New Macmillan service supports Deaf people living with cancer in Wales

This press release is available in British Sign Language here

Macmillan Cancer Support and Self Help UK have joined forces to improve support for Deaf people living with cancer in Wales.

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%)**

Eileen Fisher, from Colwyn Bay in North Wales, was first diagnosed with breast cancer in 1997 and is still living with lymphoedema as a result of treatment. She has been Deaf since birth and says communication has been poor throughout her treatment history.

She said: “I looked for appropriate places to find help but it was really difficult and is no better today. I can’t speak for myself so my family had to translate for me. The communication in the hospital was terrible and there weren’t any interpreters. They asked if I could lip read, and said we’d need to work through it in spoken English. It made me feel very isolated. At that time I was quite timid and didn’t want to stand up for myself.”

Eileen had a mastectomy followed by chemotherapy.

She said: “I had no one to talk through it with me. I lost my mum soon after the diagnosis. I had to get through it by myself. I couldn’t find any information about what to expect from it all. In hospital they gave me leaflets in written English. I just put them straight in the bin because I’m a British Sign Language User, I can’t read English. No one in the hospital could sign. It’s just been so stressful, I’ve suffered so much.”

She added: “But now I speak out and I won’t stop campaigning for Deaf people.”

The Macmillan Deaf Cancer Support Project will provide more support for people like Eileen. As well as providing one on one emotional and practical support virtually, it will also give Deaf people with cancer access to virtual peer support groups and provide advocacy support in complex cases. A website tailored to the needs of Deaf people with cancer will provide information in BSL.

Richard Pugh, Head of Partnerships for Macmillan in Wales, 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.”

Simon Calvert is Managing Director of Self Help UK. He said: “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. We are excited to be able to extend this initiative across the UK and to make a real impact on the quality of support provided to the Deaf community.”

To find out more about the Macmillan Deaf Cancer Support Project or access support visit www.macmillan.org.uk/deaf-cancer-support or for information in BSL www.selfhelp.org.uk/deafcancersupport. You can also email deafcancer@selfhelp.org.uk