Name calling by Paul Leonard

Not blogged in a while – maybe I am becoming more placid, busier (that is true, I have),  finding more “stuff” to occupy my time with – who knows?  What I do know is last week, I was riled with our glorious NHS.  My leg operation got cancelled, again but that is a whole other blog post which I could write when I am in recovery.

For now though, I want to moan about another aspect of the NHS – audiology centres. Following the cancellation of my operation, my wife needed a new tube for her hearing aid because it had broken.  Fair enough, so off we trot to the audiology place – just a small walk away.  In the morning they have a walk in centre, great I thought, no appointment needed.  What I didn’t know until we got there, was the absolute shocking deaf awareness!  This is a place where people go to get aids to assist them to hear.

The receptionist who greets us, exaggerating her lips, “whattt issss yourrr name pleassse”?  Not even a basic BSL greeting with voice, “Your name what?” – NHS, your first fail, please learn basic sign language!

In the waiting room (I should have taken a photo), they have a massive TV which lists patient’s names.  On a piece of paper underneath it says that the screen is only used for appointments and not “walk in” patients – NHS, your second fail.

I find out whilst waiting that in all the times, she’s been to the clinic, not one member of staff has even a tempted a bit of basic BSL with my wife – really?!  I am shocked.  NHS, you suck!

The audiologist comes out and calls out my wife’s name, not particularly loudly either (or maybe I’m gong deaf!?) – So a profoundly deaf person in there, unless they have eyes like a hawk, the second someone comes out would miss their name being called – NHS, you screwed up again!

We go into the room, by which time my blood is boiling and so I feel that I have to bring up all these things.  I bottle it all, apart from the non functioning TV with the lack of names – “well, we use 6 different systems and the TV only works for people with appointments and not walk in patients”.  Fair enough, I calmly explain to her, but why can’t you even write names on a piece of paper like at the airport, “oh I didn’t think that!”.  Really?!

Why don’t the NHS attend basic BSL courses or at least a basic deaf awareness course?!  I know, I am going to Bangladesh to go and work with the locals where only about 2% of the entire population speak English …

name

… or maybe work at the airport collecting passengers whilst showing their names on a placard!

~ Paul Leonard

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Seeing is believing

 

blurred-vision

An article written by a friend of mine who is deaf who is also having an issue with one of her eyes.  A very interesting read!

“We always seem to learn facts from those amongst us who may be deafblind but never experience it for ourselves, in order to be able to understand and relate in full. Therefore, here is a particular albeit very new experience of mine because, seeing is believing…

Without delving into the medical side of things for privacy reasons, I am once again unbelievably grateful for the NHS today. Without them, every one of us would have a very different story to tell. Having been born deaf into a deaf family, I was also exposed to people who happened to be deafblind which meant I never really took my eyesight (or anything else!) for granted. I know from not just my own experience but also others too, just how incredibly scary it can be, realising and seeing how quickly an organ thus relatively a life can deteriorate. It can be as sudden as a blink of an eye.

I had been getting a red eye now and again that was becoming bothersome but since it was not infected, my GP suggested I pay a visit to the A&E department at an Eye Hospital.

The moment I walked into the reception area, I sensed just how chaotic it was but patience prevailed and I made sure the receptionist understood I would not be able to hear when my name was being called. He quickly reassured me and said he will make sure they know and if necessary, he would call me too. As I went to find a seat, there seemed to be only one row of seats facing towards the communal area where names were being called out. All the other rows of seats were facing the other way, the wrong way in my opinion. There was also some elaborate hand waving going on, all dedicated to yours truly which I admired and appreciated. After all, their efforts made my heart smile.

My diagnosis after personally researching upon returning home made me stop in my tracks. I had assumed it was something almost trivial yet in the end, without the appropriate medication or specialist care the quality of my vision (in one eye) would have deteriorated. As it is right now – at this precise moment in time, I hope, the “insult” will be contained and eliminated, the quality of vision improving with the help of prescribed medicine and patience. For it is not easy at all, not being able to see or hear very well simultaneously. I now have a much more detailed understanding of what deafblind people may personally feel, and experience. It is extremely exhausting, not being able to lip-read, let alone reading, despite feeling even more vulnerable when outside, exposed to all the elements and the vast lack of awareness in sensory loss be it sight and/or hearing.

Overall, the whole experience is proving to be a good challenge.

People sadly forget just how precious life can be so please, do look after yourselves exceptionally well and enjoy life to the max. For the rest of today, I am going to slumber, cherishing each moment with my children alongside mugs of hot chocolate and some extremely sensual chocolate cake. Hmmm mmmm indeed! Mamma mia 🙂

~ PAL

A related post; The next hurdle.

Come In Take A Seat I’m All “Hears” by Wendy Bebb-Sutton

Firstly I should introduce myself, I was born hearing, but following an accident at the age of sixteen, I lost almost all of that hearing. I wear two hearing aids, which, up until the age of forty I kept well hidden under my hair. After a complete lifestyle change at that time I no longer hid my aids, I finally arrived at the stage in my life where it wasn’t a secret, I was deaf, if my aids offended anyone, well that was their problem.

A visit to the theatre in Bristol one evening sparked the interest in sign language. The performance was enjoyed by the hearing in the theatre and the deaf, thanks to the lady stood on the side of the stage, who acted as interpreter . So where did I fit in? The answer was , I didn’t. For the first time in my life I realised that I needed to face my deafness. I struggled to understand conversation even with the use of hearing aids, indeed so many times I would nod, smile or even just say yes, when really I had no inkling of what was being said.

That theatre visit turned my life around, I knew then I wanted to be able to sign. So after attending various different colleges, I am now more than happy to communicate using BSL. I am also lucky that my partner also learned alongside me, thus making our communication now for the bigger part, sign. Well time moves along and I have reached the stage that when I have hospital procedures I use an interpreter, this is not an option but a necessity. I spent too many years relying on my partner listening to doctors or consultants, I now accept my deafness.

The question that I have asked myself recently is……”how comfortable is a deaf person, with an interpreter present at what can be, very personal times?” How many of us deaf folks lip read quite well, at least I do, but NOT with all people, it can be a real struggle. Sometimes, however, it is not always appropriate to have another person present, I for one have no idea of the confidentiality issues involved with an interpreter, indeed have no idea where I would find this information from. This uncertainty of another person at my appointments came to a head a few years ago, when I attended my first visit to a counsellor. This lady is hearing and was made aware of my deafness by my partner. So, from the onset we were both aware of our sensory differences. Well, I was extremely lucky, I find her quite easy to lip read , I don’t think my deafness has been an issue for her, however for me there have been issues that only perhaps the deaf or indeed a someone who needs to talk to a counsellor would understand. As everyone who uses BSL to communicate knows, facial expressions, body language and placement are a must, this involves face to face conversations. Likewise, if lip reading a hearing person you will need to watch the face of the speaker. This was, and is my stumbling block, I think that the majority of people when taking about something they are not comfortable with do NOT want to look at the other person. I must spend at least half my counselling session staring at the most uninteresting walls. This is a double edged sword, I am either embarrassed, ashamed or quite simply unable to look at my counsellor at these times. Which I believe is quite natural for all of us when in an uncomfortable situation, I find this thoroughly frustrating, I DO NOT want to make eye contact. Given that the only way I know what is being said, I MUST look at my counsellor. A difficult situation overall.

What comes to mind for me is the recent changes in the Welsh government laws that introduce accessibility for all. Surely questions need to be asked about the numbers of counsellors who are BSL users, I have tried in my limited capacity to find out the figures; I am given to understand there is a deaf lady counsellor in South Wales, however she works in Bristol, hardly easily accessible. The whole dynamics of mental health support from a patients perspective has dramatically reduced its services and availability in the last few years. Indeed our help through the avenue of counselling is limited to the magical ‘six sessions’ hoping to resolve matters and that’s IF the client has no communication needs.

So, given the fragile structure of the NHS in the counselling and mental health sector, exactly how does a deaf person cope in this situation? Well, for my part, I am incredibly lucky, I have a counsellor who gives me time, is patient, never rushes me, ensures when I can’t lip read certain words or phrases, to say explain using words I can follow. I am incredibly lucky to have someone who has given above and beyond what one would expect; sadly I am in the minority.

So my deaf friends, don’t hesitate to demand your accessibility, it’s your right. The need is there, for more counsellors who use BSL, maybe more deaf in this profession, certainly interpreters at sessions if we are happy with that situation. The name of my counsellor……….. no sorry folks, I won’t share, after all I have my own deaf friendly who ‘hears’ me. Go on, demand your deaf rights, accessibility for all.

~ Wendy Bebb-Sutton.

Wendy Bebb-Sutton

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”

IMG_0966

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!)

Giving & Gratitude

When it comes to kindness, there is absolutely no need to discriminate against any identifiable means because it is about humanity in general and acts of giving without any expectations of receiving in return.

For so long there has been a frustration of sorts building within me seeing the simplest things in life being taken for granted. Be it the roof over your heads, certain (branded) clothes being worn, the hot meals and comfy mattresses you lay upon, the NHS and free medicine being provided for us – the list is endless. The extremely close shave I experienced a couple of years ago taught me to take nothing for granted, now cherishing every little thing and being all around me.

“Be kind for everyone you meet is fighting a harder battle” – Plato

For this reason, I am now trying my very best to spare a moment to remember those who may have been left outdoors, especially during those cold winter nights. Recently I, via the Tree House, have been able to appease that frustration of helplessness. In true spirit of the Tree House, this has meant this is now starting to catch on with other dwellers through their acts of kindness. So far, we have saved numerous left over meals and received donations of various kinds of cakes with which we approached homeless people and gave.

“Thank you” they gratefully say. And if they have a pet with them, they are more than happy to share with their “best friend” – Without a question.

Nigel and his best friend who enjoyed the leftovers from our Chinese meal.

There are those who had everything and lost it all and there are those who dedicate every minute of their remaining lives to make sure the homeless has a hot drink at least. They are among the unsung heroes of today’s societies. They are trying their very best in being the change they wish to see in the world.

So let us organise café meet ups with CAKE(!) donating to a charity of your choice, perhaps asking cafés to participate in “Suspended Coffee” schemes too. When you have a meal, please save your leftovers and seek out the homeless in order to make their day. Maybe even nominate/challenge your friends to pay it forwards too. Please?

One can only hope this act of compassion and kindness will help to keep them going, to keep the faith and to have hope. That not everyone has a stone cold heart, that they are not oblivious to everyday people. They are still someone’s child who were brought into this world for a reason.

A drop of kindness goes a very long way, much more than you realise.

“Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.” ― Leo Buscaglia

 Carpe Diem – every day by being true to yourselves. x

~ SJ (Sara Jae)

Deaf & Depressed by Kim Lucas

Following the tragic news of Robin Williams taking his own life, the issue of Mental Health comes into discussion.

There are many types of depression and the intensity will vary between each individual and their circumstances. As it’s something I’ve personally dealt with and continue too, I wanted to write something in the hope that we can change the way the deaf community are able to seek help.

I’ve been diagnosed with depression twice. The first time I was given anti-depressants. I threw them away. Taking them wasn’t going to solve the problem and I didn’t want to just numb myself. The second time I had been struggling with my studies and felt overwhelmed. I remember going back to my parents for a weekend. They could see I was different. It wasn’t until my mum asked if I was ok in the morning that I completely broke. I cried for an entire weekend. Although there was no specific reason, I couldn’t stop. This was less than a year ago. I have a great support network in my family, friends and partner, for which I am very grateful. It doesn’t change the way my mind functions. It’s not something that everyone else is lucky to have. I was referred to a therapist for Cognitive Behaviour Therapy.

I received a phone call to discuss my symptoms. It was a long phone call. What my therapist won’t have understood is that a lot of my symptoms are associated with my hearing loss so the call would’ve made me feel worse. It wasn’t until I was in my mid-twenties that I became angry about my deafness because it impacted on me in so many ways. The constant frustration of not knowing what was going on when announcements were made on the tube and the general ignorance of most hearing people.

Most people that know me may be surprised by the revelation of my depression; it’s understandable when I’ve invested a lot of my time in appearing happy and having fun. I try to always enjoy what I’m doing and most of the time I am genuinely feeling good. But what most people don’t see are the mornings, afternoons and sometimes the entire days that are lost to my bed in an attempt to not have to deal with anything. They don’t see the anxiety I feel when I have to leave the house or the fear of going into an unknown social situation. They may consider my last minute cancellations are rude instead of crippling fear.

I’ve lost a ridiculous amount of jobs due to this. I have a morning where I convince myself where the prospect of dealing with people is worse than not attending, and then the prospect of communicating or confrontation with a superior is completely overwhelming to the point of no return. It changes what jobs I apply for; do I want to deal with people? Do I want to potentially mess things up because I didn’t hear correctly?

There’s a stigma attached to depression too. A lot of people will avoid telling an employer about their mental health due to their responsibilities being restricted or the potential whispers down the hallway due to too much alcohol at the office party and secrets being spilled. The fear exacerbates the depression, which drags you into a descent like you’re being pulled down by a weight around your ankle.

These are some of the symptoms associated with depression:

 

  • Not going out anymore, loss of interest in enjoyable activities
  • Withdrawing from close family and friends
  • Being unable to concentrate and not getting things done at work or school
  • Feeling overwhelmed, indecisive and lacking in confidence
  • Increased alcohol and drug use
  • Loss or change of appetite and significant weight loss or gain
  • Trouble getting to sleep, staying asleep and being tired during the day
  • Feeling worthless, helpless and guilty
  • Increased irritability, frustration and moodiness
  • Feeling unhappy, sad or miserable most of the time
  • Thoughts such as, “I’m a failure”, “Life’s not worth living”, “People would be better off without me”

 

As always, there is a lack of access for those with depression that are also deaf. The isolation already faced is challenging enough, when coupled communication, the encouragement of seeking help is lost amongst all the phone numbers advising you to call. E-mail isn’t always quick enough but to some, the prospect of speaking of the phone is impossible thus adding to the isolation.

I think we should start a dialogue with the charities that focus on helping those with mental health to address some of the barriers. Charities are a great source of help for most but sometimes we need that little bit extra care and attention. As it currently stands Samaritans offer a phone number, e-mail and pop in services. I think live text should be added to this service. The technology is there and even if it helps just one person, it’s worth it. Mind offer a text service but in limited hours and usually just to offer a call back service.

 

http://www.samaritans.org/how-we-can-help-you/contact-us

http://www.mind.org.uk/information-support/helplines/

http://www.nhs.uk/Conditions/stress-anxiety-depression/Pages/mental-health-helplines.aspx

 

These link to sites that offer advice for dealing with your depression

 

http://www.deafinfo.org.uk/wellbeing/depression.html

http://www.hearinglink.org/emotions

 

If anyone can think of a way to reach out to the Samaritans to get them to consider and potentially implement a live chat option – all options considered!!

 

by Kimberley Lucas.

 

 

 

(One can also read Sara’s post called “A Few of My Favourite Things” which she wrote in order to try and help other people with too.)

A Show of Gratitude.

“Yesterday is history, tomorrow is a mystery, and today is a gift; that’s why they call it the present.”

– Eleanor Roosevelt.

gift

On this exceptionally memorable date, I would like to extend my annual show of gratitude to the doctors and nurses of Charing Cross Hospital who several years ago gave me the best birthday present one could ever ask for. 

A second chance to cherish life and being able to watch my beautiful children grow up of which I intend to make the most of.

I never ask for much but I would very much appreciate it if you too could show your gratitude to our NHS services, especially the Doctors and Nurses who devote and dedicate so much of their time and passion to ensure we get the best care around the clock – please could you join forces against any NHS closures and get involved?

For if Charing Cross Hospital had closed down then, I would not be around today.

And last but not least, to our beloved Tree House and its dwellers for creating such a unique place without any barriers.

It is what we all make it.

Please accept this dedicated post as a token of my gratitude for being true to yourselves.

Thank YOU, to each and every single one of you, my family and my friends – for putting up with me 😉

Carpe Diem – Everyday x

~ SJ (Sara Jae)