The launch of a campaign to raise awareness of one of the UK’s most underfunded cancers took place at the House of Lords last night.
Study for Survival, the UK’s first comprehensive mapping of the views and experiences of people living with pancreatic cancer, was launched by Pancreatic Cancer UK to coincide with Pancreatic Cancer Awareness Week next week (22-28 November).
Pancreatic cancer has the worst survival rate for any cancer – 82% of people diagnosed with the disease in the UK die within a year.
Study for Survival aims to identify what needs to happen in the next five to ten years to improve survival rates and quality of life for all those affected by pancreatic cancer.
Phase 1 of the study has highlighted a concern within the pancreatic cancer community about a lack of progress on every front from diagnosis to treatment, research and patient support – and a view that pancreatic cancer remains an underfunded and overlooked cancer.
One fundamental issue is the lack of available treatment options for those diagnosed with pancreatic cancer.
Professor Sir Mike Richards CBE, National Clinical Director for Cancer, commented: “Too often pancreatic cancer is viewed as a hopeless cause. I support the efforts of Pancreatic Cancer UK through the launch of the Study for Survival to facilitate real change in the pancreatic cancer landscape and to challenge this notion.”
Participants in the study also raised a number of other concerns relating to:
- The challenge of diagnosis, including delays in investigations for patients who present either in primary care or through emergency hospital admission.
- Delayed referral of some patients from local to specialist centres.
- Lack of adequate information provided for some patients referred to Multi-disciplinary Teams (MDTs) at specialist centres, e.g. lab and test results.
- Poor communication and coordination about patients between some local and specialist centres.
- Lack of understanding/knowledge amongst some healthcare professionals about existing pancreatic cancer guidelines.
- Poor communication to patients and their families and carers about diagnosis.
- Lack of clinical trials and patient access to those that do exist.
- Lack of patient access to Clinical Nurse Specialists (CNSs).
- Poorly coordinated palliative care.
- Lack of a UK pancreatic cancer research strategy.