Can I get any better hearing aids if I raid the NHS's proverbial cupboard illegally?

Hi guys! I’m new here but I’m sure you’re all a lovely bunch of people. hugs everyone

Right, so, I went to another hearing appointment two years ago, after years of trying to get hearing aids and being told I would grow out of it. This time, however, they realised I had nerve damage and finally gave me hearing aids for both ears!* cue a parade with streamers and kittens. But not for long! They gave me the Aids a month or so later, and basically told me to strap them on and get used to them. Not the best approach to a 19 year old who’s always heard the world a little differently. Not surprisingly, I wore them on/off for a week and relegated them to a drawer. My promised follow up appointment never came so I had to make one myself, which was supposed to be discussing the hearing aids and seeing if there was anything I could change about them. After being sent to the wrong hospital I finally got to see someone who basically said, ‘What do you want us to do about it, that’s all you’re getting.’ Which made me pull faces like this: -.-’

I’ve tried wearing them again just a few weeks ago and now have a list of everything I want to change about Thing 1 and Thing 2**
~ I’ve been given a mold. But, I have delicate ears and my ear get rather bruised from wearing it for more than 20 minutes.
~ The sound. Oh god, the sound. It picks up TV easily and BLASTS it into my ear which doesn’t help with the whole ‘getting used to it’ thing. But if I don’t have noise in the room… oh God, the Silence. The Silence is something that I can’t describe properly. Like the jungle in Lost or something.***
~The fit. I’ve had to cut the tubs down to the mold to get them to fit my tiny ears.

To the main point: If I bang my head repetatively on the table enough and wail like a banshee being poked in the eye with a stick, can I get some different hearing aids?**** I cannot get used to these, I know it. Do you think they’d also have one of those rubbery dome things? I can’t take more molds. And what do I do if they insist I have to have these ones?

*I have about 50% hearing according to a private hearing guy and I have cookie bite hearing loss
**Also known as Danalogic i-Fit 71.
***You may have experience of this Silence.
****I’d totally buy some if I could but lack of money dictates…

It takes months, not weeks to get used to what you are hearing.

Have they got a volume control, you could try turning them down for the start and then slowly turning them up as time goes on.

Re the moulds, I find hard moulds to be most painful, the soft ones are better as they move with you so when you move your jaw, eat or talk, they won’t feel as bad.

Are you in the UK? Sounds like you are by the trouble you are having!

I understand the time but I’ve read about another blogger with the same loss as me and the same aids who’s having a lot of trouble with the Silence! I can’t see myself getting used to it after 20 years of complete silence when things are quiet - in fact, I don’t want to! :slight_smile:

The Volume - it does, but I have the same problems on the lowest setting unfortunately. :frowning:

no you cant

If you don’t have anything useful or helpful to say, don’t post at all. It’s rude. ‘no you cant’ is (apart from being grammatically incorrect) no help at all. Why can’t I have something different? I know that’s not the only ones they have.

You could get sorted out - but it would take the right technology and a degree of understanding and time from the fitter.

An NHS fitter might have the time, skills and hardware stock to help … or the ‘postcode lottery’ (‘zip code lottery’) may have resulted in you being in an area where NHS resources are limited.

You would also have to play your part - messing about with aids for a week isn’t a fair trial … and your fitter won’t take you seriously if you haven’t made a serious effort with your new aids.

I’m not being rude here, but more importantly there is a vague hint in your story of you coming across as a ‘difficult customer’. Once your file is flagged in this way then you are in trouble.

I’m not worried about wearing them for a week and then stopping - the molds are painful in my ears so I can’t be expected to have to put up with that as far as I’m concerned!

I don’t think I’ll be in a limited area - I live in Leeds and go to the LGI, it’s one of the biggest in the country I believe.

I’m going to make sure they know I’m willing to adapt to the hearing aids - but I can’t cope with the molds are the aids that I have at the moment. Considering I should have had hearing aids from the age of three, I think I’ve been messed about enough already!

Since you are having problems adjusting to the HA and the molds, why don’t you take it slow and wear them for 1 hour the 1st day, 2 hours the 2nd day and so on until you can wear them all day. The ear molds should never hurt, if they do, they may be in need to be modified or re made. Even in the US were we have to pay for our HA if you complain after just a few days they will flag you as a problem patient. Don’t give up and good luck!

Not sure if you read my post properly but it’s been TWO YEARS.
I should mention, I also mentioned that I can’t wear for the molds for 20 minutes due to it being painful, never mind an hour.

You could ask a private dispenser to make up new earmoulds - ideally ‘laser cut’ for best accuracy. (The NHS can order the less precise ‘hand lay-up’ earmoulds to save money)

The new moulds MUST be identical in style to your current earmoulds or the aid acoustics will be messed up.

I’d much prefer rubber domes. I don’t think it the shape of the molds that’s the problem - it’s just that I have delicate ears. I can’t wear headphones for too long either.

I’d much prefer rubber domes. I don’t think it the shape of the molds that’s the problem - it’s just that I have delicate ears

Ah, OK, all is now clear … you have unilaterally decided on the solution to your hearing issues. No wonder the NHS have got hacked off.

You need to pay people for them to go along with your specific preferences, if they are not the standard solution to a problem. The NHS simply hasn’t got the time for this sort of thing.

(In fact the iFit 71 can support thin tubes with plastic domes … but the acoustics may not work out in your case … and anyway the NHS probably don’t have the kit or the training to do this … and in your case you are SO blacklisted by now that there is NO way they’ll admit to even knowing of the possibility :):slight_smile: )

In the meantime here is an article on adjusting to hearing aids. When I got mine I thought they were too loud and clanking dishes were downright painful. I didn’t know at the time you were supposed to go back and get adjustments, but after a few months everything sounded normal.

Could you go to a private hearing specialist for the new mold and see what they would charge for a couple of adjustment sessions? It might be a reasonable price.

Right so basically the NHS is going to expect me to be in pain? Then I’ll file a complaint and get domes anyway. :smiley:
Why would I be blacklisted? I was given hearing aids TWO YEARS AGO and not given a follow up appointment. I then got one myself almost exactly a year later and they said there wasn’t much they could do due to an error in the system (they thought my aids had broken). So my doctor has now sent them a letter explaining my problems and told me to expect an appointment to discuss other options soon.

So why would I be blacklisted again?

No price is reasonable unfortunately, I’m on Employment Support Allowance and all the money is spoken for before I get any. Thank you for the article though, I’ll have a good read!

Just so people know, I never had unrealistic expectations before getting Thing 1 and Thing 2, I expected it to be a difficult journey. Just… not this difficult.

If its been 2 years since getting aids and moulds then the NHS will give you some more anyway.

Are they SOFT or HARD moulds?

I just take a number and wait my turn for new moulds. They won’t send you an appointment.

I’ve been wearing digital aids everyday for about a year now after 25 years from birth wearing analog. I’m only just getting used to them.

Hard plastic, no give at all. Thank you for seeming to bother to read my post and offering a helpful answer!

Then I’ll file a complaint and get domes anyway.

I don’t get this.

You have had earmoulds which you can’t wear for more than an hour - and yet it takes YEARS before any follow-up session is organised. Either the pain wasn’t that bad - or you didn’t need the aids full time.

You now seem to have decided that you want domes. Not painful earmoulds - which is clearly fair enough … but not even decent comfortable moulds.

Nope, it has to be domes. Why? Have you seen a friend wearing aids with domes and you prefer the style?

So what happens if you ask for domes but they are inappropriate for your hearing loss?

And more generally is it fair to ‘make waves’ via complaints etc simply in order to get your preferred dome style? The NHS is overloaded enough as it is.

As I said, I stopped wearing them and chose to wait for my follow up appointment which never came. I didn’t realise until a few months later because life got in the way, as it does.

Actually I was using domes as an example. I’m hardly going to go in there and go, ‘RIGHT, I WANT DOMES. NOW.’ I’m going to ask them politely if there’s a softer, more comfortable option than the hard plastic molds. I’ll only complain if they refuse my request for no good reason, as I believe that I have some right to comfort when wearing my hearing aids.

I’m no expert when it comes to hearing aids so I just went with the domes as I wasn’t sure if there was another option that was softer. Going by your rather arrogant response, I guess there is.

Ask for soft moulds when you make an appointment. They are unlikely to give you domes. They don’t know that you are not happy, if you haven’t been back, then what more can they if they don’t know.