We’re campaigning to improve the diagnosis and care of people diagnosed with Lynch syndrome – a genetic condition that can increase the risk of bowel cancer to up to 80%. Lynch syndrome is estimated to cause over 1,200 cases of bowel cancer in the UK every year, many of them in people under the age of 50.
What are we calling for?
- A national screening and surveillance service delivered through the Bowel Cancer Screening Programme to reduce the vast variation in access, quality and timeliness of regular colonoscopy. This will help to improve the experience and outcomes for people with Lynch syndrome, regardless of where they live.
- A national registry of people with Lynch syndrome. This will increase our understanding of the condition and highlight regional differences in treatment and care.
- Comprehensive UK guidelines that set out best practice for the clinical management of people with Lynch syndrome.
Sign our petition and join our call for urgent improvements to be made to the management of people with Lynch syndrome.
What are the issues?
- Testing for Lynch syndrome: There are an estimated 175,000 people who have Lynch syndrome in the UK but 95% do not know they have it because of a lack of systematic testing. Testing for Lynch syndrome should take place at diagnosis of bowel cancer as the condition can affect treatment options. If positive, people should be referred onwards for genetic testing to confirm their diagnosis. It’s vital to know who has Lynch syndrome so that they, and any potential family members who may have inherited the condition, be monitored for their risk of bowel cancer.
- Managing Lynch syndrome: People with Lynch syndrome should be placed in a surveillance programme to receive regular colonoscopy every 18 months to 2 years. This can help to reduce the chance of dying from bowel cancer by as much as 72%. Unfortunately, we’ve found that people with Lynch syndrome often have to wait unacceptable amounts of time for their routine appointments. As there is no known cure, it is crucial people with Lynch syndrome receive coordinated, timely and high quality care to reduce their lifetime risk of bowel cancer.
What have we done so far?
- Clinical consensus meetings. We’ve held two meetings that have brought together leading clinicians, scientists, researchers, and people with Lynch syndrome to discuss how those with the condition in England can be better identified and managed. In July 2017 we came to a clinical consensus that a national approach to surveillance is needed for this group to reduce the local variation in access to colonoscopy across the country. We believe this would best be operated through the Bowel Cancer Screening Programme.
- A nationwide survey of people with Lynch syndrome. We’ve published a survey to improve our understanding of the patient experience of being diagnosed and managed for Lynch syndrome. Results showed people were experiencing delays across the pathway from diagnosis to subsequent follow up monitoring.
- Actively engaged with the NICE guideline development process on molecular testing for Lynch syndrome and were represented on the Committee by our Expert Adviser, Dr Kevin Monahan.
- Freedom of Information request. Our Freedom of Information requests from 2015 and 2016 identified how many hospitals follow Royal College of Pathologists Colorectal Cancer dataset guidelines to test all patients diagnosed with cancer under the age of 50 for Lynch syndrome at diagnosis. In 2016 we found that 30 per cent of hospitals still do not carry out the tests.
How can you get involved?
- Sign our petition and join our call for urgent improvements to be made to the management of people with Lynch syndrome.
- Share your story. Personal stories 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.
- Read our clinical consensus and our call to close the screening gap