A few months back, I found myself strapped to a spinal board in the back of an ambulance blue-flashing its way towards Accident and Emergency. It wasn’t for fun, I assure you.
However, with the kind of extreme luck usually reserved for Lottery winners and those who accidentally buy a house next door to George Clooney, I was less damaged than expected and returned home that evening (carefully).
My experience as a profoundly deaf patient at the hands of NHS staff followed some predictable patterns -:
1) The paramedics tried to convince me to have gas and air, because the pain was so extreme. I said no, I would cope. My husband said no, she will cope. He was told to “shove it in, she needs the relief whether she knows it or not”. I feel that this should not have happened. But, my husband pointed out that I needed a clear head to lip-read/watch his signs, and with already limited vision, the gas would make it impossible for me to understand anything. The paramedics apologised and found alternative pain relief.
2) On arrival at the hospital, we asked about interpreter services. As it was a weekend, we were told there was no provision, and my husband would have to communicate for me. I feel that this should not have happened. But, my husband, who wasn’t in a particularly calm state, seeing as his wife was in a neck brace and not moving much, struggled to interpret the comments and questions of the eight different staff members assessing my condition. So, utterly frustrated and in agony, I yelled, “One at a time!” and they took more care to point out what needed to be relayed.
3) Once I had been assessed and awaited further tests, I was left on the trolley. My husband went to make the usual phone calls to family, and asked a nurse to make sure I wasn’t left alone. I was, utterly unable to move anything, staring straight up at the ceiling tiles. This was the first time in half an hour I couldn’t see anybody. Not being able to hear them either, I had no idea what was going on and I started to panic. I feel that this should not have happened. The nurse thought I was just having a little weep and left me to it. When my husband returned, and I calmed down, he said she had been checking my legs and in the cubicle the whole time. I didn’t even know. The nurse apologised profusely; she hadn’t even realised I wouldn’t know she was there.
4) A consultant came to see us. He admitted nearly every member of staff has mentioned the ‘video relay interpreter’ service for out of ours use, but they didn’t know how to access it. And as they only had one video monitor, screwed to the wall, it wouldn’t have been any good for me, strapped down to the bed and unable to look up at it. So, there was nothing that could be done other than ask my husband. I feel that this should not have happened. I’m damn sure this, particularly, should not have happened. So, I made a formal complaint.
Sometimes, it’s hard to make a formal complaint about these situations. The level of care I received was excellent in every other aspect, and I didn’t want to get anybody in trouble for simply being unaware of deaf accessibility requirements.
So, when my husband and I were asked to attend a meeting regarding the complaint, we went along willingly. We made sure the first thing we did was praise the positive aspects of care and the attitudes of the staff – I could see that they were frustrated they couldn’t help more with communication. They just didn’t know what the procedure was, or who to contact.
This meant that the comments regarding the actual access issues were readily accepted and discussed, because we weren’t pointing blame. Obviously, in some circumstances, there is a particular group or person at fault, but in this instance it was just general lack of knowledge or equipment. Sometimes it’s all too easy to say “That nurse didn’t help me!” without looking at whether or not she actually could…
As a direct result of that meeting, the hospital staff are being re-briefed on deaf awareness, the department are looking at their systems for contacting out of hours BSL interpreters (they are more complex, because it is different to other foreign language translation, which can be done over the phone) and hoping to use my experience as a case study to open up funding which will improve the technology available.
There was quite a lively discussion about what the staff would get up to with iPads, and a general consensus that flexible screens attached to the bed might be better (particularly seeing as I wouldn’t have been able to hold up an iPad with my arms out of action, but also to discourage theft).
There are some groups and individuals doing fantastic work to improve deaf access within the NHS. This will never stop being important, because there are so many issues and barriers to care that just don’t need to be there. But, don’t leave it all up to them. Report your experiences, tell the people who can change it, and be enthusiastic about positive reactions you get.
And talking of positive reactions, don’t forget to share those too!
Emily Howlett is a Contributing Editor to this site. She is a profoundly Deaf actress, writer, horsewoman and new mum. Emily used to be found all over the place, but motherhood has turned her into somewhat of a self-confessed homebody. She now has not one, but four grey eyebrow hairs. C’est la vie. She tweets as @ehowlett
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Liz Thomas
April 7, 2014
Well done, Emily! That sounds like a really positive outcome. Let’s hope they follow up on all the proposals that were suggested in the meeting.
Lissa
April 7, 2014
Beautifully written and approached! A great example for us all 🙂
MW
April 7, 2014
I do not know which hospital this is but I would love to share this with the Director of Nursing and the Equality team at the two hospitals we are working with in London…may I share this experience/story?… I also have the same issues/experience, but of a different sorts, and all are to do with poor clear communication, lack of training on the use of sms, accessing computers for relay interpreter or lip speaker or speech to text. Deaf Awareness training need to be fit for purpose and some are not at benchmark level. We need to talk of the need of all sector of people who are Deaf, deaf, deafened, hard of hearing and Deaf Blind. It is not just about BSL. There is a lack in my opinion of an access policy that helps nurses and consultant to do their job properly with their d/Deaf patients across thye board. We should not be in a situation to continue to making complaints – the process can affect ones mental well being.
Shaneybo
April 7, 2014
“video relay service” – I wonder if we can take our iPads in and all that…but wifi? Call quality? So on…
Bongo
April 7, 2014
This article should be signed in BSL for more people to access – it’s important to let people know how to proceed if they feel they have had a bad experience at hospital. How to improve services in their local health service. Patient power!
Emily Howlett
April 7, 2014
Thanks for all the comments.
MW, I am happy to let you know more details, if you want to email the Limping Chicken address with any questions, but otherwise as far as I am concerned you can share as much as possible!
Shaneybo – it actually came up in the meeting whether or not deaf patients would be able to use their own smartphones/tablets/etc, but the management were of the (highly agreeable!) opinion that it shouldn’t come down to the patient to take responsibility for having something appropriate. They wanted to get a system in place that was readily available at all times; for example if someone had an accident like mine, my phone never made it to the hospital with me. I thought it was great that they actively wanted to take responsibility for communication, but I don’t think patients being prepared themselves is a bad idea…
Bongo, I totally agree but also think nobody wants to see me as well as read me 😉 I will get onto the Editor at once…
Shaneybo
April 7, 2014
Emily: in most circumstances, we will make sure our phone isnt damaged even if we have our hand chopped off! :p :p :p
Emily Howlett
April 7, 2014
Very true! *strokes poor scratched phone as it sits in protective nest of bubblewrap*
donaldo of the wasatch
April 7, 2014
We all need to be “instructors” not whiners and complainers. Contrary to the attitude of some, deafness is not an entitlement. Seems like your efforts to improve services was well received. I hope so. I can and will forgive ignorance. But, if we are unable to communicate with others because of our own issues, including anger, then the shame is with us. How many deafened individuals are taught how to resolve issues? I sadly conclude very few. They are taught about what they are entitled to, but how can the “undeaf” understand anything unless we communicate/share with them the issues? And communication/presentation skills are more than fingers and lips.
Vicki
April 8, 2014
A brilliant example of how positive complaining can make a difference. There are quite a lot of resources on the Our Health in Your Hands campaigns page: http://www.ohyh.org.uk with info in BSL too.