Posted on Thursday 8 December 2022
Young Lives vs Cancer responds to 2021 Under-16 Cancer Patient Experience Survey results
The Under-16 Cancer Patient Experience Survey (CPES) takes place every year and provides valuable insight into the experiences and opinions of children and their parents or carers, which help understand and improve cancer care in England.
The 2021 results show that overall, the vast majority (89%) of parents and carers rate their child’s overall care as eight out of ten or higher and that most parents and carers (80%) and young cancer patients (69%) are being provided with information about charities, including Young Lives vs Cancer.
Rachel Kirby-Rider, Chief Executive of Young Lives vs Cancer, said;
“We are really pleased that Under-16 CPES continues to give young cancer patients and their families a vital opportunity to give their feedback about their care, and we will continue to champion this as a charity.
“It is great to see that from those who responded to the Under-16 CPES this year, most would rate their overall care positively, and that the majority of people were given information about the support that charities like Young Lives vs Cancer. We want to see every child, young person and their family being told about the support we can provide.
“Some of this year’s results however highlight key issues that we have been calling on the government to resolve over several years, including that almost half of young people aren’t being provided information about psychological support, and a large number are visiting their GP more than three times before receiving a diagnosis. Young Lives vs Cancer will continue to campaign on these and other key issues for children and young people with cancer and their families to help ensure they get the care and support they need.”
2021 Survey Results – In Detail
Travel to Treatment
When asked about how long respondents to the Under-16 CPES had to travel to get to their main treatment centre, over half (53%) travelled an hour or more.
We know that many young cancer patients and families have to travel to specialist cancer centres to get the care they need, which means often having regular long-distance travel or staying away from home. Young Lives vs Cancer research shows that on average, young cancer patients face a 60-mile round trip to get to treatment, which comes at a significant cost. Accounting for current petrol costs, families could now be spending £220 per month when treatment is at its most intense. Young cancer patients and their families are also travelling twice as far and spending twice as much on travel costs as adults with cancer.
These results demonstrate why we are calling on the Government to support families with their travel costs via a government-funded Young Cancer Patient Travel Fund.
When asked whether they received enough information about how to get financial help and access to benefits they may be entitled to, most respondents (62%) said they did receive enough information, however this means that not everyone is receiving this important information – 28% of respondents said they either didn’t get enough information or any information at all.
It’s important that families know as soon as possible about the financial support that is available to them when their child has cancer. We also know from our research that applying for this support, like Disability Living Allowance and Personal Independence Payment, is stressful and there are often long waits between applying and receiving a payment.
Cancer Costs start immediately, and we have been calling on the Government to support young cancer patients and their parents to be able to access financial support from the point of diagnosis to help reduce the impact of rising costs that immediately come with receiving a cancer diagnosis.
Getting a Diagnosis
When asked about how many times young cancer patients had to visit their GP before they were told they needed to go to hospital because of their cancer or tumour, more than a third of respondents (37%) said they visited their GP more than once, with almost a quarter (24%) visiting their GP three or more times.
It is critically important that the signs and symptoms of cancer in children and young people are spotted as early as possible so they are diagnosed quickly. Our research has previously shown that over half of young people (52%) and almost half of parents of children with cancer (49%) have visited their GP at least three times before their cancer was diagnosed, with a quarter of young people (24%) and one in five parents (18%) having five visits before receiving a diagnosis.
This is why we are continuing to call for enhanced support and training for GPs and other medical professionals to identify cancers in children and young people, as equipping professionals to recognise cancer signs and symptoms is key to improving patient outcomes and experiences.
When asked whether they were provided with information about a psychologist or counsellor that they could talk to about their cancer or tumour, around half of respondents (55% or parents and carers, and 54% of children and young people) reported receiving this. This, however, would suggest that almost half are not receiving information about psychological support available to them.
As part of the survey, respondents were also asked about whether their care or treatment changed what they were normally able to do, with four in five (80%) saying that their treatment impacted on their normal activity such as seeing their friends, hobbies or going to school. Respondents were also asked about whether the Wi-Fi in the hospital met their needs, and almost a quarter (24%) said that it didn’t.
We know the impacts of having cancer go beyond a child’s physical health, with the impact on their mental health being no less challenging. Our research has found that young cancer patients disproportionately experience mental health issues, including anxiety and depression – 90% of young people experienced anxiety and 70% experienced depression during cancer treatment. This can be made worse if you aren’t able to do things you would normally do like see your friends or going to school, or maintain connections with your friends and family.
We want to ensure that as part of their treatment pathway, young cancer patients have access to evidence-based, person-centred mental health interventions, and that all hospitals have good Wi-Fi access so that young cancer patients can maintain connections that are important to them and access support and education services. We will continue to lobby the government on these issues.
The establishment of the Taskforce comes after almost two years of campaigning by Young Lives vs Cancer and Children’s Cancer and Leukaemia Group (CCLG), who together have been calling on UK government to implement a dedicated Children and Young People’s Cancer Plan.
Dominique Davis will take up her new role at the end of January