A research agenda driven by patients – Sarcoma UK to fund £2 million this year

by Sorrel Bickley

This year will mark the milestone of a total of £10 million (€11.5 million) having been invested in research funding by Sarcoma UK since 2009. This is an incredible sum to imagine looking back to the beginnings of the charity when a few passionate people sat around a kitchen table and decided they wanted to make a difference.

Funding world-class research – a fundamental pillar   

Today, Sarcoma UK is proud to be the National UK charity dedicated to a vision where everyone affected by sarcoma cancer has the treatment, care and support they need. Funding world-class research has become a fundamental pillar of what we do. For me as the Director of Research, Policy and Support at the charity – this is the bread and butter of my job.

But something I hold very close to my heart is the understanding that the only way the charity has reached this important research landmark is down to the efforts and energy of people personally affected by sarcoma. The community of sarcoma patients and their loved ones drives every aspect of Sarcoma UK’s work, from shaping the organisation’s strategy, reviewing research proposals, volunteering at events and – most fundamentally – by raising funds. The power of people coming together to help change things for the better is incredible.

Sarcoma shattered our family

I’m both grateful and deeply saddened to be part of the community of people with a personal connection to sarcoma myself. I started my career as a research scientist in a laboratory, working on my PhD in molecular biology. But when I was 24, I received a phone call from my dad telling me that my mum had hurt her arm, and he was taking her to hospital for a check. After this, things changed fast. She had some scans and tests, and we discovered that she had a large tumour in her abdomen that had already spread to a bone in her arm and to her lungs. The doctors told us it was a rare cancer and that it was too late for any treatment. She died within a few weeks.

This shock shattered our family. I never had the chance to say a real goodbye to my mum, and along with my dad and two sisters, I found it almost impossible to process what had happened. The first time I heard the word sarcoma was when we collected my mum’s death certificate, but it took me years to really be ready to think about what sarcoma was, or whether there was something I could do about it.

I went back to my PhD research and over the next couple of years I finished up my project and started getting involved in research communication. I had always enjoyed speaking about my research and bringing science to life for others, and this led me to a job at a charity called the MS (multiple sclerosis) Society. I worked closely with lots of people affected by MS, giving talks about research breakthroughs and working on explaining the facts behind the headlines people see in the newspaper. Over time I got more involved with research funding at the charity and working with scientists and healthcare professionals.

During this time of course I thought a lot about my mum, but I didn’t really think much about sarcoma. Until, in 2020 I got a call from a recruiter asking if I was interested in a job at a charity called Sarcoma UK. I wasn’t sure what to say at first and I needed some time to reflect on whether I could work on something that had made such a profound and devastating impact on my life. I still didn’t really talk about my mum or her experience very much, even with the people closest to me. But in the end, I kept coming back to the idea that I don’t want others to go through what our family did. I can still remember getting emotional in my job interview and saying that if I could be a part of changing the picture, then I wanted to be involved.

Bringing about real change for patients & families

I joined Sarcoma UK in February 2020 to lead the charity’s research and policy programmes as part of a staff team of around 20 people. I had a wonderfully warm welcome to the charity, but I had to adapt fast. The covid pandemic quickly made it very difficult for us to raise money with things like the marathon being cancelled, and I had to make some difficult decisions about research investment and where to save money. But we pulled together, and the sarcoma community responded incredibly, moving support group meetings to Zoom, hosting community quiz nights and doing virtual fundraising challenges. Thanks to this amazing effort, the charity came out of the pandemic stronger than ever and we launched a new strategy to shape our work over the next five years. A big part of my job now is to bring that strategy to life.

I work with a fantastic team who have a shared goal of improving the lives of people affected by sarcoma. This includes running the Sarcoma UK support line, which offers friendly, confidential and free advice from healthcare professionals with expertise in sarcoma. We speak to around 80 new people each month over the phone or by email, including sarcoma patients themselves, their loved ones and healthcare professionals. The charity also runs an accredited information programme, providing free information resources in print and online for a range of sarcoma subtypes and issues. People with sarcoma have told us that getting information they can trust that is specific to their sarcoma is one of the most important things to them.

Another big priority for people affected by sarcoma is improving education for healthcare professionals about sarcoma. Far too many people experience misdiagnosis or late diagnosis because their symptoms are missed or misunderstood. Through our policy and public affairs and healthcare professional engagement work we’ve launched new education modules and delivered countless talks to family doctors, physiotherapists, nurses and medical students. We also work to improve diagnosis pathways, models of care and access to treatments.

Research funding with impact

We’ve heard consistently from the sarcoma community here in the UK that their biggest priority is making advances through research. I hear so often from people who feel that research gives them hope. They want to see a future where sarcoma might have a less devastating effect on people – diagnosis could be faster, treatments could be more effective, and they could bring fewer harmful side effects. The Sarcoma UK research programme aims to meet these goals and really focus on the research that could make the most difference to people affected by sarcoma. That £10 million of research funding that has been invested to date has led to some truly important discoveries – like why people become resistant to chemotherapy drugs, where new treatments might be found, and exploring how to make current treatments work better. This work has advanced our understanding of sarcoma. It’s helping to make diagnosis more effective and develop ways to improve the lives of people affected by sarcoma.

I’m so proud of what the charity has achieved, but I’m even more excited about what’s to come. This year we plan to fund a total of £2 million of new research projects and we’re developing a brand-new strategy to bring us forwards into the next five years. I feel proud to work as part of the staff team at Sarcoma UK, as well as part of the wider UK sarcoma community and also part of the global patient advocacy network. I’ve often heard it said that sarcoma is a club that no-one wants to be a member of, but working with others to make a difference makes me proud and gives me hope.

Credits:  Photos provided by Sorrel Bickley for publication by SPAGN; Credits for cover photo go to Sarcoma UK.