NHS turns a deaf ear to the needs of hearing aid users.

I wish to tell you about a silent scandal and hope that by the end of this article, you too will feel at least some of the outrage that currently has me in its grip. This issue may only affect a small minority of people but the suffering, mental anguish and loss of quality of life for these individuals cannot be overlooked.

Frustratingly, this problem is completely avoidable if only the NHS would listen to the needs of hearing aid users and continue to allow them a choice.

You may have heard of campaigns in recent years to provide digital hearing aids to all those who need them and to shorten waiting times, all very laudable I’m sure you agree. The assumption is that digital is always better and for those who find it so it is indeed good news that digital aids are now freely available.

Now here is the bit where I reach for my soapbox. Digital aids are NOT suitable for all people with hearing loss. It’s time to speak out against this brave new world which marches forwards in all it’s technological glory as it tramples in the dust the people who need analogue aids. Can you imagine how it feels for someone who has been enjoying a full life, working, socialising and making music to then be told that the hearing aid that enabled all this is no longer to be provided.

Online forums are full of heartbreaking tales of the devastating effects of this forced switch to digital. People who can no longer hear their loved ones the way they used to, parents who can no longer hear their children crying. Others who have had to give up their love of music, either playing or listening to. It’s not surprising that depression can be the result when the NHS take away your “ears” and replace them with a pathetic, unsuitable alternative, while at the same time arrogantly claiming that they know best. No doubt the digital aids are technologically outstanding, but this does not always translate into reality.

My husband is happy with his old analogue hearing aid. He works full time and in his spare time he plays guitar and sings in a band. Unfortunately his old aid will not last forever and he has been issued with a new digital hearing aid, the result is horrible. We have known for some time that this day would come and it’s hung over him like a death sentence. He tried digital a few years ago and I’d never seen him so miserable. There was no way he could go to work or play music with it. This new digital is no better but he has been told he must get used to it. He’s trying so hard but to be able to work or go to band practice he puts his old aid in. This is not a long term solution.

We have hit a brick wall trying to find out where we could buy another analogue hearing aid if the NHS will not provide one. It seems the whole world is going digital and it appears that many manufacturers are no longer making analogue aids now that health services have cancelled the contracts to purchase them.

What can be done? Well we need to raise awareness and support the rights of all the people who are battling alone against their audiology departments. It’s easy for an individual to be told that it’s just them that have a problem and they must accept it and get used to it. Let’s not allow this.
It would be great to see as many people as possible join a facebook group to put pressure on the NHS. The group will be open to all people who wish to support the human rights of analogue hearing aid users, as well as the users themselves. We need to show them that they are not alone in this fight.
So, I have started a group, please join and please be patient with me as I am a novice with the workings of facebook.
http://www.facebook.com/home.php?#!/group.php?gid=116042521781196

Thank you for reading and please copy and paste the links into your browser as I am finding it impossible to make them clickable.

Here are just a few threads so that you can see for yourself that this is not just one isolated case.

http://www.bbc.co.uk/ouch/messageboards/F2322274?thread=7661278

http://www.bbc.co.uk/ouch/messageboards/F2322274?thread=5443347

http://www.bbc.co.uk/ouch/messageboards/F2322274?thread=7342594

http://www.bbc.co.uk/ouch/messageboards/F2322274?thread=3661710

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About Mrs O

Writing from O towers, situated on the river Medway, just round the bend from Chatchester at the Rainham end of Stroodilingham.
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20 Responses to NHS turns a deaf ear to the needs of hearing aid users.

  1. Andy Export says:

    Well said. You made great sense and you done that in eloquent fashion.

  2. Mrs O says:

    Thanks Andy! I hope we can get this message out and make a difference. XXX

  3. Jason says:

    As a working NHS Senior Audiologist, I just thought I would comment on your post to let you know where the NHS is currently – You are quite right that no NHS department in the country fits Analogue hearing aids, this is due to the fact that we have a list of suppliers for hearing aids (contracts are decided by the NHS Supply Chain) and all analogue hearing aids have been removed from contract. This isn’t actually the NHS saying we don’t want analogue aids, its the manufacturers of hearing aids removing them from sale and stopping to make them anymore.

    Where to go from here? Well there are several options, I’d say contact your local NHS department as modern digital hearing aids can be programmed to behave as analogue hearing aids by reducing a property called compression to 0% or 1:1 and providing linear gain. On most aids it is also possible to remove all the noise filtering properties, giving you essentially an analogue hearing aid but digital signal processing.

    • Vic says:

      Jason – “This isn’t actually the NHS saying we don’t want analogue aids, its the manufacturers of hearing aids removing them from sale and stopping to make them anymore”.
      The manufacturers submit products for NHS contracts based on the product specification in the tender documents from the NHS SC which is driven by the ASG which is a group of senior audiologists from the NHS. Therefore I would say that this isn’t driven by the manufacturers it was the NHS (and the RNID) that wanted digital products and they wanted them cheap….as the NHS is the biggest purchaser of hearing instruments in the world (in terms of volume) they could ask the manufacturers for whatever they wanted and they would probably get it….) i.e. they wanted digital for 50 quid and that is what they got!!!

      • Mrs O says:

        Thank you for your information Vic, what you say makes sense and confirms what we suspected. It’s very sad that patients weren’t consulted and no longer have a choice.

        I wrote this article last Friday and started a facebook campaign at the same time, we already have 117 members. I also sent this article to Hearing Times newspaper and they are very interested. This matter will be covered in their October issue.
        http://www.facebook.com/group.php?gid=116042521781196

  4. Rew says:

    @ Jason: It was very interesting to read your reply above. However, I assume that the hearing aid industry works much the same as many others with regards to the relationship between supply and demand. Therefore if hearing aid suppliers said to the NHS “We are going to stop making and selling analogue hearing aids”, the NHS should have responded with something along the lines of “This very clearly throws a spanner in the works for many of our patients, to whom we have a duty of care, and therefore if you will no longer supply analogue hearing aids, we will go to someone else with our money”.

    If they had responded in this way, the suppliers would have changed their tune very quickly, or lost an awful lot of money. However it would appear (if these events really did happen in the order you say) that the NHS basically ignored the needs of many of their patients, bowing down instead to the preferences of their suppliers. So either the NHS made the decision they no longer wanted analogue hearing aids, or they failed to act on behalf of their patients when suppliers decided to stop supplying a product that, to many deaf people, is absolutely essential. Either way, it’s a poor show.

    Also, I’ve read lots about claims that digital aids can be set up to sound like analogue, by switching off various settings etc, although there is varied feeling about how close to analogue the new aids can realistically get. There are also reports of audiologists refusing to set the aids up in this way, although that’s a different matter entirely. This all takes time, and repeated trips to audiology, which is something I (and many other deaf people) have neither the time or inclination for.

    It would, in my opinion, make a lot more sense to just provide analogue aids to those that want them, rather than waste everyones time fiddling with digitals to try and make them sound like their so called “predecessors”.

  5. Toe says:

    To Jason.

    i know limiters an compression can be taken off or appear to be taken off, coz when i was gettin my be36’s fixed i was forced to have these digi devices for a while. and i insisted all so called safety features was removed. the sound reproduction is still rubbish.
    the truth of the matter is digi hearing devices cannot give the same quality of sound than a good anologue device.
    me like many other people who have this problem, have not been born deaf, therefore we know what real hearing is like , and analogues, although not perfect, give us what we lost, well, to me anyway.
    does natural hearing work in a digital way? NO it dosnt, it works in the analogue world.
    does natural hearing have limiter,a graphic eq, and compression? No it dosnt, we hear everything as it is regardless if it is a safe level or not.

    im a musician, recording sound engineer, and lighting tech. when someone hits a snare, bass drum and cymbals i want to hear the sound for what it is, i dont want my device deciding what i can and what it will allow me to hear. when i am singing, i want to hear my voice and surrounding instruments at the same time.

    i do have a bone to pick with audiology fitting situation though.
    why do you insist on fitting in a dead room were there is no sound to hear, pass us the hearing device , then say , “how does that sound?” with only the voice of the audiologist to makle a comparison with, i had a problem with this with the analogue fitting, but atleast then i could go home, play music and familiar sounds and retune my device to how i wanted it. the user dosnt get this level of control with the digi’s, as they are programed by a laptop in a dead room and nothing but a graph to work off.
    so if you want to give these digi’s a chance why not do home fitting, this way we all get a fighting chance.

    i know that audiologists knew about this potential problem years before analogues were discontinued, as i was tipped of by a senoir audiologist just over 10 years ago, who told me, “never let them take these off you, coz the next generation isnt gona suit you, but you never heard that from me (wink wink)”. i still get refurbed analogues, coz i wont take no for an answer, and i will kick, scream ,and cause a scene.
    would be good to find out the legal stance on the human rights laws.
    anyway thats enuff of my ramblings

    let me finish off by saying, i have no problems with any audiology staff, you do the best job you can with the best equipment you have. i know you have no control over the stock you keep.

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  7. Mrs O says:

    Thanks to all who have replied, I think it’s very important to have a debate on this subject and I’m glad my article has inspired this discussion.
    We have another reply but it has come up on the page about me rather than on this page. Please click here to see the latest reply https://missuso.wordpress.com/about/

  8. Joanna Hartholt says:

    Moved to tears by Mrs O’s writing again (the first was the story about your grandmother and the rabbit). Bloody good on you for raising awareness about this issue and I desperately hope you get the result you need XXX

  9. Mrs O says:

    Many thanks for your kind words and support Joanna. The rabbit story was fictional but I am so happy that you found it moving. That’s the best compliment I could have. XXX

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  13. Marissa says:

    Is this for real? You are all complaining about having free hearing aids thrown at you including batteries and repairs? Audiologists do a good job. The fit in a quiet rooms because they are adjusting the settings on the aid. This cannot be done when the is extraneous noise because the aid takes this into account and adjusts itself. Therefore a true reading cannot be taken. This is why a “Follow up appointment” is booked so they can see you again when you have experienced it in the real world. Do them to replicate every listening situation for you? You’re not being realistic.

    Have you asked for programs to be set on the aid? Most aids have programs that have different settings for certain situations such as the music you feel you are losing. Maybe next time you should explain exactly how you feel to your audiologist before running to complain about them on your blog.

    I find this writing to be extremely gratuitous and needlessly trying to pull at the heartstrings. I highly doubt you would be so quick to complain about the NHS if you needed an emergency service.

  14. Mrs O says:

    Hello Marissa,
    I don’t think anyone is complaining about receiving free hearing aids and batteries, etc ,( although, as we all pay our taxes to fund the NHS we could debate just how “free” they are. ) the problem that many people, including my husband are facing is lack of access to the correct treatment for their hearing loss. I’m afraid that all the “free” digital hearing aids in the world are of little use to someone who needs an analogue device.
    I believe that treatment should be appropriate to the individual patient’s needs and the Department of Health’s guidelines support that.
    I have not complained about individual audiologists, I know they are doing their best and the audiologists we have dealt with have accepted that some people need analogue devices and are not able to adapt to digital. The choice has been taken out of their hands without their consultation in much the same way as patients have been overlooked by the Modernisation of Hearing Services. Just because digital is good for many people doesn’t mean we can trample on the rights of those who need analogue.
    My husband has had many appointments trying to adjust the new digital hearing aid to his needs and tried the different programmes for music, etc. The music programme was of no use at all for singing and guitar playing. It’s not just the music aspect that caused considerable problems, speech was also difficult and my husband needs to be confident with his hearing to do his job as a full time social worker; as you can imagine that job can be stressful enough without having to deal with a massive drop in his hearing capabilities as well.
    Luckily, through our efforts we have discovered that the Dep of Health say that local NHS trusts do have the ability to purchase equipment outside of their current contracts and now the local audiology department have offered to obtain an analogue device privately for my husband. I hope this gives some hope to all those who have been given the impression that they have no choice in their treatment.
    I find myself extremely taken aback by your final paragraph. I wrote honestly and openly about the situation and the pain caused. I hoped to convey what my husband and others like him were suffering. You appear to belittle that, as if deaf and hard of hearing people are making a fuss about nothing. I can assure you that a person’s senses are absolutely fundamental to every aspect of their life and well-being, both emotional and physical.
    I am immensely proud of my husband for all he has achieved in spite of living most of his life with severe hearing loss. I certainly did not exaggerate the distress caused by the change in his hearing aid. For him his hearing aid is “his ears” that’s how he refers to it. And the things “his ears” enable him to do are what constitute his life. It couldn’t get much more personal and essential to his existence and happiness than that. That certainly pulls at my heartstrings and I’m not ashamed to say it.
    Of course we are all grateful for the wonderful work of the emergency services but to suggest that because they exist we mustn’t expect the treatment of out-patients to be adequate for their daily lives or that we should just not raise any issues that may be critical of any aspect of the NHS is highly specious.

  15. tony kelly says:

    Marissa, i dont think you understand the needs of people in our situation, i find your comments extremly ignorant.
    as anna says we pay tax’s and national health contributions for the NHS, so we are entitled to the service we are used to.

    Let us understand the difference between analogue and digital.
    analogue amplifies the sound around us wether it be at a safe level or not, “WE” the user have the power to set our hearing as we desire. i have ofen had to reset the settings on my analogue device after an audiologist has set it, as in the real world is very much different to a dead soundproofed room reading from a graph.

    digital is very different and clever. it dictates to the user what they are allowed to hear.
    we have no other control apart from volume and on and off. the limiters and active gain control take away the sounds that the user might need to hear, specially if they are a musician, i am a musician and sound and lighting designer and tech, my job is listining for impurities and rectifying it, so if i cant hear them how can i fix them!
    another piont is the sound quality, the word crap springs to mind. very tinny with no substance.
    believe me i have tried to work with them, they DO NOT give a true representation of the sound around us.
    Me and people like me have not always been deaf/hard of hearing, so we do know what we are talking about.

    Marissa think very hard before replying, and if you do, tell us what makes you qualified to make an informed comment.

    Toe…!

  16. tony kelly says:

    just one more thing, the deaf community seems to reject and disrespect our concerns and problems with this situation.
    We are a section of the deaf community that the deaf community will not support.
    I am in wonder as to why this is so.
    you want the world to understand, respect, and to respond to your needs, and yet you will not respect mine as a deaf person asking for help, from the deaf community.
    I have no respect for the deaf community that ghettoises itself away from the real world in favour of the “deaf world”, and likes to have an attitude about it.
    Theres just 1 world people, were all in it together no matter what ur disabilty is.

  17. Lisa Dillon says:

    There is an article about this issue in The Medway Broadside.

    http://www.themedwaybroadside.com/2010/11/28/nhsdeaftoyourneeds/

    To add to what’s already been said, this is not about whether audiologists do a good job or not. This is about people who have already tried everything they can think of to have their particular needs addressed, including speaking to their audiologist several times, and are being badly let down by the NHS. These “free” digital aids being thrown about are of no more use to those who need analogue aids than a wooden leg. It is wasteful for the NHS to be dishing out inappropriate treatments, especially at a time when severe cuts are being made.

    I think most people would be sympathetic if you’d called an ambulance and an ice-cream van turned up. It’s inappropriate. It’s wrong. It wouldn’t do the job. Or maybe they’d say you should be grateful that anything turned up at all. Free ice-cream is not to be sniffed at.

    People shouldn’t have to fight for what they need. Sadly, they sometimes do. If everyone rolled over and accepted whatever’s on offer, accepted sorry little excuses and never fought for their rights, none of us would get what we need or what we’re entitled to.

  18. Rew says:

    Marissa,

    I think you’re completely missing the point. Firstly, as someone who pays taxes, the hearing aid I wear is certainly not free. And if it’s wrong to complain when the NHS stop providing a treatment that has enabled me to lead a fulfilling life, does that mean you’re of the school of thought that people with disabilities should put up and shut up and just be grateful to receive any support at all? If so, you need to wake up.

    At any point you could find yourself in the same position as me, and many other people. For example, suffering any chronic condition and receiving a treatment for it that is perfectly adequate for your needs. Then one day you find all of a sudden that the treatment is no longer available (unless you’re rich) and all you can access is a substandard alternative, which may well meet the needs of most people, but not you. I hope this never happens to you, but if it does, I should imagine you would view your post above quite differently.

    I don’t see anywhere in the original post that it’s suggested that audiologists don’t “do a good job”. Mind you, considering you feel the need to raise the fact that they do, maybe you’d like to justify it a bit? Perhaps starting with why audiology departments across the country are lying to patients, telling them they can only supply digital aids, when you’ll see on my blog (www.rewoates.wordpress.com) that’s not true . I have never had any complaints about an individual audiologist, and if you look at my blog you’ll see I often praise them. What I don’t agree with is the system they work in.

    In response to your question of “Have you asked for programs to be set on the aid?”, quite simply, yes. Also, being a musician, as well as someone who has worn hearing aids since the age of six, I was able to tell them exactly why their “programmes” were no good, to the extent they soon admitted that they didn’t know how to make the aids better suited to my hearing loss, and said they also wished they could still supply analogue aids to those who can’t get on with digital.

    And finally, if you took the time to read the original post properly you would see it is not about an individual audiologist, who is consequently being complained about after much metaphorical running-to-blogs. It is actually a complaint about a system which claims to be flexible and tailored to suit people’s needs which is, quite simply, not.

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