Lynch Syndrome
The NHS long term plan sets a target that by 2028, 75% of cancers will be diagnosed at an early stage. One of the ways this will be achieved is through targeted screening and personalised surveillance of those most at risk of developing cancer, such as those with Lynch syndrome.
Lynch Syndrome is a condition which runs through families and increases the risk of a number of tumours in the abdomen.
Through the recent formation of the Genomic Medicine Service Alliances (GMSAs), identifying and supporting families affected with Lynch syndrome is being stepped up both locally and nationally in association with Lynch Syndrome UK.
It is estimated that 1 in 400 people in England have Lynch syndrome (equivalent to around 175,000 people), but just 5% are aware they are living with the condition.
What are we doing in North East London?
We have implemented Lynch Syndrome clinics for eligible patients on the colorectal or endometrial cancer pathways. These clinics went live in January 2023. Patients diagnosed with these cancers and their close relatives may be tested for Lynch Syndrome, which may be a risk factor for other cancers.
How does it work?
There are now five Lynch leads in place in north east London – three from Barts Health (in Newham, Whipps Cross and Royal London hospitals), one from Homerton Healthcare and one from BHRUT. The five leads each work as part of a Multidisciplinary team (MDT).
The Lynch pathway in north east London goes right from the beginning of a colorectal or endometrial cancer diagnosis (where the risk of lynch syndrome is the highest), all the way through to seeing if the patient does have Lynch Syndrome and, if they do, providing regional genetic services. This includes counselling and advice on the risk.
Regional genetic services will offer cascade testing and surveillance if at risk family members are referred. The whole point of this is to help with early diagnosis. If a patient is positive, they will receive a screening and management plan which can help navigate their current treatment options and also look at reducing their risk of future cancer.
More information
Read a story about how a Lynch Syndrome diagnosis has helped a patient.
Find out more on the NHS website about the test which helps diagnose patients who have Lynch Syndrome.
Access some really useful information about Lynch Syndrome, including some videos and an easy read guide, on the Eve Appeal website.
Read an article from Gastrointestinal Nursing on setting up Lynch Syndrome clinics, which features Filipe Carvalho, Nurse Consultant in Colorectal Disease from Homerton Healthcare Foundation Trust.
Training for Primary Care Clinicians
There is free Lynch Syndrome online training for primary care clinicians, provided by RM Partners.
Download a quick guide for GPs.
Training for healthcare professionals provided by RM Partners: colorectal pathway
The training involves watching six short videos which cover all the different stages of the Lynch syndrome pathway, and then completing an online questionnaire to ensure that the clinician has understood correctly the processes and procedures for testing.
Training for MDTs Option 1. Suitable for MDT members to help them identify patients likely to have Lynch syndrome and refer these patients to genetic testing.
Training for MDTs Option 2. Suitable for MDT members to help them identify patients likely to have Lynch syndrome, offer genetic testing to these patients, and manage their care after receiving the genetic test results.
Training for Primary Care Clinicians
The training involves watching short videos which cover all the different stages of the Lynch syndrome pathway, and then completing an online questionnaire to ensure the processes and procedures for testing have been understood correctly. In addition, there is a range of supporting documents to help understand this pathway.
Training for healthcare professionals provided by RM Partners: endometrial pathway
There are four different training courses:
Training for MDTs Option 1. Suitable for MDT members to help them identify patients likely to have Lynch syndrome and refer these patients to genetic testing.
Training for MDTs Option 2. Suitable for MDT members to help them identify patients likely to have Lynch syndrome, offer genetic testing to these patients, and manage their care after receiving the genetic test results.
Training for Primary Care Clinicians
The training involves watching short videos which cover all the different stages of the Lynch syndrome pathway, and then completing an online questionnaire to ensure the processes and procedures for testing have been understood correctly. In addition, there is a range of supporting documents to help understand this pathway.