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!)

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2 thoughts on “How Would You Like To Be Called?

  1. I think it should be mandatory for all hospital departments but especially ENT and audiology to have a visual alerting option as well as any auditory ones (some people are visually impaired, others have multi sensory impairment) and there should be a system for people who need to be collected either by a pair of matching number-cards or something else.

    Under the Equality Act the NHS is bound by at least 3 different sections. 1) Public Sector Equality Duty which is to promote equality and foster good relations with people with protected characteristics (disability is one). 2) Duty to make reasonable adjustments which in this case would be to have a system which works for alerting patients on request. 3) Duty not to indirectly discriminate by rubbish processes which is clearly not happening cos they have a process FOR deaf people which doesn’t work for us without distress “substantial disadvantage”. It is lawful to favour disabled people if to do otherwise places us at substantial disadvantage. Hearing friends in the “normal world” are horrified at the idea that audiology/ENT don’t have decent alerting people systems…

    Maybe you could write them a nice letter thanking them for the good experience medically but suggesting the calling your name system is below par and asking them why they don’t have a visual alerting system given they work FOR disabled people… It might chivvy them into action nicely.

    I am intrigued as to why the ENT and audiologist think that modern hearing aids can’t do as much as your 10 year old models? Is this because CIs have replaced the market for people as ‘deaf as you are’? I would want to know more details about why this prediction is being made and what ENT/audiology are doing about it (insisting the hearing aid companies make better hearing aids).

    Interesting how they introduced CIs to the conversation, it seems to be a thing many of my profoundly deaf friends are having offered at the moment. I guess it can do no harm to investigate them cos you will learn stuff about your deafness and coping and maybe why you manage so well with HAs compared to some others. Also as a deaf child of deaf adults you will have had a leg-up in cognitive developmental language learning terms compared to most deaf folk who are children of hearing parents as it sounds like your parents used sign and English and probably as a household had strategies etc.

    I am amazed at the re-referring you back via GP nonsense, what I think of as NHS nonsenser with no purpose except to annoy your GP and waste everyone’s time. I guess as a BAHA user I have it a bit different (like CI users) in that I get secondary care to secondary care referrals or in my recent case got myself referred directly by emailing the audiology I wanted and requesting an appointment. I guess having titanium bolts in your head is hard to fake 😀

    Good luck with this path you’re looking down and wherever it takes you I hope it’s a positive and learning experience for you.

    • Thank you very much for taking the time to comment – much appreciated and very informative 🙂

      As I understand it, my current hearing aids have the ability to be switched on in analogue mode which suits my residual hearing best. The new ones I tried about 8 years ago I ended up having to give back did not have that ability (neither do any of the subsequent ones) – I could not make any sense of the sounds it was providing me with and it left me feeling very lost. Looking forwards to trying again. My current ones need replacing / updating as they are rather old and is not performing as best as they could. Either that or my residual hearing is slowly deteriorating 🙂

      I will always be more than eternally grateful to anyone in the medical profession for their expertise, time and patience as noted in this article “A show of gratitude” https://viewsfromthetreehouse.com/2014/08/06/a-show-of-gratitude/

      Just that the NHS’s calling system needs upgrading to be inclusive of all, fairly.

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