Why Lynch syndrome needs to be a priority for the next Government

You’ll have seen lately that we’ve been talking a lot about Lynch syndrome; it’s a genetic condition that can increase the risk of bowel cancer and other cancers by up to 80%, as well as many other cancers. But sadly we know that those with Lynch syndrome often face a delayed diagnosis and are kept waiting unacceptable lengths of times for routine appointments.

In the run up to the general election we wanted to share with you our campaign’s progress and set out why Lynch syndrome needs to be prioritised by the next government.   

We’ve been campaigning for better testing for Lynch syndrome since 2013 under our flagship ‘Never Too Young’ campaign. The campaign aims to improve the diagnosis and care of younger bowel cancer patients and those with Lynch syndrome are more likely to develop cancer under the age of 50.

Why is it important?

175,000 people are estimated to have Lynch syndrome in the UK, but less than 5% have been identified because of a lack of systematic testing. As Lynch syndrome is a genetic condition, there’s a 50:50 chance of passing it on to your children, so sadly whole families can be devastated by cancer. Knowing who has Lynch syndrome is important so that people:

• Have access to regular colonoscopy to reduce their risk of bowel cancer
• Encourage immediate family members to be tested

Why the next Government must act

In February this year the National Institute for Health and Care Excellence (NICE) – the body that provides clinical guidance to the NHS published new guidance recommending everyone diagnosed with bowel cancer is tested for Lynch syndrome. This has the potential to identify more people with the condition, but we need to make sure that this is carried out. This is especially important as our research found that 30% of hospitals do not routinely test all those under 50 with a bowel cancer diagnosis as previous guidance recommended 

But it’s not just access to testing that is a priority – more needs to be done to improve their care once they have been diagnosed with the condition. People who have Lynch syndrome should be placed in a surveillance programme to receive regular colonoscopy every 18 months to two years. This can help to reduce the risk of dying from bowel cancer by 72% by detecting it early.

Unfortunately, we found that many people experience delays to their appointments. In some cases people are kept waiting more than six weeks beyond their planned appointment date and this is unacceptable. Currently the management of colonoscopic surveillance is carried out locally, and this has contributed to the creation of an inequitable service and a postcode lottery of care. This means those with Lynch syndrome, who require timely and high quality care to reduce and manage their risk of bowel cancer, often fail to receive it.  To address this variation we need a new approach to surveillance that ensures everyone with Lynch syndrome receives the best care and no one falls through the gap.

But a lack of leadership, locally and nationally, means no one is taking responsibility to fix these problems. That’s why, our petition, is calling on the UK health ministers to step up and take responsibility. 

So what are we doing to ensure Lynch syndrome is prioritised?

Our campaign continues! Evidence from our FOIs and patient survey proved influential in the development of the NICE guidance but there’s still so much to do. Even though this positive step has been made to identify more people in England with the condition, we still need to make sure testing is carried out and that improvements are made to the management of Lynch syndrome. Furthermore, we need to make sure that the other nations follow suit and so our immediate campaign priorities are:  

• We’ll continue the brilliant work of our galvanized supporters who have already been in contact with their MPs to raise the issue and ask for their MPs support.
• We’re calling on Scotland, Wales and Northern Ireland  to also commit to test everyone diagnosed with bowel cancer for Lynch syndrome
• We’ll be working with clinicians to determine what is needed to provide the best colonoscopic surveillance for those with Lynch syndrome and how this could be adopted nationwide.  
• Putting bowel cancer on the political agenda. Help us by writing to your local newspaper and put public pressure on your Parliamentary candidates to make bowel cancer a priority if elected.  

You’ll no doubt have seen our petition calling on UK Health Ministers to urgently step in and take responsibility for improving the identification and management of people with Lynch syndrome. We’ve had over 2600 signatures - If you haven’t already you can sign up here and if you want further updates on this, and any of our other campaigns why don’t you sign up to be a campaign supporter?

Together we can STOP bowel cancer devastating families with Lynch syndrome.