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The new NICE guideline for Lynch syndrome testing explained · Bowel Cancer UK


Sign the Lynch Syndrome petition now!

Bowel Cancer UK

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Here’s the link to the petition


Caroline’s story

“Three generations of my family were devastated by cancer because of Lynch syndrome – my grandma, my mum, auntie and two uncles. I was also diagnosed with bowel cancer.

Because of my family history I should have been tested for Lynch syndrome sooner and my bowel cancer might have been prevented.

The silver lining is that now I know about the condition, I have a better chance of making sure my children don’t have to go through what I went through.” Read Caroline’s story in full

What’s the problem?

Generations of families like Caroline’s are being devastated by cancer because of an inherited, genetic condition called Lynch syndrome that dramatically increases the risk of cancer.

There are an estimated 175,000 people in the UK that share Caroline’s condition – but hardly any of them know they have it because people aren’t being tested. It’s vital they’re identified, so they can be regularly monitored to reduce their chance of dying from bowel cancer.

But our new findings reveal a worrying picture of delayed diagnosis, poor monitoring and unacceptable waiting times. A lack of leadership, locally and nationally, means no one is taking responsibility to fix these problems.

The buck must stop with the UK’s health ministers – call on them to stop cancer devastating families like Caroline’s.

What needs to happen?

We’re calling on UK Health Ministers to urgently step in and take responsibility for improving the identification and management of Lynch syndrome by:

  • Developing a national registry of people with Lynch syndrome to improve our understanding of the condition.
  • Establishing a national surveillance programme to improve access to regular colonoscopy.
  • Developing comprehensive guidelines that set out how people with Lynch syndrome should be managed.

– See more at:

Every new colorectal cancer to be tested for Lynch Syndrome -from NICE

Great news, NICE – that’s the organisation that provides clinical guidance to the NHS – has recommended that everyone diagnosed with bowel cancer should be tested for Lynch syndrome. It’s a genetic condition that increases the risk of cancer by up to 80%.
The recommendation will go a long way to addressing the problem of identifying tens of thousands of people who don’t know they have Lynch syndrome and can’t take steps to reduce their risk of cancer.
The campaign’s working but we can’t stop here, urgent improvements are necessary to ensure that all hospitals are testing and that people with Lynch syndrome get the right care.
Can you take two minutes to urge your MP to take action?
1) Just add your postcode here to contact your MP.
2) Then download and use our template letter to write your email.
If you get a response from your MP, please forward it to us at
Thanks for helping to make a difference.
Campaigns Team
P.s. Our petition to improve services for people with Lynch syndrome is still live in case you know others who’d like to sign – we just passed 2000 signatures.  Click here if you would like to sign up to this petition!


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