A Deaf woman with a terminal lung cancer diagnosis says she wouldn’t be here if it wasn’t for a Macmillan volunteer, after communication barriers left her feeling ‘ignored’ and ‘isolated’.
Heidi Wells, 52, from Huntingdon in Cambridgeshire, was first diagnosed in 2018. She had chemotherapy, radiotherapy and surgery to remove the tumour and a large part of her lung, followed by immunotherapy. However, unfortunately the cancer had spread to her adrenal gland and remaining lung so she is now receiving palliative care.
Like many Deaf people living in the UK, English is a second language for Heidi, her first being BSL, so she has found the communication around her diagnosis difficult. She didn’t always have access to an interpreter and her family aren’t close by so couldn’t help with translation.
She said: “The communication barriers were awful. I felt ignored. I was in hospital recovering from my operation for 4 months and during that time there were no interpreters. I had my ipad so I could Facetime my family and friends but it was very isolating. It really affected my mental health. Generally I had no idea what was going on. There was no information given to me. I have a condition which means I can’t see very well, so they’d write things down for me but it was very small and I couldn’t read it.”
After treatment, Heidi found the Macmillan Deaf Cancer Support Project, which is an initiative launched by Macmillan and Self Help UK to improve support for deaf people living with cancer across the UK.
Launched last year, the 2-year pilot offers one-on-one emotional and practical support remotely in British Sign Language (BSL) through trained Deaf volunteers as well as Deaf peer support groups.
Heidi said: “I felt like the only Deaf person with cancer. There was no support, I had to keep everything to myself. I had to shut myself down as it was the only way I could get through it. Now, to have someone to talk to is amazing. It’s good to be able to offload. My volunteer is so supportive. If I’m feeling down, I know I can text her and she’ll call straight away on a video call. I don’t think I would be around if she hadn’t been there for me.”
As well as the one-on-one support through her deaf volunteer, Heidi also joined the virtual Deaf peer support group.
She said: “It helps to know I’m not the only one and I’m not alone. Everyone in the group has experienced the same barriers. They have been so supportive. We share information with each other, we tease each other and have a laugh. And when you’re not feeling so well, you know you can get support.”
Despite her prognosis, Heidi still remains positive.
She said: “Some days I struggle but I try to stay positive. I still ride my bike, go horse riding and walk my dogs. I never stop! I even landscaped the garden myself. My neighbours say, what are you doing, you’ve only got one lung! But you’ve got to keep going because life is short.”
The Macmillan Deaf Cancer Support Project was launched with Self Help UK after the pandemic highlighted a number of barriers to accessing cancer information and support for the Deaf community.
Previous research from Macmillan found one in three (32%) people with cancer in the UK who are also living with hearing loss or deafness said Covid-19 had made it harder for them to access healthcare or treatment in general. This compares with around one in five (22%) people with cancer who do not have any hearing loss*
Richard Longrigg, EDI National Partnerships Lead for Macmillan, said: “It’s really upsetting to hear stories like this from the Deaf community. Being diagnosed with cancer is frightening enough without having additional barriers to contend with. Everyone should have access to cancer information and support and we will do whatever it takes to make sure that happens.”
To find out more about the Macmillan Deaf Cancer Support Project and access support visit www.selfhelp.org.uk/deafcancersupport.
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.