Online hub launched to help patients understand Lynch Syndrome

Airedale NHS Foundation Trust and Bradford Teaching Hospitals NHS Foundation Trust have teamed together to launch a digital resource for patients on diagnosing Lynch Syndrome.

Lynch Syndrome is an inherited condition that increases the risk of certain cancers, including bowel, ovarian and endometrial.

Funded by the West Yorkshire and Harrogate Cancer Alliance, the online hub, featured on both Airedale and Bradford Hospital’s websites, uses a series of videos and written information to explain more about Lynch Syndrome and how the trusts test for it.

Patients currently diagnosed with endometrial or colorectal cancer can be sent a link to the information page and videos by their doctor or cancer nurse involved in their cancer care.

Caroline Salt, cancer lead nurse at Airedale NHS FT, said: “Cancer genetic screening is becoming more widely used to identify those patients who may be genetically at a greater risk of developing a cancer.

“The aim of the Lynch Syndrome webpage is to provide support to patients, families and carers, helping them to understand the pathway here at Airedale and how each individual service contributes to the process.

“Our colorectal and gynae clinical nurse specialist teams have been pivotal in setting up dedicated nursing clinics to support patients and I am delighted with the video highlighting the fantastic work they do.”

The site aims to help patients understand the testing process, the options they have and the time they can take in deciding what’s right for them. It also explains some on the implications of a positive test and the work of the genetic counselling service based at Leeds Teaching Hospitals.

Michelle Ratcliffe, lead cancer nurse at Bradford NHS Foundation Trust, said: “We know that any cancer diagnosis can be worrying and finding out you might also be affected by a condition called Lynch Syndrome might only add to these worries, so we want to do our best to explain everything our patients need to know about Lynch Syndrome and the genetic counselling we provide.”

It is estimated that one in 400 people in England have Lynch Syndrome but only 5% are aware that they are living with the condition.  The NHS began rolling out a genetic testing programme for the condition in April 2023.

In December 2024 Airedale NHS Foundation Trust announced that it had won £228,000 in funding from the West Yorkshire and Harrogate Cancer Alliance to improve its cancer care service with digital cancer care platform Careology.

From January 2025, patients at the trust will be introduced to the Careology app to help self-manage and better understand aspects of their treatment, including managing medication, side effects and symptom tracking.