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