Nicola Crowson from the University of Portsmouth spoke to MPs yesterday (June 11) in the House of Commons for the launch of the most comprehensive review ever undertaken into sarcoma care in the UK, by the charity Sarcoma UK .
Nicola has lived with myxoid liposarcoma for six years, a rare type of cancer that develops in the body's connective tissues, such as muscle, fat, bone, or blood vessels.
She has become a passionate advocate for better diagnosis, treatment, and support for people affected by this rare form of cancer. Her lived experience brings a vital perspective to the national conversation around healthcare inequalities and cancer care reform.
I am an NHS sarcoma patient, but also a mother, an architect, an educator, and someone who's lived through the quiet chaos that comes with a rare cancer diagnosis. Sarcoma didn't just affect my body - it isolated me. Its rarity makes everything harder. The journey is long, expensive, and lonely.
Nicola Crowson, Associate Head (Students) in the School of Architecture, Art and Design
In her address to Parliament, Nicola said: "I am an NHS sarcoma patient, but also a mother, an architect, an educator, and someone who's lived through the quiet chaos that comes with a rare cancer diagnosis. Sarcoma didn't just affect my body - it isolated me. Its rarity makes everything harder. The journey is long, expensive, and lonely."
She recounted how her diagnosis followed a chance mention of a lump behind her knee during a GP visit for her young son. What followed was a slow and anxious wait, marked by delays in appointments and the financial burden of seeking a private diagnosis to expedite care. Eventually diagnosed with a high-grade tumour the size of a mango, she underwent intensive radiotherapy and limb-sparing surgery at The Royal Marsden - a 140-mile round trip from her home.
"The financial cost quickly added up - over £3,500 in travel, hotels, and extra childcare. But the hidden costs were just as heavy: missing birthdays, school pick-ups, days out - missing normality."
Nicola has actively engaged in awareness and fundraising efforts for sarcoma, including participating in the London Marathon 2023 and other events.
Last year she joined the Sarcoma UK State of the Nation Advisory Group, working alongside other patients, clinicians, and researchers to shape the findings and recommendations of the new report.
Reflecting on her role, she said: "It means a lot to be able to target meaningful actions and policies. As a patient, you often feel at the mercy of systems you can't influence. Being part of this review gave me the opportunity to change that - to help turn difficult experiences into a catalyst for real, lasting change."
Published by Sarcoma UK, the State of the Nation review, titled 'Unique Among Cancers', says there are significant inequalities and delays in sarcoma diagnosis and care across the UK, despite consistently excellent specialist treatment once patients reach appropriate centres.
The charity says the findings highlight how thousands of patients are often misdiagnosed or face months-long delays before receiving appropriate care, with rural and low-income communities facing the greatest barriers.
The report includes 16 key recommendations to address these failings - ranging from improved early diagnostic access and investment in research, to better mental health and palliative care support.
Nicola's contribution to the review reflects her commitment to public service and her ability to connect academic insight with personal experience. She does so alongside her role as the Associate Head (Students) in the School of Architecture, Art and Design in the University's Faculty of Creative and Cultural Industries .
Professor Graham Galbraith CBE, Vice-Chancellor of the University of Portsmouth, said: "We are incredibly proud of Nicola. Her strength, insight, and commitment to advocacy embody the values we strive for as a university. Her voice is helping to shape national policy and improve the lives of others facing sarcoma."
The Department of Health and Social Care has committed to examining the review's findings.
Richard Davidson, Chief Executive of Sarcoma UK, said: "Governments have made strong commitments to improving cancer care, but these commitments must extend to everyone, including people with rarer cancers like sarcoma. That is why it is so welcome that the Department of Health and Social Care has agreed to examine our report, as well as its recommendations for how sarcoma treatment and care can be improved."
