We’re campaigning to improve the identification and management of people diagnosed with Lynch syndrome – a genetic condition that can increase the risk of bowel cancer by as much as 80% in some cases.
This was a key recommendation from both of our Never Too Young reports and is especially important as people diagnosed with Lynch syndrome usually develop bowel cancer under the age of 50. Lynch syndrome is estimated to cause over 1,000 cases of bowel cancer in the UK every year, many of them in people under the age of 50.
What are the issues?
Identification: Fewer than 5% of people with Lynch syndrome have been diagnosed in the UK. This is because testing to identify people is not carried out systematically across the country despite guidance published by the Royal College of Pathologists that requires all patients diagnosed with bowel cancer under the age of 50 to be tested for the condition.
Management: According to British Society of Gastroenterology guidelines, people identified as having Lynch syndrome should be placed in a surveillance programme to receive regular colonoscopy approximately every 18 months. Regular colonoscopy can help to reduce mortality from bowel cancer in people with Lynch syndrome by as much as 72%. Yet, we know that currently, there are wide variations in the surveillance of bowel cancer patients with a genetic conditions like Lynch syndrome and often people are kept waiting for their planned colonoscopy.
What are we campaigning for?
- Everyone under 50 who has a cancer diagnosis is tested for Lynch Syndrome at diagnosis as per Royal College of Pathologist guidelines
- A positive recommendation from NICE on the use of molecular tests for Lynch syndrome.
- A national approach to managing people at high risk of bowel cancer
What are we doing?
Expert clinical meeting. In March 2016 we brought together 35 of the leading clinicians, scientists, researchers, patients and gene carriers with an expert interest in hereditary bowel cancer and screening to consider how people can be better identified as having a genetic condition, including which tests and when, and how individuals identified with a genetic conditions can be better managed to prevent and detect bowel cancer early.
Freedom of Information request. Last year we carried out a Freedom of Information (FOI) request asking all hospitals in the UK if they follow the 2014 guidance from the Royal College of Pathologists on testing for Lynch syndrome. We found only half of hospitals were carrying out the guidance.
In August 2016 we repeated the FOI request and found that 29 per cent of hospitals across the UK do not test patients under 50 diagnosed with bowel cancer. Even those that do carry out the test, just over half (56 per cent) perform the test automatically as stated in the guidelines. In many cases, hospitals are even delaying the test until after treatment for bowel cancer with only one in 10 (11 per cent) testing prior to treatment. Read the press release
Patient experience survey. We’ve carried out a survey to improve our understanding of the patient experience of being diagnosed and managed for Lynch syndrome. The results will be published in Autumn 2016.
How can you get involved?
- Share your story. Personal stories will help us to highlight the experience of people affected by Lynch syndrome, raise awareness of the condition and can encourage and inspire other people affected. We use stories in the media, on our website, on social media and in our materials.
- Become a campaign supporter and help us lead the change for people with bowel cancer.