We’re working to improve care, treatment and outcomes for everyone affected by sarcoma.
Our Policy and Public Affairs Team works to improve care pathways, patient experiences and outcomes by influencing the NHS and policymakers across the UK.
We use evidence from people affected by sarcoma and healthcare professionals to show where change is needed and advocate for practical improvements in sarcoma care and treatment.
Recent progress and impact
Our policy and campaigning work is helping to put sarcoma on the agenda and drive improvements for people affected by sarcoma.
Best Practice Timed Pathway
We are helping to develop a Best Practice Timed Pathway for sarcoma in England.
[Policy team to provide further detail on the work and its impact.]
Specialist sarcoma services in Cornwall
We have been working on issues affecting specialist sarcoma services in Cornwall.
[Policy team to provide further detail on what changed and Sarcoma UK’s role.]
Rare cancers policy
We have been working with Dr Scott Arthur MP on the Rare Cancers Act. This work is now reflected in the UK Government’s National Cancer Plan for England.
[Policy team to provide more detail on the outcome and what it means for people with sarcoma.]
VAT on compassionate-access drugs
We have campaigned on VAT on drugs provided through compassionate-access arrangements.
[Policy team to provide the outcome and what difference the change has made.]
Access to ripretinib
Our policy work has supported progress on access to ripretinib in Scotland, and now in England and Wales.
[Policy team to provide further detail on Sarcoma UK’s involvement and the resulting change.]
Access to pazopanib
[Policy team to provide further detail.]
How we try to get change
Our Policy and Public Affairs Team works in a number of ways to make sure the needs of people affected by sarcoma are heard.
We:
- raise awareness of sarcoma and work with partners including Cancer52
- respond to government consultations and raise issues with elected representatives, Ministers and officials
- advocate for better access to clinical trials and innovative treatments
- contribute evidence when NICE and the Scottish Medicines Consortium consider new treatments
- work with healthcare professionals to identify and address issues within specialist sarcoma services
- build the evidence base through research including Unique Among Cancers and the National Sarcoma Survey.
