Under 16 Cancer Patient Experience Survey Results

“We must come together to deliver the change needed” 

Hearing the views of children and young people with cancer and their families is vital in understanding and improving their care and support. Children under 16 and their parents or carers can complete the annual Under 16 Cancer Patient Experience Survey (CPES) to share their feedback about their NHS cancer care in England.  

The results from the fourth Under 16 CPES, which ran during 2023, were published on 14 November 2024, providing not only the latest annual insights, but also adding to a four year overview since the survey was launched in 2020.   

The 2023 results show some positive trends seen over the previous three years continuing to remain consistent, including that the majority (97%) of respondents saying they were looked after well, or very well, by healthcare staff.  

The results also positively show that most parents and carers (83%) and young cancer patients (74%) continue to be provided with information about charities, including Young Lives vs Cancer, which they can talk to about their cancer.  

However in some areas, this year’s results highlight little or no improvement over the last four years. 

In particular, more than two in five (45%) children and young people are still seeing their GP three or more times about their cancer symptoms before being told to go to hospital. Many children and young people (43%) and parents and carers (44%) were not given information about a psychologist or counsellor that they could talk to about their cancer. These have remained consistently high throughout the years the Under 16 CPES has been running.  

Concerningly, one in three (34%) parents or carers did not receive enough information about the financial help and benefits they might be entitled to following their child’s diagnosis, which appears to have increased over the time the Under 16 CPES has been running, from 24% in 2020.  

Despite signs of improvement in the proportion of respondents reporting receiving ongoing support after treatment ending, around two in five (38%) of parents or carers still report needing more ongoing support after treatment ends, highlighting a significant proportion of families are still not receiving the support they need after treatment has finished. 

The results also continue to highlight issues which Young Lives vs Cancer continue to campaign on, including the distances and associated costs of travelling to their treatment and care at specialist centres. When asked about how long they had to travel to get to their main treatment centre, more than a third (34%) travelled an hour or more, which has increased from a quarter (25%) in 2020.  

In response to the results, Rachel Kirby-Rider, Chief Executive of Young Lives vs Cancer, said; 

“No one understands the experience of having cancer as a child or young person better than young cancer patients, their families and carers. The Under 16 CPES is incredibly important in giving them the chance to share their experiences directly with the NHS in England and others involved in their care and support.  

“It’s great to see that most continue to report being well looked after by healthcare staff, and being told about charities like Young Lives vs Cancer and the support that we provide. We want our support to reach every child and young person with cancer, and their families, who need it.  

“But after four years of the Under 16 CPES, we’re still seeing concerning trends and lack of improvement across areas including timely diagnosis, psychological support, financial support and travelling to treatment, with a significant proportion of children, young people and families not getting the support they need and deserve.  

“We’ve seen these trends in our research too – they’re not a surprise but we have to see them change. Which is why together with charity partners we’ve launched our North Star Vision for children and young people with cancer – where every child and young person facing cancer receives care that’s tailored to them, and have everything they need from the beginning of their cancer journey, for as long as they need it.  

“We must come together, as a sector, as a system, as a society, to make this Vision a reality. We all have a part to play – the NHS, the UK Government, charities, partners and more. We hope everyone reflects on the results of the past four years and comes together to deliver the change needed. And it’s vital that the upcoming UK Government National Cancer Plan focuses on the unique needs of children and young people with cancer so we see improvement in these areas.  

“Young Lives vs Cancer are pleased to work closely with NHS England on the Under 16 CPES to make sure voices are heard. And we won’t stop trying to shape the system until children and young people with cancer and their families get the care and support they need.” 

2023 Survey Results – In Detail 

Getting a Diagnosis 

Question: “Before you were told your child needed to go to hospital about their cancer or tumour, how many times did they see a GP (family doctor) about the health problem caused by the cancer or tumour?” 

The proportion of young cancer patients having to visit their GP more than once, including three or more times, has remained consistently high since the Under 16 CPES was launched. It’s vital that signs and symptoms of cancer in children and young people are spotted as early as possible, because the sooner you’re diagnosed, the sooner you can get the treatment you need, and earlier and faster diagnosis can result in better outcomes. Ensuring timely diagnosis for children and young people with cancer must be addressed in the upcoming UK Government National Cancer Plan, as outlined in our Children and Young People’s Cancer Plan.  

Travel to Treatment 

Question: “How long does it take to get to the hospital where your child receives most of their cancer or tumour care?” 

Children and young people with cancer often travel regularly to specialist centres to get the treatment and care they need, which are usually far from home. Our #RunningOnEmpty research shows that on average, young cancer patients and their families travel 350 miles every month throughout their treatment, which comes at a significant cost of £250 every month. With seven in 10 (71%) struggling to meet the costs of their travel, we’re calling on the Government to introduce a Young Cancer Patient Travel Fund to support with the costs of this necessary travel. 

Financial Support 

Question “Do you have enough information about how to get financial help or any benefits you might be entitled to?” 

It’s important everyone knows about the financial support available to them as soon as possible, as it is a vital lifeline for many. Our Cancer Costs research shows that additional costs start immediately and are an extra £700 every month on average. We also know that for benefits like Disability Living Allowance and Personal Independence Payment there are long waiting times delaying payments. To help with these issues, we’re calling on the government to provide access to financial support from the point of diagnosis to help young cancer patients and their families with the impact of rising costs that immediately come with receiving a cancer diagnosis. 

Mental Wellbeing 

Question: “Have hospital staff given you information about any of the following people you can chat to about your/your child’s cancer or tumour?” 

We know that cancer has huge impacts beyond clinical care – it can take a toll on the mental wellbeing of children, young people and their families as well, and it’s not uncommon to be affected by poor mental wellbeing including anxiety and depression during cancer treatment. A whole section of our Children and Young People’s Cancer Plan is dedicated to supporting psychosocial needs, including having access to evidence-based, person-centred mental health support throughout the treatment pathway for children and young people but also their families as well.  

*grouped categories. The full Under 16 CPES results are available here.