We're campaigning to improve the diagnosis and care of people with Lynch syndrome, a genetic condition that can increase the lifetime risk of bowel cancer to up to 80%. Lynch syndrome is estimated to cause around 3% of bowel cancer cases in the UK every year, many of them under the age of 50.
What are the issues?
- Testing for Lynch syndrome: Research shows there could be between 175,000 to 200,000 people in the UK with the genetic condition but the majority don't know they have it because of a lack of systematic testing. Testing for Lynch syndrome should be offered at diagnosis of bowel cancer as the condition can affect treatment options. However, we've previously found that many hospitals simply don't have the funding or enough staff to carry out the test in all bowel cancer patients.
- Testing for family members (cascade testing): Lynch syndrome runs in families, therefore if a person has the condition there is a 50% chance that their children, brothers and sisters also have it. To find the missing 95% of undiagnosed people with Lynch syndrome, family members of patients who test positive for the condition should be offered the same genetic tests. This means those who have the same genetic condition can be offered life-saving interventions.
- Managing Lynch syndrome: People with Lynch syndrome should be placed in a screening or surveillance programme to receive regular colonoscopy every 18 months to two years. This can help 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's no known cure, it's crucial people with Lynch syndrome receive coordinated, timely and high quality care to reduce their lifetime risk of bowel cancer.
What are we campaigning for?
- All bowel cancer patients to be offered testing for Lynch syndrome, at diagnosis, in line with clinical guidance through a national screening programme. This will ensure that all patients diagnosed with bowel cancer are offered genetic testing. Testing can then be offered to immediate family members.
- A high-quality colonoscopy surveillance programme delivered through each nation's bowel cancer screening programme to reduce the differences in access, quality and timeliness of regular colonoscopies. 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.
Above: A map of health authorities in the UK showing how effective their Lynch syndrome testing and management services are, from our January 2024 report. This was measured by looking at different areas, including how well they followed official guidance, whether they offered regular surveillance colonoscopies, if they offered genetic counselling and whether they offered testing for family members. You can find the full map and key on page 16 of our January 2024 report.
What have we done so far?
- In January 2024, we wrote to Integrated Care Boards (ICBs) along with our key partners. We highlighted how important it is to keep funding Lynch syndrome services. This will make sure that progress from the NHS England Lynch Syndrome Transformation Project is not lost when it ends in March 2024.
- Freedom of Information (FOI) request. In April-July 2023, we carried out an FOI request to find out if health authorities across the UK were implementing clinical guidance. We also investigated whether comprehensive support and care for people with Lynch syndrome was offered. We found that 83% of health authorities implement clinical guidance; Yet, half of health authorities who responded, reported that family members of people with Lynch syndrome aren’t offered letters they can take to their GP, which is one route to accessing genetic counselling and testing. Read our full report here.
- Pledge to test. Wales led the way in committing to testing for Lynch syndrome. In June 2019, we took our #TimetoTest petition to UK governments in England, Scotland and Northern Ireland. We called for better identification and management of people with Lynch syndrome. All UK nations have committed to testing for Lynch syndrome. We must now ensure this commitment is fulfilled across the UK.
- Freedom of Information (FOI) request. In January 2018 we carried out an FOI request to find out if hospitals across the UK were testing all bowel cancer patients for features of Lynch syndrome at the time of diagnosis. We found only 17% of hospitals in the UK were testing all bowel cancer patients in line with clinical guidance. Read our full report here.
- Raising the issue locally. Thousands of campaigners used our interactive map to find out if their local hospital was testing in line with guidance and took action by asking their political representatives to raise this issue with local health bodies.
- Clinical consensus meeting. We brought together experts to reach an agreement on how to improve the management of people with Lynch syndrome in England. The group agreed that the national Bowel Cancer Screening Programme (BCSP) should extend their service to those who have Lynch syndrome. Then they can also receive the same high quality screening service as the rest of the eligible population. Read our clinical consensus here.
How can you get involved?
- Share your story. Personal stories help us highlight the experience of people affected by Lynch syndrome, raise awareness of the condition and can encourage and inspire people to take action and help make real change happen. We use stories in the media, on our website, on social media and in our materials.
- Join #teambowelcancer and become a campaigner to help us raise bowel cancer issues in Parliament.