Monday 21st December 2015
Mac Voice, the magazine for Macmillan professionals: Winter 2015
Abigail Howse, Macmillan Quality and Improvement Officer, recently visited the charity DEAFvibe in Staffordshire to find out what it’s like to go through cancer if you are deaf.
I arrived at DEAFvibe on a Saturday afternoon after being invited to their Deaf Café, a monthly social gathering. I was extremely grateful to be invited and was welcomed with open arms and lots of tea! I am especially indebted to the DEAFvibe member (who prefers to remain unnamed) who was willing to share his cancer experience with me.
Experiences of a DEAFvibe member
'I work for the council. I’ve worked there nine years. I had been there for a year when I got cancer. It was in my stomach. They said it was very serious. I had chemotherapy, then surgery, then radiotherapy. I got really, really ill, but I kept going. Eleven months later I was back in work. I was up and down, and had pains for a long time, but next month it will be eight years since the cancer. So I’m doing okay.
'I was born hearing and became deaf at 18 months because of chicken pox and measles. I had to stay in hospital for six months. When I came out I was deaf. I’ve been a British Sign Language user all my life. My father was really shocked that I was deaf. It was hard for the family. Mum signed a little bit but I lip-read her. My sister and brother sign, so we used to communicate like that. I went to The Mount, which was a deaf school.
'I don’t think my experience of cancer was any different to a hearing person’s, because my doctor was fabulous, really good. I don’t think I got treated any differently. I had an interpreter, so it was fine.
'If it was something really brief, my sister would interpret, but she’s not qualified, so if it was more in-depth or serious then I’d say “I need an interpreter for this”. I knew to ask. If you didn’t have an interpreter, that would be really hard.
'Some deaf people don’t know much about cancer and don’t understand. Cancer is hard to explain for deaf people. I think as well, cancer can cause panic and fear in the deaf community. Sometimes, information can just go around the community by word of mouth, and it might not even be correct information.
'To health professionals, I would say make sure you book a qualified interpreter, so the person can communicate. There needs to be an interpreter there if you’re talking about serious medical information.
'Last Wednesday, I bumped into the surgeon who did the operation! He shook my hand and said “Wow, you’re looking really well.” He couldn’t believe it was eight years this month. He was lovely – super. Both the doctors I dealt with were fabulous, really good, and extremely professional.'
Knowing to ask
Talking to this person about their experience was incredibly uplifting. He had clearly been supported brilliantly by all of his healthcare professionals. It was all hinged on the fact that they booked interpreters. But he also pointed out that he ‘knew to ask’.
Many deaf patients are unaware that they have a legal right to request an interpreter.
An interpreter’s view
After the interview, I spent some time chatting to our interpreter. She explained that while the number of interpreters in the UK is increasing, it’s not always straightforward for deaf people to get access to them. There are various reasons why; one that’s very noticeable at the moment is the financial climate. Another factor is lack of awareness about who should book the interpreter, and how to do this.
Sometimes this can lead to stressful and upsetting situations if patients turn up at appointments and there is no interpreter. The interpreter also told me she knew of occasions where relatives were expected to act as interpreters. This seems like a viable option, but forcing a relative to tell their loved one about their diagnosis and even prognosis puts both in an unfair situation. It also compromises the patient’s privacy and even their safety if important medical information is transmitted incorrectly.
Something very positive that’s happening now, she commented, is that NHS England have introduced the Accessible Information Standard. This talks about providing qualified, registered interpreters for deaf patients. It’s a very positive and welcome step forward in ensuring the safe practice of interpreting in a health setting, and most importantly it protects quality and access for both deaf people and the professionals supporting them.
Speaking with a DEAFvibe trustee and social worker
Next up, we had a brief roundup of the week’s news and politics, relayed to the group in sign language and English (I wondered whether for some, this was the main way they found out the news). I then spoke to a DEAFvibe trustee and a social worker, which was incredibly educational.
For me, the main points were these:
- Deaf awareness training has had a huge impact in hospitals in recent years. Often, very small adjustments can make the world of difference – for example making sure you face the patient so they can lip-read, or checking the patient has understood what you’ve said. Many hospitals offer deaf awareness training, although sometimes staff aren’t aware of this.
- Not all deaf people can read well.1 This was something I only learnt myself recently. For deaf people, English is a completely different language with a different structure and grammar. Many deaf people can read and write just as well as hearing people, but many can’t. Never assume you can hand a deaf patient some written information. There’s a good chance it will be difficult to understand.
- Be aware of the Oscar-winning ‘deaf nod’. Many deaf people, though not all, have grown up in a world where they’ve been excluded from conversations, where people have got frustrated with them, and where communication has always been hard work. Many have therefore learned to sit quietly, nod and say they understand (even if they don’t). They’ve also learnt to stop asking questions. Always check whether a patient has understood what you’ve told them – asking them to feed back the main points is even better.
Macmillan has a range of British Sign Language videos at macmillan.org.uk/bsl
Email Abigail Howse, Quality and Improvement Officer at Macmillan Cancer Support.
Continue reading In Focus: Creating patient information for everyone
Equal access to health information - We need to make sure people with particular needs don’t lack information about cancer, Abigail Howse writes.
Facing cancer as a deaf person - Abigail Howse, Macmillan Quality and Improvement Officer, recently visited the charity DEAFvibe in Staffordshire to find out what it’s like to go through cancer if you are deaf.
Supporting patients whose first language is not English - Urology nurse Kathleen MacKenzie on her experiences of using translation services.
Using video to reach more people - Videos are a great way to reach a range of audiences with information, writes Abi Delderfield, Macmillan Quality and Improvement Lead.