Listen Up! What Matters to Young Cancer Patients is the new report from the All-Party Parliamentary Group on Children, Teenagers and Young Adults with Cancer (APPG CTYAC), looking into patient experience for children and young people with cancer across the UK.
Published in July 2018, Listen Up! concludes the APPG's first ever inquiry, which involved reviewing research and other evidence such as the inquiry's online survey for healthcare professionals, children and young people with cancer, and their families. The APPG also held a Facebook Live Q&A to gather the views of children and young people with cancer on their experience and conducted 2 scrutiny sessions in Parliament.
Listen Up! was written after this evidence-gathering and contains 15 key recommendations for governments across the UK to act on to improve patient experience for children, teenagers and young adults with cancer.
Patient experience for children and young people with cancer
As part of the inquiry, the APPG surveyed young people who have experienced cancer and their families and healthcare professionals. This survey found:
- 73% of young people and parents who responded did not think enough is being done to improve experience of diagnosis
- 82% of young people and parents did not think the government listened to experiences of young people with cancer and their families enough
- 64% of parents and young people responding to the survey did not think enough was being done to create a positive experience for children, teenagers and young adults with cancer
- 73% of young people with cancer and parents did not think enough was being done to ensure access to post-treatment support
The APPG's Facebook Live Q&A was also a valuable opportunity to hear from young people with cancer and their families, such as Katie:
It felt like if I was older and went with the symptoms I had I would be taken more seriously.
Katie appeared on the panel of the first of the APPG's two scrutiny sessions, where the group heard evidence from key experts across the cancer sector such as Steve Brine MP (the UK government minister responsible for cancer policy), Dr Rachael Hough (Chair of Children and Young Adult Cancer Services Clinical Reference Group), and Kate Collins (Chief Executive of Teenage Cancer Trust). The panel were joined by by Tim, a parent, for the second scrutiny session:
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.
The 15 key recommendations outlined in Listen Up! address issues surrounding diagnosis, treatment, post-treatment support, and getting young people with cancer's voices heard. These recommendations include:
- compulsory lessons in secondary schools 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
What happens next?
The APPG CTYAC will work with the Government and key NHS leaders to ensure that what matters to children and young people with cancer and their families is addressed and acted upon.
Thangam Debbonaire MP, Chair of the APPG CTYAC, said:
Going through cancer is horrendous but there are ways that it can be made a more positive experience.
What can you do?
Help us raise awareness of what matters to young people with cancer and their families. Please read and share Listen Up! to help us show the Government what really matters to young people with cancer.
If you are a young person with experience of cancer or the parent of a child, teenager or young adult with cancer, you can email your MP using this template to share your story and tell them why acting on the recommendations in Listen Up! matter to you. Not sure who your MP is? You can find out here.
You can also tweet Steve Brine MP to tell him why it's important for the Government to act on the recommendations in Listen Up! Please use #YoungCancerVoices in your tweets.