British Tinnitus Association Q&A

[Nic]

I think that one of the biggest problems we have in terms of funding is that T is invisible. .

(Personal opinion time)
I can't really disagree with that. The fact that so many people have tinnitus but manage it successfully (and that's great) means that it isn't seen as an issue - so doesn't need investment into research. I think another issue is that although it can affect quality of life, it's not a life threatening condition in the way that (say) heart disease or cancer is. Unfortunately, there's a lot of conditions fall into that category, and tinnitus has to compete with all of them for funding. And finally - tinnitus research is hard. Tinnitus is so variable, there's not one cause, one mechanism. It's complicated. And it's going to be expensive. We're still at early stages with some things, and basic research isn't necessarily attractive to donors.

 

[Nic]

.So knowing that the limbric part of the brain has alot to do with emotions it seems this is what causes the distress and anxiety or obsession over T.
Is this what habituation is ... Does the correct use of TRT speed up Habituation.If so why is this not a standard treatment for tinnitus by doctors and insurance companys So foul up-in cochlea-----------------------------limbric area of brain some -where between these two parts of the body there might possible be a cure ^ for tinnitus,but most definitely Habituation.Is this the areas of the body that is the most accepted as the possible cause of tinnitus.

I'm not a medic or researcher, so this will only be a brief reply - I will see if I can get a more technical answer if you prefer.

If we didn't filter which stimuli to respond to, we'd be swamped by information and wouldn't actually be able to perform any kind of higher function. One mechanism of that filtering is habituation, which has been described by Kandel as follows (as quoted in Tinnitus: a multi disciplinary approach by Baguley, Andersson, McFerran and McKenna)

In habituation, the simplest form of implicit learning, an animal learns about the properties of a novel stimulus that is harmless. An animal first responds to a new stimulus by attending to it with a series of orienting responses. If the stimulus is neither beneficial or harmful, the animal learns after repeated exposure, to ignore it.​

Jastreboff et al used the neurophysiological model (ie involving the limbic system and the autonomous nervous system) in the development of Tinnitus Retraining Therapy, but they have agreed that TRT is not the only treatment that fits this model.

There have been some criticisms of both the neurophysiological model and TRT, which is is probably why TRT is not a standard treatment. I'm going to quote here from Tinnitus: a multi disciplinary approach and if anyone would like to read further on the topic, this book discusses both the model and TRT in some detail. Whilst written for professionals, it's pretty accessible (by medical textbook standards).

The assertions made in the Jastreboff neurophysiological model are also not as well supported as sometimes claimed. For example, it is not clear that tinnitus can be likened to a tone to which the patient is classically conditioned. Further, the role of the limbic system in tinnitus distress might seem hard to contest, but imaging research has not been fully consistent with this theory...Indeed, from a learning psychology point of view, there is much left to explain with the neurophysiological model, such as the temporal properties and actual instances when aversive reactions have become conditioned (McKenna, 2004). Personal attributes such as experience and personality are marginalised in the Jastreboff neurophysiological model, and this does not fit well with observations in the clinic.​

However, the authors do end the discussion with:

Despite the many criticisms that have been levelled against the Jastreboff neurophysiological model of tinnitus its basic principles are still used by many, perhaps the majority, of tinnitus clinicians worldwide, more than two decades after its publication. It is difficult to overemphasise the improvements in tinnitus management that developed as a result of this work.​

 

[Nic]

The BTA is a charity funded purely by donations? Does it receive other income from any other source?

You can find the answers to most of the questions in our Annual Report, which I've uploaded here, but David will be along with a fuller answer. I know he will explain about our new volunteering strategy too, which we're very excited about.

 

[Nic]

BTA and ATA no offence but you should contact @attheedgeofscience for some guidance ... Picking his brain is a must!

Hopefully this Q&A will have shown that we are always genuinely happy to take feedback, suggestions, questions or praise (hopefully!) from the tinnitus community. Although this thread is closing soon, we can be contacted either through our profiles or via email, phone, website, Twitter, Facebook messaging ... we're here, we're listening. We can't do this without you!

If anyone would like to volunteer their time and expertise, perhaps in a more structured way, to help the BTA improve what we do for people with tinnitus, do feel free to get in touch.

 

[Nic]

Out of curiosity -- and assuming it's not too personal -- how many (if any) of the BTA's staff have chronic tinnitus themselves?

I believe most of us experience tinnitus from time to time, and there's at least one member of staff I know who says they have it most of the time (but it very low levels) but they've only been aware of it because of working here! I think the majority of our Trustees are also people living with tinnitus (and some have hearing loss or hyperacusis).

I remember the first time I had tinnitus - I had an ear infection, and the tinnitus was 24/7 for 8 weeks. I had no idea what it was - this was pre-Internet - or how to manage it. At one point, I banged my head against the wall just to distract me (not to be recommended!) It did go completely, and by that point, I had got used to it, because it took me 3 or 4 days to realise I hadn't heard anything for a while!

Nowadays, I sometimes get something that sounds like a mosquito, usually in the middle of the night, and usually when I've been worried about something! Currently, I'm also experiencing a loud horn like sound from time to time, with a muffled feeling in my ear but it's very intermittent. This is a new thing, and I think it's related to my MS, which is having a little period of increased symptoms. Because I know what it is, I can acknowledge it and move on. Also, having MS helps in a weird way - I know that I can habituate to unusual sensations.

 

[Nic]

Okay, so I have mild tinnitus. Should I statistcally be worried about worsening? Any statistical numbers on that matter? Ive had it for 2 months now. Any statistics for it going away on its own?

The statistics show that for the great majority of people, tinnitus improves - we're a very cautious evidence based organisation, and in big letters on our main leaflet, we say "It does get better". Of course, recovery is not linear, there will be peaks and troughs but the general trend is for tinnitus to be less noticeable. It's fairly common for tinnitus to resolve spontaneously, especially if it has been caused by some underlying issue such as an ear infection, cold, flu etc.

I'm taking these figures from Living with Tinnitus and Hyperacusis, by McKenna, Baguley and McFerran as they are the simplest I can find.

Over 30% of people have experience tinnitus at some point in their lives, and 10% of the population have tinnitus that is classed as persistent. For 1 in 20 of the people with tinnitus (so 5% of people with tinnitus) their tinnitus is "moderately to severely annoying". For 1 in 200 people (0.5%) it causes "a very significant reduction in their quality of life".

 

[David]

The BTA is a charity funded purely by donations? Does it receive other income from any other source?

The majority of our income is from legacies (gifts in wills) - the breakdown can be found towards the back of the annual review Nic posted.

How many people are in paid employment for the BTA and what percentage of the total annual donations is spent on salaries? and accomodation, expenses, offices etc...

We currently employ 12 people (5 full time, 9 full time equivalent). You can access our full accounts via the Charity Commission here: http://apps.charitycommission.gov.u...teredCharityNumber=1011145&SubsidiaryNumber=0

As previously said though if you want to make a donation for research, then this can be put towards this only and will not support any of the charity overheads.

In comparison percentage of volunteers against paid employees?
Is it possible to encourage more full time long term volunteers to reduce the salary bill?

At the end of last year we had 58 volunteers. We recently recruited a Volunteer and Engagement Officer to increase our volunteer base and offer more services though this and (hopefully) reach more people. We're developing roles to support what we do (rather than replace people) currently and we'll have to see what the appetite is for volunteering at the BTA first. Not sure how likely it is to expect to gain full time long term volunteers, we'll see how it goes.

How many people who work for the BTA actually have Tinnitus?
Do the people who answer the phone and give advice actually have Tinnitus?

In addition to what Nic said above (in response to @Markku) some of us do, some don't. I leave it up to them if they want to announce it or not. Personally, I do occasionally - according to my GP I produce an unholy amount of ear wax, every 3-4 months I have them syringed. Through this period I have tinnitus and as a result of this I have 1-2 ear infections per year and again experience tinnitus though this. I'd estimate I have tinnitus for a couple of months per year. This is not permanent tinnitus (in my view) and I would not describe it as chronic.

Currently staff answer the helpline, as part of the Volunteering Strategy we're trying to bring people in to answer the helpline who have tinnitus. We used to run a system called 'Contacts' (people who had tinnitus and would speak to others about it) we had to suspend this, we're hoping to reinstate it soon.

 

[David]

BTA and ATA no offence but you should contact @attheedgeofscience for some guidance how to do things better!
If he was the chairman of any tinnitus association we wouldn't be here today!

Again in addition to what Nic posted above, we're always on the lookout for good Trustees! We had an open recruitment process last year (advertised on our website amongst other places) and would still welcome any further applications. Not up to the staff who become Trustees however - it is a decision made by the rest of the Trustees and successful applicants are then put to our membership for election.

 

[David]

What is the talent base in the company? What percentage is allocated for research, customer support, etc..

You can see who we all are here: http://www.tinnitus.org.uk/people
Admittedly this needs a little updating @Nic !

Percentages depend upon budget, previous year's income (not always easy to judge, as we're dependent upon legacy income) and if we get sufficient high quality research applications to fund. However the annual reports linked above give you previous years' percentage breakdowns.

 

[David]

Okay so I have tinnitus. Fairly mild. It is no secret that there is some sort of link between tinnitus and hyperacusis. So should I be worried about developing hyperacusis? Ive had tinnitus for 2 months.

In a word - no.
Most people with hyperacusis will have tinnitus, but the opposite is not the case. Having tinnitus does not mean you will acquire hyperacusis.

You're right that there probably is a link between the two, though no one fully understands what that link is.'What is the link between tinnitus and hyperacusis,' was one of our top questions when we looked at research priorities.

 

[David]

I wonder if you could provide some insights as to how advocacy is being executed within the BTA. Typically, charities are short of funding and have to rely on donations or limited government aid. One potential avenue to maximize the use of funds might be to enlist the help of celebrities (not necessarily for funding, but for the "publicity value" and/or to promote the cause of an organization). When it comes to tinnitus, there are a number of musicians and entertainers to "choose from". But there are also people with tinnitus who are involved in politics - such as Mr. Jack Straw (former interior/foreign minister of the UK). One would think that he could be a potentially powerful ally in relation to "anything related to tinnitus sufferers" i.e. funding from government and/or legislation. Advocacy sometimes involves a lot of perseverance - something I know myself. However, just this weekend I - as part of Team Awareness - reached out to several CEOs of otology pharmas and one or two celebrities and got at least one positive response so far. So it can be done, so-to-speak. Thoughts?

Hello @attheedgeofscience - was hoping you'd get involved!

There's a lot of different points within this, will try and answer as concisely as I can;
Politically - we are members of the Alliance on Hearing Loss - a UK consortium of charities lobbying the Department of Health (primarily) but also other government departments. We've been supporting the development and implementation of a cross-government Action Plan on Hearing Loss (tinnitus is included within the definition of 'hearing loss,' within the document - not ideal but we're in there). We think this will be published shortly, questions have been asked in the UK parliament previously.
"The Department of Health is engaging with a range of organisations in developing this action plan ...., we aim to publish it as soon as possible. I will get back to the hon. Lady with an indication of the likely publication day. It is time that we set a target date and then focused minds on getting it published." Hansard 12th November 2013.
We'd then have our foot in the door and something we can use to lobby for better services/change in how these are delivered, as the document states, it's looking at hearing loss as a whole but there would be a way in.
Our other efforts here have been to lobby and support campaigns to either decommission audiology services in the UK or reduce the criteria for which hearing aids are available in the UK -very much firefighting and reactive work but required none the less. http://www.theguardian.com/society/2015/jan/03/hearing-aids-supply-cuts-nhs-depression-dementia)
That said, we have had some successes:

• 
  http://www.actiononhearingloss.org.uk/community/blogs/our-guest-blog/ccg-to-delay-cuts.aspx
  http://www.actiononhearingloss.org.uk/news-and-events/all-regions/news/charity-welcomes-decision.aspx

Celebrities - we do get some support (examples in previous questions) but would love more and continue to try and get this. It is going to be up for consideration at the next Trustee meeting how to do this more successfully. It is a challenge though - there isn't an easy photo op like there is with many other organisations so press interest can be challenging. That said Chris Martin's story was pressed by Action on Hearing Loss and we had a campaign on BBC Lifeline in 2013 http://www.bbc.co.uk/programmes/b03fqh4s You can't buy time on the BBC and this received an audience well in excess of a million. However getting celebrities to support us has been challenging and for a number of reasons but as one of our Trustees is fond of saying, 'Just because you're hitting your head against a brick wall, doesn't mean you should stop.' Many celebrities have spoken about their tinnitus without prompting and this has given the condition welcome publicity. As you say it's a slog and we continue to preserver with it. Jack Straw is on our list!

CEO's of Otology Pharma - I think we're in touch with most of these and we either have an information-only relationship or they engage more proactively, depending on how advantageous to them they see the relationship. We're always open and will engage with any/all who want to.

 

[David]

Tinnitus has several categories: objective/subjective, cochlear-related/non-cochlear related, age related/non-age related. Perhaps one of the biggest problems facing a tinnitus patient is that tinnitus is just considered "tinnitus" in all cases i.e. there is no differentiation between tinnitus and TINNITUS in the medical literature (or at least not when a person shows up at his or her general practitioner's office). Thoughts?

(personal opinion)
Agree and don't think it's the biggest problem only facing patients but also researchers. As said previously I think subcategorisation is essential to gain a fuller understanding of treatment efficacy - we may already have treatments that are effective for a number of subcategories but because all patients (and research participants) are assessed much more generally it's hard to pick up such subtleties, especially in studies with 100-200 participants. I think there will be a lot more papers on this in the next few years and will really open up tinnitus research - TINNET will play a large role in this. All that said defining and agreeing on the subcategories may be challenging for patients, doctors/audiologists and researchers alike. First off do you do it by cause or severity/impact - or both, or something else entirely!?

 

[David]

Last year, there were a couple of incidents with Ebola outbreaks in the US. There was also a doctor from the US who was treated with an experimental drug (which was still in the preclinical trial stage). It worked. Currently, there are at least three pharmas within the otology field that have drugs for tinnitus in the post-preclinical trial phase. I tried myself to obtain the study drug formally via a doctor involved in one of the given clinical trials. It did not work - not because of the doctor - but because the pharmaceutical company would not release the drug for non-study purposes. If patients are willing to take a risk, should that not be allowed? Would the BTA even consider trying to influence the so-called "fast track" process to have it modified? Thoughts?

That's a big ethical debate. Any drug that is going to be made available within the UK needs approval by NICE to become available, for this to happen there needs to be a robust evidence base that the drug is safe and works. http://www.nice.org.uk/news/press-and-media/nice-issues-good-practice-guidance-for-local-formularies
For any drug to become available to the UK tinnitus community at large, then it needs to go through the hoops and that's what Auris/Autifony are currently seeking to do. It may be slow but in my opinion generating high quality robust evidence is the only way any of these drugs will become widely available. In the meantime, we wouldn't recommend any treatment/medication that does not have an evidence base.

 

[David]

It's probably fair to say that life-style habits in the modern (noisy) world are one reason behind a large number of tinnitus cases. Does the BTA - as a tinnitus organization - see itself as partaking in preventing tinnitus or just helping those who suffer from it? By "prevention", I mean attempting to influence policy makers to enforce safety standards for e.g. concerts. [Note: I, myself, contacted the EU last year to enquire about a certain number of quick-win initiatives such as mandatory handouts of earplugs at concerts; the feedback can be seen elsewhere on this site].

Agree with your general thrust but would say that currently the evidence isn't there to back up the theory (more tinnitus because of louder venues/headphones, etc). We do see ourselves as having a prevention role - one of the reasons we instigated Tinnitus Awareness Week. However we've stayed away from general appeals as Action on Hearing Loss did that and we didn't want to duplicate their work. http://en.wikipedia.org/wiki/Don't_Lose_The_Music

We haven't sought to influence policy makers, to enforce safe listening standards at concerts - however there has been previous sucess in limiting the volume output of headphones - http://www.actiononhearingloss.org..../eu-standards-for-personal-music-players.aspx

We are looking at how to effect behaviour change amongst young people. We recently commissioned a small piece of research titled Exploring attitudes among young adults to tinnitus and hearing problems, and the use of noise protection. With the hope this would lead to a better understanding of how to influence behaviour change. The aim would be to build upon the work of Annick Gillies conducted in Belgium http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0070297

 

[David]

What is Dr Roland Schaette up to these days?

Roland's still around and actively involved in the tinnitus community. He's now a Lecturer in Tinnitus at UCL https://iris.ucl.ac.uk/iris/browse/profile?upi=RSCHA01 and looking to get involved again in tinnitus research (and gain the funding to do it) as far as I know. He' also just written the Tinnitus Research Update 2014 -2015 for our Tinnitus Awareness Week Press Pack - attached below.

 

[Nic]

To follow up David's reply on campaigning and celebrities, it is something we actively engage in, but it can be slow going.

I know from working on the BBC Lifeline Appeal, especially, just how hard it can be to get a celebrity involved - some don't want to know (or more likely, their "people" filter requests and ours does not get past the gate), some want to concentrate on the causes they are already involved with, and some want to help, but their schedule doesn't give them the time to be available when we need them.

We are working smarter in our engagement with celebrities (for example, Sting has recently retweeted regarding our helpline appeal) and that will be ongoing.

On a side note - we have helped several household names learn to manage their tinnitus. However, they aren't necessarily that keen on publicising that they have tinnitus, or that they found it difficult to deal with. And we respect that.

<edited to correct an embarrassing typo >

 

[David]

Will Australia ever be brought into the 20th century (at least) with tinnitus/hyperacusis research and treatments.

We were disappointed to hear the Australian Tinnitus Association was no more, the Victoria Tinnitus Association is still alive and well though. Not an expert on the treatment availability in Australia I'm afraid - though we have had the odd audiologist/hearing aid dispenser attend our Tinnitus Adviser Training course and annual conference over the years...

 

[David]

I have seen a blog on YouTube in which a chap is having marvelous results lessening tinnitus with a Russian device called a Scenar; has anyone else tried one of these?

This is one of the treatments that appears on our radar every now and then, doesn't seem to be widely available. As far as I know it is not backed up by any research evidence.

 

[David]

What are BTA's specific R&D focus areas/topics?

• Mechanisms of tinnitus/identifying potential therapeutic targets

• Existing and novel practice/treatment

• Prevention

• Population/demographic/epidemiology/economic studies
Our research strategy is here;
http://www.tinnitus.org.uk/researchstrategy

On what, specifically, is BTA focusing its resources right now?

That's a bit watch this space, as we're in contract negotiations on two projects currently, should have more to say on both of these by the end of next month. The two larger projects we're supporting are listed here;
http://www.tinnitus.org.uk/healthcare-appeal
We've also got two smaller research projects live titled, What is the relationship between tinnitus, hyperacusis and anxiety in children aged 8-16 years? and Exploring attitudes among young adults to tinnitus and hearing problems, and the use of noise protection.

Previous research we've supported here;
http://www.tinnitus.org.uk/bta-supported-research

Can you list them (R&D efforts) in priority?

We don't prioritise beyond this, what we support then depends on the quality of application and how well it scores through the peer review process and of course how much funding is available.

If the BTA had a sufficient budget (a dream budget), what would be the top R&D area/topic of pursuit?

Would BTA consider such a listing on its website?

EVERYTHING! Joking aside, at the moment I don't think it is clear where the cure is coming from and wouldn't want to close doors by limiting what we'd look at. Currently we do that but only because we are limited by the funds we have and what we can realistically achieve with them. We do have those sorts of discussions regularly at all levels within the BTA and it gets as heated as a similar debate would be on here! If we did receive a huge donation, I think we'd advertise it far and wide and see what applications came in and what was most likely to advance the cause. That said, it would be the Trustees that would decide the plan of action, not the staff team.