A HAMPSHIRE mum who suffers from a rare skin cancer that has forced her to have more than 60 operations to remove tumours from all over her body, is calling on health bosses to take action to offer counselling to patients.
Charis McConnell, pictured above with daughter, Lydia, suffers from Gorlin Syndrome, a cancer caused by a genetic mutation that has left her scarred and disabled following multiple operations to have the tumours removed.
Her plea comes as new research reveals that only 15 per cent of patients surveyed were offered counselling during their diagnosis and treatment and 49 per cent admitting that frequent surgeries have a “significant emotional impact”.
The 29-year-old is one of the majority of patients who have never been offered counselling and while thankfully, she has had her family and friends for support, she fears those without that strong network are left isolated and without confidence to get on with their lives.
The survey also found that 97 per cent of patients undergo surgery to remove tumours, with 86 per cent having tumours on their face.
The aim of the research is to raise awareness for the need of greater patient support.
Charis, from Harefield, was first diagnosed with the condition when she was 12 and since then, she has had more than 60 skin tumours removed from all over her body, including her face.
Those taken off her spine when she was 18, left her in a wheelchair for 18 months and she still has to walk with a stick due to the impact of the operation.
She believes the impact of multiple operations, which leave scars, both physically and mentally, mean that patients should be routinely offered counselling to help deal with the condition.
Charis, whose daughter, Lydia, also suffers from the condition, said: “As this is a condition that you grow up with as a child it is assumed we are used to it, but each surgery is different and causes another scar and if a patient hasn’t got support of friends and family, like I have, it can knock your confidence.
“It is disappointing that patients with this condition are not offered counselling and advice because it does have a huge impact on your life and the systems should be in place for patients to be able to self-refer themselves when they feel they need it.”
Margaret Costello, co-founder of the Gorlin Syndrome Group, added: “While emotional wellbeing is a core part of cancer care elsewhere, it is being unfairly overlooked in this group of people and must be addressed. “We hope this research further improves the understanding of this condition and leads to greater support for people with this life-long genetic condition.”
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