Juliet England: Macmillan launches new national service for deaf people living with cancer

Macmillan Cancer Support has joined forces with Self Help UK, which promotes self-help groups nationally, on a new project for deaf people living with cancer across the country.

Called The Macmillan Deaf Cancer Support Project, this is a pilot scheme set initially to last two years. It provides one-to-one practical and emotional help online, entirely in BSL, via trained deaf volunteers. At the same time, it is also set to work with those who are deaf and may be caring for a hearing cancer patient.

The help comprises anything from advice on claiming benefits to signposting other local services. Equally importantly, it may be something as simple as providing a listening ear (or pair of hands) during what is often a difficult time. What’s more, access to peer support groups will allow deaf cancer patients to support each other while sharing their experiences.

Along with virtual contact, the project will also provide advocacy where cases are more complex, and there are plans to develop a website in BSL fully tailored to the needs of Deaf cancer patients.

The Covid-19 pandemic certainly identified a number of barriers that we in the deaf community have to clear when it comes to accessing information and support to do with cancer. For example, information about the disease in BSL isn’t always to find, and it can be much harder than would be ideal to access interpreters at all medical appointments.

Here are some of the figures the charities’ research found ahead of the project launch based on more than 2,000 UK cancer patients including 309 who were also deaf or had a hearing loss.

• Nearly a third (32%) of those who have a hearing loss or are deaf and living with cancer say the pandemic has made it harder to access healthcare or treatment generally in recent months – compared with just over a fifth (22%) of those with cancer who are hearing
• Deaf people are less likely to turn to support following a cancer diagnosis compared with those who are hearing – for example to 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%) – according to a separate survey by Macmillan done at the end of last year

Head of Diversity and Inclusion at Macmillan Cancer Support Kiran Bance commented:

“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.”

Londoner Eleni Botonaki, 42, (pictured below) 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 video call my sister. Sometimes the hospital’s Wi-Fi was terrible and the video would freeze. Or my sister, who’s 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 run the new service. She has been deaf since birth and was diagnosed with bowel cancer in 2019.

She explained: “When I saw the surgeon, I didn’t have a BSL interpreter. Luckily, I was able to lip-read and understand. 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 (people). In the end, I decided to go for one-to-one counselling. The counsellor was lovely and I offloaded, but 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, initially as a regular member.

She added: “It was lovely 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.”

Another service user, Catherine Smith ,told Limping Chicken: “I’ve had an appalling time since August 2021 when cancer investigations started. Now I avoid hospital appointments when I can, require sedation and have my husband with me where that’s not possible. I never, ever, want to be in a position where I am abused by staff for being deaf, again. My hospital is making sure the NHS Accessible Information Standard (AIS), 2016, is still a secret from staff and patients.

“Still no mention regarding the AIS on the hospital website, a year after I complained. If patients and families are kept in ignorance of their right to communication in their preferred format, then abuse will continue. I was begging for my husband, who was sitting outside the ward to be allowed in to explain what was going on. I wonder how much of the NHS problem with “abuse” from patients is actually down to ignoring the needs of disabled people.”

The SORD (Social Research with Deaf People) group at Manchester University is formally evaluating the pilot’s impact and effectiveness.

• To find out more about the Macmillan Deaf Cancer Support Project and access support, visit selfhelp.org.uk/deafcancersupport. Or email deafcancer@selfhelp.org.uk