Success Charity is drawing attention to the urgent needs of a small but highly vulnerable group of children with rare pituitary tumours, it describes as the “Cinderella” children of cancer care.
Around 32 children a year in the UK are diagnosed with these low-grade but potentially life-altering tumours affecting the pituitary gland, the primitive endocrine mastergland controlling vital unconscious, developmental and hormonal processes. For more than two decades, clinical experts have warned that these children lack access to specialist surgery, age-appropriate endocrine care, medications approved in adults and coordinated national lifelong treatment pathways.
Working with clinicians, parliamentarians and NHS England, Success Charity is calling for the establishment of dedicated national centres to deliver specialist, evidence-based care – similar to successful models already in place for other rare childhood cancers.
Families attending the charity’s annual conference include children who have faced long delays for surgery and limited access to proven treatments, leading to worsening health and long-term complications. As Dr Spoudeas has noted, these children are often “invisible” within oncology services.
Success Charity believes every child with cancer deserves equal access to high-quality care, regardless of location or system barriers.
These issues will be a central focus of the 9th Annual Success Charity Conference on 28 February, bringing together families, clinicians, researchers, policymakers and NHS leaders.
The conference will feature updates on the NHS Cancer Plan, progress on Success Charity’s work with NHS England, family perspectives, and expert discussions on recovery, rehabilitation and lifelong outcomes.
ENDS
Notes to Editors:
- Success Charity supports survivors of childhood brain tumours and their families across the UK.
- 400 children and young people are diagnosed with a brain tumour in the UK every year. 4 of 5 survive and live long lives with largely unrecognised forms of brain injury.
- Success advocates for NHS service reform to include a parallel recovery pathway from diagnosis, to “complete the cure”.
- More information about the charity can be found at: successcharity.org.uk