A South Belfast woman has opened up on how going through a cancer journey is ten times harder as a deaf person.
Daphne McFaul shared her story as Macmillan Cancer Support and Self Help UK have joined forces to improve support for deaf people living with cancer in Northern Ireland.
Daphne, 57, was first diagnosed with breast cancer in 2016 and found it difficult to access cancer information.
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“If you’re going through the cancer journey, it’s ten times harder as a deaf person. I find anybody who isn’t deaf very fortunate that they can immediately get the information they need,” she said.
“It’s such a struggle and people don’t seem to think what it’s like to be a deaf person experiencing cancer. They don’t understand the importance of having an interpreter.
“It’s the human touch as well, knowing that you have the interpreter there and are able to explain yourself directly is very important.”
Daphne added: “I didn’t bother with leaflets, they’re inaccessible as I don’t use English to that degree. Actually, it’s a bit off-putting when you’re handed leaflets when you don’t use English as a first language.
“What you want is an interpreter in the room. I know they give them out thinking that it’s a form of support, but for a deaf sign language user I don’t see it as support. It highlights that there is no support for me.
“We need more services, more support for deaf people. It‘s very barren, there’s not much there for deaf people when it comes to accessing information about cancer.”
The Macmillan Deaf Cancer Support Project offers one-on-one emotional and practical support remotely in British Sign Language (BSL) through trained deaf volunteers. The two year pilot will also support carers, including deaf people who are supporting a hearing person with cancer.
The Covid-19 pandemic highlighted a number of barriers to accessing cancer information and support for the deaf community. This included lack of interpreters at some medical appointments and a shortage of cancer information in BSL.
One in three (32%) people with cancer in the UK who are also living with hearing loss or deafness say the pandemic has made it harder for them to access healthcare or treatment in general in recent months. This compares with around one in five (22%) people with cancer who do not have any hearing loss.
When it comes to general sources of support with their cancer, those with hearing loss or deafness are also less likely to have turned to their family or friends (33% compared with 40% of those without hearing loss), a cancer charity (14% compared with 19%) or an online support group (6% compared with 11%).
As well as virtual peer support groups, the project will provide advocacy support in complex cases and develop a website in BSL tailored to the needs of deaf people with cancer.
Janice Preston, Head of Partnerships for Macmillan in Northern Ireland, says being diagnosed with cancer can be a frightening experience and it is unacceptable that deaf people do not have equal access to vital support.
She added: “We will do whatever it takes to change this so we can be there for everyone living with cancer. This new partnership with Self Help UK will ensure that anyone facing a cancer diagnosis in the deaf community can access emotional and practical support when they need it most.”
Simon Calvert, managing director of Self Help UK, added: “It’s fantastic that Macmillan are continuing to fund Self Help UK’s team of deaf staff and volunteers. It will allow us to further develop this ground breaking Deaf Cancer Support Project.”
You can find out more about the Macmillan Deaf Cancer Support Project and how to access support here or email deafcancer@selfhelp.org.uk.
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