Category Archives: research

So you have hearing loss too? Soundz Off can help

Welcome to a very large club – 11 million of us in the UK have hearing loss (that’s one in six people) predicted to rise to more than 14.5 million by 2031 (Action on Hearing Loss 2015).  Add this to the 360 million people worldwide with hearing loss and that’s a very big club!

Like all clubs we have something in common – similar interests, ideas, problems and difficulties to overcome. Like all clubs, there’s lots of information out there relating to our speciality interest, yet only 1% of medical research spending goes on hearing loss and it’s surprisingly difficult to find the information we need.  So where do you find that information?

Many people deny they have hearing loss for up to 10 years and, for most of us, our only experience with a hearing professional is being referred to audiology for a hearing test and hearing aids.  Then we get waved off from the hospital and left to our own devices – not helpful when we’re usually reeling with shock at the diagnosis, baffled by the technology and unaware of how to help ourselves (and others) to cope better with this invisible disability.

That’s why I created Soundz Off in 2014 http://www.soundzoff.org – an independent website which brings together hundreds of links to useful websites related to hearing loss: equipment, support organisations, technology, social media, forums, apps, research, events … the list goes on.

As someone with hearing loss myself (I have moderate sensorineural hearing loss in both ears and wear two digital hearing aids), I was amazed to discover this didn’t exist before. Over the years I found hundreds of organisations which exist to support people with hearing loss but nobody ever told me about them – I had to support myself and find them myself one by one. Nobody ever brought that information together in one place … until now.  Soundz Off does the legwork so you don’t have to!  We also have an active Facebook page updated daily with the latest information and news on hearing loss http://www.facebook.com/soundzoff  – how I wish this had existed 20 years ago when I was just starting out on my own hearing loss journey.

Hearing loss affects people in different ways and most of us struggle with this challenging disability.  You’ll probably recognise where you are in your own journey represented by this graph of the different stages of grief:

stages of grief

As someone who’s travelled right though every stage of the curve and eventually adjusted to my own hearing loss – even to the stage where I’m now working as an advocate and welfare officer for people with hearing loss – Soundz Off is my gift to you, whether you’re new to hearing loss or you’ve been coping with hearing loss for a long time.  Discover new information, make new contacts and friends, learn about what’s being doing to cure hearing loss and tell us about organisations you think we should add to our Directory http://www.soundzoff.org/directory

The good news (there’s always good news!) is that for every stage of your journey there are organisations and people out there who can help you.  Soundz Off ensures you don’t have to travel that journey alone and we can all learn to cope better with hearing loss in a hearing world.

So, as I said at the beginning, welcome to the club!  Good to meet you.

Tania Le Marinel

 

When you just HAVE to do something about hearing loss!

Over the years I’ve developed a twitchy antennae for anything ‘hearing-loss’ related.  I watch the latest news, follow the latest research, support campaigns and try to raise the profile of hearing loss generally.  I’ve signed petitions and taken part in campaigns, organised loop squads, raised money, challenged discrimination when I see it and have been a what you might call ‘low-level agitator for change’ for some time.

But now I’ve decided that I’m ready, finally ready, to get out there and promote HEARING LOSS in big capital letters by volunteering to be a Trustee for Action on Hearing Loss.

Anyone with hearing loss knows that we all have to put up with so many things which are wrong – no subtitles on television and films, lack of understanding by the general public, threats to funding for hearing aids, noisy environments, feeling left out of conversations …. the list is endless.

Coming out of the ‘hearing disability’ closet is never easy – there have definitely been some highs and lows – but as I’ve ventured further out into the light and actually begun to take a lead in raising the profile of this invisible disability, I’ve realised I want to help those millions of people, just like me, who are still stuck in the shadows or not coping well with a life affected by hearing loss, tinnitus and deafness.

Action on Hearing Loss has fought hard to challenge these discriminations for more than 100 years (the RNID was started in 1911). I’m proud to be a member of this outstanding organisation … but now I want to do more.  I want to make discrimination on hearing loss obsolete, I want to help influence the movers and shakers who can make a difference to our world, I want to make life easier and better for TEN MILLION PEOPLE in the UK who find themselves struggling through no fault of their own.

And if this sounds like it’s a lot of “I want”, well that’s because it’s true.  Yes I could bore you all silly with a recitation of my CV, my strategic and operational knowledge gained through the school of hard knocks and 30 years of working in the corporate, SME and third sectors.  But it’s not about that – it’s not even about me at all really.  It’s about YOU, about YOUR life, about the help YOU need to cope better with hearing loss, and about how I can help YOU.

I believe passionately that our world can be better, that with the help and support we need, we can all live a happier more fulfilling life, even if we have hearing loss.

So, if you’re a member of AOHL, and you can hear the passion in my voice and think to yourself: “that sounds like some-one I want in my corner,” then please put a cross next to my name in your ballot box and send your envelope back to AOHL as soon as you can.  I don’t know everything, I’ll have a lot to learn, but I promise you this: if you vote for me, you’ll never regret it.

actions

 

Come on, Sky! Get your act together!

I’m thrilled to see my guest blog is on the Action on Hearing Loss website today!

I’ve been a member of Action on Hearing Loss for years now, including spending a year fund-raising and supporting their activities, and it’s really satisfying being able to play a part in campaigning and raising awareness on hearing loss issues.

I was delighted to be asked to write a response to the recent ATVOD report about the poor levels of subtitling for on-demand services.  We all know the technology exists to make this happen – the BBC has 100% of its content fully accessible – so other broadcasters are lagging way behind and they need a sharp poke with a pointy stick to get them to catch up.

Yes, there are technical difficulties, but if the sound went off on normal programmes you wouldn’t be able to hear yourself think as a scream of protest went up around the world from people with normal hearing!  Why should we be any different?

Sky is missing a huge financial opportunity here too – there are 7.5m people in the UK who regularly need subtitles but can’t access anything on Sky’s ‘On Demand’ service.  It’s so disappointing/frustrating/irritating!!!  If Sky got their finger out and provided subtitles just think how many more potential customers they could get!

If you feel equally aggrieved and want to do something to support this campaign, contact campaigns@hearingloss.org.uk

http://www.actiononhearingloss.org.uk/community/blogs/our-guest-blog/subtitles-an-absolute-essential.aspx

frustrated

ATVOD report shows broadcasters are failing ‘on-demand’ users

The new ATVOD report out today shows that 96% of Sky TV’s on-demand services have no subtitles.  Well that stinks!  No wonder we all get so annoyed when we have to pay full price for our Sky subscription but can’t access most of it online because we can’t hear the dialogue.

And just to show that feeble excuses about ‘technical difficulties’ won’t be accepted – contrast the results against the BBC who have 98% of their on-demand services fully accessible with subtitles for the deaf and hard-of-hearing.  Well done BBC!

Action on Hearing Loss are supporting people with hearing loss and asking them to complain to broadcasters direct so please help them out.  Get emailing, tweeting and shouting loudly about how unfair this is.  If the BBC can do it, then so can everyone else!  http://www.actiononhearingloss.org.uk/get-involved/campaign/access-to-television/subtitles-are-playing-catch-up-on-video-on-demand-services.aspx

Read the full ATVOD report here http://www.atvod.co.uk/news-consultations/news-consultationsnews/atvod-report-reveals-vod-services-becoming-more-accessible-and-calls-for-further-progress-to-be-made

It’s a work of art! Soundz Off looks fantastic!

Wow! Just two of many lovely comments I’ve received since Soundz Off was featured in the 100th issue of ‘Action on Hearing Loss’ magazine which came out yesterday.  The site was very positively reviewed by Jean Straus in the “Time In” section on page 36 and described as: “just what the doctor ordered”.  Great publicity!

It means a huge amount to me that other people are finding the site useful.  One lady (deaf since the age of 2 and knows a huge amount about hearing loss) still founds lots of new information to help her which makes me feel a huge sense of satisfaction.  Another lady said that it will be a constant source of reference to help herself and her daughter ….. RESULT!!  If my site is already helping people, then it’s doing its job!

Another benefit of the site is that it’s not just helping other people but it’s also hugely helping me.  I’m more informed and empowered about the latest news on hearing loss than I’ve ever been before – keeping an eye on news sites every day (looking for titbits and scoops for the Soundz Off Facebook page www.facebook.com/soundzoff) is opening my eyes to the massive amount of work being done by people all over the world.  There suddenly seems to be a tsunami of effort, determination and innovation heading our way!  Not sure whether this was already there and I hadn’t realised it or that it’s the perfect example of serendipity – whichever, it’s great news either way!

Unfortunately the AOHL magazine isn’t online yet but the review is shown below, page 36.  And remember to like and share our Facebook page too – thank you!!

AOHL article Nov 2014

Access to Work? Hmmmmm…..

Over the last few months I’ve been having an on-going debate with Access to Work, the government organisation which provides grants to help people get work, stay in work or start their own business.  As a self-employed management coach, losing my ability to hear on the telephone has been a real bummer – how do you contact potential new clients when you can’t hear on the phone any more?

So, I investigated AtW and discovered it was possible that they could fund a virtual PA who could answer my telephone calls for me.  That would work!   I did lots of research, found someone suitable, prepared my application and applied.  For £70 pcm I could get all the help I need, my problem would be solved and life would go back to semi-normal …. the holy grail.  But no joy – I was refused.  The reason was that they wouldn’t fund somebody to do my job for me.  Well I didn’t WANT them to do my job for me – I can do my coaching without help – I just can’t hear on the phone so need somebody to be a pair of ears for me.  I appealed, but still no joy.  They wouldn’t budge.

Finally I managed to get an assessment interview so we could discuss my problem and see if there was another solution and a very nice man called Graham came to see me this morning.  Having heard my dilemma, it soon became apparent that there isn’t a technical solution to my problem (it’s not about volume for me, it’s about tone and clarity as my hearing loss is exactly the same frequency as that used on telephones to compress voices) but apparently AtW are very reluctant to fund ‘human’ solutions.

However, all is not lost!  A glimmer of light at the end of the tunnel is certainly better than nothing and apparently AtW might consider funding the latest hearing aids, Amplifon’s ReSound Linx, which are iPhone compatible and allow you to programme your own equaliser and adjust tone/quality. Great!  So now I’m back on the hunt to find a dispenser where I can try out these aids and see if they help.  I’ve learned the hard way to temper my hopes and expectations against reality – maybe it won’t work but if I don’t try I won’t know.

£3500 for two hearing aids seems poorer value for money than £70 pcm for a pair of human ears for 4+ years but there you go.  Nobody ever said the government was based on common sense!  And if they don’t work, it’ll be back to the drawing board again but that’s a story for another day …..

Deafness research is gathering momentum – is a cure finally in sight?

Every week I check the newsfeeds to check out the latest research into hearing loss.  I’m reassured by the fact that, all over the world, scientists are quietly beavering away to find ways to restore hearing and/or make life easier for people with hearing loss.  As they work away in their labs and offices they probably don’t realise that millions of us are silently watching from the wings, willing them on, allowing ourselves to hope that a cure may finally be in sight.

Living within easy driving distance to The Stadium of Light football stadium, the home of Sunderland Football Club, I can’t help but be struck by how relevant their motto is to this situation.  As they recover from a historic beating of 8-0 by Southampton FC last weekend, I totally sympathise with their supporters: “It’s the hope we can’t stand.”  I know that hope can be a cruel mistress so do we all hope in vain or will we ever see a cure for hearing loss in my lifetime?

So today I was really encouraged by the news that scientists have used tamoxifen – a drug more commonly associated with cancer treatment – to restore hearing in mice using gene therapy techniques.  The mice weren’t actually deaf – they had partial hearing loss – but it’s still an encouraging sign that progress is being made in restoring hearing.  It’s amazingly hopeful!

Am I happy that mice are being experimented on in labs? Urgh, it’s a tricky one.  No, not really, but if it can help find a cure for 360 million people across the world, I guess I have to re-adjust my values and beliefs system and let myself believe it’s all for the greater good.

So if you’re a scientist reading this, then you have my whole-hearted thanks, my total support, my understanding that you are generously devoting your life to improving the lives of others and the reassurance that 360 million people worldwide salute you.

http://www.foxnews.com/health/2014/10/21/scientists-find-method-for-restoring-hearing-loss-in-mice/