February 26, 2011

Some experiences of a friend

Filed under: Uncategorized — partdeafpartgeekpartgirl @ 6:14 pm
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Sorry I haven’t put together the jolly post yet, which I’m sure you’re all waiting for  😉

In the mean-time I’d like to add this story from a friend who’d like to share her experiences of ‘the system’ while growing up with hearing loss, thank you ‘Hammer’ x

When I was a kid, any problems with my hearing aids were taken care of very well. Audiologists always took the time to ask the right questions. Once they even asked me what I wanted to know and I cheekily asked how hearing aid moulds were made….they were kind enough to take me to the part of the hospital where the moulds are made and the guy who worked there showed me how it’s done  🙂

However when I turned 18 this all changed; I was basically shown the door with no information about how to get more batteries or new moulds and so on.

After a few phone calls my mum found out I could go to the hospital next door for batteries and moulds for an adult. Well every time I needed a hearing-related appointment I had to first go to my GP, then my GP had to make an appointment for me. Then when I was at my appointment I would be waiting around for long time, there was only one person doing the hearing test, another person to make the mould and another person to fit my aids… you get the picture: I could be there for 3 or more hours waiting for these people. After while I got fed up!

One day when I needed to get more batteries I did not want to travel into to London just to get them. My mum asked where else I could source them and we found out I could go my local council office get them… well… when I went to my local council they asked for my ‘brown book’: what brown book????!?!?!

My mum had to make even more enquiries…… it transpired that I should have been given a brown battery book by the hospital as they kicked me out when I turned 18! So. My mum had to arrange to get a brown book for me from that hospital I’d been with.

Back then I was only allowed to collect 2 packs each visit (6 batteries in each pack), but as time went on I needed more powerful hearing aids. As the batteries ran out sooner with the more powerful hearing aids I had to ask for more batteries. At first they refused then my mum had to have a go at them(!)

These day it’s hard work trying sort my h.aids out, getting battires became not too bad since I moved out of my parents’ home to a different area. The lady at my new local council office was kind. She knew about my powerful h.aids and also about my mental health problems why I don’t get out very often so she always gave me loads of batteries, a whole box. That was great until the nice lady retired 😦  From then on it became more of a struggle.

Thankfully I have a few spares but if I try to get new batteries the council staff give me a hard time. I let them know that my social worker told me I’m within my rights to get lots of batteries. (I got a social worker when I moved out, after my mum found out I was entitled to special help from a social worker like getting equipment like a flashing doorbell and so on.)Now I feel that I have to have someone with me when I go for batteries or hearing checks for support — if I went on my own they don’t ask me questions they just give me what they think I need and off I go. When I bring someone with me the audiologists ask questions about what the problems are, how can they help me and so on. That’s why I feel I need someons as a witness, it becomes 2 people against 1; if I have only my word against the audiologist I feel I cant complain. Well it’s how I feel anyway.



December 5, 2010

Hearing loss ‘experts’

Filed under: audiologists,hearing aids,hearing loss — partdeafpartgeekpartgirl @ 5:04 pm
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In a reply to DGT’s comment, I promised to post examples of the ignorance of some audiologists.

Okay, so I’ve already mentioned the lack of visual display to alert patients for their appointment within audiology departments (instead they will literally say or call the name).

MoiraDancer commented that her audiologist department phones her for h.aid follow up appointments… Lady X with severe hearing loss told me she gets the same thing from her audiologists, they try to phone and refuse to e-mail or fax. I used a drop-in clinic as I never got a follow-up call…. unless I didn’t hear it… ;-)

Lady X also has to put up with audiologists talking down into their notes, not facing her, when she needs to lipread. So then Lady X can’t follow what they’re going on about if she doesn’t have a friend with her. They won’t write things down for her either. Seriously, what a bunch of ****s (insert 4 letters as you feel appropriate).

An audiologist I saw thought that the international symbol for deafness & hearing impairment was a sign for hearing aids. (This one, in case you don’t know what I mean- ) I had to tell her it’s displayed where there are facilities for deaf/hearing impaired, when there is a ‘T’ in the bottom right corner there are induction loop facilities which can be used with a hearing aid. She still didn’t seem to believe me about the symbol, and said that I *might* be right, but she’s seen it for hearing aids….

She saw that symbol on a badge. I had a few different badges made up so I was less afraid to leave the house. The audiologist fitted me a h.aid and she said that I wouldn’t be needing those badges now… Um… A hearing aid is a really useful, wonderful gadget, but it will NEVER bring you normal hearing. (Doesn’t that audiologist even know this most basic thing? How can she give realistic expectations to patients if she doesn’t even know that?) There are plenty of noise situations in which you’ll really struggle. I often do still wear the badges as I still can’t tell the direction from which sound is coming. It’s not about having an ear switched on or amplified but also how the brain interprets the signals. I hide and avoid crowded places as best I can.

One more thing about this same lady, she offered me to wear the h.aid on my way home from my first appointment obtaining it and having her it set up. UH OH…! Now I’d read around the subject area enormously before getting my bionic ear attachment. I’d wanted to prepare myself as best I could, I wanted to minimise the opportunity for any more unpleasant surprises. Also I didn’t want generally unrealistic expectations. Every piece of literature about this (including the sheet from the audiology department!) advised not wearing it outside until after getting used to it indoors. You’re supposed to introduce it to your ear and brain very gradually. Noises in a h.aid sound very strange and metallic/electronic at first and it takes a while for your brain to make sense of all the new noises– your own voice really does sound weird enough, so you’re supposed to progress slowly in a safe environment. Not wear it home walking (or god forbid driving) along a busy road etc.


December 3, 2010

Thick or prejudiced (or both)?

Filed under: audiologists,hearing aids — partdeafpartgeekpartgirl @ 6:00 pm
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Friend: Maybe you’d better understand these problems I’m having if you wore hearing aids too…

Audiologist: If I wore hearing aids I couldn’t do this job!

…..oh come on Mr Audiologist!! Bloody hell. What new level of ignorance is this?? Maybe if you knew how to do your job properly and set up hearing aids correctly you’d realise hearing aid wearers can (as many do) work as audiologists. Shameful.

The audiologists who wear hearing aids do tend to be better as they seem to care about their patients and have shared experiences ie they can better understand problems hearing aid wearers face (especially when the devices aren’t set up correctly…).

December 2, 2010

This really takes the biscuit

Filed under: audiologists,hearing aids — partdeafpartgeekpartgirl @ 8:39 pm
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One friend I particularly wanted to blog about has told me she’s too afraid to let me write much on her situation in case the local audiologists find out (especially one audiologist who singled her out and was quite awful to her).

How disgusting is that? She is a pensioner who lives on her own. I set up this blog to be anonymous in order to protect both patients and ‘professionals’, but this friend is still afraid. (If you wear hearing aids you will always need access to audiologists for example in case you medical condition changes or if your hearing aid breaks etc.)

I’m sick and tired of my friends being bullied and persecuted. I’ll try to include tiny snippets about what’s happened to her, but in as vague a way as possible.

Seen, not heard…

Filed under: audiologists,hearing aids,hearing loss — partdeafpartgeekpartgirl @ 12:41 pm
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Hello and welcome!

I’ve basically started this blog to document the ignorance and prejudice hearing loss sufferers encounter from *some* audiologists. No names will be named, this isn’t about bullying or shaming individuals or departments.

I’m painfully new to hearing loss so this is a whole new world to me. A hearing friend was shocked about the stories I told her, she said I had to write a blog.

At the very least I’d like to get this stuff off my chest. Maybe others who put up with this sort of thing will find it somehow comforting to learn that they’re not alone and they may even like to contribute. Perhaps some audiologists will read this and review their manner. I’m hoping only good can come from this.

For more info, please take a moment to read the ‘About Me & Why I’m Blogging’ section. Thank you.

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