From Bowel Cancer UK: Read more here
Our briefing highlights the lack of surveillance screening for younger people at higher risk of bowel cancer.
Genetic factors contribute up to 30% of bowel cancer cases, an estimated 8,000-12,000 cases each year.
Genetic factors mean a strong family history of bowel cancer, or genetic conditions such as familial adenomatous polyposis (FAP) or Lynch syndrome. People with long-term inflammatory bowel disease are also at higher risk.
People in higher risk groups are likely to develop bowel cancer much younger than the general population. Clinical guidance recommends that people in high-risk groups should be in a surveillance screening programme, which is proven to reduce deaths in these groups.
Recent evidence shows that:
- People diagnosed are not routinely tested for genetic conditions, and only a third of centres identify and manage high-risk patients through a registry.
- Even when they are in a surveillance programme, patients may have to wait a long time for their screening colonoscopy. Thirty-five hospitals offering a surveillance programme have a waiting time of over 26 weeks (6 months) for people at higher risk.
- More than half of centres do not have a programme for managing high-risk groups.
- 64% of clinicians believed that someone else should be carrying out the surveillance work.
Our briefing, “Never too young: Supporting people at higher risk of bowel cancer”, has five recommendations to improve services for people in high risk groups:
- Better surveillance screening for those at high risk of developing bowel cancer.
- Clear information should be made available for GPs and the public on who may be at higher risk of bowel cancer.
- As people with a genetic condition such as Lynch syndrome typically develop bowel cancer at a young age, anyone diagnosed with bowel cancer under the age of 50 should have a genetic test for these conditions, so they and their families can be included in a surveillance programme.
- Adequate endoscopy service capacity to ensure that people at high risk do not have a long wait for their colonoscopy.
- Designation of a single named lead person in each hospital trust with responsibility for a registry of people at higher risk.
Full details of our findings and recommendations are in our full report available here.