Hi all - I have been diagnosed with Cookie Bite loss (I have Mod-Severe High and Low Frequency Loss diagnosed privately earlier this year).
Today I had an appointment with the NHS who pretty much told me that the devices that they could offer me are not suitable for my kind of hearing loss as it will amplify all frequencies (even Low frequencies which are intact). It will do nothing for the tinnitus, nothing for the background noise and will amplify even my good frequency so that is is uncomfortably loud! I suggested that offering me a hearing aid that was not for my hearing condition was not acceptable. He kind of shrugged! I can't really afford to buy privately but have briefly tested Resound aids that help with the tintus and reduce background noise, and due to the complexity of my loss - the large amount of channels that can be programmed are amazing.
My appointment today comes over 22 weeks after my initial GP referral and the next appointment which I don't have yet is with the department that will issue me with the devices to try. As I understand, the NHS has a duty to have provided me with hearing devices within 18 weeks of the initial GP referral and if they have not done so, they must provide alternative options. My guess is that I am still several months from getting devices.
I cant hear on the telephone, I can't hear in the car or a crowded room, I cant hear my young children crying for me - I am desperate to get some help but it seems that firstly the NHS are not delivering in an adequate timescale and also, may not actually be able to provide me with anything that can actually make my life easier.
Can anyone offer any glimmers of hope?
Thank you so much for reading!
Can't write proper reply just now as am on break but this might be of interest.
You abslutely correct about the 18weeks
Thanks for replying! I was so upset after the appointment. He was so unhelpful and left me feeling that I was wasting my time. I have cookie bite loss - my low frequencies are intact but high and mid are very bad. He said that the hearing aids I got would just increase general volume which means the low frequency sounds will blow my head off!! I am willing to try out what they have as he may have been wrong - but the fact that my GP referral letter was sent over 24 weeks ago - and I haven't even got the date for the hearing aid appointment yet makes me cross. I can't hear my children or the phone. I am avoiding being in busy places as thats when I struggle the most. My life is on hold because I am avoiding people at all costs so I don't have to try and hear them! I have drafted a letter to the hospital stating what I believe to be my rights (i.e 18 weeks wait time etc) so hopefully that will help me. I can't even phone them to sort it out because I can't hear. And when at my appointment the audiologist told me that eyes are seen as more important than ears...
Sorry to learn of your experience. I have finally got my hospital appointment for my hearing aid fitting exactly 18 weeks from date of referral. I thought that was bad enough. I am assuming that I will be getting my hearing aids at the appointment but wouldn't be surprised if I have to go back at a later date for another appointment. Eighteen weeks is the maximum you are expected to wait from date of referral to date of start of treatment so the NHS has failed you.
I am no professional but I am surprised that your audiologist said that there are no hearing aids to help with your type of hearing loss. It was my understanding that hearing aids could be programmed for each individual frequency. I thought it was the old analog ones that amplified all frequencies. I could be wrong though.
Your experience has been poorly handled and if I were you I would most definitely be making a complaint