Tuesday 16th October 2018

Around 7 young people aged 13-24 are diagnosed with cancer every day in the UK. Every young person with cancer needs expert treatment and support from the moment they are diagnosed.

The NHS is currently developing a new Long Term Plan, supported by the funding settlement announced in June 2018 by the Prime Minister, to set out how it will change and improve over the next decade. We believe that improving cancer outcomes and care for young people must be an integral part.

Image text reads 'Our NHS Long Term Plan Priorities'

The priority areas we believe the NHS Long Term Plan should commit to improving are:

  • sustainable funding for teenage and young adult cancer services and specialism
  • early diagnosis and assessment
  • access to post-treatment support (including mental health services)
  • working with Teenage Cancer Trust to develop a teenage and young adult cancer speciality workforce 
  • recruiting teenagers and young adults with cancer to clinical trials

HOW CAN I HELP?

Your voice is vital in demonstrating why it is important for teenage and young adult cancer to be a priority in the new NHS Long Term Plan.

You can help us raise awareness of our priorities by emailing your MP and explaining why they matter to you. If you'd like more explanation of our priorities, you can find these further down the page.

Don't forget, your stories are powerful - if you are a young person with cancer or know someone who is, sharing your story can really demonstrate the importance of prioritising young people with cancer. If you aren't sure who your MP is, you can find out and email them directly through WriteToThem. 

You can also arrange to visit your MP to share your story in person. You can find contact details for MPs on Parliament's website, which will allow you to call or email to arrange a meeting. 

Whether you email or visit your MP, ask them to write to Health Secretary Matt Hancock to explain that they have met with you and that, as one of their constituents, it's important to you that teenage and young adult cancer is a priority in the Long Term Plan. 

WHAT DO THE PRIORITIES MEAN?

Image text reads 'Sustainable funding for teenage and young adult cancer services and specialism'Sustainable funding for teenage and young adult cancer services and specialism

We helped pioneer the establishment of age-appropriate services and teenage and young adult cancer specialism in the UK. Since the opening of our first specialist unit in 1990, our partnership with the NHS has been critical to developing safe, effective and sustainable services. 

There has been clear progress over the past 20 years, such as the decrease in mortality rates and improvement in five-year survival rates for 13-24 year olds with cancer. It is critical that the Long Term Plan acknowledges the progress that has been made and makes a clear investment in these specialist services for the future. 

Without a teenage specific environment, my treatment would have been much more depressing and lonely.

Image text reads 'Early diagnosis and assessment'Early diagnosis and assessment 

Our Youth Advisory Group and the APPG for Children, Teenagers and Young Adults with Cancer inquiry has made clear that young people with cancer see early diagnosis as a key area of concern.

73% of young people and parents surveyed as part of the APPG inquiry felt not enough was being done to improve experiences of diagnosis. 

It took me 8 years of daily headaches to be diagnosed with a low-grade brain tumour.

We believe that better education among healthcare professionals of the symptoms that may be being presented is important. However, there is also a clear opportunity to raise awareness among young people and empower them to take control of their healthcare. 93% of UK students have said that our Education and Awareness presentations increased their knowledge and understanding of cancer warning signs, but we're currently only able to reach 25% of students. It is imperative that every young person has access to this simple information. 

Image text reads 'access to post treatment support (including mental health services)' in block text on blue background.Access to post-treatment support (including mental health services)

The vast majority of our Youth Advisory Group were not satisfied with their post-treatment support, with many highlighting mental health as the area they were least satisfied. A survey we conducted in 2018 revealed that 8 in 10 young people with cancer found the mental health impact of their diagnosis as the difficult as the physical side.

The burden shouldn't have to sit with teenagers and young adults to communicate the challenges with transition.

Young people can and do benefit from effective post-treatment support. Many young people have said they felt better equipped to manage their health and well-being after attending our Way Forward event. 

Image text reads 'Recruiting teenagers and young adults with cancer to clinical trials' in block text on light blue backgroundRecruiting teenagers and young adults with cancer to clinical trials

Young people with cancer have very low levels of participation in clinical trials. We want to see the new 10 year plan empower young people's healthcare and ensure that young people with cancer's outcomes are improved. 

This would include overcoming several issues currently affecting teenage and young adult participation in clinical trials such as: a lack of investment into rarer cancers found in teenage and young adult patients; arbitrary age restrictions to trials that exclude young people; and difficulty for young cancer patients moving between children's and adult services.