Young cancer voices call on government to improve their cancer experience

This week the All-Party Parliamentary Group on Children, Teenagers and Young Adults with Cancer (APPG CTYAC) has launched a new report, entitled ‘Listen up! What matters to young cancer patients’, looking into patient experience for children and young people with cancer across the UK. The report concludes the APPG’s first ever inquiry and outlines key recommendations for change and action from Government, 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 as patients 

·         Offering access to free fertility treatment to survivors of childhood cancer who were not offered fertility preservation before receiving cancer treatment  

As part of the Inquiry, the APPG CTYAC surveyed young people who have experienced cancer and their parents; almost three quarters (73%) of the same group say not enough is being done to improve experiences of early diagnosis of cancer or that there is not enough access to post-treatment cancer support.   

The report, compiled by the APPG CTYAC, reviews research and other evidence, including findings from two scrutiny sessions which took place this year, and hears from young people with cancer and their families.    

The first scrutiny session saw Katie, a 24-year-old former cancer patient, question healthcare experts and Steve Brine MP, the Minister of State for Health with responsibility for Cancer.  

Katie, who was only diagnosed with cancer after being rushed to A&E, despite dozens of trips to her GP, said: “I’m particularly passionate about the recommendations around diagnosis, given my experience. I was quite lucky they diagnosed me by accident, but so many patients on my ward had much worse experiences than me trying to get diagnosed. Working with GPs to support them in knowing when to refer to a specialist and providing education to young people to enable them to recognise symptoms is the key to improving the experience of diagnosis and ultimately, survival rates for young people with cancer. 

“All of the recommendations in ‘Listen up! What matters to young cancer patients’, are informed by listening to young patients and their families, showing the importance of listening to young people’s voices to collectively achieve greater change. It has been truly exciting to be involved in this APPG and I look forward to seeing what happens because of this.” 

The second scrutiny session saw Tim Sadler, 36, a father from Gloucester, whose young son had cancer, join MPs in Westminster to quiz a panel of experts in child and teenage cancer about how diagnosis and support during treatment can be improved to make sure that children’s and young people’s needs are being met. Tim said: “What has stood out for me is hearing that children and young people are disadvantaged in life simply as a result of their cancer diagnosis.” 

Thangam Debbonaire MP, Chair, APPG CTYAC, said: “Since launching the All-Party Parliamentary Group, we have heard some hugely powerful stories from young people, parents and children about their experiences, ranging from how parents were struggling to pay extortionate car parking fees to the frustrations of young people whose concerns were being ignored by their GPs. Going through cancer is horrendous but there are ways that it can be made a more positive experience.  

“We have made this our first Parliamentary inquiry because we want young cancer survivors’ voices to be heard in Parliament, and because we believe that there are solutions to some of their problems, which we can achieve if we work cross-party and listen to what children, young people and families are saying about their experiences of cancer treatment.” 

The APPG CTYAC aims to help decision-makers across the UK understand what matters most to the 4,000 children and young people under 25 who are diagnosed with cancer every year in the UK, and support them to deliver it.  

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 full report is available here: REPORT

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