A Simple Awareness Maybe? By Paul Leonard

paul

Today was the day Peter (our son) had to go to the Birmingham Children’s Hospital. To cut a long story very short (too late!), he isn’t talking and to get some speech therapy, he needed to have (another) hearing test. (This would now be test number 4.) Having arrived there, under slightly calmly circumstances compared to last time, I was impressed. (That’s a whole other blog post.)

You go in, take a ticket like you do it at the delicatessen and wait for your number to be called. The automated system, eventually calls out your number and tells you which kiosk to go to and so you can check in. We were both impressed, not only did the system call out your number but it also displayed on a relatively huge TV screen – BCH, 10 out of 10 for deaf awareness … but that’s where it stopped unfortunately.

We checked in and waited right next to audiology. Looking up, I saw two kids, brother and sister, I assumed. Both with hearing aids with their mother. Their names got called and in they went … but was it shown on the display? Oh no! Good job their mother could hear I thought. A short while after, it was our turn and … “Peter Leonard”. Again nothing shown on the TV! Why not?!

How hard would it be to add the patient’s name to the TV screen? It is basic! Need teaching? All you need is a computer and a monitor to project the name on … you have hundreds of computers scattered around the building being a hospital and a few TV’s positioned around the room for the “deli. counter” display. So, why don’t you make use of the technology you have and put on the next patient’s name? It’s a good job I was with Rebekah otherwise, how would she know his name had been called?!

Then, upon going through – Peter had to have his hearing test but this caused dilemma. Only one of us could go in the room with him so as not to distract him. Fair enough I guess, but the lady who greeted us couldn’t sign which meant Rebekah couldn’t go in and so I had to. (She wasn’t the “proper” audiologist, she was more of her assistant.) That’s fine but what if Peter really wanted his mummy whilst being whisked away in a tiny claustrophobic room?!

After the tests were over, Rebekah was allowed in the room for the consultation where Rebekah could come in to hear the results with the audiologist. She scored 10 points for spotting Rebekah’s hearing aids, but then promptly lost them all by saying, “can you hear what I am saying?” Why oh why can’t these people in this profession sign? Would it be that hard? Why can’t the NHS make this a prerequisite of the job? Why is there such little deaf awareness? Why why why?!

Answers on a postcard to the usual address! #RantOver!

~ PAL

(who often rambles here and there :-))

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Computer Says No By Rosie Malezer

Rosie Conan

Rosie Malezer

I am a Deaf Australian Aboriginal living in Finland (I am now also a Finnish citizen). On 23.11.2014, I lost my hearing – LITERALLY overnight. I woke up, could hear nothing. My husband spoke and I saw his mouth move, but I heard nothing. I could not hear my cats, the wind blowing outside, the television, my telephone, my alarm to wake me. Not a thing, except for a ringing in my ears. My left ear has louder higher pitched ringing than right ear. Over the past five months, I have been passed back and forth from specialist to specialist, doing many tests (some quite painful) to try and determine what is going on. The Audiologist at TAYS (Tampere Hospital in Finland) advised in November that a Cochlear Implant would not only help me to hear again, but would also remove the ringing in my ears. At all visits, I had my husband and Mother-in-Law with me so that there would be no misunderstandings due to communication. Many hearing tests later, all saying the same thing (I cannot hear, not even through the bone behind my ear) led to diagnosis that I am profoundly Deaf.

Each visit to each specialist, each test, each social worker cost us around 32€ and with well over 10 visits in a five month period, it quickly adds up. The cost was crippling, especially since my Unemployment Benefit was cut immediately on my diagnosis of Deafness and I was instead placed on Sickness Benefit until the hospital could determine what is wrong with my ears. Why can’t I hear? What caused my Deafness? So now, we are buried in hospital bills, but life was made a tiny bit easier when the hospital supplied me with a communication device that enabled me to have a TWO WAY conversation without needing pen and paper. I was also provided with flashing lights in my home to tell me when the doorbell rings. It made things a little bit easier.

After all the tests and the confirmation that I would be receiving a Cochlear Implant in March 2015, I was at peace with the fact that I may never hear again. Being Deaf no longer scares me because I had a support network. I had even let myself be open to the fact that doctors will cut open my head, put a device inside, drill into my skull, thread wires into my cochlear and my brain while hopefully not damaging the nerve that controls my facial muscles. I was ready. And then I receive a letter saying they want me to do one more test. Regardless of how painful it might be, I said okay. I wanted to hear again. I miss my husband’s voice. I miss talking to my family on the phone who live in Australia.

On 11.3.2015, I was led into a small room and electrodes attached to my head. I was then told close my eyes. This is never a good request as I suffer from Agoraphobia with Panic Disorder (since 1996) and panic attacks sneak up on me. But in the past five months, I have found a way to keep them at bay without being unconscious. I have been taking ASL Sign Language lessons relentlessly with a great teacher and have been progressing well with my exams. I decided that I will keep my eyes closed in this final test, but instead of sitting in darkness and letting it take over me in the form of a panic attack, I would sign as much as I could remember without having my papers in front of me with the words. I got through the two hour test (barely) and was quite proud of myself with the amount of words I could sign, as well as the fact that I did not have a panic attack.

The next place we had to be was the Audiologist’s office. She at first refused to use the communication device. Not so professional. Then she used it and typed so badly that I could barely understand what she was saying. Then when she realised that her “mistakes” were crippling a medical appointment that I was again paying for, she suddenly remembered how to spell. She said that the electrodes connected to a computer which showed that my ears were healthy. They reacted to noise which was played through headphones during that 2 hours. Noise I swear on the life of everybody I love that I did not hear. Not a single thing was heard. I told her this and she said I can hear. My husband sat beside her, becoming as angry as I felt, that a so-called medical professional was not hearing MY words. I have not been able to hear a thing except for ringing since 23.11.2014. She shrugged and said “You can hear. The computer told me so.” She then went on to tell me I am obviously crazy and need to see a psychiatrist. I was so hurt, offended, angry, disgusted that I got up and walked out. My husband followed.

I cried my eyes out from the chair in her office all the way to the car, and to home. I had already figured out that DEAF means USELESS to Finland – a country that portrays itself to the world as a leader in Deafness. I guess this is the equivalent of Australia trying to show itself as a leader in human rights. Both of these things are now completely laughable. A total sham. Until you see the world as Hearing and then are forced to see the world as Deaf (a change that happens overnight), you cannot possibly conceive how significantly different you are treated, all of the rights you lose, how you go from being a valuable member of society to being a waste of space.

To add insult to injury, the assistive devices that I have relied on have been demanded back. They are to be returned IMMEDIATELY to the hospital. So now I go back to being Deaf without any help. Back to being able to only communicating with my husband and nobody else. Back to not knowing if the postman has brought a parcel to the door. Back to not knowing if Poliisi or Fire department are knocking because an emergency has happened. I am back to being truly alone.

I love Finland and I love Australia. Don’t get me wrong. I am an Australian Aboriginal who has witnessed horrors within Australia that the media never dare talk about. I am a Finnish citizen who spent five years learning the hardest language on Earth so that I could comfortably live in the most beautiful country on Earth.

UPDATE: Human Rights groups are now investigating the said Audiologist, and it turns out she is a repeat offender. She treats Deaf as non-people. She did end up removing all of my assistive devices, after which an emergency meeting was held between the hospital, my family and a Deaf social worker. The hospital admitted there were big problems with her and assured me that Deafies do matter in Finland. I am starting to believe that the Audiologist is on borrowed time in her job, which gives me some restored faith in humanity. As a newly Deaf woman, I have support networks in Finland, for which I am so grateful.

I actually said this out loud to myself when I was doing the dishes, right after Finland Deaf Association contacted me and said they will help me. I was so glad I made a noise about what happened.

 

~ Rosie Malezer.

How Would You Like To Be Called?

I had been anticipating my ENT appointment for months now and finally this day had arrived. But, what a day?!

To begin with, I had been a regular patient at my local audiology department but when we last phoned for another appointment – I was notified I had to be referred back to audiology by visiting my GP, to ask to be referred to ENT who would then put me back through to audiology. What a palaver but if I needed new ear moulds and hearing aids then so be it. I persevered.

Going through the broad spectrum of emotions and thoughts, as I decided I needed to be there at least twenty minutes early to claim a prime position, in the waiting room – close enough to scan lip movements for any names being called out. I had clarified with the receptionist if they would be calling out names, she confirmed this and that she would let them know I was hard of hearing. I explained that I was deaf to reinforce just how profound my hearing loss is. “Oh ok, same thing” she replied. I had to remain calm and took my seat albeit feeling rather surprised.

“Mumble Mumble” started off the processing by the nurses and trainee doctors. Feelings of dread were not appeased nor swayed when I noticed this LED display board to one side welcoming patients;

“Welcome to ENT you will be called through to see a member of the ENT team”

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My GP’s surgery has the same sort of contraption except they use it to announce patients’ names on it, for a certain designated room to be seen by Dr X or Y. So relatively I wondered why the ENT and Audiology departments despite being specialists, could not implement the same quality of service to be inclusive of all. Digital technology in this day and age has advanced greatly but not in our NHS hospitals it seems. This needs to change for the better, for their sake and ours. After all, they did ask how patients wanted to be called.

How would you like to be called?

How would you like to be called? On the screen in ENT.

A Tree House dweller informed us that he once had a placard with his name on it whilst waiting for his appointment, much to the other patients’ amusement at the time. Unfortunately that is how appalling services can get and this is what he felt he had resort to in order to be seen.

I was now sensing the other patients in the ENT waiting room were becoming restless, demanding to know when they would be next seen and this poor nurse was trying to appease them. By this time I had managed to pull myself together from feeling quite annoyed at being passed to audiology and then back again to ENT not knowing why or if I would be seen, if at all. If they were getting angry at being delayed by mere minutes, I thought to myself how should I be feeling only to be made to wait potentially a few months extra for my new ear moulds and hearing aids after waiting months already, especially in such an environment?! I decided I was not going to let them feed me any negativity and found some inner peace to remain patient.

Patience is a virtue.

Patience is a virtue.

From not the usual place names were being called out (the doors in the photo above) but further to the side – I just about saw my name, whilst glancing, being clearly spoken. My turn – Glee and amazement at catching that! I had the consultant this time around who was particularly interested in my family’s history of deafness – why they were deaf, how and if my children were “ok”. He then enquired how my hearing aids were. I mentioned I had had them for about ten years now and the last time audiology tried to provide me with a new pair they did not suit me so handed them back hence why I was now eager to try again as my current ones were starting to become slightly temperamental. I am also scared of being left stranded with nothing to hear with. He explained to me that any new pair of hearing aids is most likely not going to suit me based on my audiogram so he is ordering a head scan to find the biological cause of my deafness since my mother was born deaf – cause also unknown and my father became deaf through meningitis. He was especially interested in my mother’s deafness and if she could talk well. “Yes” I replied, “Just like I can”. The consultant then expressed. “I would like to put you down for a cochlear implant if the new hearing aids do not work for you”. Instantly emerged a brand new, never experienced before emotion and it is one I cannot find the words to describe.

As my consultant returned me to the audiology’s waiting room and found me a seat; I thanked him for his time. Suddenly I found myself dismayed, wondering why I was once again back in Audiology! Recurring feelings along the lines of, “Do they know I’m here / am I in their queue?” I scanned once again for any names being called out. Whilst scanning one caller, I had not noticed another came out to call but noticed she had gone into reception to make a query about this piece of paper in her hand. She came back out and said… My name – Glee once again! Phew, that was a close call I determined– I had missed that first time around because I only have one pair of eyes.

Ear moulds casts were made and she too concurred that the new hearing aids might not work very well for me due to the “different new sounds” they would make. But as anticipated I was going to have to wait at least two months more for another appointment to get and try out these new hearing aids. If only they had seen me when we first called as I was already a patient then, I would not have had to wait so many months more. She understood my frustration and said she would try to get something earlier.

A cochlear implant? Me?! I must admit though being an honest person, if I hadn’t written this article regarding cochlear implants I most probably would not have been as open to the idea. One thing I do know at this point in time is that I am not looking forwards to the realisation of being left with less than adequate hearing from prospective replacement hearing aids – my current ones have lasted me for so long and they will not always continue to serve me well. Remaining positive though that the new pair will work just the same or better and if not, perhaps the next steps are meant to be. I would very much prefer to have the same quality of sounds or better – not less. Just as you would expect a replacement PC of the same specifications or upgrade to better specs.

Does this mark the beginning of what could be the next stages in my journey? Only time will tell and more patience once again. Upon reflection, I realised that by asking patients to be referred through all over again it was giving the consultants a chance to catch those that may have filtered through first time around and a chance to produce a more updated yet better care?

Going back to the title of this article, “How would YOU like to be called?” Be the change you wish to see so start that ripple effect by being courageous and letting your GP’s surgeries, Audiology and especially the ENT departments know, just how THEY can be more inclusive and improve their services.

Carpe diem!

~ SJ (Sara Jae)

(Update: A few months after sending this to the hospital and relevant parties concerned, I returned to ENT to find their digital screen as photographed, displaying patient’s names as they were being called… Result!)