Holyrood elections 2026: Transforming care and support for children and young people with cancer in Scotland

In May, over 16s in Scotland will take to the polling booths to elect their next representatives in Scottish Parliament and next Scottish Government. With this brings a vital opportunity for political parties in Scotland to commit to delivering the changes children and young people with cancer need and ensuring they get all the support they need, when they need it.  

Around 320 children and young people under the age of 25 are diagnosed with cancer every year in Scotland. Despite significant medical advances over the years, cancer remains the leading disease-related cause of death for this age group. 

In many ways, Scotland has led the way in recognising that children and young people with cancer have unique needs and experiences, demonstrated through their dedicated strategy for children and young people with cancer. They also created the Young Patient Family Fund, which provides financial support with some of the extra costs that come with treatment for inpatients under the age of 18, such as food and travel.  Both the Fund and the Strategy show an acknowledgement that the impacts of cancer on young lives are more than medical – they’re practical, financial and emotional too.  

But, the cancer strategy comes to an end in 2026, so a re-freshed,  dedicated approach for beyond 2026 is needed to ensure the system of care and support for children and young people recognises their distinct needs, and builds on, progress already made. We know that the families we support need more from the system, not less. 

That’s why we’re calling on the next Scottish Government to commit to a new, up to date national cancer strategy for children and young people from 2026 and beyond. 

Alongside the strategy, the Young Patient Family Fund has been transformative for some, helping with extra costs like travelling to treatment. But for many, the criteria is simply too restrictive to access support. Under 18s receiving day patient care, are excluded, despite the majority of cancer care happening on a day patient basis and young people aged 18-25 can’t access the Fund, despite receiving treatment at the same specialist centres,  

The specialist nature of cancer treatment and care means children and young people receive treatment at specialist centres. Scotland has some of the highest travel distances to treatment, with families travelling to Glasgow, Edinburgh, Aberdeen, or across the border into England for treatment.  Our research found families in Scotland travel an average of 400 miles every month to get to treatment which is 50 miles higher than the rest of the UK, adding up to around £250 every month. 

UK Government recently announced a dedicated £10 million Travel Fund for all under 25s with cancer to support with the cost of travelling to treatment. While this announcement is game changing for families in England, we’ve heard loud and clear from from families in Scotland who are concerned about the travel costs they face, and the need for improved support, so they don’t get left behind. 

We call on the next Scottish Government to expand the Young Patients Family Fund eligibility criteria, so it is open to all children and young people with cancer in Scotland. 

Travel costs are just one part of the financial picture for children and young people with cancer and their families. Disability benefits like Child Disability Payment and Adult Disability Payment should be there to support families in Scotland in the toughest of times, but shockingly, it takes an average of six months after diagnosis before a payment is made. During this time, additional costs of an average £700 every month add up, forcing many into impossible situations, using their savings, borrowing money or cutting back in essential areas. A six-month wait is too long. 

We ask the next Scottish Government to make sure children and young people with cancer and their families can access welfare benefits immediately following diagnosis. 

But right at the start of their experience, children and young people with cancer are facing a system that isn’t working for them. They’re often visiting healthcare services multiple times before they receive a diagnosis and many report needing to self-advocate to get the right care. All of this can reduce their trust in the system, putting them on the wrong track from the beginning, through no fault of their own. An early diagnosis is important for timely and effective treatment to deliver the best outcomes. 

We call on the next Scottish Government to improve diagnosis experiences for children and young people with cancer. 

Support must begin at diagnosis and importantly, needs to continue throughout treatment and beyond when many struggle with the lasting physical, emotional, financial and social impacts of cancer.  

The next Scottish Government should ensure children and young people with cancer and their families have access to comprehensive, holistic support during and beyond treatment. 

Scotland has made a great start for children and young people with cancer, but without further action it risks getting left behind. Young Lives vs Cancer, and the children, young people and families we support, call on the next Scottish Government to continue to lead by example and prioritise their needs.  

This means delivering the next Cancer Strategy for children and young people, expanding the Young Patients Family Fund, a reformed disability benefits system, an improved diagnosis experience that catches signs and symptoms early, and comprehensive support during and beyond treatment. And it means working in partnership with children and young people with cancer and their families, the NHS, and charities like Young Lives vs Cancer.  

Together, we can transform the future of cancer care and support for children and young people with cancer.