Macmillan Cancer Support and Self Help UK have joined forces to improve support for Deaf people living with cancer across the UK.
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 2-year pilot will also support carers, including Deaf people who are supporting a hearing person with cancer.
The 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%)**
Eleni Botonaki, 42, from North East London, was diagnosed with breast cancer just before the first lockdown.
She said: “Covid brought about so much change, it was so hard going through cancer treatment. Interpreters weren’t provided because of Covid. I would go to a hospital appointment but I couldn’t manage on my own. The English was too complex and they used too much jargon, I just didn’t understand.
“My family was calling me every day, especially my sister who has been so supportive throughout. I had to ask my sister to interpret and translate for me. When I had a meeting I’d videocall my sister. Sometimes the hospital’s Wi-Fi was terrible and the video would freeze. Or my sister, who’s actually in Crete, her Wi-Fi would freeze. It was really stressful. I was just so overwhelmed and isolated. It really affected my mental health.”
Claire Adshead, 48, from Hemel Hempstead, is part of the Macmillan project team at Self Help UK helping to deliver the new service.
She has been Deaf since birth and was diagnosed with bowel cancer in 2019.
She said: “When I saw the surgeon, at the time I didn’t have a BSL interpreter. Luckily I was able to lipread 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. In the end I decided to go for one-to-one counselling. The counsellor was lovely and I offloaded but felt the empathy for the Deaf aspect was not there. I felt alone because I was Deaf and no-one could empathise with me from a Deaf viewpoint. I had to persevere through my cancer journey.”
When she finished treatment, Claire joined the Macmillan Deaf Cancer Support Group, first as a member.
She 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. Now I am officially part of the team to do more good work with Deaf people living with cancer.”
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.
Kiran Bance is Head of Diversity and Inclusion at Macmillan Cancer Support. She 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.”
The impact and effectiveness of the pilot is being formally evaluated through BSL by the SORD (Social Research with Deaf people) group at the University of Manchester.
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