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Original poster

Thread for those of us that are deaf/hard of hearing?

986 replies

flamingo40 · 04/09/2021 17:45

I've looked through the health topics and can't find any particular areas for those of us who are deaf or hard of hearing to turn to if we are after advice or just fancy a chat with people who are in the same situation?
I guess I'm asking firstly if I'm missing something or secondly if there isn't an area we can go to would this be something Mumsnet would think about adding?

Having been hard of hearing for years and now a permanent hearing aid wearer I'd love you get help and advice and talk about experiences to other people

OP posts:
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Original poster
flamingo40 · 12/02/2022 17:40

Hi everyone just checking in.
So today I plucked up the courage to attend a lovely group coffee morning.
It was mixed with people who are completely deaf and sign to those like me who are hard of hearing and lip read.
I can honestly say it was lovely to be around people who understand.
I've joined a WhatsApp group and everyone's so helpful

OP posts:
Wauden · 12/02/2022 18:09

@flamingo40.
Pops head in and joins

My hearing aids are Phonak Nathos S+ from the NHS.

I would love some Bluetooth hearing aids but my hospital trust does not supply them due to the cost.
I am thinking of going private, but the cost!

Original poster
flamingo40 · 12/02/2022 18:16

It's so wrong the cost of them isn't it.
I can honestly say mine changed my life and I'm very lucky to have them,
Apparently some nhs trusts are funding them so I've read?

OP posts:
Wauden · 12/02/2022 18:43

@Weefreelassie2

Ooh, please may I join in ?Smile Also add my vote for our own " part" of Mumsnet. The thing is, loss of or lack of hearing is recognised as being responsible for isolation, loss of confidence and depression unsurprisingly . A place where we can share and bent etc where we are all on a level playing field would be wonderful. Grin

My story is very similar to @Electrickery , my parents were embarrassed by having an " imperfect" child , though responsible for my hearing loss by refusing the Measles vaccine Confused

It wasn't picked up on until.I went to.school, yet they still refused me hearing aids . I am completely deaf in my right ear, and have 25% hearing in my left. I wear what I think is called a bi cross system, a microphone in my deaf ear and a hearing aid in my left. The difference is amazing, but not perfect by any means !

Over the years I've lost the little confidence I had, and though I am.a self taught lipreader, social interactions are very very hard and I can feel quite crushed. I don't work now because of other disabilities.
The pandemic and mask.wearing has left me pretty much a hermit now because of zero confidence .

Hi @Weefreelassie2. Just reaching out to you... I have only just found this thread and you posted ages ago, anyway, sorry that you are going through this.
Original poster
flamingo40 · 12/02/2022 20:12

Everyone is welcome to join.... I'm actually quite overwhelmed with the response since starting this thread.

OP posts:
purpleme12 · 12/02/2022 20:20

[quote friskybivalves]@purpleme12 I'm so sorry that I missed your posts on Wednesday. I don't have a headset for work now but I used to.

I've only just got Bluetooth hearing aids - literally a week ago today - and They are much more responsive plus The sounds I hear seem more subtle and multi layered if that makes sense. I actually have to turn them down because The world seems so inside my head now! I had to battle for an appointment though.

Can you start with nagging your GP? How long is it since your last hearing review - it's meant To be no longer than Three years I think. And when you make the appointment just say you need The upgrade to Bluetooth ones because you need the additional connectivity in order to do your job otherwise you are becoming more isolated and it's making you depressed. All of which sounds as if it is, very sadly, true or on the way to being true.

My lasT hearing aids were big old ones but my new ones are much smaller. They still sit on Top of my ear but are smaller in scale. And Bluetooth. This is all assuming you get yours on the NHS? And your employer should be Getting you Thr accessories under access to work and reasonable adjustments. [/quote]
Thank you for your post.

I think I last had my hearing test last year. And I had new hearing aids cos apparently my old ones were obsolete. They're just normal, not Bluetooth. If I got Bluetooth how would it work? It would be able to work with a phone at work? I don't really know about these things. I'm not very technology minded.

Yes I do get them on the NHS.

I just feel so self conscious now

ThomasinaGallico · 12/02/2022 20:28

So happy to see this thread!

I’m a returner to MN after deregistering a couple of years ago when I got a little, shall we say, uncomfortable with the climate of certain boards. But as a moderately hearing impaired person having worn hearing aids on and off since the age of three, I think threads like this are very valuable.

Does anyone else get irritated by the general assumption that hearing impaired people are elderly? I mean, I know a lot of us are 😁 but those of us who have been deaf since birth, or early childhood, and those of us who’ve lost our hearing during a busy working adulthood, and those of us who are bringing up young children, have very, very different needs from retired people. We often have careers and family relationships at stake due to unmet needs arising from our disability. I was paranoid about my kids’ speech development because I couldn’t always make out what they were saying or respond optimally. And I’ve suffered career-wise because telephones are hard work (that’s improved recently due to new devices), because interviews and conversations are hard work (I don’t quite pass as ‘normal’ due to conversational timing issues) and because employers will not walk the walk on the Equalities Act.

Without wishing to minimise the issues faced by older HI people (they tend to find it much harder to benefit from hearing aids and could do with a lot more follow-up) it wasn’t always helpful to find that general hearing aid maintenance checks were always during working hours or school run time.

Original poster
flamingo40 · 12/02/2022 20:46

@purpleme12
I was so conscious for the first few years. I hated them.
Always wanted short hair but my hairdresser said you'd be able to see them!
Fast forward to after lockdown.... got a new client at work who was so understanding and encouraging. He used to be a hairdresser.... one day says let's cut it and show them off. My hairs now very short!
Now I wear them with pride.... it took me a long time to get there.
You will when you're ready

OP posts:
purpleme12 · 12/02/2022 20:50

It's not really that
It's just the most recent comments from work
I wish it hadn't happened

ThomasinaGallico · 12/02/2022 20:54

@purpleme12 I have Bluetooth hearing aids on the NHS, Oticon Engage. They work better with iPhones (although they can be made to work with Android as well) and that’s brilliant because you can use your iPhone for calls and music and YouTube and it streams sound to your hearing aids like a headset. Also, you can adjust volume and programs via your phone rather than cycling through the buttons on your hearing aids.

With regard to kit at work, you’ll need to be taken through the options because it can be technically complicated and you need to make sure it’s compatible with your office equipment. Connevans (mentioned upthread) are really helpful. You won’t be due an upgrade yet, so there is a bit of kit (the brand escapes me but begins with S) that can be linked to online telephone systems via your computer. It’s the size of an old flip top mobile, is plugged into your computer at one end and you wear it round your neck with a special neckloop. Bit of a hassle to set up, but worth it once you do. I believe there’s also gadgets on the Connevans website that work with more traditional style phones. Do seek advice from them; they’re really helpful and this stuff can be a techie minefield.

Original poster
flamingo40 · 12/02/2022 21:01

@purpleme12
I'm
So sorry you're finding it difficult with comments at work.
Is there anyone you can reach out to for support?

OP posts:
ThePoetsWife · 12/02/2022 21:07

Has anyone tried applying for DWP's Access to Work funding for equipment? Worth a try.

ThomasinaGallico · 12/02/2022 21:11

@purpleme12 look for your brand of hearing aid on the Connevans website and see if you can find something compatible that will help on the phone. Or send them an email with the brand and model number and they’ll get back to you (because their website isn’t the best designed).

ThomasinaGallico · 12/02/2022 21:30

@ThePoetsWife

Has anyone tried applying for DWP's Access to Work funding for equipment? Worth a try.
Yes yes yes to this! I’m lucky in that my employer is public sector and have representatives able to set this in motion. All my kit is paid for by my employers, can’t function half so well without it.
ThomasinaGallico · 12/02/2022 22:31

Can I add my voice to the chorus of voices asking for a Deaf/Hearing Impaired section? Having dipped the tip of my toe into Deaf politics recently I’m aware that a number of D/deaf people (the capital letter is important) would be a bit Hmm about this thread going into General Health. A debate in itself, I know, but some, especially those born deaf who have grown up using sign language, don’t regard themselves as having a health issue simply because of their deafness. Also children with hearing issues have really specific needs and if that were covered as well it could be incredibly useful.

Violinist64 · 14/02/2022 00:09

I’m late to the party, but may I join in? I will explain more in my next post.

Worrysaboutalot · 14/02/2022 12:55

@Violinist64

I’m late to the party, but may I join in? I will explain more in my next post.
The more the merrier Grin
Original poster
flamingo40 · 14/02/2022 14:52

@Violinist64

I’m late to the party, but may I join in? I will explain more in my next post.
Everyone's welcome
OP posts:
Spacerace · 14/02/2022 15:34

Hi all

I posted at the end of last year and said I was waiting for an operation to have the Medel Bonebridge. It's a two part device - a surgically installed bone conduction implant that's completely concealed behind your ear, and an external auditory processor that connects to it via magnets.
Well I had a call out of the blue and had the surgery last week! In a few weeks time I'll have the auditory processor set up and I really am excited to see how much it improves my hearing. Apparently it can can increase the dB by around 30-35 which would be miraculous for me.

purpleme12 · 14/02/2022 20:14

Just wanted to say thank you to the posters above who replied to me

@ThomasinaGallico I'll have a look on there thank you

Violinist64 · 14/02/2022 21:38

I have been familiar with ENT departments since I was very small. When I was ten l had mastoid surgery on my left ear, which left me with a severe hearing loss in that ear. At the time my parents were told that my good hearing in my right ear would compensate, although I would have no directional hearing. We accepted this, although, looking back, I was affected more than they said but it was the seventies and the bracing get-on-with-it attitude (not always a bad thing) was the order of the day. I am sure I missed out on things, though. In spite of it all I became a professional musician. Over the years I had ear infections from time to time, including a burst abscess in the ear when I was thirteen - ouch! - and in 2010 l had a reverse mastoid operation where more diseased bone was removed and replaced with plastic bones and a skin grafted eardrum - an entire new middle ear. It also reversed most of the hearing loss. Unfortunately, in the past two years, my right ear has had bad infections and I am involved in ENT once again. My hearing has deteriorated too. My worst problem has always been the low tones.

purpleme12 · 24/02/2022 11:25

Has anyone got custom made ear molds (I mean to wear when you're swimming or in the bath or shower to stop ears getting wet)?

ThomasinaGallico · 24/02/2022 23:15

I’ve not had custom made earmoulds for swimming, only to wear with my hearing aids (and those are rigid so I often need them filed down when they dig in. I suppose my ears must move when they press the stuff in). You can get malleable wax earplugs but I’m not sure how good those are at keeping water out.

purpleme12 · 25/02/2022 00:00

Ah ok just wondered if anyone had them
They mentioned the possibility of getting them to me today to stop my ears getting wet

purpleme12 · 27/02/2022 20:26

My ears are quite crusty in the 'opening' (what is the actual word?) From itching
Does anyone else get this?
Is there anything that can help with the actual crustiness there? As I think it makes it even more sore when putting my hearing aids in and out