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Hearing Loss & Hearing Aids

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delightfultones
delightfultones Community member Posts: 4 Listener
Hiya :smile: I hope you're having a lovely day. I'm not sure what I'm hoping to achieve really by posting! Only, recently I was diagnosed with moderate to severe hearing loss affecting all frequencies across both ears just before I turned 29. I've always known my hearing isn't good (many tests as a young child that were "just not bad enough to get support", and always struggled to hear people well) but I didn't realise how much I've been compensating over the years.

I guess I'm just at the start of that journey into hearing aids, getting support and figuring out if this is classed as disability, and would love to hear from others and feel less alone! Any advice anyone has on hearing loss or aids would be a grateful addition (I'm thinking of going private rather than NHS so I can have more control over the situation but would be interested to hear experiences from others too!).

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  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,912 Disability Gamechanger
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    Hello @delightfultones

    Welcome to the community! :) How are you today?

    I'm sorry to hear that you are feeling alone, I hope the community can be a great source of information and support for you :) 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • delightfultones
    delightfultones Community member Posts: 4 Listener
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    Hi @Hannah_Scope, thank you for the welcome :smile:

    I'm good thank you, how are you? I don't feel super confident in community spaces but I'm hoping to join in and be part of the community! 
  • Millymolly84
    Millymolly84 Community member Posts: 8 Listener
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    Hello, I’ve just been diagnosed with Bilateral high frequency sensorineural hearing loss mild to severe both sides. I’ve decided I’m going to go private, my reasons for this is at 38 I want a pair that are fit for purpose- I’ve been told most nhs are clunky and outdated. I’ve known for a while my hearing wasn’t right but kept putting it off- still doesn’t make it any easier to receive that news though! My understanding is that yes it’s a disability. 
  • delightfultones
    delightfultones Community member Posts: 4 Listener
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    Hi @Millymolly84, thank you for replying, I really appreciate it.

    I've heard the same about NHS, and like you I want to get something that will really benefit me. A family friend just got some on the NHS and he doesn't wear them as he feels they're too loud, so I think the fitting and adjustment period will also be more pleasant privately. Gosh they're expensive though aren't they!

    It's really nice to hear from someone in a similar boat :smile:
  • Millymolly84
    Millymolly84 Community member Posts: 8 Listener
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    So expensive! But I don’t see the point in getting some not fit for purpose that I never wear. I have a hearing specialist near me who do free trials and 6 month money back guarantee plus free after care for life. They did my original hearing test. I’ve been looking at signia styletto AX looking at about 4k I think 🙈
  • delightfultones
    delightfultones Community member Posts: 4 Listener
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    Oh wow, it's great they they offer so much time and opportunity to test run devices to see what works for you. I didn't think about a properly private specialist, I just went through Boots 🙈 I might take a leaf from your book and see if I have soemthing similar around me.I hadn't even come across Signia as a brand I'd been looking at the top end of the Phonak Lumity which are a bit cheaper at like 3.6k

    I'd love to hear how you get on! 
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,912 Disability Gamechanger
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    @delightfultones I am doing well thank you :) Why don't you join us over in the Coffee Lounge? It's where we play games, have debates and get to know each other. 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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    Want to give us feedback? Complete our feedback form now.
  • yanni
    yanni Community member Posts: 91 Pioneering
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    If you have the opportunity I would at least try NHS hearing aids before going private, if only so you have something to compare the private hearing aids with.

     

    It is true that the NHS only provide behind the ear hearing aids (BTE) and not the more discreet ‘in the ear’ hearing aids but both of the models you mention are BTE hearing aids.

     

    I have severe-profound bilateral hearing loss and the NHS have provided me with Oticon SP8 hearing aids valued at around £1300 each. They have now been discontinued but if you google them it will give you an idea of the type of hearing aid the NHS supplies.

     

    I have worn hearing aids since I was a child and always had NHS hearing aids. I have looked into private aids but they genuinely didn’t seem to be particularly any better than the ones I had (and certainly not £000s better).

     

    Bear in mind that hearing aids last between 2-4 years so a private aid is not a one off purchase, you need to keep paying for replacement aids when the ones you have wear out.  

     

    I would definitely check how long the hearing aids are expected to last and how long it takes to get them fixed if they go wrong.

    Also you will need new earmoulds, tubing and batteries which is an additional cost if not included in the aftercare.

    You are as in control of the process as you want to be with both the NHS and private providers. Unfortunately a lot of people try a hearing aid, decide it doesn’t work and then throw it in a drawer rather than go back and get it adjusted (then tell everyone how terrible NHS hearing aids are).

    After you are fitted with your hearing aids you will need to go out in to the real world and see how they work for you. If some sounds are too soft or too loud, you can go back and explain this to the audiologist and they can make an adjustment. It may be that you have to do this a few times. The audiologist can only work with what you tell them. It may be that the sound seemed fine when you had them fitted in a quiet room but in real life the background noise is too loud or people’s voices are too soft.  

    There is also a period of adjustment as your brain gets used to hearing sounds that it hasn’t heard since your hearing deteriorated (or has never heard before) so the audiologist may advise that you only wear for hearing aids in quiet environments for short periods to start with and build up to wearing them for longer in a noisier environment. I find this even now if I have been fitted with a new aid or had the existing aid adjusted after a hearing test the sounds sound a bit ‘off’ for a while until my brain adjusts (and if it doesn’t adjust after a while I go back to the audiologist and explain the problem so they can adjust the aid).

    There are also assistive listening devices which work in addition to your hearing aids in challenging listening environments such as the Phonak Roger ON. These are also expensive and unfortunately not available on the NHS.

    I will also say that the NHS let me keep my old hearing aids when they upgrade them because they know I am utterly lost if my hearing aids go wrong so they leave me with a backup. Whilst I have had to struggle somewhat with my older NHS hearing aids when the new ones have gone wrong as they are no longer powerful enough, I have at least had some hearing whilst waiting for them to be repaired or replaced at the appointment.

    On the other hand I asked Boots what happens if their hearing aids go wrong. Do they replace them straightaway? I was told no they would send them off for repair and I would get them back in a week or so. They expected me to survive without being able to hear anything for a week or so and clearly didn’t see why this was a problem!

    If you have any questions I am happy to try and help.

  • Millymolly84
    Millymolly84 Community member Posts: 8 Listener
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    I have been told the wait for nhs audiology is 6 months and I’ve only just been referred by ent. This is why I was going to go private. 
  • yanni
    yanni Community member Posts: 91 Pioneering
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    Wow I can understand not wanting to wait that long to get hearing aids!

    You could go private and also attend the NHS appointment when it arrives. Then compare the NHS aids to the private ones and decide what route is best for you. You would also then have back-up hearing aids if something goes wrong with one set.

    One other thing is to ask for an induction loop / T loop setting on the hearing aids.  Most assistive listening devices work through this induction loop as do loop systems in public places where there is a sign like this https://www.thesignshed.co.uk/products/hearing-loop-symbol-8987-p. The induction loop relays sounds straight to your hearing aids and cut out background noise almost entirely so they are good in noisy places. My hearing aids also have a directional setting which focuses on the sounds coming from the front of you and less on sounds from behind or the sides, again this setting is good if you are in a 1-2-1 setting in a noisy environment.

    Also have a look at the Access To Work scheme as it can pay or contribute to some of the assistive listening devices that you need to do in a job https://rnid.org.uk/information-and-support/benefits/access-to-work/

     

    You can also apply for PIP (Personal Independence Payment) which is not means-tested and helps with the additional costs of having a disability.

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