'Silence equals invisibility': Cork cancer survivor urges people to take screening tests

'I may be positive but Iām never negative,' says William Kennedy. As a long-time HIV activist and more recent cancer survivor William campaigns for public awareness and is currently involved as a volunteer with the HSEās new bowel screening programme. Picture: Chani Anderson
Silence equals invisibility for patients, according to a Cork cancer survivor involved in a project to improve cancer screening, as he urged people to speak up about things that are wrong instead of walking away.
Concern is growing about gaps in uptake with only half of people getting a BowelScreen home-testing kit returning them, for example.Ā
Will Kennedy, from The Glen in Cork City, previously saw how badly silencing of HIV/AIDs patients affected their care.
āIāve a strong feeling that silence really does equal invisibility,ā he warned.
āIām a member of a community, we have HIV, and weāre invisible. And if youāre invisible, you donāt have a voice.
āWhen it comes to my health, if Iām not being heard or not being seen, then Iām not part of the decision-making programme that impacts my health. For a lot of people, that leads them to disengage with the services they need.āĀ
He was āscepticalā initially about this HSE network involving patients and healthcare workers talking about screening for bowel, cervical and breast cancers as well as retinopathy.
He had seen patient advocates on the national AIDS strategy committee used as "a tick-box".Ā
āI used to go to meetings in Dublin and Iād sit in with consultants, prison officers, nurses," he said. "And I always felt as the two people living with HIV we were just asked at the end of the meeting what we thought."Ā
However, he said of the screening network: āItās the one thing I can say about this service, I feel as a queer man living with HIV that my concerns were listened to, everything that we suggested was heard.āĀ

Mr Kennedy, 66 and author of āMy Secret Lifeā about living with HIV, said he has heard women describe anxieties around cervical screening.Ā
HSE National Screening Service CEO, Fiona Murphy, said it has 26 volunteers but are now calling for more. BowelScreen starts with a free test.Ā
āOnly half the people we invite to take the screening test at home do it,ā she said. āWeāre looking at how we can get more people to take up screening basically and the patients help us in that.āĀ
The highest uptake is across cervical and breast cancer screening at ā70% to 80% uptakeā, she said.
However, she added: āWe know that 40% of the cervical cancers in that same age group are for people who donāt come for screening. So itās really disproportionate now, because we know screening works to reduce and prevent cancer.āĀ
Information on the Patient and Public Partnership is on the HSE website.