“All I want is to be treated like a normal human being” Healthcare for deaf people who don’t use sign language

Posted on April 16, 2014

A recent study by charity SignHealth has revealed that sign language users are more likely to suffer from long term health problems than their hearing counterparts, suffer misdiagnosis and have problems understanding their medication.

The solutions to these problems involve expanding the use of sign language interpreters; but what of the hundreds of thousands of profoundly deaf people in the UK who don’t use sign language? 800,000 people in the UK are severely or profoundly deaf with around 180,000 of working age.

If there is a problematic shortage of sign language interpreters in healthcare then there is a famine of biblical proportions when it comes to lipspeakers, notetakers or speech-to-text reporters (the often crucial methods of communication for deaf people who don’t sign).

Alex Broderick, aged 32 and completely deafened by meningitis as a baby, doesn’t use sign language interpreters and was in hospital recently suffering excruciating pain from a gynaecological condition called Endometriosis. For Alex, there was simply no support available to help her understand what medical professionals were saying, so she relied on her mother to pass on critical information.

Hospitals often have policies about providing sign language interpreters but for those who are deaf and don’t use sign, understanding what’s going on can be a game of chance.

“They didn’t offer any support whatsoever,” said Alex after she got home. “They didn’t ask if I needed communication support but then they never do. I think the options are quite limited for lipspeakers or notetakers because there’s not enough to go around.”

doctor maskLipspeakers relay clearly what someone is saying to the deaf person and note takers make valuable notes of conversations so that the deaf patient can refer to them later or during a consultation.

“I had to ask the doctors and nurses to look at me when they’re talking to me, be prepared to write things down and tell them that they have to speak to me very clearly and be patient because I may miss few things.”

“They did record the fact that I’m profoundly deaf on my medical notes but often they forget. They talk far too quickly and start talking whilst turned away from me.”

Alex has been a regular visitor to hospital and remembers examples of both good and bad practice. Alex’s current consultant makes sure that she understands what’s going on, takes his time and treats Alex like a ‘person’. Taking the time to communicate properly has as much to do with the information being given as it does for the patient to feel like a full participant in their own healthcare.

For Alex, past communication problems in hospital have led to feelings of worthlessness and could have had potentially disastrous consequences.

“My first gynaecologist correctly diagnosed me with endometriosis after 9 years of misdiagnosis.” Alex said.

“He performed an operation which did help to resolve the endometriosis but then about two years down the line, my endometriosis returned and I went back to see him. This time he was very rude, did not make any effort to look at me because mum was there with me at the time. I tried to do the talking but he completely blanked me and focused on mum like she had the problem.”

“It was like I was invisible in that room.”

“My mum tried to get him to look at me and talk to me but he just told me to carry on taking birth control or go on early menopause. It seemed like he didn’t have the time to deal with me properly and I suspect it was because of the problems I had communicating with him. He didn’t give me any suggestions but to carry on taking the very strong painkillers I needed just to function.” 

It's not always bad

It’s not always bad

“I decided to seek a second opinion so I researched online for an endometriosis specialist and I went to see him privately because I needed help quickly. Funnily enough, he did take the time to communicate with me.”

The pressure on time is something every NHS patient may have noticed, deaf or not. But if you are deaf and have to ask for a little more time, that feeling of pressure can become very acute.

Take into account the degradation of being forced to use your parents to communicate on your behalf (well into adulthood) then continually struggle to understand what’s being said about your aching body and you begin to understand what every visit to the hospital is like for Alex.

“I do feel rushed sometimes because I’m deaf and taking too long but why should I?” She said.

“My mind is constantly working overtime, keeping on top of what is being said and then remembering all the information being told to me. I have always had to have my mum with me because lip reading is very hard work.

“All I want is to be treated like a normal human being but I end up feeling worthless and inferior. It is a huge thing to overcome because I have been so used to having mum as a security blanket. There will be a day when I won’t be able to have anyone with me so I’d need to stand on my two feet and encourage doctors to meet me halfway by taking their time, being prepared to write things down and being flexible.”

Alex will have to roll the dice if she goes to hospital on her own but technology may yet come to the rescue. Some companies now offer services that provide live subtitles on a computer screen when the doctor speaks but there is a very long way to go before that’s common practice. The limited number of lipspeakers and notetakers mean availability for appointments is extremely unlikely and most deaf people probably don’t even know that those services exist.

The pressure on the NHS to provide sign language interpreters rightly increases; but those deaf people that cannot sign face a future of healthcare with no foreseeable improvements and equally dire consequences.

By Andy Palmer, Deputy Editor. Andy also volunteers for the Peterborough and District Deaf Children’s Society on their website, deaf football coaching and other events. Contact him on twitter @LC_AndyPCheck out what Limping Chicken’s supporters provide: 

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