Campaign urges health care sector to 'See Cancer Differently'
RNIB NI and Macmillan Cancer Support in Northern Ireland are calling on health and social care to improve accessibility in the cancer care journey for people who are blind and partially sighted
22 September 2023
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.”
“Having cancer as a person with sight loss is so frightening”
At the event, hosted by RNIB NI and Macmillan, individuals shared their experience of having sight loss and cancer.
Dawn Hopper, 42, was diagnosed with glaucoma three years ago and is now registered as severely sight impaired.
“Since birth I always had a mole on my left arm that was different to others I had. I always checked it out and felt it regularly. As time passed, I had several serious eye surgeries and was partially sighted as a result,” she shared.
Due to her limited vision, she didn’t notice changes, until in April 2011, at the age of 24, Hopper felt a small pea shaped and semi-hard lump on the mole and visited her GP.
“Because I voiced my concerns about the lump I got an urgent referral to Belfast City hospital. Within two weeks I had my appointment and within 20 minutes of arriving at the hospital I was in the procedure room and the lump was removed,” Hopper said. Tests revealed the mole was stage two melanoma.
Further surgery and tests confirmed that the cancer had not spread and Hopper is now in remission.
“Having cancer as a person with sight loss is so frightening. Whilst I am so blessed to be in remission, it is always there at the back of my mind; ‘how can I see if any other moles change or appear?'” she said.
Dr Richard Kendrick was diagnosed with Lacrimal Sac Squamous Carcinoma in April 2021 and underwent an operation to remove his eye as part of the treatment plan.
After experiencing watery eyes for many years, Kendrick’s let eye began to “be more of a problem than my right.”
Kendrick then noticed a lump that had developed below his left eye, which could be felt through the eyelid.
While he had expected to require an operation to drain a cyst, the surgeon had warned that if it was found to be a solid lump, a biopsy would be taken.
“I knew what was needed for a cancer curing operation, and had had to remove other patients’ eyes as part of their surgery when I was still working as a maxillofacial surgeon. So, I knew that life goes on despite what needs to be done,” he explained, “My attitude was – the cards have been dealt, so now we have to play the hand – ‘we’ being me, my wife and family, along with all who have treated and looked after me.”
“A cancer experience is so much more than just the surgery,” he added.
Pictured: RNIB NI director Robert Shilliday, Sarah Christie from Macmillan NI, Dawn Hopper and Richard Kendrick.