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 over 175,000 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.
- 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 and testing can be offered to immediate family members.
- A surveillance programme delivered through each nation's 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.
What have we done so far?
- Pledge to test. Wales led the way in committing to testing for Lynch syndrome so in June 2019, we took our #TimetoTest petition to UK governments in England, Scotland and Northern Ireland calling 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 10 leading experts in the field of bowel cancer and genetics to reach an agreement on how the management of people with Lynch syndrome could be improved in England. The group agreed that the national Bowel Cancer Screening Programme (BCSP) should extend their service to those who have Lynch syndrome so they can also receive the same high quality screening service as the eligible asymptomatic 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.
- We're bringing together the voices of people affected by bowel cancer. Add your name to the campaign to tell political parties urgent action is needed.