Posted on Friday 3 July 2020
CLIC Sargent responds to the 2019 National Cancer Patient Experience Survey
Last week (June 25), NHS England released the findings of the National Cancer Patient Experience Survey (CPES) for 2019. Every year, around 70,000 cancer patients across England share a range of experiences related to their care. For example, how long they have had to wait before first seeing a hospital doctor, or how clearly they felt the results of tests were explained to them.
The response rate from young people with cancer has remained low, with 181 young people (aged 16-24) taking part in this year’s survey.
Since 2010 there has been a falling response rate from 16-24–year–olds with cancer. After a small rise to 242 respondents last year, we hoped for another increase. However, the 181 young cancer patients make up less than 1% of total responses. As such, this does not give a full picture of the experiences of this group – and therefore of all those experiencing cancer care.
The survey found 63% of young people were given information from hospital staff about accessing financial support. CLIC Sargent knows that #CancerCosts, which is why it is so important that we step in to provide this financial support.
Half (52%) of the young people said they were able to find someone at the hospital to talk to about their worries and fears. This is why the unique social care and mental health support CLIC Sargent provides for young cancer patients and their families is so important.
Half of respondents (52%) said that they did not receive enough support from health or social care services. These results suggest that while many feel they are getting the support they need, there are gaps in support and information about support for young people with cancer. CLIC Sargent are a vital part of enabling the NHS to deliver these services and it is vital that this support is available.
In response to the survey’s findings, Sonia Malik, Head of Research, Policy and Campaigning at CLIC Sargent said: “Given the COVID19 pandemic, you might have missed the publication of these results. But, pandemic or no pandemic, young people continue to be diagnosed, treated and continue on their cancer journey. Understanding the cancer experience pre and post COVID, and any lessons we can learn is key.
“While the results highlight how important the financial, emotional and practical support CLIC Sargent provides is for young people with cancer, it is clear there is still work to be done. We are working hard to make sure we are there for anyone who needs the age-specialist support we provide.
“But with less than 1% of the responses being from young people, it is clear that the survey needs to be more accessible and relevant to young people with cancer. Without engaging this group, their voices are just not being heard. CLIC Sargent, along with our friends in the children and young people’s cancer sector are keen to continue to work with NHSE on this.
“I’m glad that work on the development of the under 16–year–old’s survey continues – to try and get children’s and parents’ voices heard. If these recent survey results tell us anything it is that there is much work to do to get a true picture of the experiences of young cancer patients and their families – we’ve all got work to do on this, and CLIC Sargent is excited to continue to partner with NHS England to make this happen.”
‘Ava’s Chain of Kindness’ created in loving memory of Ava, 2, to raise funds for young people with cancer
Teddy bears decorated by school children make up 'Ava's Chain of Kindness' in memory of Ava, 2, and organisers hope children across the UK will get involved!