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Raising awareness about Lynch Syndrome

A Reading man whose wife is being treated for bowel cancer has joined forces with health chiefs to raise awareness of a serious, but little known, hereditary syndrome which can lead to cancer.

Thomas Lanham’s wife Christine was diagnosed with bowel cancer in April 2018 and has successfully undergone treatment at the Royal Berkshire Hospital.

It was whilst he was investigating her illness that Thomas, who lives in Woodley, came across details of Lynch Syndrome. He also discovered that GPs were sometimes using different terms to describe it on patient’s records.

Mr Lanham is keen to standardise the system so that Lynch Syndrome is the wording that’s always used on a patient’s medical records. It’s estimated that around 200,000 people in the UK are affected by the Syndrome, and people with the condition are up to 80 per cent more at risk of bowel cancer. He believes that by standardising the naming of it on records it will alert clinicians at primary care level to the patient’s, and their family’s, potential risks.

And, because Lynch Syndrome is hereditary, the speed and uptake of testing on patient’s siblings could be higher if the Syndrome is written on their records.

To raise awareness of the Syndrome, Mr Lanham is working in partnership with Berkshire West CCG to ensure a copy of a Lynch Syndrome booklet is delivered to every GP in the area.

“When my wife got her diagnosis I started to read up on everything to do with bowel cancer and came across Lynch Syndrome. It’s also known by a number of other terms like hereditary non-polyposis colorectal cancer, and different medical systems around the country use different codes to register the Syndrome so it’s not always being recognised for what it is,” he said.

“People with Lynch Syndrome have a one in two chance of it being passed on to their siblings which is why it’s so important that it’s flagged up on patient’s records.

“Siblings and blood relatives identified as ‘at risk’ are then put on a ‘watch list’ and tested at regular intervals around every two years, so it has really big repercussions for early diagnosis,” said Tom.

“I’m doing this because I think it’s important to get the system streamlined so ‘Lynch Syndrome’ become the standard words used on patient’s records.”

He’s obtained permission from the Royal Marsden Hospital, which produced the booklet, and the charity Lynch Syndrome UK to provide the 350 booklets for the Berkshire West CCG. He’s also liaised with Bowel Cancer UK as part of his research.

Delia Hollingsworth from Lynch Syndrome UK said:
“LSUK would like to thank the BWCCG for recognising the need to provide information and support for both Lynch Syndrome patients/families and medical professionals alike.
“We are delighted that Tom is helping us get the message out about Lynch Syndrome. If any other CCGs would like to follow Berkshire West’s lead, LSUK would be happy to facilitate this.”

Dr Kajal Patel, Berkshire West CCG Cancer Lead, said: “we are happy to support raising awareness of Lynch Syndrome. We also encourage all our residents to take part in the national bowel screening that comes through the post. Bowel cancer picked up early has an excellent prognosis.”

*Tom’s campaign comes weeks after Bowel Cancer UK also stepped up its work to raise awareness of Lynch Syndrome. They presented a petition to Downing Street last month asking for patients to be tested for Lynch Syndrome when they are first diagnosed with bowel cancer.

Picture caption: l-r Tom Lanham joins the CCG’s Emma Sanford and Peter Hunt at the start of the Lynch Syndrome leaflet campaign.

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