One of the things I love about being part of this community is the international perspective. It’s a real eye-opener learning about the experiences of fellow hearing aid users in other countries. In this post, I’d like to explore the issue of a lack of ‘follow up support’ for adults new to hearing aids here in the UK and I would love to know if you have a different experience where you live. Of course, there may be some great local initiatives in the UK that I don’t know about so, if you have some examples of good practice, this would be a great place to share them!
If someone finds out I’m hard of hearing, one common response is, “But you look so normal!” Since I first confronted that statement as a junior in college, I now know how to feel when someone says it. I have made peace with the implication of the statement because I know the idea comes from ignorance. With a little bit of patience, time, and education, the inference of “But you look so normal!” can easily fade.
What is still a stumbling block for me is when people tell me, “But I don’t see you as disabled!” This statement is one that is far more common than “But you look so normal!”. Variations of it have been applied to other minorities, who have responded by discussing the destructiveness of this idea. Most notably, George Takei wrote a blog post called “I Don’t Even Think of You as Gay.” “Well, You Should.” which explained why it matters for a gay individual to be recognized by their peers. When talking about ignoring characteristics that make one a minority, Takei said: “That person has likely suffered internal conflict, social opprobrium, and personal pain that you have never experienced. So long as there is prejudice and inequality, it will continue to matter.” Absolutely is Takei correct in this idea, but where it becomes complicated (for me, at least) is in the consequences of being seen as “disabled.”
The 8th to 12th September is Lipreading Awareness Week in the UK and so my post is in honour of the Lipreading tutors around the world. Thank you for all you do!
When I got my first analogue aid, I shoved it in a drawer because it amplified everything and the sounds of cutlery or a running tap scared the living daylights out of me. Nobody checked up on me and it was left up to me to ask to be referred to a different hospital where I’d discovered they were (at that time) trialling the use of digital hearing aids.
At the second hospital, I was given an ‘in the ear’ aid and told to ‘build up use gradually from an hour a day to all day’. The hearing aid was set far too loud and the audiologist refused to turn it down to make it bearable (let alone comfortable) and so, it too got shoved in a drawer never to see the light of day again.
I then enrolled on a lipreading class.
Let me tell you an old story. When I was a student, I had long, curly hair, flowing in the wind, going down on my shoulders. I was free, young, you know the drill.
I was walking in the street and passed a guy with the same couldn’t-care-less, disheveled hairdo. A few steps down, I turned back and looked at him. Surprisingly he had done the same.
As a Phonak user, I have found many benefits to my beloved Bi CROS hearing aids, (getting a sense of sounds coming from both left and right when I’m profoundly deaf in one ear for a start off) but there has always been one little niggle with the aids for me and that’s the Soundflow setting.
In the Soundflow setting (the default setting that comes automatically with the hearing aid), I’ve had continual problems with background noises suddenly and unexpectedly cutting out. This is very disconcerting; especially when the ‘background noise’ is the very thing I’m listening out for, i.e. traffic. But, even if it’s the sound of a river flowing or the extractor fan on the cooker hood, it’s still an odd experience.
The end to every journey can be met with excitement or sadness: it’s all on how you look at it. The past year has flown by before my eyes. There were days when I was tired and thought that it was the longest day of the week, however the majority of time has left me saying to myself “where did the week go” by the time Friday came. So then how do I look at the end of my journey? I see it as an exciting time as well as a sad time.
The past year has been an experience that has made not only a professional impact but also a personal impact on me. As an audiologist, I have grown substantially. As I wrap up my time here at headquarters I feel as though I have gained the knowledge and experience of a 5 year time span. I recognize that the intensive 12 months behind me have challenged my educational foundation (in a good way) as well as required me to think ‘outside of the box’ by looking forward 5 years to the future generation of hearing aids and the people who will be wearing them.
This challenge has made the biggest impact. As you emerge from school with a fresh perspective you still remain closely focused on the present, the here and now. You look at each day and each patient regarding how they are getting along at that point in time. You never challenge yourself to think 5+ years ahead. Think of what the technology will be like, what hearing loss and medical intervention may be, as well as the average age and profile of the clients you will see. Can you wrap your head around it?
As promised, here are my impressions of the Bolero hearing aids I’m currently trying out (hoping I don’t get any of the technical stuff wrong here, do tell me if I did!). They have open tips, like my Widex ones have, but are BTE (entirely behind-the-ear) rather than RIC (with the receiver, the part that produces sounds, directly in the ear canal — this would be the Phonak Audéo model, which I might try in future). My Phonak audiologist Jennifer tells me it doesn’t change much, acoustically: a RIC just moves some of the technology away from behind the ear, allowing the part that sits there to be smaller — important for those, who, like Steve, appreciate when their hearing aids are invisible.
Just last month the FDA released their latest Internet and Social Media Guidance for Pharma and Med-tech companies. If you haven’t read it yet, have a look here.
With the rise and use of social media across all industries, Med-Tech was bound to adopt social media at some point, especially given the prevalence of customer usage and relatively cheap way of reaching customers and/or offering customer service via electronic means. The introduction of this document points out that its purpose is to illustrate the agency’s current thinking regarding communication of benefits and risks through social and online media. The hearing aid industry generally does not fall under the exact guidelines as indicated in the latest draft, however the overall suggestions and illustration of what the FDA lays out is obviously food for thought for any health care organization marketing to customers online.
In the U.S. the FDA generally recognizes two types of labeling; that which is required labeling (think approval labeling) and the second which is promotional labeling (subsequent marketing materials/labeling). They recommend considering the following when promoting products on social media and online mediums:
There’s a brilliant book called ‘The Tent, the Bucket and Me’ by Emma Kennedy, which tells of her childhood camping experiences. Now, I don’t profess to have any of her talent or wit, but I did recently go camping and I thought I’d share the trials and tribulations of camping as a hearing aid user and I have to say that I foresaw none of these difficulties.
Given that I get on with my life without proactively thinking abut my hearing aids on a day-to-day basis (beyond making sure I have spare batteries in every handbag and every coat pocket), I was not prepared for how much harder camping would make communicating.
Would you believe that for the whole of Zambia, there is only one audiologist? You can imagine that for students from the Department of Speech, Language, and Hearing Sciences (SLHS) of Purdue University in the US, spending two weeks in the field on an exchange programme in Zambia must be quite an adventure. An opportunity to see healthcare in a completely different context, to gain clinical experience in a setting where their actions have meaning, in addition to the life experience every exchange programme is bound to provide.
I discovered their programme though the blog set up by their professor. The blog is a very lively of their trip, with lots of anecdotes and information on what they did there, from the preparation classes before their departure to a complete account of their last work day in Zambia. Go and read it and look at the photos!
I wrote to them to see if they would be interested in contributing an article for Open Ears. Two of the students, Breanne and Andrea, sent me this overview of the programme and what it had meant to them.
Graduate and undergraduate students at Purdue University have the opportunity to participate in the speech, language, and hearing sciences (SLHS) in Zambia study abroad program. This past May a group of 12 students traveled to Lusaka, Zambia to learn about the culture and provide speech and hearing screenings. We had the opportunity to meet numerous professionals at a variety of facilities to learn about the healthcare system and the services for children with disabilities in Zambia.
This year, we received a donation of hearing aids from Phonak and were able to bring these to Zambia to fit as needed. At our main partnership location, Beit Cure Hospital, we fit a hearing aid on a girl who was about 11 years old as well as an older adult. We programmed each hearing aid for their individual hearing loss and made an instant ear mold. Using instant ear mold materials is much more efficient and is used very frequently in Zambia.
Both of these patients were so thankful and we hope the follow-up goes well. The 11-year-old girl is doing very well in school and we hope that her new hearing aid will help to decrease her listening effort and enable her to make even greater progress. The adult we fit told us that she had walked to Beit Cure Hospital, which took about an hour for her to reach us. Transportation is a struggle for those in need of healthcare in Zambia and this woman walked an hour to avoid paying for the bus. She was so thankful and said “God bless you for your help” to everyone involved in the appointment, making it a very emotional appointment. She is very excited to try her new hearing aid at church and plans to continue to follow-up at Beit Cure Hospital as needed.
Working in the audiology department at Beit Cure Hospital in Zambia was a little different from the experiences we were used to at the teaching clinic within Purdue University. Everything was very fast paced and we worked alongside an ENT, which was a new experience for many of the students. Zambia has one audiologist and several audio technicians and nurses who do remarkable work. They make instant ear molds, counsel patients and answer questions, remove cerumen and foreign bodies from the ears, and many other tasks related to the ears and hearing. The teamwork we witnessed was amazing. Everyone collaborates as needed to ensure his or her patients receive the best possible care.
This was a very unique experience and we are so fortunate that this is offered through Purdue University. This was the second class of students to go to Zambia and the first time we were able to bring hearing aids to fit (thanks to Phonak for their donation!). Hopefully the program will continue and many students have the opportunity to participate in this program. We learned so much more than what we provided.
I think it’s important to remember that hearing care professionals work in very different contexts all over the world. I hope we’ll have more posts here in the coming months which go beyond Europe and the US!
Photos from the SHLS in Zambia blog.