First ever Under-16 Cancer Patient Experience Survey in England launched

The results, released on Wednesday 27th October, are available here

A ground-breaking new study which will examine children’s and young people’s cancer experiences across England for the first time has been launched.

The results of the survey will be used by commissioners, providers, and national policymakers to identify priority areas for improvement in children’s cancer services. The survey of children and young people aged under 16 and their parents or carers is being conducted by international healthcare charity Picker on behalf of NHS England and Improvement (NHSEI). It is designed to better understand the experiences of cancer care among children and their families in England.

The survey content was informed by an advisory group of key stakeholders including clinicians, commissioners, cancer charities, young patients, and parents. We also held discussion groups and interviews with children who have received cancer care and their parents or carers.

NHSEI commissioned Picker to conduct the research following the publication of the report ‘Achieving World-Class Cancer Outcomes: A Strategy for England 2015-20,’ by the Independent Cancer Taskforce. The strategy highlighted the importance of patient experience data in service development and improvement. It recommended NHSEI develop a way to collect data on the experiences of patients aged under 16 with cancer.

From the survey data, Picker will provide national results and reports for specific treatment centres across England, with additional child-friendly visuals on the website. Picker will also run workshops to facilitate understanding of the data and to provide an opportunity for health professionals to share learnings and inspiration for service improvements.

We are proud to be launching the survey after 12 months behind the scenes developing the questions, methodology and website. It is the first survey of its kind and will help healthcare providers understand how we can deliver person centred care for children with cancer. The survey will provide vital insights into how care is delivered including where care is good and where improvements can be made.

Dr Amy Tallett, Head of Research at Picker

It’s so important for us to listen and learn from children and young people so that we can continue to provide them with the best possible care and experience throughout treatment, and to reduce the impacts on later life. With the publication of the results anticipated for the autumn of 2021, this long held ambition to gain insight into a hugely important area will become a reality and will give a voice to thousands of children and young people with cancer.

Clare Enston, Head of Insight and Feedback for NHSEI

Visit the Under 16 Cancer Patient Experience website.

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