Tag Archives: hearing loss

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

 

Enough is enough … it’s time to complain about the NHS!

Anger  Most of the time I’m quite a laid-back, balanced, understanding person but sometimes events conspire to bring me to a head of steam and that’s what happened this week!  A letter of complaint is now lying on the desk of the Chief Executive of Sunderland City Hospitals NHS Foundation Trust complaining about direct and indirect discrimination against people with hearing loss.

What’s got me all riled up?  Well, I just attended the last of three self-management programme training days run by Hearing Link.  The course itself is useful (teaching you how to manage your hearing loss better) but the most useful thing was sharing experiences with other people who are hard-of-hearing.  I don’t really come into daily contact with other people with hearing loss so this was a bit of an eye-opener.  Although we all had a positive mind-set, the complaints we had were legion and all about similar things – the lack of understanding about hearing loss by the NHS!  It added to my recent experiences by really tipping the balance and finally driving me to put pen to paper.

At Christmas I was unlucky enough to fall down the last step of a dimly lit staircase while away on holiday, badly twisting my ankle and aggravating a previous shoulder injury (and no, I hadn’t  been drinking).  Once back in the UK, I decided to get an x-ray of my ankle and to visit my GP to get a referral for physiotherapy for my shoulder.  It all went downhill from there.

As I’m hard-of-hearing and can’t hear on the telephone any more, I use email, texts and messaging all the time.  However, my experiences in one week consisted of the following:

– to make an appointment at my GP I can only contact them by telephone

– to make an appointment for an x-ray, I need a letter from my GP who can only be contacted by telephone

– to make an appointment for physiotherapy I can only contact them by telephone at which point I need to do a 20-minute assessment by, you guessed it, telephone

– to make an appointment at audiology, I can only contact them by telephone

– when complaining to the NHS about discrimination against people with hearing loss, guess what? They asked me to contact them by telephone!  Aaaaargh!

If the audiology department of the local hospital can’t get it right, then what chance do we have?Sometimes you just have to take a stand!

Watch this space for updates … I’m not letting this one get away!!!

telephone in hand

Radio 5 Live asks deaf people to phone in about their hearing loss, doh!

Well it was an interesting day yesterday!  Facebook and Twitter vibrated with outrage as deaf people tried to get their heads around the latest lack of deaf-awareness by one of the UK’s national organisations.  I’m surprised you couldn’t hear them shouting!

Radio 5 Live Breakfast’s show asked deaf and hard-of-hearing listeners to phone in and tell them how hearing loss had affected their lives – what a ridiculous thing to say!  Apart from the fact that deaf listeners probably wouldn’t be listening to the radio anyway, how could they ring in when they couldn’t hear what was said?  You have to laugh or you’d go mad 🙁

The programme featured an interview with Roger Wicks, Director of Policy & Campaigns for Action on Hearing Loss, with a feature about David Hockney (the artist) about how hearing loss had made him feel isolated and withdrawn.  I’m sure it would have been very interesting if I’d been able to hear it! http://www.bbc.co.uk/radio/player/b04p55w4

Anyway, after lots of tweeting to and fro, BBC 5 Live finally set up a text message number and an email address so that people could write in with comments and reactions.  It took a while but they got there eventually.  I think the reaction from their audience took them by surprise: “you’ve managed to alienate the entire deaf community” was one response … no pulling punches there!

So, the good news is that BBC 5 Live is going to go away and do their research then feature hearing loss again when they’ve got all their ducks lined up in a row properly.  Raising the profile of hearing loss is great and so I’ve asked if they can get live captions set up this time so we can watch/read it as it happens, rather than having to wait a week for a transcript.  After all, it’s supposed to be Radio 5 Live, not Radio 5 in 2 Weeks’ Time!!!  We shall all watch with bated breath …..

open-mouth-and-insert-foot

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/