CLIC Sargent health and social care professionals.
A representative sample of 1,002 GPs also responded to our online poll.
- Over half of young people (52%) and almost half of parents (49%) visited their GP at least three times before their cancer diagnosis. Nearly half (44%) of young people felt their GP did not take their concerns seriously and a third (36%) of parents felt their GP did not take into account their knowledge of their child. Just over a third (34%) of young people and a quarter of parents (25%) felt that their GP did not have enough time to listen to them talk about their symptoms.
- A third (34%) of parents and just over half of young people (53%) felt their diagnosis was delayed. Of those, almost half felt that this perceived delay impacted on their prognosis. They also reported losing trust in their GP.
- Experiences prior to diagnosis can also impact on families emotionally. Nearly one in five parents (16%) felt that their child’s ability to cope had been affected by their experience of the health system prior to diagnosis and just under a third (31%) of young people agreed.
- Almost half of GPs polled (46%) told us that lack of training opportunities is a barrier to identifying childhood cancer and more than half (57%) said discussions about specific cases with experts, such as paediatric specialists, would help them to identify the need to investigate whether a child or young person had cancer.
To tackle some of the issues raised in this report, CLIC Sargent worked with The Royal College of General Practitioners and Teenage Cancer Trust to develop a free e-learning module. The module gives practical guidance to GPs on how to recognise early warning signs in children and young people, and advice on when to refer suspicious cases.
Since the tool was launched in February 2017, more than 140 GPs have completed the module, with participants reporting a 22 per cent increase in confidence in diagnosing cancer in children and young people.