Learning to fight cancer with confidence

Wednesday 15 June 2016

Catherine Adadevoh and Sylvia Barnes update

People with learning disabilities are being helped to get early diagnosis and treatment of cancer thanks to Guy's and St Thomas' learning disability community health team.

Recent research suggests that people with learning disabilities need better support to spot the signs and symptoms of cancer early and to overcome their potential fears of health professionals.

To combat the problem, Guy’s and St Thomas’ learning disability community health team is holding a Big Health Day event on Wednesday 22 June from 11am to 3.30pm at the ORTUS learning and events centre, 82-96 Grove Lane, SE5 8SN.

This team of community nurses, occupational therapists, physiotherapists and speech and language therapists provides services to an estimated 6,000 people living with learning disabilities in Lambeth, Southwark and Lewisham.

Nurses act as intermediaries, encouraging people with learning disabilities to get regular health checks with their GP and to attend hospital and GP appointments.

Learning disabilities can affect the way people learn new or complex skills and how they communicate. A learning disability can be mild, moderate or severe.

Sylvia Barnes, 75, was diagnosed with cervical cancer last year and received treatment at Guy's and St Thomas'. The learning disability community health team attended important hospital appointments with her and informed the hospital cancer teams of her disability and concerns. With their support she was able to overcome her fear of hospitals and get the treatment she needed. She describes the team as "very kind".

Jackie Downing, Deputy Head of Nursing for Health Inclusion at Guy’s and St Thomas’, says: "There are many reasons why people with learning disabilities are less likely to get a cancer diagnosis than the general population.

"It could be because they don't tell their parent or carer about the symptoms they've been having because of fear of going to the doctor. Or it could be that health professionals are missing the warning signs or making assumptions about whether people with learning disabilities can tolerate diagnostic tests like a cervical smear test or treatments like chemotherapy.

“But there are many things that we can do to encourage people with learning disabilities to get the care they need. It's about improving understanding and taking away the fear associated with cancer. 

“The learning disability nurse will accompany patients to appointments and advocate on their behalf for care that is specific and individual to them. This may mean health providers making reasonable adjustments so that people with learning disabilities get the right care."

Last updated: June 2016

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