Stop Giving Money to the British Tinnitus Association

Discussion in 'Awareness & Fundraising' started by Gl0w0ut, Apr 10, 2019.

    1. Hazel
      Dreaming

      Hazel Director Staff Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      @david c @Agrajag364

      Thanks for bringing this to my attention! I just registered Tinnitus Hub as a NICE stakeholder, but it takes up to 28 days to get approved, so let's see, I'll keep you posted.

      I think the feedback window doesn't start until end of September, so we have time. Of course, if we are successfully registered, we'll make it a bottom-up exercise.
       
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    2. annV
      Fine

      annV Member

      Tinnitus Since:
      2005
      Cause of Tinnitus:
      unknown - possibly hereditary
      Chloe Woolmer
      Masters by Research in Psychology Student
      Leeds Trinity University

      chloe-woolmer.png
       

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    3. DaveFromChicago

      DaveFromChicago Member

      Tinnitus Since:
      01/2014
      Cause of Tinnitus:
      Headcold/Flu
      I find it utterly unconscionable that all of these seemingly impressive, academically dressed-up TRT/CBT/Mindfulness clinical studies are actually no more legitimate or efficacious than the sheer quackery espoused by Julian Cowan Hill.
      Nor do they result in any new findings that have not already been advocated to an impossibly wearying degree.
       
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    4. Agrajag364

      Agrajag364 Member Benefactor

      Tinnitus Since:
      09/2017
      Cause of Tinnitus:
      Unknown
      Of interest http://www.pulsetoday.co.uk/news/cl...ice-have-financial-interests/20038106.article
      @Hazel @Markku @david c

      "Most patient groups contributing to NICE 'have financial interests'

      Nearly three quarters of patient organisations that contribute to NICE decisions have taken funding from manufacturers of a relevant product, a new study has claimed.

      Researchers looked at the financial interests of patient groups who contributed to NICE decisions and found 72% took funding from manufacturers of a relevant product in the same year or year before they contributed to a NICE appraisal.

      The research team called on NICE to ‘review its disclosure policy’, after it found the body was ‘aware of less than a quarter’ of the potential conflicts.

      NICE said it had already decided to review this policy, but will consider the new research as part of this."


      ...that's why it's so great when patient groups who aren't getting paid by anyone manage to get a voice with NICE guidelines.
       
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    5. Ken219
      Frustrated

      Ken219 Member

      Location:
      New York Area
      Tinnitus Since:
      Summer of 1990
      Cause of Tinnitus:
      Noise exposure?
      'Tinnitus Associations' were good when there was no internet. I have had tinnitus for 30 years and what I read today is what I read 30 years ago. Now I believe the 'Tinnitus Associations' are $elf $erving.
       
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    6. Ken219
      Frustrated

      Ken219 Member

      Location:
      New York Area
      Tinnitus Since:
      Summer of 1990
      Cause of Tinnitus:
      Noise exposure?
      They are self $erving now. But the newbies need hope.
       
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    7. JohnAdams
      Greedy

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      Not Tinnitus Hub, they are running this site as a service to the community. Give them your money if anyone.
       
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    8. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      As much as I detest the past actions of the ATA we do need some representation on some level from them.
      But, I will not be donating to the ATA ever again.

      The BTA was represented here by @David for a while on Tinnitus Talk. But he hasn't been around anymore.
      Probably busy with other things. But it was very good to have him here and speaking openly without any blah blah blah no true stance on issues.

      I think from my experiences here on Tinnitus Talk and my past experiences with the ATA that I am inclined to support the BTA because of @David.
       
    9. david c

      david c Member

      Tinnitus Since:
      01/2012
      So a quick update on NICE's work on the tinnitus pathway. In the UK NICE is currently working on a tinnitus "pathway" for all tinnitus patients. This is really important as it will decide the future of tinnitus treatments in the UK for at least the next decade. (It may also be used as prototype by other healthcare systems so it does also have international implications).

      A consultation on this pathway is starting in September. Although you can make comments individually, NICE has no obligation to respond to them, so the best way of trying to have some influence on the outcome is to do so through a stakeholder. It's fantastic that @Hazel and @Markku have registered an application for Tinnitus Hub to be a stakeholder - but we will not yet find out the results of that application for another 28 days. BTA and AoHL are both registered as stakeholders, but there is little evidence that they made any effort to find out the views of the wider tinnitus community in the previous consultation on the scope of the pathway. A full list of the current stakeholders is here:

      https://www.nice.org.uk/guidance/gid-ng10077/documents/stakeholder-list

      If you are a UK-based member of Tinnitus Talk, one other way of having your say would be to ask your local healthwatch organisation if they can register as a stakeholder. It's quite easy to find out your local healthwatch - you can use this page:

      https://www.healthwatch.co.uk/your-local-healthwatch/list

      Email your local healthwatch and ask them to register as a stakeholder for NICE's consultation on the Tinnitus pathway. NICE's register as a stakeholder page is below so you can include that in your email:

      https://www.nice.org.uk/get-involved/stakeholder-registration
       
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    10. Markku
      Inspired

      Markku Founder Staff Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      We are now a registered stakeholder!

      nice-tinnitus-hub-stakeholder-registration.png

      nice-tinnitus-assessment-management-feedback-window.png
       
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    11. Hazel
      Dreaming

      Hazel Director Staff Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      Good news indeed! As you can see in the schedule, the feedback window is from 20 Sep - 1 Nov.

      We'd like to form a feedback committee that can spend some serious time to review documentation and compile our feedback. Please let us know if you want to be part of the committee. Our only hard requirements are that you should be living in the UK, and that you can make yourself available for at least 10 hours per week during the abovementioned window of time.

      We'll be starting a separate thread for this soon.
       
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    12. David

      David Member Benefactor BTA

      Location:
      Sheffield, UK
      Hello,

      A response to some of the main themes in here. Written in haste in between a million and one other things, as ever, so apologies for any typos.

      UCLH / Mindfulness Research

      It feels this has been discussed ad-infinitum on here, so not sure there’s anything else I can helpfully add to on this.

      Leeds Trinity Research / impact of Mindfulness on tinnitus distress (the study the BTA recently put a recruitment advert out for)

      - This was research supported in 2015

      - The BTA awarded £388 to ensure tinnitus support groups were included in the research and also for dissemination of the findings

      - The BTA will advertise recruitment calls for any research project that has the appropriate ethical consent


      NICE Tinnitus Guidelines

      - Delighted to hear Tinnitus Hub has now registered as a Stakeholder! I’ve been lobbying for this to happen since the original stakeholder consultation was launched. I also highlighted the opportunity to join the committee as a lay member to @Steve, who was a Director of Tinnitus Hub at the time. Unfortunately he didn’t feel he had the time to commit to it. Having Tinnitus Hub involved will add real value.

      - The BTA will also submit a response to the consultation, I will not be involved in that in any way, as I sit on the committee.

      - The BTA and I have been transparent in the commercial income the BTA receives and this was disclosed during the recruitment stage, namely that the BTA; has corporate members, accepts sponsorship of its events and provides paid for exhibition space at events.

      - I cannot comment directly beyond the above on the process and what is discussed, as I have signed a Confidentiality Agreement, which was a pre-requisite to being on the committee.

      - If you want to know what a NICE guideline looks like and prepare yourself for comments, the hearing loss guideline might be worth having a look at; https://www.nice.org.uk/guidance/ng98

      - I really do hope as many of you as possible get involved and submit amendments and improvements to the guideline.

      BTA (Future) Research Funding

      Plans to have more dissemination of this in June and discussion of it will also form part of the Expo programme.



      Let me also say thank you to those expressing support of what the BTA are doing/trying to do. I realise when I jump in here it is often to respond to the criticism but I do value those that support what we’re looking to achieve – thank you.
       
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    13. Hazel
      Dreaming

      Hazel Director Staff Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      @David, thanks for taking the time out of your busy schedule to respond and interact here directly. I think as always, the vast majority of members really do appreciate your willingness to engage!

      Good point, and thanks for acknowledging that :)
       
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    14. david c

      david c Member

      Tinnitus Since:
      01/2012
      Thanks @David for welcoming Tinnitus Hub as a stakeholder on the NICE consultation for tinnitus guidelines in the UK. It's a hugely important process as a it is likely to determine the provision and type of tinnitus treatment in the UK for at least the next decade.

      The BTA is also involved as a stakeholder - and gave feedback on the first consultation for the scope of the guideline which has now closed. What's really strange though @David is that I haven't been able to find any evidence that you tried to get any feedback at all from the tinnitus community in the UK for the first consultation. No evidence that I can locate on your website or on your social media. I'm not even sure whether you even consulted your own membership about it.

      It's almost as if you'd have preferred tinnitus sufferers in the UK not to know anything about the important consultation that was taking place!

      Of course @David if you did consult tinnitus sufferers in the first consultation just let us know when, where and how you did so. Maybe in the next consultation the BTA might want to involve tinnitus sufferers in the UK?! Might want to let them know what was happening on your website and social media?

      Thank goodness anyway that Tinnitus Hub is involved in the next consultation - so the voice of tinnitus sufferers in the UK can be heard.
       
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    15. Watasha
      No Mood

      Watasha Member Benefactor

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      Unknown
      @david c I could be wrong here and not understand the full context, but don't you think that @David has quite a lot of experience weekly if not daily with sufferers given the nature of his job? I am not saying that it's not a good idea to advocate for more and more transparency (the more involvement with patient community the merrier), but I also don't think it's fair to assume that @David is throwing darts at a dartboard with a blindfold on either.
       
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    16. JohnAdams
      Greedy

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      Yay! Mindfulness.

      Here's my mindfulness study:

      Mindfulness is a misnomer that describes the mental ability of not let things that should bother you from doing so. People that can use this mental technique effectively are the same kind of people that would see a baby crying alone in the middle of the street and not even register it mentally. It's called being a brain dead sheep that can't be bothered to realize something is wrong.

      Here is a prime example of mindfulness-
      The Poop Lady - Hoarders


      So while some people have very low tinnitus and can ignore it and others are walking dead brain deads, the rest of tinnitus sufferers actually realize that they are severely disabled, and have other symptom clusters like visual snow, floaters, and hyperacusis. Therefore the BTA has no business taking money from people and shoveling it ONCE AGAIN to studies into mindfulness. I'm calling shenanigans on their desire to find a cure.
       
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    17. Watasha
      No Mood

      Watasha Member Benefactor

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      Unknown
      @JohnAdams My understanding of mindfulness and meditation is that it actually increases empathy while strengthening the prefrontal cortex and weakening the connections with limbic structures. This would seem to make the person more likely to help the baby crying alone in the street and also to probably not fear the consequences of taking action.
       
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    18. david c

      david c Member

      Tinnitus Since:
      01/2012
      The key thing we need to understand about the BTA is that it regards its job as representing professionals who earn a living from tinnitus (one way or another), which is why it has always been less than keen on research for a cure.

      An organisation that genuinely represented tinnitus sufferers in the UK would have reached out and got feedback from them in the key first stage of the NICE consultation that decided the scope of the tinnitus guideline (eg deciding what treatments it would include). The BTA made absolutely no attempt to do so. I would challenge @David and the BTA to involve tinnitus sufferers in the next consultation.

      The BTA Expo is being held around the time of the start of the consultation. An organisation which really sought to represent tinnitus sufferers would be using the Expo to promote awareness of the guideline and organise feedback from the tinnitus patients attending. Instead of course they are more interested in helping the various audiology companies and mindfulness therapists expand their client base.
       
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    19. david c

      david c Member

      Tinnitus Since:
      01/2012
      Since I wrote my previous posts new evidence has now come to light of the BTA deliberately withholding information from tinnitus sufferers about NICE's UK consultation on a new tinnitus guideline - and deliberately keeping tinnitus sufferers in the dark about opportunities to give feedback and influence the tinnitus consultation.

      NICE have confirmed to me in an email that they wrote to the British Tinnitus Association asking them to promote awareness on their social media of the positions for lay members of NICE's tinnitus committee. These lay members positions would be open to all tinnitus sufferers and would play a major role in determining the new tinnitus guideline.

      NICE have confirmed to me that they wrote to the BTA asking them to promote awareness of these lay members positions on the BTA's social media. They have even told me the date they wrote to the BTA: 23 November 2017. But the BTA decided not to promote awareness of these positions on their social media. Instead they preferred to keep tinnitus sufferers in the dark about these positions and the opportunity to influence NICE's tinnitus guideline. Hardly anybody applied for these positions in the end - hardly surprising as hardly anybody knew about them.

      Shame on you @David for keeping tinnitus sufferers in the dark about these lay member positions. But full right of reply of course: If you think you did promote awareness of these positions on your social media - Facebook and Twitter - simply provide the link (or date) to your posts.
       
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    20. ajc

      ajc Member

      Tinnitus Since:
      11/2002; spike 2009; worse 2017-18
      Cause of Tinnitus:
      Loud music - noise damage
      That's unacceptable if they didn't promote the opportunity. WHAT THE H***
       
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    21. Watasha
      No Mood

      Watasha Member Benefactor

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      Unknown
      @david c Can you confirm that @David specifically received these e-mails? I certainly would like to know the response too, and I also really appreciate all the work you do, but this message is highly accusatory and could have inquired of @David in a much softer way. It's almost as if the goal was to prove a point rather than seek answers imo, but then again, that is the drawback of text communication.
       
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    22. GSC
      Wishful

      GSC Member Hall of Fame

      Tinnitus Since:
      02/2019
      Cause of Tinnitus:
      Acoustic trauma.
      Oooooh.
       
    23. Hazel
      Dreaming

      Hazel Director Staff Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      FYI, here's the thread where people can signal their interest in being part of the NICE consultations on behalf of Tinnitus Hub.
       
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    24. david c

      david c Member

      Tinnitus Since:
      01/2012
      As I understand it from my communication from a senior official with NICE the email went to the head of the BTA - i.e. @David. And yes I am "accusing" him and the BTA of keeping both their members and the wider tinnitus community in the dark about both the recruitment of lay members and the first stage of the consultation to decide the "scope" of the tinnitus guideline. But full right of reply - here are some straightforward questions for @David to answer if he wishes:

      1. Did you - as requested by NICE - use your social media to raise awareness of the lay member positions? (if so please direct us to the relevant posts)
      2. Did you use your social media to consult tinnitus sufferers during the first stage of the NICE consultation - for the scope of the guideline (if so where are the posts?)
      3. Did you even consult your members - if so how and when?

      It's important to note that while ignoring the tinnitus community, the BTA were doing everything possible to advance the interests of some of its advisory members who financially profit in private practice from offering CBT and mindfulness - even trying to get NICE to bend its own rules about conflicts of interests to get them onto the tinnitus advisory committee.
       
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    25. David

      David Member Benefactor BTA

      Location:
      Sheffield, UK
      Hi,

      I didn’t receive an email from NICE re: the committee positions, I knew about them following the stakeholder consultation meeting. I did raise awareness of the positons with individuals I thought would be good on the committee, such as @Steve here. I didn’t advertise them more widely.

      The initial consultation from receiving the papers to the meeting was a week, I think the consultation was then a month, in December. We took advice from others on how to respond to this who had been through something similar and followed that advice. So we undertook work within the BTA to respond to the consultation, which did include people living with tinnitus. I felt it was important to do this on a small scale to ensure it was something we could complete effectively in the timeframe. I didn’t understand quite how rapid that initial phase would be, nor the time committment. We're taking acton to ensure we have the time to respond to the next consultation more comprehensively, as it looks like @Hazel is also organising here.

      Would I do it differently next time? Yes.

      I wish I could say more but as previously mentioned as a member of the committee I cannot.
       
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    26. Candy

      Candy Member Benefactor Advocate

      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Unidentified
      Just read this thread. I'm glad we have Tinnitus Hub as a stakeholder. This is a patient group run by tinnitus sufferers. Very big step for Tinnitus Hub in shaping NHS pathways. Well done!!

      I have one or two suggestions of course.

      Once a good model is implemented in the UK it will serve as a roadmap for other countries with a similar healthcare model.

      So who is attending the committees?
       
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    27. david c

      david c Member

      Tinnitus Since:
      01/2012
      Maybe you should conduct a review of your procedures @David at the BTA - because a senior official at NICE has confirmed to me that they contacted you on 23 November 2017 to ask for these lay member positions to be publicised by social media - something your organisation decided not to do. I can message you the name of the NICE official if you wish.

      You have also confirmed that in the first stage of the NICE consultation your organisation (BTA) did not consult either tinnitus sufferers or your own members. But you did consult those with commercial interests in providing tinnitus services. That says a lot about the priorities of the BTA.

      You've said that you will do things differently next time but nothing about how. Many of us will remain to be convinced.

      Yes this is really good news as it means that tinnitus sufferers will have a voice.
       
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    28. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      Germany
      Tinnitus Since:
      July/August 2013
      Cause of Tinnitus:
      Noise induced
      "Loudness does not equal distress"
      "The worst reports were of tinnitus measuring 15 dB (rustling leaves)"
      "IT'S NOT THAT BAD"

      Tell me again how CBT, mindfulness and the idea that loudness doesn't matter at all are not harming the tinnitus community. They're even starting to say that loud tinnitus doesn't exist because "the worst reports measured 15 dB (rustling leaves)". So whats the conclusion as to why mindfulness doesn't help everyone? I'm guessing some people just aren't open to the idea that their tinnitus isn't "that bad".

      Bildschirmfoto 2019-06-26 um 14.51.44.png
       
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    29. Ken219
      Frustrated

      Ken219 Member

      Location:
      New York Area
      Tinnitus Since:
      Summer of 1990
      Cause of Tinnitus:
      Noise exposure?
      I get it. Those organisations are self profiting. After all these years they are about self and only self.
       
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    30. Ken219
      Frustrated

      Ken219 Member

      Location:
      New York Area
      Tinnitus Since:
      Summer of 1990
      Cause of Tinnitus:
      Noise exposure?
      CBT got old. CBT will help tinnitus sufferers! Now if you put an 'M' in front of CBT you have a new and improved product! MCBT will help tinnitus sufferers! When all you did was change the letterhead.
       
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