Why is patient involvement important?
Patient involvement is about enabling people affected by sarcoma to voice their views, wishes and to contribute to plans and decisions about the work we do, the research we fund and the services we provide.
Our mission inspires us to ensure everyone affected by sarcoma receives the best possible treatment, care, information and support available. To do this, we need you involved in every aspect of our work. Your experience is crucial to ensure our work reflects our vision as an organisation both now and in the future.
What does it involve?
Once you have completed the online contact form, our Patient Involvement Coordinator will get in touch to discuss opportunities to help shape our work at Sarcoma UK.
How do I get involved?
Fill out the quick form below and we will be in touch.
How could I help?
Share your story
We will often use a patient or supporter story on our media platforms or to help raise awareness of sarcoma or support an area of strategic focus.
Sharing your story on social media, newsletter, TV, radio, or amongst friends and family at an event is impactful way to deliver a message.
Research
We know from your feedback that funding world class research to help understand sarcoma and develop kinder, better treatments for sarcoma is the number one priority for many of our supporters: over £5 million has been invested in projects.
In addition to review by scientific experts to ensure we’re funding the projects of the highest scientific quality, the research projects we fund are selected with the help of sarcoma patients and their families, all of whom bring a unique and expert contribution on each project based on their own personal experience of sarcoma.
Information
Sarcoma UK produces information for patients, supporters, and healthcare professionals.
Through our publications, we aim to help people feel more aware of the range of support and treatment options that are available to them, so they can make informed decisions about their own care.
As members of the PIF (Patient Information Forum) tick, we’re keen to make sure our information stays as accurate and up to date as possible, as well as being reliable and trustworthy.
Being a part of our information co-production will help to ensure we’re delivering key information that is both relevant and accurate. This may consist of planning, designing, reviewing, and writing information, as well as identifying any gaps in our provision of information.
Events and Fundraising
Over the years our wonderful supporters have signed up to raise money, raise awareness and give their time and energy in so many ways to help us fund more research and help more people affected by sarcoma.
Have you ever thought about how your unique experience with sarcoma could be used in helping our events and fundraising team in the development, design and process side of their work? Get in touch below for more information.
Strategy and Policy
Our 2021–2026 strategy – Tackling Sarcoma Together – was developed from data and feedback from our most recent supporter survey. Helping us to decide organisational priorities, holding policy makers both in government and within healthcare to account, is an area of involvement where your voice can help us in delivering real change for the better in sarcoma awareness and treatment.
We are regularly updating our policy priorities with input from our supporters, so if you are interested in helping to shape our policy work then please get in touch.
Tell us how you would like to help
I jumped right in! Being a lay reviewer was a fantastic opportunity to have a say for not only ourselves but for all patients and families who are affected by sarcoma. Your feedback truly matters not only to them, but to the folks applying for grants.
Lorraine Love, patient, and lay reviewer
I jumped right in! Being a lay reviewer was a fantastic opportunity to have a say for not only ourselves but for all patients and families who are affected by sarcoma. Your feedback truly matters not only to them, but to the folks applying for grants.
Lorraine Love, patient, and lay reviewer
