NHS is failing to screen patients who are at high risk of bowel cancer

Today we, and ten leading clinical experts in bowel cancer and genetics, are calling on the national Bowel Cancer Screening Programme (BCSP) to take responsibility for screening people with Lynch syndrome for bowel cancer in England. Lynch syndrome is an inherited genetic condition that can increase the lifetime risk of bowel cancer to up to 80%. Currently, the BCSP only screens healthy individuals age 60-74 every two years.

Each year 1,200 cases of bowel cancer – the UK’s second biggest cancer killer - and 1,000 other cancers are caused by this genetic condition, many of them are younger people under the age of 50. If you have Lynch syndrome there is a 50 per cent chance that your children, brothers and sisters also have the condition meaning whole families can be devastated by cancer.

There is no cure for this genetic condition, but research shows that regular colonoscopy screening can help to reduce the risk of dying from bowel cancer by as much as 72% through detecting it early, when it is most treatable and potentially curable. The British Society of Gastroenterology recommends colonoscopy screening every 18 months to two years.

Currently the screening of people with Lynch syndrome is managed by their local hospital but this has led to a postcode lottery across the country, resulting in unacceptable waiting times and poor quality care. Our survey found that 49% of people with Lynch syndrome experienced delays to their planned colonoscopy appointment date, with 78% waiting more than six weeks. Furthermore, many endoscopy units in England do not meet standards for good quality care.

Five generations of Lynne Daykin’s family have been devastated by bowel cancer because of Lynch syndrome. Lynne, 64 from Nottingham says: “Twelve people over five generations of my family, including me, have been devastated by bowel cancer because of Lynch syndrome.

“The problem now is that my adult children are not being regularly screened to reduce their risk of bowel cancer. For the past six years they have had to chase their local hospital for a colonoscopy appointment. Having Lynch syndrome is stressful enough; we don’t need the extra hassle of chasing appointments.”

We organised a clinical consensus meeting with 10 leading experts in the field of bowel cancer and genetics to improve the quality of care and timeliness of colonoscopy screening for people with Lynch syndrome. It was agreed the Bowel Cancer Screening Programme (BCSP) should extend their service to patients living in the country who have Lynch syndrome so they also receive the same high quality service.  

The BCSP would significantly reduce the vast variation in access, quality and frequency of colonoscopy screening:

1. The BCSP would ensure an efficient, consistent and streamlined approach to colonoscopic management across the country.
2. The BCSP has robust quality assurance mechanisms in place.
3. There are strict waiting times and Key Performance Indicators (KPIs) established in the BCSP. 
4. A precedent has already been set by the NHS Breast Cancer Screening Programme, which routinely tests healthy women for risk of cancer also manages the screening of those with a known genetic mutation (BRCA 1 or 2) that increases the risk of breast cancer.

Professor Sir John Burn, Professor of Clinical Genetics, Newcastle University, and Chair of the Clinical Expert Group, says: “If we are serious that no one dies from bowel cancer, we need to start with those that are at high risk of developing the disease. We urge the Bowel Cancer Screening Programme (BCSP) to lead the way and take responsibility for screening the small number of people with Lynch syndrome living in England. They already have the infrastructure in place and so there’s no need to reinvent the wheel. This is a simple and cost-effective solution to a big problem.”

Deborah Alsina MBE, Chief Executive of Bowel Cancer UK, says: “We hear from families every day that their colonoscopy screening appointment is delayed, in some instances for more than a year.

“We need to close the screening gap and that’s why we’re calling on the BSCP to extend their service to screen people with Lynch syndrome for bowel cancer. We want to work with them to make this a reality. If we get this right we have a real opportunity to detect more cancers early and improve survival rates. Without major changes to the current system generations of families will continue to be devastated by cancer, which may lead to tragic and preventable deaths.

“There is growing public support for our recommendation.  Over 3, 000 people have signed our petition calling for urgent improvements to the management of people with Lynch syndrome. They simply cannot continue to be ignored any longer.”

• Add your name to our petition to help end the Screening Gap for people with Lynch syndrome.
• Read the clinical consensus on improving the screening and surveillance of people with Lynch syndrome
• Read Lynne Daykin’s blog on the devastating effect Lynch syndrome can have on a family
• Watch Dr Fiona Lalloo’s videos on Lynch syndrome
• Find out more about our Lynch syndrome campaign