British Tinnitus Association Q&A

Discussion in 'Awareness & Fundraising' started by David, Jan 13, 2015.

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    1. David

      David Member BTA

      Location:
      Sheffield, UK
      Hello,

      myself and other members of the BTA team will use this thread to respond to questions posted here:
      https://www.tinnitustalk.com/threads/british-tinnitus-association-q-a.7733/

      Given how some of the questions have been posed so far, it's probably worth stating that the views may be personal opinion rather than an organisation view (e.g. direction of future research, etc.) although we'll try and make this clear in any responses we give.

      We'll try and answer as many questions/follow up questions as we can. Probably also worth pointing out that none of us are medically qualified.

      Looking forward to the debate/discussion and hope it will spark new areas of work for the BTA too. We're a membership organisation and I'm keen that our members and the wider tinnitus community have an opportunity to influence the future direction of our work and have a full understanding of what we're up to!

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      This Q&A has now ended. You can find the answers to the questions Tinnitus Talk's members asked the BTA below.
       
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    2. David

      David Member BTA

      Location:
      Sheffield, UK
      Not sure I can help with this. A lot of people find they can manipulate their tinnitus by adjusting their neck/jaw not sure if this is a similar action or something different. May be worth discussing with a doctor?
       
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    3. David

      David Member BTA

      Location:
      Sheffield, UK
      The Autifony trial is promising and one I'm looking forward to following and hearing the results of. Looks like you guys are well on top of it too, judging by the thread in the Research section! We've got good links with Autifony too, so sure they'll keep us in touch with the latest news.
      http://www.autifonytherapeutics.com/autifony-tinnitus-phase-IIa-trial.asp
       
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    4. David

      David Member BTA

      Location:
      Sheffield, UK
      Last year 19% of our expenditure (approx. £120,000) went on research. In 2013 it was 36% (close to £200,000).This peaks and troughs for a number of reasons; including number and quality of applications we receive and how long it takes to actually get money out of the door (can be up to 12 months between agreeing to commission a piece of research and it starting). I've attached out last two Annual Reviews, so you can find out more. I'm happier when we're closer to (or over ) the 2013 figure.

      Donors can choose to make a donation for 'tinnitus research,' then all of that donation goes towards research and the income is shown in our accounts as restricted for that purpose.

      In terms of large financial supporters, again a flick through the annual reviews might help with this - depends on what you mean by large! That said we're always grateful for whatever amount we receive.
       

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    5. David

      David Member BTA

      Location:
      Sheffield, UK
      Assuming you mean the Acoustic CR® Neuromodulation Device, we've released a statement about the non publication of the RESET2 trail here:
      http://www.tinnitus.org.uk/RESET2

      In my opinion the biggest disappointment of 2014 was the non-publication of this trial data. It was a real opportunity to elevate tinnitus research to a new platform by having a double blinded randomised control trial on a novel tinnitus device - just showing this is feasible/achievable would have raised the bar for future research into tinnitus devices.

      That said we continue to push for full publication of the trial results.
       
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    6. David

      David Member BTA

      Location:
      Sheffield, UK
      We're always trying, but identifying that magic campaign is a real challenge - if it was easy every charity would be doing it, all of the time! In terms of the mega-successes (ice bucket challenge, no make-up selfie, etc.) the charities that benefitted had little knowledge of the campaigns until they were up and running. We're always open to ideas - we were thinking of ear selfies (then Hearing Link beat us to it), I can't find the link now but remember reading somewhere in the forum a discussion that we've had many times about the challenges of raising funds for tinnitus research/support.

      We recently ran a campaign to raise funds for our helpline (fits with the core values statement in the article!) - this was retweeted by Sting, Ben Cohen, Kim Wilde and Grayson Perry (I think this list is correct). You could argue we should have got more support for it, but it's better then we've done in the past. We're pretty new at fundraising (focussed more on grants and trusts in the past now starting to look more at appeals/campaigns) and are learning form every campaign we do, the next one will be focussed on raising funds for research. In the meantime we're running this through Tinnitus Awareness Week.
       

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    7. David

      David Member BTA

      Location:
      Sheffield, UK
      Sure in a number of ways; from making collaboration easier to giving better diagnostics tools (MRI, etc) to undertake the research.
       
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    8. David

      David Member BTA

      Location:
      Sheffield, UK
      Good question - no one can know for sure from where we are now, but in my opinion yes, possibly for some types of tinnitus. For this to happen (in my limited knowledge) hearing loss has to cause tinnitus, for a hearing loss cure to then cure tinnitus and as we know, that isn't always the case.
       
    9. David

      David Member BTA

      Location:
      Sheffield, UK
      We've tried! They did donate tracks to an album, however we've struggled to get it launched.
      http://www.tinnitus.org.uk/i-am-the-one-in-ten---a-compilation-album-with-a-real-story

      We've also worked with a photographer, who has photographed DJ's for a campaign called Flipside
      http://www.tinnitus.org.uk/bta-to-benefit-from-flipside-of-famous-djs

      We've also had some retweeet our tweets (see above).

      We try and get celebrities more involved and it is a key area of work that is under consideration by our Trustees at the moment - how do we do this better?
       
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    10. David

      David Member BTA

      Location:
      Sheffield, UK
      Almost, we're in contract negotiations currently. A good example in my reply to @Karen of how long this can take. We advertised to 31/7/14 (received three applications - bit disappointing, we were hoping for more), the applications then went for independent peer review, we interviewed the three candidates in October, Trustees approved (subject to contract) in November and we're now drawing up a contract, finalising the budget, etc. Hoping to announce the successful candidate next month, and the post to start in March.
       
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    11. David

      David Member BTA

      Location:
      Sheffield, UK
      The figure has been more or less static for the last few years. We used to have a lot more, when local support groups were more numerous and prior to the internet I suppose. In terms of attrition we gain/lose 10-20% of members per year. This might be seen as high by other membership organisations, but we're generally happy with it as the main reason for leaving is members no longer need us or are successfully managing their tinnitus now.
       
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    12. Nic

      Nic Member BTA

      There's a similar level of activity in both Europe and the USA according to the Clinical Trials website:
      https://clinicaltrials.gov/ct2/results/map?term=tinnitus - which gives 67 each.

      The focus of each area may be slightly different, I feel - the Germans have more of an interest in medications and devices, a lot of US money appears to be on prevention or the military - but with initiatives such as the TRI, there's a lot of collaboration and cross-pollination, which is to the good.

      That's true - Australia has a rather small number of clinical trials running at the moment, with 2. That's not to say research isn't happening, it's just perhaps not at the registered trial stage.
       
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    13. Nic

      Nic Member BTA

      Oh, I forgot to introduce myself. I'm Nic, I'm the Communications Manager at the BTA, and I've been here for nearly five years now. I'm responsible for the production of our information leaflets, magazine, website, looking after our social media presence ... pretty much anything to do with the written word, as well as press and media.
       
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    14. Nic

      Nic Member BTA

      It would be fabulous to be have a cure for tinnitus - not least for my dad, who's had tinnitus for 40 years. I think I speak for most people who work for charities when I say we're not in it for the money, but because we want to make a difference in people's lives - cheesy, I know, but true.

      I'd love to be out of a job because a cure for tinnitus was found, but realistically, even if a cure was found tomorrow, I think there would still be a need for organisations such as the BTA, ATA and of course this forum.

      Firstly, even when you're diagnosed with a curable condition, you will probably still want information - what are the treatment options? how do I access treatment? what are the side effects? As you all know, tinnitus can be distressing, so emotional support might be needed - again, something the BTA and TinnitusTalk can provide.

      It might mean our mission changes focus, perhaps to ensuring treatments are available (we are currently campaigning regarding cuts to hearing aid provision in the UK) and maybe we would concentrate on prevention - who knows?

      In the meantime though, we are focussing as much as we can to support vital research as well as helping people manage to live successfully with tinnitus.
       
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    15. David

      David Member BTA

      Location:
      Sheffield, UK
      To add my two penneth to the point Nic makes above, I'd love to close the charity because it was no longer needed and there was an accessible treatment/cure that helped all. Even better I'd like it to happen because of a piece of research the BTA supported/commissioned. Not sure anyone goes to work for a charity to subvert/obstruct the aim of the organisation.
       
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    16. David

      David Member BTA

      Location:
      Sheffield, UK
      We do fund research. We liaise with one another and make sure we each know what research the other is funding to avoid duplication. We also do the same with Action on Hearing Loss in the UK. Ahead of any major research commissioning we do, we undertake a gap analysis to see if there are areas that are receiving less attention and to avoid duplication.
       
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    17. David

      David Member BTA

      Location:
      Sheffield, UK
      Agree, there's loads of interesting research projects out there and unanswered questions and this is certainly one of them.
       
    18. Nic

      Nic Member BTA

      And to add to David's point, there's a lot of international collaboration in the tinnitus research community. Initiatives such as TINNET and the TRI actively foster this.
       
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    19. David

      David Member BTA

      Location:
      Sheffield, UK
      Would be worth registering this with the manufacturers of the drug, and likewise anyone who has had a similar reaction, do the same. If they get enough similar reports, they will research. Not sure if Ambien is available in the UK, but not heard of anyone reporting this to the BTA.
       
    20. David

      David Member BTA

      Location:
      Sheffield, UK
      Not my area of expertise, will try and get a more informed answer from a researcher and add here if I do. There are a lot of imaging studies and these are frequently presented at the TRI meetings.
       
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    21. David

      David Member BTA

      Location:
      Sheffield, UK
      Not aware of what research is ongoing on pulsatile tinnitus right now. As above will ask around and try to get a more informed view (will probably need to come from an ENT as that is where the research will happen I'd imagine).

      Agree with your second para and was something that came out in our research uncertainties exercise with patients and clinicians that better standards for diagnosing and treating pulsatile tinnitus were required.
       
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    22. Nic

      Nic Member BTA

      Doctors (ie General Practictioners) are notoriously a very tough group to reach, especially with the limited resources at our disposal. There is evidence that GPs are using the internet to find information about tinnitus, and we have our details and links on most of these sites (eg NHS Choices) which is a start.

      We do target publications that GPs read, such as Pulse, where the Ten Top Tips (attached) featured as a article. We also go to professional events where we can.

      We do have resources for available for GPs, and this is where you, the forum users, can really help us - for example, by taking in a copy of the Ten Top Tips for GPs attached, or requesting some of our leaflets or a poster for display. I know of one BTA member who has printed off a selection of our leaflets and made folders of information which were presented to the GPs at her local practice. Sometimes it is this personal approach that works best - we know GPs are overwhelmed by the amount of mail they receive every day.

      If anyone would like some leaflets to drop into their surgery, then call us on 0800 018 0527 or email info@tinnitus.org.uk
       

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    23. Nic

      Nic Member BTA

      Anything I say here is going to be pure speculation, and even educated guesswork might be way off the mark, as I'm useless at predictions (as my Fantasy Football team shows!)

      Firstly, I'd like to say that there are currently real treatments that do help people reduce the perception of their tinnitus available, and they work for a lot of people. Granted, there's no one universal solution yet for tinnitus, which I guess is what you are meaning, Asian.

      I think 5 years is probably too soon - trials take an awfully long time. I've been working for the BTA for nearly 5 years, and I know it was in my early days here that the Autifony compound was mentioned, which is only now recruiting for Phase IIa trials. And let's not forget the whole approval and certification process ... and then, at least in the UK, that all treatments have to be considered by NICE

      Ten years is ... well, more feasible, but I'd say optimistic. I think there will definitely be improved treatments by then, and an even greater understanding of tinnitus distress and how to manage it.

      Before I need to retire from the BTA (I'm 45) - I think that's more realistic, and possible.
       
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    24. Nic

      Nic Member BTA

      We don't actually know. My feeling from talking to people on the helpline is that it can be a little harder, but that habituation is possible.

      Some device manufacturers claim that their products should only be used by people with one non-fluctuating tone.
       
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    25. David

      David Member BTA

      Location:
      Sheffield, UK
      The status of tinnitus under the new disability assessment criteria in the UK isn't clear and people going through the system seem to be getting variable assessments and outcomes. We're hoping to work with a Disability Rights Specialist/Lawyer in the near future to develop guidance on this or to at least answer the question 'Is tinnitus a disability?' We will then use this to lobby for change depending on the outcome.
       
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    26. David

      David Member BTA

      Location:
      Sheffield, UK
      Based on the bits in the forum on this we're trying to get a meeting to discuss with GSK. However such a reaction to a drug (e.g. drug prescribed for X is helping Y) is always going to come from people with the condition, whatever it is. Agree the charities representing these groups then have a role in advocating research to verify - we might have been a bit slow to pick up on it, but we're trying to get through the door now. We've done similar lobbying/advocacy in the past when people have told us in meetings or we've found out about a potential drug/treatment already in market (most obvious/biggest example - Ginkgo Biloba)
       
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    27. David

      David Member BTA

      Location:
      Sheffield, UK
      Agree it would be a good idea although the many cultural and other variations in healthcare delivery make it unlikely to happen worldwide - working on a national level may be more likely.

      The Tinnitus Clinic in the UK is about to become 'whole of the market' and be able to offer any treatment, as best I understand it http://www.thetinnitusclinic.co.uk/tinnitus-news/independent-future-for-the-tinnitus-clinic

      The challenge to this becoming mainstream (at least in the UK) is that any treatment to be added/adopted by the NHS needs a strong evidence base and that is lacking for many of the available treatments currently.
       
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    28. David

      David Member BTA

      Location:
      Sheffield, UK
      I do a lot of awareness talks to groups at risk of acquiring tinnitus and you can tell the ones who don't take it seriously and that think it isn't a serious issue. I always say in those talks, 'No on cares about tinnitus...until you get it,' and go on to describe some of the stories people give us of their experiences of living with tinnitus. Invariably at that point someone else in the room will mention they have it and describe their experiences too.

      Disappointing to hear you don't think the cure is coming from us and of course I'd like to see the BTA able to get greater income and invest in more research. That said, we're not precious! Find a cause/group you do think will get there and support them - TRI, Action On Hearing Loss and many others also look to fund research to find a cure. Given that is the long term aim of all of our organisations and what is really needed is additional funds, go with the one you believe will get us there and support them.
       
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    29. Nic

      Nic Member BTA

      There is not currently a cure for tinnitus, but there are lots of things you can do to reduce the perception of your tinnitus sound - and that's the key phrase. You shouldn't be trying to "drown out" or mask tinnitus because tinnitus does have a tendency to fight back.

      This information has been taken from the BTA publication "Tinnitus" and more information about tinnitus and its management is available from our website www.tinnitus.org.uk - and I've attached a couple of our most frequently requested and downloaded leaflets to give you some more ideas.

      Visit your GP
      If you think you have tinnitus, go and see your GP. There are several treatment options available and your GP will be able to refer you to someone who can help.

      Relax
      Learning to relax properly is one of the best ways to help yourself. Many people who practice regular relaxation techniques say they reduce the loudness of their tinnitus and helps them become indifferent to their noises. They also help break down the vicious circle of stress and anxiety that many people find accompanies their tinnitus. Why not try tai chi, qi gong, yoga, meditation or a relaxation CD?

      Keep active
      If your mind is occupied with something absorbing, it is easier to forget about tinnitus. Work, leisure pursuits and other interests can al help to provide a worthwhile focus.

      Exercise
      Regular exercise helps the body achieve a higher level of well-being and in most cases this helps people to cope with their tinnitus more easily, as well as help them sleep better.

      Use sound
      Have environmental sounds playing at a comfortable level in the background. This will reduce the intrusiveness of the tinnitus - this is especially helpful at night, whilst trying to sleep

      If you need more support, you can always email the BTA on info@tinnitus.org.uk and we'll do our best to help.
       

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    30. Nic

      Nic Member BTA

      I'm glad you've found this discussion valuable. We always try to be honest and upfront in all our dealings - our only "agenda" as such is making sure we get the best for the tinnitus community.

      I'm sure Steve and Markku are going to get the ATA on board at some point - but basically this Q&A has come from some email and face to face conversations we've have had over the last couple of months, and we just thought "let's do it!" Sorry, no great conspiracy theory about this one! :)
       
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