Calling for improvements to local services on Lynch syndrome awareness day

Today (Wednesday 22 March) on Lynch Syndrome Awareness Day, we’re calling on our campaigners to write to their local MP, MSP or AM to improve local services for people with Lynch syndrome; an inherited condition that can devastate whole families.

Lynch syndrome increases a person’s risk of a bowel cancer diagnosis by up to 80%, as well as increasing the risk of many other cancers.

There are an estimated 175,000 people who have the condition but a staggering 95% of them don’t know they have it because they aren’t being tested. It’s vital people are identified so they can take life-saving steps to reduce their risk of getting cancer, like preventative surgery or regular colonoscopy.

As Lynch syndrome is an inherited condition, there’s a 50:50 chance of passing it onto your children, so sadly whole families can be devastated by cancer.

Fiona Evans from Lincolnshire, found out she had Lynch syndrome and took life-saving steps to reduce her risk of bowel cancer, says:

“I’ve always known that bowel cancer has been in my family; my dad died of bowel cancer at 43, my brother has been diagnosed with bowel cancer twice, my grandad died of bowel cancer at 55, my aunty (dad’s sister) died at 32, and has a son who had had bowel cancer at 40.

“I found out I had Lynch syndrome after a blood test, and although I have not been diagnosed with bowel cancer my risk is high so I decided to remove the part of the bowel that is affected by the gene to greatly reduce the risk of it.

“My worry is that there just isn’t the support for those that have a positive result, and this needs to change urgently. That’s why I’m supporting Lynch syndrome awareness day and campaigning to improve services for people with Lynch syndrome.”

We have a petition calling on UK health ministers to step in and take responsibility for identifying and managing people with Lynch syndrome by implementing the charity’s top three recommendations:

• To develop a national registry of people identified as having Lynch syndrome
• Establish a national surveillance programme to improve the management of people with the genetic condition, and
• Develop comprehensive UK guidelines that set out best practice for the clinical management of people with Lynch syndrome.

Deborah Alsina MBE, Chief Executive at Bowel Cancer UK, says: We hear every day how generations of families have been affected by cancer because they have Lynch syndrome. Hospitals need to ensure they have the capacity and resources to provide people diagnosed with Lynch syndrome the care they need to manage their risk of cancer. This includes access to regular surveillance screening to ensure any new tumours are prevented or detected early.”

• Find out more about Lynch syndrome
• Sign the Lynch syndrome petition
• Write to your local MP, MSP or AM to improve services for people with Lynch syndrome in your local area. Download our template letter and find your representative here
• Read more about our Lynch syndrome campaign
• Share your story of Lynch syndrome