Professor Gary Mitchell and Ms Tara Anderson, School of Nursing and Midwifery, Queen’s University Belfast.
Pancreatic cancer is one of Northern Ireland’s most demanding high-need cancer pathways: outcomes remain poor, deterioration can be rapid, and patients and families often require treatment, palliative, psychosocial and practical support at the same time. This presentation synthesises findings from the QUB/NIPANC Pancreatic Cancer Supportive Care, Education and Psychosocial Research Programme, which is grounded in lived experience and focused on supportive care, psychosocial needs and experiences, education, workforce development and service improvement.
Drawing together evidence across the Programme, the presentation considers what Northern Ireland legislation needs to recognise when defining safe and effective care and candour in a complex cancer pathway. Across patient, family-carer, professional and service-focused work, three issues are consistent. First, pancreatic cancer journeys are time-compressed. People may move quickly from diagnosis to treatment decisions, deterioration, palliative care or bereavement, leaving limited time for information, preparation and relationship-building. Ongoing Northern Ireland research examining the pancreatic cancer journey from pre-diagnosis to survivorship or end of life highlights why continuity, navigation and anticipatory support must be designed into services. Second, family members are not peripheral visitors but active contributors to care. Review evidence, together with ongoing research with family carers, identifies caregiver stress, disrupted daily life and relationships, unmet need, poorer quality of life, increased psychiatric risk and repeated lack of support and signposting. Third, the workforce implications go beyond staff numbers. Safe care in this pathway requires specialist pancreatic cancer knowledge, confidence in honest and compassionate communication, coordination across oncology, surgery, palliative care, specialist psychological and psycho-oncology support, primary care and voluntary-sector support, and awareness of age-sensitive family needs, including adolescents and young people affected by parental pancreatic cancer.
For the proposed Individual Duty of Candour Bill, the evidence highlights communication as an ongoing care process, not a single disclosure event. In pancreatic cancer, honesty, timeliness and compassion matter at diagnosis, treatment decision-making, deterioration, transition to palliative care and bereavement. For the proposed Safe and Effective Staffing Bill, the Programme indicates that workforce planning should account for high-need cancer pathways where clinical treatment, symptom management, emotional support and family support are inseparable. This raises scrutiny questions around specialist roles, care coordination, psycho-oncology access, professional education and regional and socioeconomic differences in access to support.
The presentation concludes with practical policy considerations for strengthening pancreatic cancer supportive care in Northern Ireland through staffing capability, communication standards, family-carer support, service navigation and academic-voluntary sector partnership.
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Policy Briefing
Presentation
Video will be forthcoming