This brand new programme aims to understand the experiences of cancer care among children under the age of 16 and their parents. The results of the survey will be used to help commissioners, providers and national policymakers to identify priority areas for improvement in children’s cancer services.
The new survey is currently under development and is being guided by an Advisory Group of key stakeholders including clinicians, commissioners, cancer charities such as CLIC Sargent, young patients and parents. Survey content and design is being informed by discussion groups with children who have recently received cancer care, and their parents. The first round of fieldwork will commence later in 2020 with the first set of results due for release in 2021.
In July 2015, the Independent Cancer Taskforce published its report “Achieving World-Class Cancer Outcomes: A Strategy for England 2015-20”, with the aim of radically improving the outcomes that the NHS delivers for people affected by cancer. The Strategy highlighted the importance of patient experience data in service development and improvement and explicitly recommended that NHS England take steps to develop a methodology to collect data on patient experience for under 16s with cancer. This commitment to improvement was also recently restated in the NHS Long Term Plan.
This groundbreaking new survey will be the first to address children’s cancer experiences across England. It aligns with Picker’s expertise and experience in designing patient feedback surveys for children and builds on our partnership with NHS England, who in 2019 awarded us a three-year contract to run the National Cancer Patient Experience Survey for adults.
The programme will be supported by a new website which will provide information about the survey and highlight results once available. The website is currently under development in collaboration with Global Initiative.
Speaking on being awarded the contract, Dr Amy Tallett, Head of Research at Picker, said:
We’re delighted to be working with NHS England to understand how we can deliver person centred care for children with cancer. Children’s views on how care is delivered, as well as the information and support they require, can be different to that of adults. The Under 16s Cancer Patient Experience Survey gives them an opportunity to tell us what’s good and what can be improved about the care they currently receive, and allows them to feedback on the areas of care that children themselves have prioritised.
Clare Enston, Head of Insight and Feedback for NHS England and NHS Improvement commented:
We’ve long had a means to understand the adult patient experience of cancer services, so it’s a great step forward to be planning the detail of how we can start to understand the experiences of children and young people with cancer under the age of 16. Data shows that children and young people with cancer tend to have very specific needs for their care that can differ from those of adults, demonstrating how important it is for this group to be able to share their experiences. As a parent/carer’s voice can differ from their child’s view it is important that this is captured too. We’re very pleased to be working on this important survey with Picker.
If you know anyone affected by childhood cancer who would be willing to take part in the development of the survey, more information is available here.
If you know someone under 25 who has cancer, tell them to visit www.clicsargent.org.uk or search ‘CLIC Sargent’ for information and support.