Campaigning in Scotland

Every year, over 1,000 people are diagnosed with a brain or CNS tumour in Scotland. We campaign in Scotland through a variety of means to ensure that our community’s voice is heard. 

As health is a devolved matter, we work with the Scottish Government to improve all parts of the patient pathway for those affected by brain tumours.

Our work is guided by the Scottish Steering Committee, which meets regularly to discuss how we can create the changes we need to see in Scotland.

The Scottish Steering Committee

Founded in 2018, the Scottish Steering Committee (SSC) is a voluntary group that includes people living with a brain tumour, who have a loved one who’s been personally affected or work in neurology in Scotland.

The SSC was established to drive our policy, campaigning and influencing work in Scotland. It now includes 14 official members and more advisory members.

Membership is renewed every two years and alongside this, every two years the SSC’s objectives are reviewed, and potentially new ones are decided upon by members.

Charity alliances we’re part of in Scotland

The Less Survivable Cancer Taskforce Scotland working group

We are a founding member of The Less Survivable Cancers Taskforce (LSCT). The LSCT represents the ‘less survivable cancers’, lung, liver, brain, oesophageal, pancreatic and stomach, all with a five-year survival rate of less than 20% following decades of underfunding. 

The Taskforce has a Scottish working group that focuses on working to improve the lives of those diagnosed with a less survivable cancer in Scotland.  

As a Taskforce, we are working on holding the Scottish Government to account on their commitment within the Scottish Cancer Strategy to: 

• improve cancer survival, particularly among the currently less-survivable cancers 
• improve earlier and faster diagnosis with a particular focus on less survivable cancers.

Scottish Cancer Coalition

The Scottish Cancer Coalition was founded in 2003 and includes 31 members. 

The coalition brings together all different types of cancer charities who work across Scotland to make sure we are working together on some of the bigger issues that affect all cancers 

We are also part of the Earlier and Faster Diagnosis subgroup within the Coalition, where we look to work together to achieve a more timely diagnosis for all cancer types. 

Neurological Alliance of Scotland

The Neurological Alliance of Scotland is an umbrella body of organisations that represent people with a neurological condition and those who support them. As part of this coalition, we work together to improve the care and support that people with neurological conditions receive. 

In partnership with members, the Alliance informs policy, raises awareness and supports improvements in services. It aims to make sure that the experiences of people with neurological conditions – and those around them – are recognised. 

What we’ve achieved in Scotland

• In 2017, we worked together with Alexander Stewart MBE MSP to secure a debate within the Scottish Parliament for the need for greater awareness of brain tumours and their devastating effects. 
• In 2018, the Scottish Steering Committee was established. 
• In 2021, we met with the then Cabinet Secretary for Health & Social Care, Humza Yousaf to discuss how the Scottish Government can help improve diagnosis times. 
• In 2021, we also launched our Scottish manifesto, Driving Progress in Scotland and asked SMP candidates to pledge their support
• In 2023, the Scottish Cancer Strategy also recognised that not all cancers are staged and for the need to create proxy measures to identify progress for these cancers as a result. 
• In 2023, the Scottish Cancer Strategy noted the importance of improving diagnosis times for less survivable cancers.