Listen up!

The ‘Listen Up! What matters to young cancer patients’ report was published by the All Party Parliamentary Group on Children, Teenagers and Young Adults with Cancer (APPG CTYAC) in July 2018 and looks into patient experience for children and young people across the UK, making a number of recommendations for change. 

Listen up!

Listen Up! report 

The report concludes the APPG’s first ever Inquiry into patient experience for children and young people with cancer and reviews research and other evidence, including findings from the Inquiry’s survey of young people, parents and health care professionals and evidence gathered from the Inquiry’s two scrutiny sessions. 

Inquiry into patient experience 

As part of the Inquiry, the APPG CTYAC surveyed young people who have experienced cancer and their parents and health care professionals. The survey found: 

  • Almost three-quarters of young people responding (73%) did not think enough was being done to improve experiences of early diagnosis 
  • 73% of parents and young people didn’t think enough was being done to ensure access to post-treatment support 
  • 64% respondents did not think enough was being done to create a positive experience for children, teenagers and young adults with cancer
  • 82% of young people and parents responding to the survey did not think that the government listens to the experiences of young people with cancer and their families enough. 

The APPG also held two scrutiny sessions in Parliament, where key experts across the cancer sector, including the Minister of State for Health with responsibility for cancer, gave evidence to a panel of MPs, a young person and a parent. 

Our key recommendations 

The APPG CTYAC is urging governments across the UK to take action to improve cancer patient experience for children and young people with cancer.  

The report makes a number of recommendations for change including: 

  • Compulsory lessons in secondary school on spotting the signs of cancer 
  • Designated hospital parking for children and young people with cancer  
  • An agreement from the government to meet with young cancer patients yearly to discuss their experiences 
  • Offering access to free fertility treatment to survivors of childhood cancer who were not offered fertility preservation before receiving cancer treatment  

What happens next?

The APPG CTYAC will work with government and NHS leaders to ensure what matters to children and young people with cancer and their families is addressed and acted upon. 

Find out more 

To read the report and recommendations in full, download the ‘Listen Up!’ report

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