Lynch Syndrome UK Press Release

22 October 2016

Families saved from cancer – NICE recommend all patients with bowel cancer are tested for Lynch Syndrome


On Friday 21st October, the National Institute for Health and Care Excellence announced draft guidance recommending that everyone who is diagnosed with bowel cancer should be tested for Lynch syndrome. Lynch syndrome (LS) is a genetic condition that increases the risk of bowel cancer and several other cancers including uterus and ovary. 


Approximately 175,000 people in the UK have Lynch syndrome but 95% of them do not know they have it.  It is hoped that by checking all patients who have bowel cancer for LS, many new families will be identified to enable them to have screening to prevent people getting cancer.  People with LS have a 50% chance of passing on their gene mutation to each child so the more new families that can be identified, the more help can be given to keep such families cancer-free.

Lynch Syndrome UK is the only UK based registered charity which provides support and advice to people with Lynch syndrome and was part of the NICE team that developed the draft guidance.  The consultation document from NICE is the first step that brings this very important issue to the attention of the public. We hope that many more people will be identified as a result of this initiative and genetic counselling will be offered to their families.

Pauline Skarrott (retired GP) , Trustee of Lynch Syndrome UK and part of the NICE group who developed the guidance said today,

'This draft guidance is greatly welcomed by the families who are part of Lynch Syndrome UK.  Lives will be saved and future generations protected.  One of our charity's main aims is to raise awareness of Lynch Syndrome and we believe this guidance will go a long way in achieving this.  We will continue to support NICE and other organisations to improve the outcomes for our families. The final guidance will be published in January 2017.'


Contact number for media enquiries: Helen Bufton/Tracy Smith  Tel: 07977 907135  /07792502125




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