Stop Giving Money to the British Tinnitus Association

[Hazel]

We'll absolutely strive to do so. I hope to be able to provide an update on this soon. When looking at the current list of stakeholders, there are a number of names that are concerning to me, and I cannot help but wonder what some of their intentions might be... i.e. is patient benefit genuinely their goal, or is it just trying to make another buck by any means necessary (well, you already covered that in your post).

@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.

 

[annV]

Who is doing the study? One of their cronies?
Can any sleuths dig that one out?

Chloe Woolmer
Masters by Research in Psychology Student
Leeds Trinity University

 

[DaveFromChicago]

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.

 

[Agrajag364]

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.

 

[Ken219]

'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.

 

[Ken219]

Once again the British Tinnitus Association has announced on their Facebook page yet another BTA funded research program into... wait for it...

Fucking MINDFULNESS! Again!

Waste of f*%kin space!

They are self $erving now. But the newbies need hope.

 

[JohnAdams]

'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 self $erving.

Not Tinnitus Hub, they are running this site as a service to the community. Give them your money if anyone.

 

[Starthrower]

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.

 

[david c]

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

 

[Markku]

We are now a registered stakeholder!

 

[Hazel]

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.

 

[David]

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.

 

[Hazel]

@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!

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.

Good point, and thanks for acknowledging that

 

[david c]

Hello,

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.

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.

 

[Watasha]

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.

@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.

 

[JohnAdams]

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-


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.

 

[Watasha]

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-


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.

@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.

 

[david c]

@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.

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.

 

[Hazel]

FYI, here's the thread where people can signal their interest in being part of the NICE consultations on behalf of Tinnitus Hub.

 

[Candy]

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?

 

[Autumnly]

Not the best message to send out, in my opinion. ENTs should be more mindful of what they say to tinnitus patients but for many people with tinnitus, there really isn't anything that helps.

 

[Agrajag364]

Not the best message to send out, in my opinion. ENTs should be more mindful of what they say to tinnitus patients but for many people with tinnitus, there really isn't anything that helps.

View attachment 31140

Yeah it's like have I missed something? Or do they just mean a crappy sound machine and maybe some hearing aids.