Inquiry into patient experience

The All Party Parliamentary Group (APPG) on Children, Teenagers and Young Adults with Cancer (CTYAC) is launching an inquiry into patient experience for children and young people with cancer across the UK. We want to hear from young people, parents and health professionals.

Why is the APPG looking at patient experience?

Patient experience has been identified by NHS England and in cancer strategies across the UK as being vital to clinical outcomes. 

Improvements have been made in cancer services across the UK, but progress still needs to be made in key areas of experience for children, teenagers and young adults, including earlier diagnosis, access to age-appropriate services and post-treatment support.

The APPG hopes to better understand the experiences of children and young people with cancer and identify whether their needs are being met by cancer services across the UK. 

Read the full terms of reference of the inquiry.

What do we want to find out?

The group will gather evidence and make recommendations on the following three themes: 

  1. Children and young people’s experiences of diagnosis
  2. Post-treatment support for children and young people
  3. How children and young people want their voices to be heard in the system.

Call for evidence

The APPG has gathered focused feedback from healthcare professionals, children and young people with cancer and their families through an online survey and a Facebook Live Q&A.

The APPG is holding two scrutiny sessions in Parliament, where key experts across the cancer sector will give evidence to a panel of MPs, a young person and a parent.

At the first session on 25 April, the Group will hear evidence from:

  • Steve Brine MP, the government minister responsible for cancer policy
  • Professor Chris Harrison, NHS England's National Clinical Director for Cancer 
  • Dr Rachael Hough, Chair of the Children and Young Adult Cancer Services Clinical Reference Group. 

At the second session on 2 May, the Group will hear evidence from:

  • Kate Lee, Chief Executive at CLIC Sargent, 
  • Kate Collins, Chief Executive at Teenage Cancer Trust, 
  • Louise Dolphin, CLIC Sargent Social Worker 
  • Jamie Cargill, Teenage Cancer Trust Lead Nurse. 

The Group will also hear evidence from representatives from the devolved nations, including:

  • Clare Rowntree, Wales national clinical lead for teenagers and young adults with cancer 
  • Prof. Hamish Wallace, National Clinical Director of the Managed Service Network for Children and Young People with Cancer in Scotland 
  • Dr Anthony McCarthy, Consultant Paediatric Oncologist in Northern Ireland

What will happen next?

The APPG will publish the findings of this Inquiry and the key recommendations for change in the summer 2018.