Campaign urges health care sector to 'See Cancer Differently'

The Royal National Institute of Blind People and Macmillan Cancer Support in Northern Ireland are urging the health and social care service to improve the cancer care journey for people who are blind and partially sighted.

A campaign led by the two charities aims to challenge health and social care professionals to ‘See Cancer Differently,’ and highlight the additional struggles that people with sight loss who are also experiencing cancer can face.

An event on 20 September at Riddel Hall, Belfast, shared the experiences of blind and partially sighted people who are living with cancer.

The charities pointed out that living with sight loss can mean missing early visual symptoms of cancer, such as a change in the shape or size of a mole, which can lead to a later diagnosis and poorer prognosis.

Health information and hospital letters can be sent in a format that blind and partially sighted people cannot read, which can include appointment letters and test results, information about conditions or treatments, campaigns, or medication labels.

Screening accessibility can be an issue, particularly the ‘FIT’ test in bowel cancer screening, the charities suggested.

Gillian Clifford, NHS engagement manager for RNIB in Northern Ireland, commented: “This is fundamentally about accessibility and its consequences for patient safety, consent, decision making, autonomy, choice and dignity.”

There are approximately 57,500 blind and partially sighted people in Northern Ireland, with this predicted to increase by an estimated 24% by 2030.

The charities pointed out that one in five people are estimated to experience sight loss in their lifetime, while one in two people will receive a cancer diagnosis.
Sarah Christie, policy and public affairs manager for Macmillan in NI, said: “Being diagnosed with cancer can be a frightening experience and it is unacceptable that blind and partially sighted people do not have equal access to vital support.”

In partnership with RNIB, the charity is urging decision-makers in health care to “increase their efforts to understand the needs of cancer patients experiencing sight loss and to implement measures to improve their cancer care journey including equal access to written health information.”

Clifford called it “vital” that blind and partially sighted people can engage with public health information, screening and testing, treatments and support, “on an equal footing.”

“Central to this is accessibility and the routine provision of health information in accessible formats. This is fundamental to patient safety, and to the ability of blind and partially sighted people to practically engage with prevention and early intervention programmes, to consent to treatment, to attend appointments and to have privacy, dignity and autonomy in matters of their health,” she continued.

“We know that this joint campaign is the start of the journey and not the destination,” Clifford said. “It is designed to open a dialogue, to challenge existing practice and to explore whether there are potential solutions which could be developed together.”

Pictured: RNIB NI director Robert Shilliday, Sarah Christie from Macmillan NI, Dawn Hopper and Richard Kendrick.