Today is ‘Rare Disease Day -2019’
So I decided on a blog about hearing aid technology that can and does enhance lives.
This http://www.nciua.org.uk/latest-new/ was brought to my attention several weeks ago. My first thought was FANTASTIC for those choosing cochlear implant but the more I thought about it and re-read it the more concerned I have become.
Of course this is really great news for those choosing cochlear implant, great that the criteria has changed making, I assume, application, assessment and presumably funding easier, however what about those of us using hearing aids, isn’t our access to the best available hearing aid technology as important?
I then read this: http://www.hearingreview.com/2019/01/better-hearing-better-living/ and felt compelled to have my say!
I have always advocated for those who wear hearing aids. Having worn them since I was 18 months old they have been my access to the world, to sounds that enabled me to access speech and oralism, also very importantly to access the sounds of danger when combined with visual clues.
My belief is being able to hear opens the door to a whole world of inclusion and independence, that said it isn’t easy. Learning speech takes years and lots of patience and commitment and it is exhausting.
All people born deaf have to learn to listen and understand sounds, not just profoundly and severely deaf but also those with mild and moderate hearing loss who do have similar challenges accessing sound. It is fair to say all deaf people have to work really hard just being themselves!
I have met profoundly deaf people doing well and mildly deaf people struggling. Level of deafness does not always demonstrate need, just some cope better than others. I have in my lifetime been bullied because I am “not deaf enough” the fact is I am deaf enough to need hearing aids, I hear only loud noises without my hearing aids and lipreading these days is out - deafblind is hugely challenging.
Since losing most of my sight I am almost totally reliant on hearing technology to access the world.
I am a hearing aid user, I do not require or want cochlear implants at this stage in my life I cope very well with state of the art smart hearing aid technology, technology that has enabled me to access so much more than I had ever imagined.
I work and have many contacts around the UK working for the NHS and the funding of hearing aids seems to be so complicated I have been unable to get the answers I’m looking for.
I am no expert on these things. I have tried to find out who funds what, it is all so incredibly complicated, NHS Trusts, NHS England, the list goes on, then there is the post code lottery which dictates who gets what hearing aids. Sadly many NHS Trusts have little or no experience of deafblindness and attempt to assume our needs! In short we miss out. It is a fact that the deafblind should be provided with two pairs of hearing aids and two pairs of glasses if appropriate, again this is a postcode lottery, but demonstrates the needs of those with dual sensory impairment do differ considerably. Surely in recognising this why do we not go further and offer the very best in hearing aids as smart hearing aids can and do to a degree compensate for visual impairment.
I rely on my hearing aids more than ever before, they are my link to people, to speech and to education and I don’t just mean school, I mean learning to be a part of society, away from silence and it’s isolation and in my opinion that is where so many problems can begin. The hearing aids currently provided by the NHS can only offer so much, having lost visual clues means they do not meet the needs of the deafblind.
Inappropriate hearing aids can lead to a lack of confidence, a vulnerability and often isolation and depression as blindness sets in.
At 20 years old I was very fortunate to discover GN Hearing and to benefit from “Smart Hearing aids”. In 2014 I was fitted with Resound LiNX2, then LiNX3D and now LiNXQuattro and it is really here that I want to begin:
Smart hearing aids have revolutionised access to sound, they are a real alternate to cochlear implant, they enable choice for those with all levels of deafness and whilst it could be said they are more expensive than the standard NHS hearing aids they are a fraction of the cost of cochlear implant and when considering what they provide for the deafblind they are priceless. I cannot put into words how enriched my access to sound has become. I now hear things I had never heard in my life, as a result I can do so much more. Not only that but my confidence is at an all time high, I can access the world around me.
Smart hearing aids have enabled me to use a telephone, they give me directional sound. They literally help compensate for my vision loss. Directional sound and enriched hearing means I can engage with people, I hear danger and I can live a pretty full life.
I’d really like to know why funding quality hearing aids is such a big issue, the ROI (return on Investment) like cochlear implants is clear, they provide inclusivity not just to sound but to our world.
Living with dual sensory impairment, deafblind is more than challenging and from my view point very frustrating as I know exactly what smart hearing aid technology is available and yet most are denied this because of cost.
In a paragraph at 24 years old I have experienced the evolution of hearing aids, from analogue to digital and now to smart hearing aids resulting in me being able to “Hear more, Do more and Be more” doesn’t everybody deserve that?
Usher Syndrome is the most common cause of congenital deaf blindness, that said according to recent research we are between 1 in 10,000 and 1 in 20,000 so in the scheme of things rare.
When I first got my applewatch from the molly watt trust I was really excited, being profoundly deaf and registered SSI with usher syndrome type 1. I hoped the watch would enhance my life tremendously.Setting the watch up was easy, even with my limited vision and it connected to my Iphone easily too. I was so excited , it felt like it was my Birthday or Christmas.
I had just had surgery for a new cochlear implant after being depressed for many years, the applewatch came at a time of positivity for me, a time where I had decided I actually did need an implant to enhance my life and give me more independence, the applewatch was a real bonus.
The applewatch enables me to feel vibrations on my wrist if anyone texts me, I can now access all notifications, which is so much easier for me as I often don't have my iphone in my hand.
My mum panics if she can't get hold of me , she likes to know I am ok , safe and sound !! I have now had my applewatch about 3 months , besides the easy set up to iphone it also connects to my cochlear implant via Bluetooth. I experienced music for the very first time, it was amazing and I listened to different types of music to see what types of music to see what I liked the best. Shazam is a really good app because if I hear music I like but I don't know what it is then Shazam tells me and I can then download the song. It really helps me because I can feel the vibrations on my wrist, like an alarm.
I don't like to put my phone under my pillow or cushion as this can be dangerous but with the watch on my wrist I can feel any vibrations directly to my skin and it alerts me quickly. Because of my limited vision I often walk into lamposts or barriers or poles, especially if I have my phone in my hand while I am looking at maps and directions, however, my applewatch has made this much easier for me because now I just look at my wrist and I don't need to have the phone in my hand. I can check my phone through my applewatch without having to put my hand in my pocket to get my phone.
My new applewatch really helps with navigation and this will be even better when I get my guide dog as I won't have a spare hand for my phone.
I use the activity app to see how many steps and what distance I have covered, this helps with my wellbeing and it is much easier being on my wrist rather than on my phone.
Applewatch has really helped change my lifestyle for positive reasons, I worry sometimes when I am out on the streets , I am really independent but can't help but be a bit anxious on the streets with people stealing phones, applewatch means I can leave my iphone safely in my pocket, I feel much safer. I use it to check the weather too.
The TfL (transport for London app) and train line app is amazing , I can look at my watch and know what time my bus is coming , I can see any cancellations or delays, this is such a help as I can't hear announcements made by bus drivers or on platforms or bus stations.
My mum and my brother text me a lot , they worry about me , my mum panics if she can't get hold of me and I will see like 5 or 8 missed face-time calls on my phone, but with the Apple Watch I know straight away if they have texted me. I can adjust the vibrations and Taptics which is great, so if I'm chilling on my sofa and maybe tired the vibration can be changed to tapping on the wrist to feel it more.
There are so many exciting apps to try, the next one will be Uber. I often travel across London so if I ever get stuck I can use the uber app as I cannot phone and order a taxi.
I absolutely love my football , I can't wait for the season to start in a few weeks, one of the apps for the applewatch is to keep up with football scores and statistics of the match, this will help me a lot, as when I go to football it is very busy and not lit very well, so will save me getting my phone out and I can see all match scores and the latest football news on my watch. I am so grateful for this gift from the Molly Watt Trust.
I feel I would be lost without mine now.
I would recommend Molly Watt Trust to anyone with Usher Syndrome, this small charity is a great help to those with Ushers, not just for assistive technologies they fund but also for providing support, information and for bringing people with Usher together.
Thank you MWT
I was recently talking about cochlear implant and was told the reason those of ANY age with Usher Syndrome (deafblind) that are profoundly deaf and wanting cochlear implant and who pass the NHS assessment will qualify for bilateral implants, however for those just deaf only children are considered for bilateral implants, adults would only get funding for one.
The deafblind are always considered for bilateral implants for the following reasons:
Better/improved speech perception
This clearly and correctly indicates differing need.
However I am horrified that the same need is not identified for hearing aid users.
The effect of blindness on somebody with any level of deafness is profound and yet to date nothing different is considered as extra assistance particularly as the ability to see danger diminishes.
As a hearing aid user who went from perfect vision to registered blind within two years I coped with my NHS hearing aids, however, I was almost run over twice, had it not been for my guide dog I would not be here today as it was she who alerted me to a lorry reversing from my left side on one occasion and secondly to a car that was so quiet I couldn't see or hear it as it appeared out of nowhere.
to say my confidence was shattered was an understatement and I could not leave the house independently for several months.
I am lucky to have a guide dog, there are so many like me who do not and who are very vulnerable because not only can they not see danger but they cannot hear it either.
Of course if there was nothing else we would have to cope with everything including the danger, however there are far better hearing aids available and I want to know why the powers that be do not consider that hearing aid users also need:
Improved speech perception
No different to those with Usher Syndrome opting for Cochlear Implants.
I used NHS funded hearing aids since 18 months old, starting with analogue and moving onto digital as they became available and have had lots of different models and they were fine until my sight went.
Being unable to use visual clues made me very vulnerable and more deaf and listening became all the more exhausting, however I am now benefitting from the latest in hearing aid technology.
Around 4 months ago I was fitted with ReSound LiNX² hearing aids which have not only transformed my hearing but have given me “Improved speech perception, I can localise (know where sound is coming from) and I have spatial awareness along with lots of other amazing features which do in a small way compensate for my blindness.
To date I believe these hearing aids are not available on the NHS which means sadly out of reach for lots who really need them.
What is even more sad and totally unfair is that these hearing aids which can not only enhance the life of somebody with Usher Syndrome or save life are a fraction of the cost of bilateral cochlear implants.
If bilateral implants are best for somebody with Usher Syndrome they should have them just like a hearing aid user should have access to the hearing aids that will give them the most.
Sadly for those of us living with Usher Syndrome there are few who specialise in the condition and we find ourselves almost an after thought, isolated by either lack of awareness or ignorance.
We have great audiologists and great ophthalmologists but few who truly understand our challenges or our journey with “make do” care and equipment.
We are a unique group with the ability to get on but we need not just technology but the BEST technology and appropriate support.
I was born with Usher Syndrome in 1960, I'm born Deafblind but it wasn't properly diagnosed until I was 28.
I had hearing aids from age 9, I was clumsy, I was going blind even then and I was told I was slow as I didn't speak very much and I was bullied.
Growing up was very difficult, life was hard from the beginning.
I have never written a blog before but I'm very upset with the media reporting wrongly about usher syndrome making it sound life is fun and easy.
I have fought all my life to explain what Usher Syndrome is for some journalists to get it completely wrong.
I am deaf, I wore hearing aids to access sound for 30 years and as a result I can speak.
My hearing got worse with age and 5 years ago I was lucky to get a cochlear implants.
I am not miraculously cured of deafness I am still deaf I am just able to access sound.
My blindness was with me the day I was born but progressed slowly and I have been registered partially sighted for many years.
Dual sensory loss is not fun, it is hard to live life always needing to explain personal needs, hard enough without the press not researching the condition, getting wrong and making it sound like everybody with usher syndrome is having fun being Deafblind - it is not fun and I find reading nonsense or being told how I should be based on the nonsense these people write, upsetting and demeaning.
If anybody is interested the only thing on my wish list is for people to understand the condition..
Sorry to vent my frustration