Hello everyone again. Wow, I wasn't expecting this sort of response, so hopefully I can explain a little bit more about the research in question, why we are supporting it, how we are funding it and what we expect to be able to do with the results.
I think some of the comments made perhaps have arisen from me not really explaining properly what the project is about, who it is aiming to help, and what we hope to achieve, so I will address those questions first.
Back in 2011/2012, with the help of the tinnitus community - patients, carers, clinicians and researcher, we undertook an exercise under the aegis of the James Lind Alliance
http://www.tinnitus.org.uk/JLA to identify the Top Ten Research Uncertainties for tinnitus.
These can be seen here in full, but one of the priorities was "how can tinnitus be effectively managed in people who are Deaf or who have a profound hearing loss?" - because as you no doubt understand, the existing strategies (sound therapy, relaxation, CBT, counselling, providing information) can be more challenging or even impossible to provide for someone with a profound hearing loss. Many of you will know the upset of being told, erroneously, by a medical professional "there's nothing you can do, learn to live with it" - well, for some people with a profound hearing loss, there really is nothing for them, and that's unacceptable. It was a question important to the tinnitus community, and important to us.
The aims of the survey - and this is only the first stage in this project - is to identify the scale of the need for the Deaf community; to identify what people who are profoundly Deaf currently manage their tinnitus; to identify what support (if any) is being offered to people who are Deaf/have profound hearing loss, and then to find out what those with such severe hearing loss actually want in terms of resources and support. The results of this survey will be used to publish a report which we can then use to help in the development of improved services and resources.
Given that at this point it's pretty well documented that tinnitus is not an inherent result of HL, but is instead the result of problems in several brain structures, which have been understood with more and more specificity over the past two decades based on fMRI studies, I am curious to know why the BTA thinks that this is a useful line of inquiry.
We're not disagreeing with this linearb, however, what we are trying to address is how people with a profound hearing loss can manage their tinnitus successfully when current support and resources are limited. We are asked time and again when we attend community events what we are doing to help the Deaf community, and this survey is the first step in putting a support toolkit together.
How much money did the BTA give to this survey?
All the money for this project has been raised by the BTA through approaching grantmakers and trusts. No BTA reserves or member donations have been used. These grants are awarded on a competitive basis, with the grantmakers assessing the likely benefits and impacts of the research they are funding
...there should be more focus and funds for an actual cure, something the BTA should strive for.
We remain fully committed to research for a cure - as you can see from this quote from David Stockdale when we launched our
Six Year Research Strategy: "The BTA aims to ultimately find a cure for tinnitus but also seek to prove the efficacy or otherwise of current treatments and seek a better understanding of the impact and burden of tinnitus on the UK."
I'm just not sure what it will take for ATA and BTA to wake up and realise that we need not another survey but a cure/relief of some sort.
In the recent Q&A, we were challenged by you valeri on the same point and I responded there, my answer then still stands, it's post #14 if anyone is interested.
https://www.tinnitustalk.com/threads/british-tinnitus-association-q-a.7746/
Dont tell me the German Tinnitus League, the British T Association and the American T Association, do not have enough combined money to fund such a trial
We don't, seriously, we don't. It takes millions of pounds to get a drug trial underway. Our income last year was just over £600,000.
WHY DOES THE BTA IGNORE POTENTIAL DRUGS FOR TINNITUS?
We don't - we're following both the Auris Medical and Autifony trials closely, and for both we assisted in publicising the calls for volunteers. The minute there's news, you can be sure we'll be talking loudly, spreading the word, good (hopefully) or bad (hopefully not). We just can't ourselves support drugs trials.
If I were to organize an ANTI BTA rally outside their UK headquarters, how many T sufferers would join me?
Dan, we'd welcome you to our office (calling it a headquarters gives it a glamour it doesn't have!), and you can have a chat with us about research, support, whatever you wanted - we could probably stretch to tea and biscuits. This offer is open to all of you - we do take your feedback on board.(BTW, the staff contribute for the tea and biscuits, we're not spending money that would otherwise go on research!)
@Nic , can you honestly tell me that this research isnt intended to introduce more people with hearing loss to hearing aids?
Please answer this question. Thanks you.
Dan, the people we are talking about have a profound hearing loss, so either they cannot be aided, or have already been offered a hearing aid. This research is not about correcting hearing loss, but about tinnitus management.
This money need to be spend somehow why would they be spent on tinnitus research when they can be spend for something useless.
The Big Lottery Fund doesn't support medical research. However, by supporting these events with the £134,000 grant, this means we have £134,000 in our reserves to spend on research over the next 3 years. So everyone wins - those struggling with their tinnitus now who want support, and those looking for a cure.