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Having cancer as a person with sight loss is frightening

Two men, two women and a guide dog stand in front of a Macmillan Cancer Support banner and an RNIB banner.

RNIB NI Director Robert Shilliday, Sarah Christie from Macmillan NI, Dawn Hopper and Richard Kendrick.

The Royal National Institute of Blind People (RNIB NI) together with Macmillan Cancer Support in Northern Ireland came together yesterday (Wednesday 20 September) to host an event that challenged leading health and social care professionals to ‘See Cancer Differently.'

The event, held at Riddel Hall Belfast, explored the experiences of blind and partially sighted people who are also living with Cancer.

One in two people will receive a cancer diagnosis and it is estimated that one in five people will experience sight loss in their lifetime.

From screening to diagnosis, treatment to recovery, the campaign highlights the additional struggles facing people with sight loss who are also on a cancer journey.

Living with sight loss often means missing early visual symptoms of cancer such as a change in the shape or size of a mole, a change in your breasts, or blood in your stool, for example. This can lead to a later diagnosis and poorer prognosis.

Blind and partially sighted people will also have to deal with receiving their health information and hospital letters in a format they cannot read.

From the accessibility of screening, particularly the bowel cancer screening “FIT” test, to inaccessible communication, including appointment letters and test results, which cannot be read, to information about conditions and treatments, public information campaigns, and the labelling of cancer drugs.

There are approximately 57,500 blind and partially sighted people in Northern Ireland. This number is set to rise. By 2030, we estimate there will be a 24 per cent increase in the number of people with sight loss.

Dawn's story

Dawn Hopper is aged 42 and lives in Antrim with her husband Simon. Three years ago, Dawn was diagnosed with glaucoma and is now registered as severely sight impaired.

“Due to my limited vision I didn’t notice changes in a mole on my arm. The border wasn’t defined, it had got darker in colour and a lot bigger.

“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.”

In April 2011, at the age of 24, Dawn felt a small, pea shaped, semi-hard lump on the mole and was immediately concerned.

Dawn said: “I went straight to my GP the next day who reassured me that all seemed well but 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 twenty minutes of arriving at the hospital I was in the procedure room and the lump was removed.

An anxious two weeks passed while I waited for my results and when I returned to the hospital my husband with me we were given the news -that my mole was stage two melanoma. I had never heard of this. The news was so hard to take in.

Another surgery followed where more tissue was taken and some muscle to see if the cancer had spread and months later we got the good news that it had not spread. I had follow up check-ups and appointments for the following five years and I am 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?’

“More support is needed to ensure that those like myself have the same chance to catch cancer early and lead to the best outcomes. Well done to RNIB and Macmillan for the awareness raising session. There’s a lot more to be done and this partnership will undoubtingly help.”

Richard's story

Richard Kendrick sharing his story at See Cancer Differently event in Belfast

In April 2021 Dr Richard Kendrick was diagnosed with Lacrimal Sac Squamous Carcinoma, a form of skin cancer located in the tear duct system and underwent an operation to remove his eye as part of his treatment plan.

Richard said: “I had watery eyes for many years, but my left eye began to be more of a problem than my right. I then noticed a lump had developed below my left eye, which I could feel through the eyelid.

“I had expected to have an operation to drain a much more common cyst of the lacrimal sac, which is part of the tear ducts which take tears into the nose. The Eye surgeon had warned me before he operated, that once they had opened up the area, if it was found to be a solid lump, then 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. 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.”

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.

“Working in partnership with RNIB, we urge decision-makers throughout the health service 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.”

Gillian Clifford, NHS Engagement Manager for RNIB in Northern Ireland, said: “RNIB is delighted to partner with Macmillan Cancer Support in Northern Ireland, to explore the accessibility of cancer services and supports, to blind and partially sighted people.

“This is fundamentally about accessibility and its consequences for patient safety, consent, decision making, autonomy, choice, and dignity.

“One in two of us will receive a Cancer diagnosis in our lifetime. Many of us will provide care and support to a friend or family member, living with Cancer. We will seek to protect our health, by engaging with screening services. It’s therefore absolutely 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.

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

Gillian Clifford, NHS Engagement Manager RNIB NI, and Gillian Hallard, NHS Engagement Manager for Scotland smile together at the event.

RNIB and Macmillan Cancer Support, in partnership, call on the NI health and social Care service to work to improve the cancer care journey for people who are blind and partially sighted.

For further information, or to arrange interviews, please contact Laura Cummings on 07763 579 142, or email: [email protected].