A new support service for deaf people living with cancer has been launched after research showed the barriers to care faced by people in that community.
Macmillan Cancer Support said almost a third (32%) of people with cancer in the UK who were also living with hearing loss or deafness said the pandemic had made it harder for them to access healthcare or treatment in general.
The charity, which said it surveyed more than 2,000 UK adults with cancer – including 309 people also living with hearing loss or deafness, said the figure was higher than the 22% of people with cancer who do not have any hearing loss.
A separate survey by the charity at the end of last year of more than 2,000 UK cancer patients found that those with hearing loss or deafness were less likely to have turned to their family or friends, a cancer charity or an online support group, compared with those who have no hearing difficulties.
Following the research and together with Self Help UK, the charity has launched the Macmillan Deaf Cancer Support Project to offer one-on-one emotional and practical support remotely in British Sign Language (BSL) through trained deaf volunteers.
The project, which will be a two-year pilot, will also support carers including deaf people who are supporting a cancer patient who has no hearing difficulties.
Macmillan said the support offered could range from advice on how to access benefits, to signposting to other local services or just being someone for a person to speak to about what they are going through.
It will also aim to give deaf people living with cancer access to peer support groups to allow them to share their experiences and support each other.
I felt I needed more support as I wanted someone to talk to. So I researched and found no deaf cancer support groups in my area, only for hearing— Claire Adshead, cancer sufferer
Claire Adshead, who has been deaf since birth and was diagnosed with bowel cancer in 2019, said she felt she had to “persevere” through her journey with the disease with very little support and felt “alone”.
The 48-year-old, from Hemel Hempstead said: “When I saw the surgeon, at the time I didn’t have a BSL interpreter. Luckily I was able to lip read and understand the surgeon well.
“I felt I needed more support as I wanted someone to talk to. So I researched and found no deaf cancer support groups in my area, only for hearing.”
Even one-to-one counselling was a challenge, she said, because she “felt the empathy for the deaf aspect was not there”.
She went on to join the Macmillan Deaf Cancer Support Group and said: “It was lovely to be able talk to another deaf person going through cancer, sharing their experiences.
“The group gives out information that I wished I knew before I started treatment. It’s helped me a lot plus it made me feel that I am not alone through my cancer journey as a deaf person.”
She is now part of the Macmillan project team at Self Help UK, helping to deliver the new service.
Kiran Bance, head of diversity and inclusion at Macmillan, said: “Being diagnosed with cancer can be a frightening experience and it is unacceptable that deaf people do not have equal access to vital support.
“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.”
To find out more about the support project and access support visit www.selfhelp.org.uk/deafcancersupport or email deafcancer@selfhelp.org.uk.
