Portsmouth University academic Nicola Crowson addressed MPs at the House of Commons on June 11, describing the ‘quiet chaos’ of living with rare cancer during the launch of a landmark sarcoma care review.
The University of Portsmouth lecturer spoke to parliamentarians on 11 June for the unveiling of the most extensive examination of sarcoma treatment ever conducted in Britain by charity Sarcoma UK.
Crowson, who has battled myxoid liposarcoma for six years, has emerged as a leading voice calling for enhanced diagnosis, treatment and support for those affected by this uncommon cancer that targets the body’s connective tissues including muscle, fat, bone and blood vessels.
Personal Journey Through Rare Cancer
Speaking to Parliament, the Associate Head of Students in the School of Architecture, Art and Design shared her experience: “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.”
Her diagnosis began with a casual mention of a lump behind her knee during a GP appointment for her young child. What ensued was an anxious period of delays and the financial strain of pursuing private diagnosis to accelerate treatment. She was eventually found to have a high-grade tumour measuring the size of a mango, requiring intensive radiotherapy and limb-preserving surgery at The Royal Marsden – involving a 140-mile return journey from 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.”
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Advocacy and Research Involvement
Crowson has participated in numerous awareness and fundraising initiatives, including completing the 2023 London Marathon. She joined Sarcoma UK’s State of the Nation Advisory Group last year, collaborating with fellow patients, medical professionals and researchers to develop the new report’s findings and recommendations.
“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,” she reflected.
Report Findings and Recommendations
The State of the Nation review, entitled ‘Unique Among Cancers’, reveals substantial inequalities and delays in sarcoma diagnosis and treatment throughout the UK, despite consistently outstanding specialist care once patients reach appropriate centres.
The charity’s findings demonstrate how thousands of patients frequently receive incorrect diagnoses or endure months-long delays before accessing proper treatment, with rural and lower-income communities experiencing the most significant obstacles.
The report presents 16 core recommendations addressing these shortcomings, spanning improved early diagnostic access, research investment, and enhanced mental health and palliative care provision.
Professor Graham Galbraith CBE, Vice-Chancellor of the University of Portsmouth, commented: “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.”
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The Department of Health and Social Care has pledged to review the study’s conclusions.
Richard Davidson, Chief Executive of Sarcoma UK, stated: “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.”
