Today NHS England has published an updated document outlining the standards of care that is expected from NHS services in England that provide care for teenagers and young adults with cancer.
Teenage Cancer Trust has long been involved in establishing cancer services for teenagers and young adults in the UK.
This has included working with policy makers in defining the standards and measurement of performance for these services. We have been working alongside the NHS and other partners to help shape these service specifications.
Key points from the updated teenage and young adult service specifications include:
• That there should be a participation rate of 50% of teenagers and young adults with cancer taking part in clinical trials by 2025
• That teenagers and young adults with cancer should have access to fertility preservation where treatment will likely impact fertility
• That every teenage and young adult should have access to a social worker, expert psychological support – during and after treatment – and an activity co-ordinator/youth worker
• Improving transitions between child, teenage and young people and adult cancer services, with no age gaps between these
• Offering every teenager and young adult the opportunity to tumour bank
Teenage Cancer Trust has a long-term goal that, by 2040, young people with cancer in the UK will have the best outcomes and quality of life in the world; these new service specifications provide a solid foundation for this, and we welcome its publication.
Young people are at a unique stage in their lives. They are discovering who they are and undergoing rapid developmental changes.
A cancer diagnosis pauses that; they suddenly lose any newfound independence, and they don’t know whether they are going to live or die. Meanwhile, life around them goes on.
We believe these new service specifications have the potential to benefit young people hugely.
We particularly welcome the focus on improving transition between children, teenagers and young adults, and adult services as this will help to ensure that no young person falls through the gaps and can access the care and support they need at the time of life they are at.
We know that for young people, their mental health is as important as their physical health as they face cancer, so it is pleasing to see that as part of their care, there is an expectation that they will be able to access expert psychological support from diagnosis and beyond.
We hope that this will extend to the provision of specialist psychologists for those young people with high level needs, as we are aware that this is not currently accessible to all young people with cancer when they need it.
“We have been working alongside the NHS and other partners to help shape these service specifications”
Mental health support is an area that Teenage Cancer Trust have been campaigning for via the #NotOk campaign.
Our ‘#NotOK: Filling the gaps in mental health support for young people with cancer’ report revealed that more than a third of young people with cancer surveyed in April 2021 could not access a psychologist when they needed to in the previous six months.
Depression, anxiety and panic attacks are common among young people with cancer, and the psychological impact of a cancer diagnosis can lead to lasting problems in adulthood.
We also welcome the focus on increasing participation in clinical trials for this age group, as these offer young people the opportunity to access new treatments that can improve cancer outcomes.
But currently there are barriers to access which mean young people with cancer are not always able to participate in and benefit from them.
And fertility preservation, also featured in the service specifications, is imperative for this group, Cancer already takes so much from young people; it should never also deny them the opportunity to have a family in later life where this is avoidable.
Swift implementation of the teenage and young adult service specification is now essential so we can ensure teenagers and young adults with cancer can access the most up to date and comprehensive treatment, care and support they need, and deserve.
Dr Louise Soanes, chief nurse, Teenage Cancer Trust