Matt Dixon is the only hearing person in his family. His parents, along with his brother Simon and sister Rebecca are deaf.
Being the only hearing person in the family, Matt had been used to interpreting English into sign language and vice-versa, but never before had he been asked to interpret on a matter of life or death.
It was Halloween 2008 and Matt received a text from his sister telling him that his father had collapsed and was in hospital. Matt dropped everything to be at the hospital as quickly as possible.
Matt’s father, Phillip, was kept in hospital for tests and eight days later, the results from a biopsy came in. A sign language interpreter was booked by the hospital for a meeting with the consultant so Phillip could learn first hand, and in private, the news that the consultant had to tell him.
Matt recalls that afternoon: “The interpreter who came was a friend of Dad’s. Dad was a prominent member of the deaf community and knew all the local interpreters. Dad and the interpreter left the family waiting outside while they went into the meeting. The next thing I know, the interpreter came out of the room in floods of tears. We knew from his reaction that the situation was serious.
“Dad had been told that he had secondary cancer of the liver. He had always been a best friend to me, my brother and my sister and he was putting a brave face on it for our benefit.”
Matt and his siblings feared that their dad had seen his last Christmas but despite the grave news, Phillip remained positive about the situation for his children. Matt suspects that his father already knew his cancer was terminal when he was discharged from hospital days later – but he never told his children.
One month after the diagnosis, Phillip began chemotherapy to try and stop the spread of the cancer. He was required to attend many other appointments too, but unlike at the initial diagnosis, communication support was not forthcoming.
Matt remembers how the cancer centre handled the issue of booking further interpreters for his dad. “They asked me to do it and I said I would but only if there were no interpreters available. For all the scans, blood tests and the chemotherapy that followed they never ever booked an interpreter for him again – even though written on the front of Dad’s file, in big red felt pen, it said: PROFOUNDLY DEAF.”
“At the first chemotherapy appointment my dad was all smiles. I asked the receptionist who the interpreter was and she replied ‘Oh, really sorry, we can’t get one.’ I just had to go with the flow. I was used to it from my life communicating for my family and I didn’t know about the Equality Act back then, all that I was bothered about was my dad.”
“I asked them to book an interpreter for the next appointment but they didn’t and that next appointment was for the results of a scan following the first chemotherapy treatment. It was an important meeting to see if the cancer had spread or not. I relayed to my dad, acting once again as his interpreter, that the cancer had not grown.”
There was a telling early-warning sign that the failure to provide professional interpreters, especially where medicines were concerned, could have been dangerous in itself: “The day after diagnosis, the doctor explained all the medication that my dad would have to take and there were 10 different tablets per day all at different times; it was complex” said Matt.
“My sister Rebecca noticed that Dad wasn’t taking his medication because he was confused. Looking back, I interpreted that meeting for my dad and although I understood what he needed to do – clearly he didn’t. I used ‘family sign’ (a term to describe a looser form of sign language used among family members) but not medical terms or the way to get across a complex situation, like an interpreter could.”
It took another appointment, this time with sister Rebecca and once again without an interpreter, for those potentially dangerous problems with medication to be resolved. Phillip continued his course of chemotherapy over Christmas and after two sessions, Matt began to think that his dad’s grave health situation was looking more positive.
‘Forever Positive’ was a phrase that Matt and his father shared since diagnosis and they said it to each other every day without fail. Being in a ‘Forever Positive’ frame of mind was helping both Matt and Phillip cope with the situation.
It was now February 2009 and time for the third chemotherapy session. “I thought this chemotherapy session was going to be routine.” said Matt.
“We knew all the people there and I knew that there would be no interpreter, as there never was. I asked every time and they’d say ‘oh sorry – can you do it?
“We didn’t complain, we’re not the type of people to complain. Dad had a hard life and always got on with it. He was used to not having interpreters for GP appointments and I was used to doing it for him, but sadly this wasn’t destined to be a routine appointment.
“We sat waiting for the usual nurse to come and get us but she didn’t, she just walked past and smiled. Instead the consultant, who we wouldn’t normally see, appeared. She spoke directly to me, not my dad, and asked us into her office for a chat.
“I sat next to the doctor, opposite my dad so he could see us both, and on the computer screen I could see there was an image from a scan of my dad’s liver.
“She said that they had assessed the most recent scan and the news was bad. The cancer was getting worse. She used lots of medical terms but all I translated was ‘it is getting worse’. She used more medical words to describe the situation but I could only translate it as: ‘there is no point continuing with the chemotherapy – you will get very ill.’
“I remember my dad’s face as clear as day. He just looked at me with a smile.
“I didn’t really understand what the consultant was saying and ended up asking her what she meant. She said that it was going to get worse and what was important now was Dad’s palliative care and keeping him comfortable. I just burst into tears.”
Matt walked into the cancer centre that day wanting to play a supportive role but instead had no option but to face his dad and tell him that his fight against cancer was over. Phillip, a proud and loving father, was apparently not given an opportunity to protect his son from the full impact of the news or to work out how best to explain to his beloved son that all hope was finally lost.
“My dad just said ‘I have to accept it’. I couldn’t stop crying and Dad began consoling me, he even said ‘Forever positive’ to me as he tried to make me feel better.”
Five months later, Phillip died at home with his family and close friends at his side.
Since then, Matt has gained qualifications in sign language to just below the level required to be an interpreter and he has recently taken a prominent role in the growing campaign for better rights for people who use BSL (British Sign Language).
Reflecting on his father’s final few months, Matt said: “I felt I had no option but to attend every single appointment because I had a gut feeling my father would be let down and it turned out that I was right.”
“The responsibility should rest solely on the NHS to provide interpreters. It should not be an issue. At the time we just got on with it, we mentioned it to staff but didn’t complain. I ask myself why I didn’t make formal complaints or why didn’t I take it further but I can’t answer these questions – we just got on with it.
“When I think of Dad, I look back with fond memories. It was an honour to be a part of his very short life. The most valuable lesson I learned from him was to be forever positive, no matter how hard times get.”
“But I look back on this experience and feel as though I was a forced volunteer. I was there to be my dad’s support, not his interpreter. I fear that other families like ours will have to suffer the same experience if things don’t change.”
A shortened BSL Version of this story is available here courtesy of Remark!
By Andy Palmer, The Limping Chicken’s Editor-at-Large.
Andy volunteers for the Peterborough and District Deaf Children’s Society on their website, deaf football coaching and other events as well as working for a hearing loss charity. Contact him on twitter @LC_AndyP (all views expressed are his own).
The Limping Chicken is the UK’s deaf blogs and news website, and is the world’s most popular deaf blog.
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