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%. Lynch syndrome is estimated to cause over 1,100 cases of bowel cancer in the UK every year, many of them in people under the age of 50.
Findings from our report reveal a worrying picture of delayed diagnosis, poor monitoring and unacceptable waiting times for this high risk group. A lack of leadership, locally and nationally, means no one is taking responsibility to fix these problems.
Sign our petition and put pressure on UK health ministers to step in and take responsibility for people with Lynch syndrome and their families.
What are the issues?
Identification: It’s estimated that there are 175,000 people who have Lynch syndrome in the UK but fewer than 5% of people have been identified, leaving 95% not knowing they are at increased risk of developing cancer over the course of their lifetime. This is due to a lack of systematic testing. Furthermore, our survey found that 30% of respondents waited four months to over a year for their diagnosis and only 9 were aware of having a molecular screening test for Lynch syndrome before starting treatment for bowel cancer. It’s important this test takes place at diagnosis, as Lynch syndrome can affect treatment options for bowel cancer.
Management: 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%. But right now there is an inconsistent approach to the local management of people with Lynch syndrome and a lack of local leadership. Our report found that people with Lynch syndrome who require coordinated, timely and high quality care to reduce and manage their chance cancer often fail to receive it. 49% of our respondents had experienced delays to their planned colonoscopy appointment, with 78% waiting more than 6 weeks beyond their planned procedure date.
What are we campaigning for?
- A national registry of people with Lynch syndrome. This will increase our understanding of the condition and highlight regional differences in treatment and care.
- A national surveillance programme to reduce the vast variation in access, quality and timeliness of regular colonoscopy
- Comprehensive UK guidelines that set out best practice for the clinical management of people with Lynch syndrome
What have we done so far?
- A nationwide survey of people with Lynch syndrome. We’ve carried out 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
- 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 29 per cent of hospitals across the UK do not test patients under the age of 50 diagnosed with bowel cancer. Even those that do carry out the test, just over half (56 per cent) perform the test automatically. 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.
- Clinical expert meeting. In March 2016 we brought together 35 of the leading clinicians, scientists, researchers, and people with Lynch syndrome to discuss how these individuals can be better identified and managed.
How can you get involved?
- Sign our petition and put pressure on UK health ministers to step in and take responsibility for people with Lynch syndrome and their families.
- Become a campaign supporter and help us lead the change for 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.