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 over 1,200 cases of bowel cancer 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 200,000 people in the UK with the genetic condition 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. However we’ve 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 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 are we campaigning for?
- All bowel cancer patients to be tested for Lynch syndrome, at diagnosis, in line with clinical guidance. Health bodies must work together to ensure hospitals have the funding and staff to carry out testing.
- A national screening and surveillance programme 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.
What we have done so far?
- 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. Find out more about our week of action today.
- Wales is leading the way in testing for Lynch syndrome. After years of campaigning in partnership with expert clinicians and scientists,Wales have committed to a national system of testing all bowel cancer patients for Lynch syndrome, in line with clinical guidelines – the first in the UK to commit to this. We must now make testing a reality 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 are testing all bowel cancer patients for features of Lynch syndrome at the time of diagnosis. We found only 17% of hospitals in the UK are testing all bowel cancer patients at diagnosis. 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. 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. This would help to reduce the local variation in access to colonoscopy across the country. Read our clinical consensus here.
- 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.
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.
- Call on your MP to become a Bowel Cancer Champion and 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.