CLIC Sargent's better care for young cancer patients three year campaign launched in July 2015 to secure better care for young patients in the UK. This campaign is calling for changes to the health and care system so that young cancer patients get the best possible care and support.
Year one of the campaign - the best chance from the start - focuses on the experiences of young people and parents of children with cancer from the time they first recognised symptoms and possible signs to finding out they or their child had cancer.
Young people and parents of children with cancer often tell us about delays at time of diagnosis. So we surveyed families and commissioned some 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.
We will use our research findings to work with government, policy makers, the NHS and professionals on the ground to help to address the issues raised in this report and to seek the implementation of our recommendations.
We will also be calling on Parliamentarians to help us raise the profile of our concerns at a national level with the government and NHS, and at a local level with CCGs and Health and Wellbeing Boards.