Influencing policy

Teenage Cancer Trust wants to ensure all young people with cancer get the support and care they need.

Our policy work is aimed at influencing change in two main areas:

Quality and access:

We work to fund and develop specialist facilities for young people with cancer across the UK, including specially trained staff.

Diagnosis and survival:

We work to significantly improve the diagnosis experience and outcomes for young people with cancer.

In order to succeed in meeting our aims, we work in partnership with national organisations to inform and influence them on the experiences of young people with cancer and what can be done to help.

We work with politicians, parliamentarians, civil servants, professional bodies, as well as other charities to influence decisions so that these decisions improve the lives of young people with cancer and their families all across the UK.

You can read more about our work below, and click here to see the latest policy news.

What we're doing...

To improve quality and access:

  • NHS Scotland's Managed Service Network asked for input into their new Quality Indicators for services provided to children and young people with cancer.

We responded to highlight the importance of patient experience, age-specific care, and access to clinical trials for teenagers and young adults. We'll be monitoring the development of these new measures as they take shape.

  • In July 2013 Teenage Cancer Trust co-chaired a summit meeting with Paul Burstow MP, bringing together leading oncologists, cancer researchers, and health regulators to discuss access to clinical trials.

Currently there is a significant lack of trials for the types of cancers that affect teenagers and young adults, and where ones do exist, often the age criteria excludes patients in this age group. As a result of the meeting we are calling for a measurable increase in research relevant for teenagers and young adults with cancer, and an improvement in access to clinical trials for young people to at least reach the same level as in children with cancer. A second summit meeting in January 2014 will assess progress and examine what leaders in the field are doing in their individual spheres to bring about change.

  • In January 2013 the Government announced that it had reviewed rules around Work Capability Assessments and decided that more cancer patients should get direct access to benefits. We know lots of young people with cancer can’t work because they’re undergoing or recovering from treatment. Access to benefits throughout means they’ll now be supported, not put under financial pressure to get back to work. We supported the campaign to change the Government’s view on this and we’re delighted with this decision.

See our comment on the Welfare Reform consultation last year.

Here’s the link to the info on the DH website.

  • The Government asked for expert views on the Children and Young People's Health Outcomes Strategy which aims to improve the quality of healthcare services for children and young people.

We emphasised the need for age appropriate care and early diagnosis, as well as the need for integrated services, better communication with young people, and outlining the key outcomes we think should be included in the strategy. We hope this will go some way to improving the quality of healthcare of young people.

  • Meeting Nicola Sturgeon, MSP Deputy First Minister and Cabinet Secretary for Health, Welbeing and Cities.

On 28 March 2012 Nicola Sturgeon MSP launched the first ever Managed Service Network for Children and Young People with Cancer and their Cancer Plan.

We've been working with the Scottish Government and the MSN to ensure that young people up to the ages of 25 are included in the strategy. We are delighted that Nicola Sturgeon MSP has made an explicit commitment to include teenagers and young adults with cancer in this work.

We look forward to working with the MSN to support the work on improving outcomes for teenagers and young adults in Scotland.

  • Meeting Andrew Lansley MP CBE, Secretary of State for Health

We met with the Rt Hon Andrew Lansley CBE MP and Professor Sir Mike Richards CBE, National Clinical Director for Cancer and End of Life Care, in September 2011. Mr Lansley was impressed by the world leading service that Teenage Cancer Trust delivers in partnersip with the NHS.

Our relationship with the Department of Health is critical to our success in delivering high quality services in the NHS for teenagers and young adults with cancer. We agreed to work with the Department on early diagnosis, outcomers from health services important to young people, and survivorship.

To improve diagnosis and survival:

  • The Department for Education are developing new guidance for schools to help them support pupils with medical conditions, including cancer.

We responded to highlight the importance of providing holistic support for young people with cancer, and the need to assess support requirements on an individual basis.

  • The Department of Health ask for views on their plan to combat rare diseases in response to a recommendation from the European Commission.

We responded to the consultation, emphasising the need to improve diagnosis rates in young people, and advocating a three strikes approach for GPs to encourage GPs to refer young people if they are seen three times with persistent symptoms. In addition, we called for integration between health services and care co-ordination to patient experiences.

  • NICE undertook a process of updating guidance on referral of suspected cancer and asked opinions on the guidance.

We welcomed the specific naming of the teenage and young adult cancer group in the guidance, and suggested the addition of a number of cancer signs seen commonly in the TYA group. We believe if this is included in the guidance, it will help improve the diagnosis experience for young people.

  • The Government asked for views on PSHE teaching and ways to improve the quality of teaching.

We said cancer and health advocacy should be made a part of PSHE education. Learning from our Education and Advocacy's successful work in schools talking to young people about cancer and health issues, we believe this education is needed for all young people. The education will help to demistify cancer, support young people understanding any concerning changes in their bodies, and improve their confidence in seeking help for these concerns.

Join TCTeeNation and have your say

By joining TCTeeNation you can help young people fight cancer. Whether you are a current or former patient we want to hear what you think about the issues affecting young people with cancer.


Young Voices Report

The report is a collection of messages from teenagers and young adults about their experiences of having cancer, the issues important to them and their views on Government policy on health services in the UK.