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Bowel Cancer UK research highlights variation in Lynch syndrome testing

BowelCancerUKHalf of NHS authorities in England, Scotland and Wales do not currently test bowel cancer patients under 50 for possible Lynch syndrome.

Read the data briefing here


Bowel Cancer UK concerned about wide variations in approach to testing for Lynch syndrome among hospitals that do test.

A Freedom of Information (FOI) request by leading charity Bowel Cancer UK has highlighted a wide  variation in tests for Lynch syndrome in bowel cancer patients under 50. Lynch syndrome is an inherited condition which can mean a higher risk of developing bowel cancer. Testing for Lynch syndrome will help identify family members who may have the condition and be at risk of bowel cancer. It can also affect treatment options. Lynch syndrome testing has been shown to be cost effective for the NHS, and is a required reflex test mandated by the Royal College of Pathologists and recommended by the British Society of Gastroenterologists.

Despite this testing is patchy. Just half of the hospital trusts in England that responded to the FOI request said they conduct tests among bowel cancer patients under 50 for Lynch syndrome, 10 of the trusts saying they had no plans to do so.

It’s not just England hospital trusts that are falling short.  More than half of health boards in Wales do not screen patients under 50 with bowel cancer. In Scotland fifty per cent of health boards currently do not follow the guidelines for Lynch syndrome testing set in July last year by the Royal College of Pathologists.  It’s a brighter picture in Northern Ireland where all health and social care trusts responded to say that they perform the test to identify possible Lynch syndrome patients.

The approach to testing is also widely varied among those hospitals which do screening for bowel cancer patients under 50. Testing is part of the core dataset for pathologists and should therefore be carried out automatically (known as reflex testing) for this group of young patients. However many trusts/health boards do not yet carry out this “reflex testing,” as stipulated in the Royal College of Pathologists’ guidelines.  Scotland is in the process of developing a nationwide approach to testing. We believe a nationwide approach would provide the consistency needed to ensure all bowel cancer patients under 50 are systematically tested.

Bowel Cancer UK submitted the FOI request in November 2014 to every NHS trust in England, health board in Scotland and health and social care trust in Northern Ireland to establish the number of trusts/health boards which were implementing the testing for all bowel cancer patients under 50, as mandated by the Royal College of Pathologists.  Lynch syndrome is responsible for around one in 12 cases of bowel cancer in people aged under 50.

Dr Suzy Lishman, President of the Royal College of Pathologists, said, “This research is encouraging as it shows that our guidelines may have had some impact already on testing for Lynch syndrome in patients diagnosed under the age of 50. However, there is considerable variation in the approach to testing.  Testing is now mandated by the Royal College of Pathologists as part of the core dataset for pathology and is a required reflex test for this group of young patients.  We would urge all trusts to perform the screening test for Lynch syndrome in bowel cancer patients under 50  and to adopt a more consistent approach to the testing.”

Deborah Alsina, Chief Executive of Bowel Cancer UK said, “We welcome the fact that some trusts and health bodies have implemented this guidance, but it is concerning that variation still remains. The disparity between hospital trusts and health boards in England, Wales and Scotland is even greater than we anticipated.”

“It’s crucially important that all bowel cancer patients under 50 are offered genetic testing at diagnosis as it could affect both surgical and chemotherapy decision making.   Yet currently it is normally done after treatment has ended, if at all.   Not only that, but appropriate surveillance needs to be arranged as patients with Lynch syndrome are at greater risk of recurrence.  Additionally, as Lynch syndrome is a genetic condition, it can have implications for other family members who may be at risk of developing bowel cancer so family members should also be tested to identify any others with the condition.”

Andy Sutton, the father of teenager Stephen Sutton who sadly died last year from bowel cancer, is all too aware of the need for systematic Lynch syndrome testing.  Andy was diagnosed with bowel cancer twice – in 1989 at the age of 31 and 20 years later in 2009.  It was only second time round that Andy was tested for Lynch syndrome, which was inherited by his son, Stephen.

Andy said, “If I had been genetically tested after the first diagnosis and given regular surveillance screening, it might have been possible to have prevented bowel cancer developing second time around.  That’s why I’m supporting Bowel Cancer UK’s call for everyone under the age of 50 who is diagnosed with bowel cancer to have testing for Lynch syndrome, it had a tragic impact on our family and I want to save others from going through the same experience.”

Dr Kevin Monahan, Consultant Gastroenterologist and General Physician, Family History of Bowel Cancer Clinic, West Middlesex University Hospital says: “Anyone under 50 who is diagnosed with bowel cancer is eligible for testing but it is not always offered. In the first instance, discuss testing for Lynch syndrome with your consultant or your GP”

Bowel Cancer UK is calling for urgent action to be taken:
1. We would urge NHS England and Wales to adopt a similar approach to NHS Scotland and establish a nationwide initiative to ensure a consistent, systematic approach to screening for Lynch syndrome as mandated by the Royal College of Pathologists.
2. All CCGs must commission to reflect the RCPath cancer dataset thus ensuring providers are compliant with this cancer dataset.
3. Accreditation of pathology departments should be linked to compliance with the core minimum dataset which may be used as a metric.


Survey of people diagnosed with bowel cancer under 50 years (from Bowel Cancer UK)


The link to the survey is here:

Nearly two years ago Bowel Cancer UK launched the Never Too Young campaign to increase early diagnosis and improve treatment and support for people diagnosed with bowel cancer under the age of 50. Central to that work was a survey which helped understand the experiences of younger people with bowel cancer.  Some of the campaign successes so far include:

  • Securing funding from the Department of Health for a study at the University of Exeter to support GPs in identifying possible bowel cancer in younger people;
  • Guidance on bowel cancer in people under 50 being included for the first time in the new draft NICE guideline on referral for suspect cancer;
  • A quicker referral pathway for younger patients in Scotland being put into place;
  • Development of a new range of information specifically for younger bowel cancer patients to be launched soon;
  • Increasing interest and debate about bowel cancer in younger patients in the NHS (including amongst commissioners), academics and policy makers.  
  • Lynch syndrome testing to be rolled out at diagnosis for all under 50 patients.
  • A working group to be set up by Public Health England to look at surveillance screening of high risk groups including those with Lynch syndrome who often present under 50.  Progress is being made but clearly there is a long way to go.  Therefore in order to keep building the campaign, Bowel Cancer UK have just launched a new survey looking at what has changed for younger people with bowel cancer over the last two years.
If you have a moment, Bowel Cancer UK would be grateful if you could complete the survey here and share the link on social media if appropriate. It should take no longer than 15 minutes to complete, and your experiences will help Bowel Cancer UK continue to lead the change for everyone affected by bowel cancer.
Thanks again for your support.

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