Dr Kevin Monahan explains the importance of providing Lynch syndrome surveillance through the NHS England Screening Programme

Dr Kevin Monahan, consultant gastroenterologist, tells us why the recent adoption of Lynch syndrome surveillance into the NHS England Bowel Cancer Screening Programme is so important for early diagnosis 

Earlier today, NHS England announced that Lynch syndrome surveillance is now being offered as part of the NHS England Bowel Cancer Screening Programme. People with Lynch syndrome, in England, will now receive invites automatically every two years for high-quality surveillance colonoscopies. Dr Kevin Monahan tells us why this development is so important for early diagnosis and improved patient outcomes. 

What is Lynch syndrome? 

Lynch syndrome is a genetic condition which increases a person’s risk of developing bowel cancer to up to 80%, as well as increasing the risk of other cancers. It's estimated to cause around 1 in 30 bowel cancer cases in the UK every year, many of them under the age of 50.  

Although there are about  175,000-200,000 people with Lynch syndrome in England alone, it's estimated that only 5% of people with Lynch syndrome have been diagnosed in the UK.  

Surveillance: challenges and opportunities 

Whilst science hasn’t found a cure for Lynch syndrome, we can reduce the likelihood of dying from bowel cancer for people with Lynch. Evidence shows offering routine high-quality colonoscopies can reduce the risk of dying of bowel cancer by up to 72% because it can detect cancer at earlier stages when it's treatable and curable. 

National guidance recommends a colonoscopy every two years for people diagnosed with Lynch syndrome. Sadly, too many people with Lynch face long waits for colonoscopy – often up to four years. A national survey found that many clinicians agreed that colonoscopic screening and surveillance for people with Lynch syndrome was inadequate, but several were unaware of the national guidance. As a result, people with Lynch syndrome often received inadequate care such as waiting longer than recommended for colonoscopies and receiving incomplete or poor-quality colonoscopies. Huge variability in care and access across the country has also resulted in an inequitable service and a postcode lottery of care.   

To try and identify solutions, Bowel Cancer UK hosted a meeting with clinicians, patients, and representatives from national professional bodies. Collectively we came up with a plan to improve care which we published in the British Medical Journal which included calling for this colonoscopic screening and surveillance programme. 

A well-structured and quality-assured colonoscopic surveillance programme run at a national level has the potential to greatly improve patient outcomes, especially for those at highest risk, by detecting bowel cancer early and reducing the postcode lottery of care. Since 2019, I’ve been working as a Special Advisor to NHS England to make this a reality.  

What will this mean for people with Lynch syndrome? 

For bowel cancer, survival is strongly related to stage at diagnosis: 9 in 10 people will survive if diagnosed at the earliest stage, because they're more likely to be offered curative treatment. However, treatment is less effective and therefore survival is lower as the disease progresses.  

The new national Lynch syndrome colonoscopy programme will be delivered by the national Bowel Cancer Screening Programme. This will have a transformative effect on the care of people with Lynch, improving their experience as well as the prevention and early diagnosis of bowel cancer. It's estimated 300 lives could be saved every year if diagnosis and optimal care for Lynch syndrome are offered in England.  

The change to the surveillance programme will ensure:  

• you're invited for colonoscopic surveillance, on time, every two years 
• you're seen by a specialist team and have a high-quality test performed by an expert colonoscopist 

• a consistent approach across England with equal access for people with Lynch syndrome 

Moving the Lynch surveillance within the national screening programme is the first screening programme of its kind in the world. It has been a privilege to work with NHS England, patients and charities in this exciting project which will see patients with Lynch syndrome qualify for a high-quality, robust, and timely surveillance programme with excellent care for patients at its heart. 

What’s next? 

The implementation of this new colonoscopic surveillance programme will have far-reaching impacts, increasing awareness of Lynch syndrome and ensuring clinical teams will develop a new sense of responsibility for the lifelong care of patients with Lynch. To maximise the impact of this programme it's essential that we identify ‘the missing 95%’ of people with Lynch, and the National Transformation Project created by NHS England aims to do just that. With the combined efforts of the new programme and the National Transformation Project, we're hopeful that more people with Lynch syndrome will be identified and provided nationwide access to the quality care that they need. 

Because this programme is the first of its kind it's likely to be reproduced in clinical care for other diseases, so it's vital that we get it right. It's important we continue to measure the impact of this new programme and ensure there's room for further innovation and future research to deliver personalised care now and in the future.

Dr Kevin Monahan is a consultant gastroenterologist at St Mark’s Hospital in London. He leads a cancer genetics clinic at Chelsea and Westminster Hospital and is an honorary senior clinical lecturer at Imperial College London. He has played a leading role in developing clinical guidelines for the diagnosis and management of Lynch syndrome and the recent adoption of Lynch surveillance into the Bowel Cancer Screening Programme in England. 

• Find out more about our Lynch syndrome campaign 
• Learn more about Lynch syndrome and other genetic conditions that can increase the risk of bowel cancer 
• Read our new report ‘Finding the missing 95%: Unlocking the potential of Lynch syndrome services’ 
• Become a campaign supporter and help us to take action on our campaigns to help us improve early diagnosis and access to best treatment and care for all those affected by bowel cancer
  
  

Pictured above: Dr Kevin Monahan, consultant gastroenterologist.