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!
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
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...
You are not boring me senseless at all. It is encouraging that the private hearing aids that you trialed helped you because at least that gives some hope. I would have thought that the NHS is obligated to provide adequate aids. I wouldn't be surprised if it was the programming rather than the actual hearing aids that were at fault with the NHS. My understanding is that the NHS aids are pretty much the same as those you can get privately (minus a few bells and whistles). Do you know what make and model the private ones were that you tried? If you can find out you can then find the model most like it available on the NHS. My type of hearing loss is atypical too and I have read so many stories of people that give up on their hearing aids as they do not gain any benefit with them and in many of the cases, it is likely down to poor programming by inexperienced audiologists rather than anything else.
Hi there - I questioned the cookie bite diagnosis as it confused me. I have now had 4 separate tests with 4 separate audiologists and all say the same - Cookie Bite, Mod to Sev mid and high frequency with low frequency in tact. The reading still makes the bite shape on the graph but its a different way around apparently. It is equal in both ears. I can't hear a bloody thing in a crowded room apart from all the annoying background noise which is in the low frequency range. The private audiologists I have seen have let me try hearing aids that sound amazing - they can reduce my severe tinnitus, reduce background noise, zoom in on precisely the people I want to hear and they don't amplify all frequencies at the same level. They are amazing but are almost £3k which i'd really rather not spend. Last weeks NHS audiologist suggested that it was tough luck really that I have such a loss as they just don't have the devices to help. I am under the impression that if they can't provide me with something suitable for my condition they have to refer me to an outside provider. Otherwise aren't they prescribing me hearing aids for someone else's prescription, not mine. It's really causing me stress at the moment. Im struggling with everything I do and I'm avoiding any social situation. I'm dreading parents evening next week. At the moment I also have a cold and my hearing is (hopefully temporarily) worse and the tinnitus is pretty bad too so it's making me feel rather sorry for myself. The more I read the more I understand that cookie bite loss needs to be dealt with by someone who is specifically competent in that area as its just not understood by everyone. I could rant on about this forever at the moment - it's literally taking over my life. My loss has deteriorated since April and i'm so scared that it's going to get worse because the NHS are not acting quickly enough. Thanks for taking the time to write. Sorry for probably boring you senseless!)
Out of interest, did you get a copy of your audiogram? A cookie bite hearing loss pattern is where low and high frequencies are intact and just the mid frequencies are affected. If your low frequencies are fine and your mid and high are bad then this is the normal and most common ski slope hearing loss pattern. Perhaps what your audiologist meant was that your hearing loss is so profound in certain frequencies that hearing aids will not help (I am profoundly deaf in all frequencies in my right ear for example so a hearing aid cannot help at all for that ear). Whatever the reason, your audiologist has done a terrible job at explaining him or herself. I am lucky that although my bad ear is completely deaf, my other ear only has a mild hearing loss but I still have had to fight for any assistance and to get hearing aids on the NHS. It is shocking how low priority heating loss is treated not just in the UK with the NHS but in America with insurance where many policies consider hearing aids 'cosmetic' enhancements.
I keep telling people who are unsympathetic to stick some earplugs in their ears for a few days and see how they get on.
We have to be our own champions and be relentless in our fight for what is best for us. You certainly sound like you've had a battle this far. Make sure you write down plenty of questions ahead of your next appointment. I plan to do the same for my hearing aid fitting next week. I have waited so long and don't want to have to wait a further three months to have my next follow up.
Can't write proper reply just now as am on break but this might be of interest.
You abslutely correct about the 18weeks