On World Cancer Day (4th February), the UK government announced its commitment to improving cancer care by launching a call for evidence with new National Cancer Plan.
This is an exciting step in the right direction to putting primary bone cancer on the national health agenda.
Our response was shaped by the voices of our community, drawing on insights from our recent Awareness Survey and consultations, findings from our Research Strategy development, our 2020 Patient Survey, and evidence in bone cancer care.
We also worked alongside other member organisations including Cancer 52 and the Association of Medical Research Charities (AMRC).
In summary, we highlighted:
- In cancers like primary bone cancer with vague symptoms and non-specific pathways, prevention is limited. Better use of genomics and targeted initiatives such as the Be Clear on Cancer programme can aid early detection.
- In children and young people, misdiagnosis can include growing pains or juvenile arthritis. Raising awareness of symptoms amongst primary care providers and child-facing professionals (e.g. sports coaches or PE teachers) could also improve recognition.
- The government and NHS England should invest in upskilling staff, prioritising screening, and leveraging expertise from the Children and Young People's Taskforce in future strategies.
- As bone sarcoma affects fewer than 1 in 100,000 people NHS reform must ensure early symptom recognition at all points of care, including repeat presentations or attending A&E. Enhanced referral pathways, AI-assisted systems, and compassionate communication has the potential to improve standard of care.
- Early diagnosis should be considered as diagnosis at a point where a substantial difference can be made to a patient's life. We recommend that faster diagnosis is a reduction of people diagnosed with advanced disease, including a goal of at least 75% of children and young people diagnosed within 10 days of initial presentation.
- Despite national sarcoma guidelines, we know from our community about disparities in treatment access and genomic testing. Treatment response and quality of life data must be uniformly recorded and incentives provided through sustainable mechanisms.
- When accessing treatment, patients and their loved ones face high travel costs and complications with support access. The government needs to expand financial and psychosocial support including pre-habilitation, mental health care, and financial assistance to ensure all bone cancer patients receive timely, targeted treatment guided by robust clinical data.
- Holistic support for bone cancer patients is a major unmet need. Delays in diagnosis, toxic treatment, and life-changing surgery highlight the need for better integrated care, comprehensive long-term follow-up, and awareness of late effects.
- Our community faces challenges including but not limited to healthy anxiety, reduced mobility, and depression. Gaps in community-based care knowledge of bone cancer and access to ongoing psychosocial support must be addressed through increased investment in mental health services, tailored treatment, and better links between the NHS and charity support networks.
- The government and the NHS must improve research opportunities for rare and less common cancers by prioritising patient data capture, linking access across health systems including devolved nations, and equitable access to clinical trials.
- Patient involvement must be at the centre of identifying accurate priorities and increase uptake in research opportunities. We want to see patient and public involvement (PPI) in all aspects of cancer research, from early development of new treatments to better coordination in identifying barriers which hold back innovation — including support for researchers themselves.
Primary bone cancer and other rare cancers must be fully integrated into the new National Cancer Plan.
After the consultation period ends, we encourage the government to continue working with charities and patient communities to ensure implementation and evaluation of key recommendations is followed through.
We look forward to continuing our policy work and identifying opportunities for the government to ensure that bone cancer is a priority.