Living life out loud

30 12 2009

I came across Bonnie Cherry’s story and it brought a tear to my eye. Bonnie lives in Lawrence, Kansas. She had a brain tumour and the removal of this meant she lost her hearing. She can’t get hearing aids because her insurance won’t pay for it. Bonnie has fought a lot of side effects from the surgeries as her mom says…

…a soft spot in her skull, paralyzed vocal cords and the inability to speak, useless and atrophied muscles in her neck and shoulder, constant excruciating pain, a paralyzed tongue and the inability to swallow food or liquid without choking, scars not only from the surgery to remove the tumor and the nerves it was wrapped around on her brain stem, but other scars from the tissue transplants they had to use to patch her up again, and another at her throat to let her speak at all. She couldn’t hear out of one ear, and the other was getting worse all the time. They said she would need a feeding tube for the rest of her life.

Throughout all this, Bonnie has remained cheerful and positive. She has never given up and has carried on fighting. I love seeing that kind of spirit in people.

We often forget how lucky we are in the UK to be able to get a referral from a doctor and with that, walk into an audiology centre and be given hearing aids for free. They are upgraded for free. They are repaired for free. If we lose them, they are replaced for free. If you medically qualify for a cochlear implant, that’s free too.

Aren’t we lucky? I know we moan a lot online about the shortcomings of the NHS and the woeful underfunding of the audiology departments, but at least the service is there for us. At least we have got access to services and medical products to improve our hearing.

Hop on over to Vinland Valley Nursery to read Bonnie’s story. The Facebook group for Cherry is named “The Bonnie Cherry Ladies Hearing Aid Society.”



7 responses

30 12 2009

Yes we are lucky to have hearing aids for free. But I must say if I lost my hearing aids, I would not get mine for free. I would have to pay. I seen a notice in Audiology once stating this. But if the price has not gone up since then, although expensive, it’s cheaper still then going private.

30 12 2009

Perhaps it’s different in different hospitals. I know someone who lost his hearing aids twice, and they were replaced. However he was told if he lost them for a third time, he would have to pay. If someone is unable to afford to replace them, does that mean the NHS doesn’t have a duty of care towards that patient and just leaves them to struggle? I wonder if they just say that to make sure patients are careful and look after their hearing aids.

30 12 2009

Yes it makes you wonder if they do that so we are extra careful. Luckily I’ve never damaged or lost mine. But it does make you wonder what would happen like you say, if they couldn’t afford it. Do they struggle. I know I could afford to now, but then when I first seen the sign, I would not have had the money to replace lost or damaged hearing aids. 🙂

1 01 2010

You are right Liz, it is the same at my NHS trust. I forget what the charge is, not a King’s ransom but a lot of money if you have a low income.

Just an aside, I went down the private route and it it hideously expensive, batteries have to be bought, repairs paid for and trips to some far off place to get things tuned up. On the plus side they do take more time and you get to see the same person each time whereas in my local hospital I see so many different people, some of which could do with a bit of training in patient care. I think the audiologists move on to private practice or maybe they are just passing through like an apprenticeship where they experience different departments?

1 01 2010

I find same too that some could do with learning more in patient care. But at the moment my Audiologist place has not been too bad at the minute. Not so long back I was having problems with my new moulds. I went back and it got sorted, and I’ve been ok since. On that visit regarding my problem, I really felt they had the time to listen. 🙂

1 01 2010

You’re right, Liz and Ian. Patient care is, by and large, terrible. My audiology department are getting better though. Mine have implemented a card system with numbers on, they have these big white laminated cards with a large black number on it. When you arrive for your appointment, they give you a number. When the audiologist comes out, they show a laminated card that matches your number. They only put this system in place last year when I complained very loudly! They used to call out people’s names when it was their turn, and that used to stress me out no end, because I’d be trying to lipread them from across the room, foreign accent, not loud enough, was that really my name or not, etc etc – MEGA STRESS! I get that in other hospital departments, I don’t need it in ENT as well. So I told them off. I told them to have these cards and not expect us to hear or lipread them. Obviously, it worked! What I don’t like is, they still have posters on their walls saying they will not hesitate to protect their staff in the event of bullying …….. my interpreter came with me once and was shocked at the way the audiologist was talking to a deaf man in reception, he was shouting at him like he was 5, and being super patronising. She really could not believe what she was seeing. Bullying? … Ehhhhhhhhhhhh!!!! Well, deaf people are used to it, aren’t they! Isn’t it ironic, that some deaf specialists still have outdated attitudes and treat deaf people as if they are stupid. I get one of these in every hospital I go to. I was training a group of doctors a few months ago – not in deaf awareness, it was careers consultancy – but they couldn’t handle the fact they had a deaf trainer and were very very nervous. It was a very weird experience as I expected medics to be okay with disability and for it not to be a problem – after all, they see problems every day, don’t they.

2 01 2010

Yes you wouldn’t expect doctors after all to have a problem with disability. After all they come across people from every day walks of life. To be spoken to in that way is not nice. It looks aggressive. What if that person responded back nastily because of what they received. I bet the doctor would be protected, and not think why it happened in the first place.

I did not like how I was spoken to once in Audiology dept last year, so I gave it back in the same tone I received. Luckily I wasn’t seen as abusive and with my response this receptionist put herself back into check. I did end up complaining about her though, when the problem I had in general was still cropping up. I noticed she served me with a smile after that, and was much more polite. A smile which she never did with me before. I’ve noticed for the last few months she does not work there so must have left.

As for the number system calling. Our Audiology dept had that for years. But they stopped doing that a couple of years ago in place of appointment times, as our number system was a sit and wait thing. Sometimes you’d be waiting along time for your turn, so they tried the appointment way of doing instead, which meant you did not have to wait no more. So there are no numbers, just waiting for our name to be called.

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