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.