Getting a child’s eye view of cancer patient experience

Today is World Cancer Day, a powerful opportunity to raise awareness of cancer of all types, affecting all ages. This is an opportune time then, to tell you what we’re doing to ensure greater understanding of the cancer patient experience of children and younger teenagers, and their parents, and to give them a voice, writes Melinda Smith.

The Under 16 Cancer Patient Experience Survey, launching later this year, in partnership with Picker Institute Europe, will be the first to address children and young people’s cancer experiences across England. This means that, for the first time, we will be able to identify priority areas for improvement in younger people’s cancer services at a national level. We already have a means to understand the adult patient experience of cancer services (for those aged 16 and over), so it’s exciting to now be planning the detail of how we can learn more about the experiences of patients under 16.

Currently in development, this survey will run every year and will be made up of two separate questionnaires to capture the experiences of children at different ages – one for 8-11 year olds and one for 12-15 year olds – and a questionnaire to capture the experiences of parents/carers (of children aged 0-15). Having both young patients’ and parents’ perspectives will provide vital information about the cancer experience – what worked well during their care and what could be better or different – to help make cancer care better for the future.

So why is this survey needed?

In England, around 1,600 children (aged 0-14) are diagnosed with cancer every year and it’s a commitment in the NHS Long Term Plan to seek the views of under-16s to improve quality of care.

Receiving a cancer diagnosis is shocking, devastating and unfair and even more so when you’re a child. For children, treatment for cancer can be prolonged and ongoing with many appointments and treatments and various processes of care and tests. The side effects of intensive cancer treatment can leave a lasting impact on patients’ lives, with many more years of care required to help manage ongoing support needs.

Children are growing up whilst all this is going on, meaning that delivering care in an age-appropriate way is a huge priority, with access to education, opportunities for maintaining friendships and support with mental health for the whole family all being things that need to be considered in the way care is delivered.

The intensiveness of treatment means that families often live away from home while they’re receiving care, with care requiring multiple visits to hospitals, and sometimes families to have to establish a whole new way of living.

This survey will help us to understand the extent to which cancer care is helping to provide both the patient and family with seamless care that meets the myriad of needs they are faced with.

In order to make sure we gain insight into the full experience of cancer and the types of questions the survey should be asking, this month we are involving around thirty 8-15 year olds and up to 16 parent/carers in a series of discussion groups around the country. This will help us to understand what aspects of their experience of cancer care matter most and it will underpin development of the survey questionnaire over the coming months.

The survey is being planned for launch later in the year. We would encourage everyone who receives a letter of invitation, most likely over the summer, to take part in the survey and help us improve cancer services for younger patients and their families.

If you would like to receive updates on the progress of this important survey, please do get in touch with us via

Melinda Smith

Melinda Smith is an Insight Support Manager in the NHS Insight and Feedback team which oversees major NHS surveys, feedback tools and other social research to understand patient and staff experience in ways that can be used to drive continuous improvement in services.

Leave a Reply

Your email address will not be published. Required fields are marked *