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.”
Lipspeakers 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
“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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DeafAmerican
April 16, 2014
I should think this is exactly why ALL dhh children SHOULD learn BSL/ASL/Sign in school…..So they can take advantage of ‘terps, by dint of having a full toolbox. I love how oralists gush about how they’re so empowered by being a part of the hearing world….and then they complain b/c they can’t use ‘terps. If they had the abilty to use ‘terps, this problem wouldn’t exist!
Tim
April 16, 2014
Don’t confuse oralists with oralies – the former are those who abuse Deaf children by withholding sign language from them, the latter are the victims of the policy.
I do hope you’re not in the business of blaming the victims? Not all of them think that this oralism is wonderful, you know. As children, we didn’t get any choice in the matter until years later.
Oralism damages Deaf people in so many ways – here we see another way – setting Deaf against Deaf.
donaldo of the wasatch
April 16, 2014
I am not afraid to interrupt and say – hey say that again, or you need to look at me and speak slower. Their is no sins in trying to understand communications and no sin expelling what needs to be done!
Andy. Not him, me.
April 16, 2014
Just like to add my 4p worth. When I had my CI done at Southmead, Bristol I was surprised at the lack of deaf awareness by the staff. I had expected that in a hospital where deaf people are routinely treated that there would be increased knowledge of deaf people’s problems but apart from the Admin office (who obviously deal with deaf people all the time) the nursing staff and surgeons had no idea at all.
This seems to be a glaring omission to me. If these people are dealing with deaf people on a regular basis then why do they have no deaf awareness? It just defies commonsense.
Sylvia Webb
April 16, 2014
Brilliant article, Andy and Alex, but sorry you had to suffer too, Alex!! The same situation applies for many of our OAPs, including as carers where the patient is the person they care for. So this can easily multiply the numbers involved to quite a large extent.
Dan Sumners (@sumnersdan)
April 16, 2014
Whilst we know they routinely don’t, health services should make reasonable adjustments. As you say, making sure someone understands what’s going on – and simply treating them as a human being – is clearly important, and reasonable.
Interpreters of all types can be found by searching the NRCPD – http://www.nrcpd.org.uk.
But general deaf awareness is sorely needed too.
MW
April 16, 2014
Alex, I am so glad someone like you is fighting back on this issue. I too feel very frustrated that reports of any kind that address deafness are often too one sided and don’t speak holistically on the communication needs for all.
“Sick of It” was a report engineered by SIGN HEALTH predominately geared in addressing BSL users, although they say that they do address non-sign language users with their other communication needs – it does fall short at the paying of lip service. It is unfortunate, since I feel if they did work to address all sectors of people with deafness and communication needs, they would gain much better integrity for being a more balance organisation and accommodating equality.
RAD has produce a document also on Social Care for Older people and they too have the same attitude in the promotion of one size fit all and that is BSL and nothing else matters. They too have wasted time and energy on this sort of promotion.
Which begs the question – NADP, Hearing Link, Action on Hearing Loss …what have they done in the promotion of a report on Health and Social Care that represent the wider diversity on deafness and communication = access for all?
It requires unity not disparity for a report to be written up that encompasses the issues of deafness and communication/access for all.
I have yet to send along those reports with a note to remind them that they are biased and lack diversity on deafness, whilst appreciating that BSL users have suffered in the hands of bad management practice but that is the same for any d/Deaf people. It seems to me that the reports have made ignorant people even more ignorant.
We need a lot more Alex to be writing and making their views known to the NHS before it is too late.
queby
April 16, 2014
My biggest problem is with doctors who don’t have English as their first language. I can usually hear their voices but can’t understand them when they have a heavy accent. I’ve nearly missed hospital appts. simply because I couldn’t understand the nurses pronunciation of my name – which is not a complicated one but unfortunately only has one syllable, you will no doubt know that makes it difficult sometimes!
SignHealth
April 16, 2014
Hi Alex, and MW. We agree that a lot of our work, and the report, was about Deaf sign language users. However, we are fighting for change for all deaf people. Our Sick Of It report emphasised that all medical professionals should acknowledge each and every patient’s requirements, lip speaker, interpreter and so on, and make adjustments accordingly. The aim of our report is to benefit all people, sign language users, non sign language users and medical professionals, to ensure they can give the best level of support.
CJ
April 16, 2014
I have been in touch with PALS something like that, complain complain.
Sorry folk’s friend’s etc.
IT DOESNT GO FAR ENOUGH.
CJ
Natalya D
April 16, 2014
Thank you Alex for sharing your story, I am hoping you are on the road to recovery now in much less pain too!
This article is great cos it highlights the difficulty with accessing non-sign communication support due to limited numbers of professionals at approx 25 for STTR and lipspeaking in the whole of the UK.
I’ve decided to bite the bullet and finish the draft of “Natalya’s NHS experiences while deaf” blogpost for a while. It’s far from exhaustive as I do a good line in collecting multiple hospital departments but I hope it covers the main issues.
Blogpost at http://natalyad.dreamwidth.org/11986.html
Natalya D
April 16, 2014
To those claiming everyone should learn sign, you’re missing the fact that the majority of “hard of hearing” people in the UK will be elderly and many people don’t wish to learn sign which is their right.
I learned sign on and off for 4 years in classes and I am no way good enough for a BSL terp. I can hack my way through a social conversation and get about 70% reception on BSL alone even though a BSL terp + hearing a speaker is better than nothing in many cases it is still exhausting and wouldn’t help me in a hospital situation.
I always wanted t learn sign as a child and wish I had had the chance, but we need to remember that many deaf people do not sign and we also have to remember those with other impairments, especially sight impairments which mean sign is not so useful.
As for doctors with a strong accent, that is very difficult to handle – although I struggle with the local Birmingham accent and black country is impossible. It can be hard for white people to say to someone who is foreign especially if they are non-white that you cannot understand them. I think we kind of have to do it anyway, and I don’t think it is racist to say that we ALL need our medical staff to have a high standard of English and clear speech.
My partner was in hospital last year and her nurse was African but she used really good deaf awareness to help me understand her in spite of her strong accent. She faced me when speaking to me, and made sure she got my attention. She spoke clearly and slowly and repeated when I got confused. She was lovely and didn’t take my difficulties understanding her personally which was nice.
SJ
April 16, 2014
to Signhealth – you reported that all the people in your report were BSL users – it wasn’t strictly true – your survey was posred online and picked up by people who were deafened – and responded
donaldo of the wasatch
April 17, 2014
Lets look a the causal situations in Great Britain and what happens with bureaucracies in general worldwide. Government bureaucracies are all together inhumane too often. Those that work there are not compensated, nor rewarded for being proactive. Surprised? Initiative is not a sought for element. The emphasis in bureacracies is on compliance. If you are looking for folks that are sensitive… government bureaucracies are not the place. If it was a non-profit or private enterprise you vote with your feet when they are unresponsive. But, bureaucrats are entrenched and protected. Since the NHC is the only player in town in a subjective sense – you get what the politicians decided you that you could have. So a lot of you whine how insensitive these people are = and they are. You cannot write enough regulations between now and forever to mandate how they should act. They should act nicer, they should be better informed, they should a lot of things. But speaking about Great Britain specifically, until the patients take over the system, you have the best system that politicians are willing to buy and control. You have to hope for courageous souls that will listen and seek to understand your needs and NO ONE will tell them, except you. How receptive will they be if you are even more insensitive than they are? You have to be gracious and firm. If you care more than they do, write them courteously with suggestions and CC to their boss and the bosses boss, etc. “If it is to be it is up to me” and they will not respond anymore to whiners than you will to insensitive nitwits.
Roz
April 17, 2014
As an elderly friend of my mum’s put it when she lost all her hearing aged around 70 – “I don’t want to sign because I don’t live in that world, it would be useless to me”. She carries a pen and notepad and went to lipreading classes instead. This is the reality for most people who are deaffened, at any age, yes they could learn to sign but if they don’t know any other deaf people then practicing signing and using it regularly enough to understand an interpreter is going to be very difficult. Especially when not everyone in the Deaf community is as welcoming or patient with non-signers and HoH people. Added to that, even if their family are supportive and also take it upon themselves to learn sign, it’s very expensive and courses are not offered everywhere. Anyone working in public service should be made deaf-aware. You’d think the NHS, Police etc. Would book in deaf awareness (in fact, awareness for any disability) training as standard along with health and safety etc.
nathan
April 17, 2014
I know exactly how you feel. Whenever I have an appointment, I take my time, and refuse to let anyone rush me.
I’ve never asked for a lip speaker, yet. I’m worried it will delay my appointment further if they can’t find one so I prefer to do without.
Can anyone here tell me if there’s problems with lip speaker, is the appointment delayed?