Hearing Loss & Hearing Aids

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delightfultones
delightfultones Online Community Member Posts: 8 Connected
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: 7,866 Championing
    Hello @delightfultones

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

    I'm sorry to hear that you are feeling alone,ย I hope the community can be a great source of information and support for you :)ย 
  • delightfultones
    delightfultones Online Community Member Posts: 8 Connected
    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!ย 
  • Millymolly84
    Millymolly84 Online Community Member Posts: 8 Listener
    Hello, Iโ€™ve just been diagnosed with Bilateral high frequency sensorineural hearing loss mild to severe both sides. Iโ€™ve decided Iโ€™m going to go private, my reasons for this is at 38 I want a pair that are fit for purpose- Iโ€™ve been told most nhs are clunky and outdated. Iโ€™ve known for a while my hearing wasnโ€™t right but kept putting it off- still doesnโ€™t make it any easier to receive that news though! My understanding is that yes itโ€™s a disability.ย 
  • delightfultones
    delightfultones Online Community Member Posts: 8 Connected
    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 Online Community Member Posts: 8 Listener
    So expensive! But I donโ€™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. Iโ€™ve been looking at signia styletto AX looking at about 4k I think ๐Ÿ™ˆ
  • delightfultones
    delightfultones Online Community Member Posts: 8 Connected
    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 ๐Ÿ™ˆ 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!ย 
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,866 Championing
    @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.ย 
  • Millymolly84
    Millymolly84 Online Community Member Posts: 8 Listener
    I have been told the wait for nhs audiology is 6 months and Iโ€™ve only just been referred by ent. This is why I was going to go private.ย 
  • summersunflower
    summersunflower Online Community Member Posts: 84 Connected

    Hi, i know this is an older thread, but i am in a similar situation, just been for my first hearing test in over 30 years and have moderate/server hearing loss and am now looking into hearing aids/possible PIP claim and i wondered how you are getting on @delightfultones :)

  • delightfultones
    delightfultones Online Community Member Posts: 8 Connected

    Hi @summersunflower. How are you doing? It can feel like weird news to get.

    I'm doing really well! I went private for my hearing aids through Boots and having since spoken to many who got aids on the NHS I'm extra grateful I had the option to go private. I did eventually hear back from Access to Work but again luckily my work place had already voluntarily supported some of the cost and I couldn't face the hassle.

    The first months were really hard, even with how they slowly increase the prescription. I couldn't be in the kitchen for a while ๐Ÿ˜‚ but it's so much better now! I can hear birds? And water is so slappy? It has been an overwhelming learning experience learning that things I thought were silent actually make noise, but also that noises I thought I knew are actually wild different .

    I recently learnt you can get hearing aid jewellery which is exciting and fun!

    Sorry I'm just rambling trying to think of everything I thought would have helped me. I'm more than happy to chat if you have any questions or anything you want to hear more about ๐Ÿ™‚

  • delightfultones
    delightfultones Online Community Member Posts: 8 Connected

    @summersunflower sorry my first tag didn't work so just trying again!

  • summersunflower
    summersunflower Online Community Member Posts: 84 Connected

    Hey, thank you so much for replying so quickly, wow i'm so glad they're working so well for you, i can't wait! Although affording private ones seems a long way off which is why i'm hopefully going to get somewhere applying for PIP. Did you apply at all?

    Ooooh i'm off to google hearing aid jewellery already ๐Ÿ˜‚

  • delightfultones
    delightfultones Online Community Member Posts: 8 Connected

    The pricing is wild isn't it! From talking to people at my local hard of hearing club, if you go via the NHS I'd recommend that you just keep going back and getting them adjusted until you're happy with them. Getting it right makes a real difference! I think a big difference is that when you go private they put you on about 70% (which is incredibly overwhelming anyways!) and slowly turn you up. But when my step father got NHS ones recently they put him on 100% straight away and he doesn't wear them at all. It's definitely a big adjustment period whilst you brain unlearns all it's compensation. Though there are definitely some days I want to rip them out still ๐Ÿ™ˆ I didn't try PIP I'm afraid so I'm no help there sorry!

  • summersunflower
    summersunflower Online Community Member Posts: 84 Connected

    Oh wow i have literally no idea. I will admit i tried ones from Amazon a few months ago out of desperation and gave up within 2 days.

    So surely NHS or private has to be better than them (fingers crossed) although going by your step father maybe not!

    I am going to have a good now see if i have a local club as its always good to get other peoples experiences :)

  • summersunflower
    summersunflower Online Community Member Posts: 84 Connected

    @yanni have you applied for PIP, just wondering if you have any tips at all? :)

  • delightfultones
    delightfultones Online Community Member Posts: 8 Connected

    I think like Yanni said (I don't how I never saw their earlier big reply that would have been so helpful to me at the time!) it really depends a lot on having them adjusted but with the wait for NHS I wasn't sure how long the wait for adjustments would be.

    I hope you're able to be moving forward with yours soon, I know I hated the waiting bit!

    My local deaf society taught me all kinds about other assistive technology pieces etc so they can be really helpful that way too ๐Ÿ™‚

  • KG100
    KG100 Online Community Member Posts: 277 Empowering

    You can apply for a disabled bus pass if you need 2 NHS hearing aids, it's well worth getting if you haven't already got one.

  • summersunflower
    summersunflower Online Community Member Posts: 84 Connected

    Thank you @KG100 - Thank you, i didn't know this, although i've not been on a bus in years, any public transport for that matter, and its not until i had my hearing test confirmed that its really made me think about how i've adapted over the years, i've realised that its down to being too nervous to try 'new' things even the bus i'm paranoid about not being able to hear, not knowing what to say etc.

    Can i ask if you have hearing aids? have you applied for PIP?

  • KG100
    KG100 Online Community Member Posts: 277 Empowering

    I do have PIP, but it's for my heart and bone problems, but I think having 2 hearing aids gives you an automatic 2 points towards it.

    On my bus pass application instead of listing all my medical problems they just put down about my hearing instead, It saved them time.

    When using a disabled bus pass now you don't have to speak to the driver if you don't want to, you just tap the machine with your pass and get on.

    I'm so deaf I just nod and say hello. I can't hear what they say.