Tinnitus: Where to find help....

[Jellybeanz_]

Hello, I have had left unilateral tinnitus for many years, but only in the last 4 have I found it increasingly difficult to selfmanage, even to contemplating suicide which is completely not my character. It has taken 4 years to get a head scan to rule out acoustic neuroma, see a GP with ent special interest and a hearing therapist. My GP practise lack understanding and my last appointment I was told I was completely fixated upon myself, had had specialist support and needed to accept that the tinnitus was not going away. The hearing therapist was completely unprofessional, did not introduce herself and did not explain what services she could offer. Her explanation of neuroanatomy was complete nonsense and she told me to go away and google white noise after I had explained all the self management techniques that I had tried including the whole spectrum of coloured noise. I have contacted the hospital PALS team for more information regarding her qualifications/registering body, but they could not find anything, the audiology head has not responded to phone calls or email and I have to wait another 17 weeks to be seen by the same hearing therapist. My GP refuses to refer me to another hearing therapist as I have 'had my chance'!

Does anyone know what regulations or guidelines are in place to support patient care for tinnitus? I have looked at the NICE guidelines and really can't see anything concrete in terms of pathway of care.

I did ring the BTA helpline and had a supportive conversation but the upshot of that was to move on in a positive way.....Feel like I am going round in circles and not getting anywhere......

Sorry for the long rant, but really am stumped as to what to do next...

Thanks for reading

[Seashore22]

Hi Jellybeanz,

I'm sorry to hear that you are struggling and finding it difficult to access treatment. I can relate to your post and am in a similar position. If I find out any helpful info I will share on here. Even though I have been fortunate to have referrals these have come to an end where only very short term help was offered. So far I have had 2 referrals for Tinninus and Hyperacusis and currently trying to access a 3rd and my GP is also saying have possibly had my lot. I disagree as my first referral was a few years ago to a private ENT who performed tests to rule out any other problem but then said would need to live with Tinnitus. My second referral was recently and I have been fortunate to have 6 sessions of CBT with an Audiologist but feel I need further but that is the max can have. I have now asked my GP for referral to a different hospital where I think TRT may be offered but this is proving very difficult. In hindsight I feel that my initial referral a few years ago would have been more appropiate if was access to Audiology Services which I think affects many people in experiencing difficuly in accessing treatment depending on which service they are referred to although I appreciate tests may need to be carried oiut to rule out any other problem,

I hope you and may others on here get the treatment and find some relief.

All the best

[drumcraw]

thats a terible story but i know that some ent clinics can have staff like that as i had bad exp at my local one not only me but afew people i know in my local help group exp. the same as for your gp try another one and insist you want to be refferred to another area for you T, to be seen by audiologist or therapist ive never seen atherapist after over 4 years as it seems dont have them here only audiologists its a terrible attoitude to take with you you have my sympathy but tell your doctor you want a second opinion on your ears and you want to be refferred somewhere else dont know where you are in uk but i had to fight to get taken 40 miles away in gasgow after similiar bad exp in edinburgh, thats about all i can say hope it helps somehow, stay strong i know its not easy! craw.