Help Shape Colonoscopy Care for People with Lynch Syndrome
- May 25
- 2 min read
Lynch Syndrome UK is supporting a new UK-wide survey to improve colonoscopy experiences and services
At Lynch Syndrome UK, we know that regular colonoscopy surveillance can be life-saving for people living with Lynch syndrome. But we also know that experiences of care can vary widely — from booking appointments and bowel preparation to communication, comfort and follow-up support.
That’s why we’re proud to support a new national research project led by Dr Stephanie Poo and Professor Kevin Monahan at St. Mark’s Hospital and Imperial College London, exploring the real experiences of people with Lynch syndrome having colonoscopy check-ups across the UK.
Why this research matters
People with Lynch syndrome have a significantly increased risk of bowel cancer and are advised to have regular colonoscopies to help prevent cancer or detect it early.
While surveillance is an essential part of Lynch syndrome care, access and experiences are not always consistent. Some people receive colonoscopies through the newer Lynch syndrome NHS Bowel Cancer Screening Programme in England, while others continue to receive care through local hospital pathways or services in Wales, Scotland and Northern Ireland.
This research aims to better understand:
What works well in colonoscopy care
What makes attending easier or harder
Differences in experiences across the UK
How services could be improved for future patients
By listening directly to patients, the team hopes to improve the quality, consistency and reach of colonoscopy services nationwide.
What the survey asks about
The survey has been developed collaboratively with clinicians, researchers and patient representatives from all four UK nations, alongside Lynch Syndrome UK.
It explores experiences including:
Booking appointments
Access to services
Communication with healthcare teams
Bowel preparation
Experiences before, during and after colonoscopy
The questionnaire takes around 15 minutes to complete.
Who can take part?
The survey is open to adults aged 18 or over who:
Have a confirmed genetic diagnosis of Lynch syndrome (MLH1, MSH2, MSH6, PMS2 or EPCAM)
Have had a colonoscopy in the UK
Are able to read and understand English
Importantly, the researchers are also keen to hear from people who have decided not to attend regular colonoscopy surveillance, so they can better understand barriers and concerns around participation.
Why Lynch Syndrome UK is supporting this research
At Lynch Syndrome UK, we hear regularly from people whose surveillance experiences differ significantly depending on where they live or how their care is organised.
We believe that patient voices must shape future services. Research like this helps ensure that lived experience is recognised alongside clinical evidence — improving not only outcomes, but also the quality and humanity of care.
We are pleased to support this work alongside national collaborators and patient representatives across the UK.
Interested in taking part?
You can find out more about taking part in the patient summary and participant information sheet below.
For further information, or to take part in the survey, please contact:
Dr Stephanie Poo sp25@ic.ac.uk
