Monday 29th February 2016

Over 200 13-24 year olds are diagnosed with cancer each year in Scotland, and about the same number will continue to receive care for cancer or relapse. 

They might receive their care and treatment in one of 23 sites across the country, which means coordination of care and national working are really important. Teenage Cancer Trust has specialist units at 4 sites in Scotland where young people might be treated, and we fund national posts to join up care across other centres to make sure every young person has access to age-appropriate care and support.  With the support of young people and their families as well as our expert advisors in Scotland we've lobbied the Scottish Government to ensure teenagers and young adults are included in any policy developments and cancer strategies. Most recently we've held a series of parliamentary roundtable meetings about access to clinical trials for young people with cancer in Scotland. We’re really excited about the potential of the new Cancer Plan for Children and Young People to help drive improved patient experience and outcomes for young people with cancer in Scotland. 

 

Who is behind the plan?

“Right Diagnosis, Right Treatment, Right Team, Right Place: The Cancer Plan for Children and Young People in Scotland, 2016-2019” was published on 5 February by the Managed Service Network for Children and Young People with Cancer. The Network was set up by the Scottish Government in 2012 with the aim of ensuring that all children and young people with cancer in Scotland have the best possible outcomes. Teenage Cancer Trust took part in the Network’s engagement process while creating the plan to ensure that the issues that matter to young people with cancer were reflected in the final document, and Dawn Crosby, our Regional Service Manager for Scotland and Northern Ireland, is currently seconded to the Network as their National Network Manager. 

What’s new?

The new plan sets out some exciting targets and aims for Scotland that Teenage Cancer Trust believe can have a big impact on the lives of young people with cancer and their families. 

  • Clinical trials

The Network have pledged to provide all young people with the opportunity to take part in appropriate clinical trials. This is really important; currently only around 30% of 15-19 year olds and 14% of 20-24 year olds across the UK enter clinical trials compared to 50-70% of children with cancer. Recent data shows that only 28% of trials that are suitable for young people with cancer have been opened in Scotland, meaning young Scots are at a significant disadvantage to their UK counterparts. The Network’s pledge is a welcome step in addressing these statistics and moving towards clinical trials access for every young person with cancer.

  • Specialist care

The national model of care for young people with cancer will harness technology to improve the service that young people receive. All young people should have their care reviewed at a national multi-disciplinary meeting which brings together health professionals from consultants to psychologists and social workers to create a holistic plan for patients. This way of working will be extended to managing care after treatment too, so that any late effects or ongoing needs can be met. 

  • Collaboration

The Network have committed to working in partnership with a range of organisations and individuals in delivering the plan. We will play our part in this to do all we can for young people in Scotland, and we’re looking forward to continuing to work with the Managed Service Network over the next 3 years as they put the new plan in place. 

 

What happens next?

In order for the plan to be successful it’s really important that it has support from the Scottish Government. At its launch the plan was endorsed by Shona Robison MSP, Cabinet Secretary for Health and Wellbeing, and we want to see continued funding and resources provided by the Government for its implementation. It’s also vital that delivery of the plan is monitored and evaluated over time to track improvements. This will involve robust data collection, annual reports on progress, and clear transparency and accountability to demonstrate how things are changing. 

Scotland are also set to publish their National Cancer Plan, for cancer patients of all ages, later in 2016. We want to see this document reflect the ambitions of the Network’s plan, and make sure that services are joined up for young people who transition into adult services. The National Cancer Plan must also have a focus on additional important areas that aren’t covered in the Network’s plan, such as prevention, cancer awareness and early diagnosis. 

What about the rest of the UK?

Scotland is unique in being the only UK country to have a specific cancer plan for children and young people. There’s lots for England, Scotland and Wales to learn from this plan, particularly in relation to designing a national service for young people with cancer. As NHS England moves forward with implementation of their new Cancer Strategy, and we await refreshed cancer plans for Wales and Northern Ireland, we want to see all parts of the UK following Scotland’s lead in recognising that young people with cancer are a unique patient group with specialist needs that must be met. 

What do you think about the new plan for young people with cancer in Scotland?  If you have any comments on this, or other areas of our policy work, get in touch to let us know on policy@teenagecancertrust.org