NICE Tinnitus Assessment and Management Guideline — Feedback Committee

Discussion in 'Awareness & Fundraising' started by Hazel, May 1, 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)
      UPDATE on September 20th, 2019:
      A draft of the new NICE guidelines for tinnitus has been published. Tinnitus Talk staff kindly requests you to read and become familiar with the guideline. Afterwards, please submit your feedback and comments on the guidelines in this thread. In your message, please specify if you're from the UK.

      ➡️ Read the draft of the NICE Guidelines

      ----------------------------

      Dear all,

      Recently, Tinnitus Hub - the managing entity of this forum - registered as an official stakeholder with the UK health authority NICE (National Institute for Health and Care Excellence).

      NICE develops healthcare guidelines and recommendations in the UK, based on which the public healthcare provider NHS decides what to cover or not. Currently, NICE is developing new guidelines for tinnitus, or more specifically "Tinnitus: assessment and management."

      Now that we're registered as a stakeholder, we are allowed to give feedback on the draft tinnitus guidelines. We want this to be a bottom-up exercise, and thus allow anyone intested to take part. But of course, we have to do this in a structured manner, hence we will be forming a dedicated Feedback Committee.

      Requirement to be on the committee is that you can make yourself available for at least 10 hours per week during the months of September and October (the feedback window). Beware that the actual time commitment could end up being much higher, it's hard to predict!

      Knowledge of the UK healthcare system is a plus, but not required.

      If you are interested, please leave a response below, and we'll be in touch.

      Some useful background information:

      Finally, here's my view on our timelines for this project:
      1. Until end of June - post relevant updates on this thread, and allow people to volunteer for the committee.
      2. July - Compose the final committee, i.e. about 3-5 people who fit the criteria above. If there are many more applicants we will try to find a way for everyone interested to be involved. We will also need to elect a committee chair, who is responsible for leading meetings, defining the feedback process, and compiling the feedback into a final document.
      3. August/September - The committee starts preparing.
      4. End of September until early December - The feedback period; this will be most intense, and we need to make sure all committee members are truly dedicated to spending enough time.
       
      • Winner Winner x 5
      • Like Like x 3
    2. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      This is a really big deal thing!!

      Can you guys use those of us in the United States for feedback to those who are on committees?

      Thanks for explaining this NICE organization so well. I was a bit confused what it actually meant.
      :huganimation:
       
      • Like Like x 1
      • Hug Hug x 1
    3. AUTHOR
      AUTHOR
      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)
      Hey all! Not many takers so far... Come on UK members, this is a unique opportunity to be directly involved in shaping tinnitus policy!
       
      • Agree Agree x 4
      • Like Like x 2
      • Genius Genius x 1
    4. Candy

      Candy Member Benefactor Advocate

      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Unidentified
      @david c What’s happening with the NICE guidelines and Tinnitus Talk input - I have a few “tips” on how they could make the pathway more humane. My last few weeks you couldn’t make up.
       
      • Like Like x 3
      • Agree Agree x 1
    5. AUTHOR
      AUTHOR
      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)
      Thanks for pitching in here @Candy! Curious to hear your ideas, we can discuss them over PM if you like.

      In the meantime, this project hasn't moved much. We need a few more people to form the committee!
       
      • Like Like x 1
      • Agree Agree x 1
      • Winner Winner x 1
    6. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Ditto for me, is there anything those of us in the US can do to help?

      I soooooooooo hope this is happening. I was away from Tinnitus Talk for awhile and when I read @Hazel's weekly updates, I didn't see any mention of NICE.

      :( Tuxedo
       
      • Agree Agree x 1
      • Helpful Helpful x 1
      • Winner Winner x 1
    7. AUTHOR
      AUTHOR
      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)
      I think we'll get it together @TuxedoCat!

      We now have two UK members, and ideally would like a few more. If we can't get enough UK members for the committee, we would definitely consider getting someone like you on board.

      I'll give a more extensive update soon!
       
      • Winner Winner x 3
      • Like Like x 1
    8. Markku
      Inspired

      Markku Founder Staff Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      I think transparency is key with this initiative as well, so I foresee there being a public update and discussion here on the forums before the feedback is due to be submitted to NICE, with ample time to make changes based on the discussion.

      While this is UK-specific, and with the health systems being different between, say, the US and UK, I believe many of our US members could have valuable feedback to pass along.
       
      • Agree Agree x 2
      • Winner Winner x 2
      • Like Like x 1
    9. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Thanks for the update @Markku and @Hazel. Got myself a little nervous there. :)
       
      • Agree Agree x 1
      • Hug Hug x 1
      • Friendly Friendly x 1
    10. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      Germany
      Tinnitus Since:
      July/August 2013
      Cause of Tinnitus:
      Noise induced
      The BTA posted on Twitter that you can comment on the guidelines for the assessment and management of tinnitus developed by NICE at the Tinnitus Expo.

      From the BTA homepage:
      NICE Guidelines Consultation
      • The National Institute for Health and Care Excellence (NICE) have developed guidelines for the assessment and management of tinnitus. You can read about the process here.
      • There is a consultation period where stakeholders can respond to the guidelines, the British Tinnitus Association is able to feedback on the guidelines and there will be opportunity at the Expo for the tinnitus community to give their comments on the guidelines.
      • There will be a stall at the Expo in the upper level of the exhibitor area where you can submit your feedback (this will not be the only opportunity for people to pass comment to the BTA on this).
       
      • Like Like x 3
    11. david c

      david c Member

      Tinnitus Since:
      01/2012
      This is an important development. But I think it's fair to say that it hasn't come about without a lot of pressure being put on the BTA. Earlier BTA webpages about the Tinnitus Expo had contained no reference at all to the NICE consultation. And the BTA had failed to consult any of its members in the first stage of the NICE consultation (scoping).

      So what changed? Firstly, I challenged @David via Tinnitus Talk about the BTA's lack of involvement of their members in the NICE consultation. Secondly I and friends of mine personally wrote to those in the BTA responsible for organising the Tinnitus Expo to ask why the NICE consultation did not feature in their plans. This pressure has at last led to a positive result.

      For Tinnitus Talk members, we would love to get your feedback on the NICE tinnitus guideline via Tinnitus Talk which is a stakeholder, and information will be given about how to do this when the consultation starts in September. But for UK Tinnitus Talk members, feel free to give your feedback to the BTA also. As tinnitus sufferers you are not restricted in the number of stakeholders to which you can provide feedback.
       
      • Like Like x 3
      • Agree Agree x 1
      • Optimistic Optimistic x 1
    12. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      NICE work, you guys! (Pun intended, sorry I couldn't resist.)
       
      • Like Like x 1
    13. brokenskeptic

      brokenskeptic Member

      Tinnitus Since:
      4
      Cause of Tinnitus:
      Post viral infection
      I came to this very late but if there is still too big a load and there are any docs I can help with, I'm happy to do so.
       
      • Like Like x 2
    14. Candy

      Candy Member Benefactor Advocate

      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Unidentified
      Yes, that would be great!

      Please follow the links on @Hazel's previous post and you'll be able to read the relevant papers on NICE's website. There’s a 98 page one which I’m happy to go through but the rest are shorter and it would be useful to get some feedback. You probably don't need to go through all the Minutes.
       
    15. Sevv

      Sevv Member Benefactor

      Tinnitus Since:
      14.04.2019
      Cause of Tinnitus:
      Loud concert
      I'm currently trying to write a summary about current and upcoming tinnitus treatments (mostly upcoming treatments). It's far from finished, but could you use that for a guideline? I eventually plan to send it to the Swiss tinnitus league so that our doctors at least have a clue about research (I guess at best 1% of ENTs have heard of Lenire)...
       
      • Like Like x 1
    16. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      @Candy, @Hazel

      OK Guys, I'm trying to get on the same page with everyone.

      From Hazel's first post, I've printed off the following
      • How We Develop NICE Guidelines
      • NICE guideline - Hearing loss in adults: assessment and management
      • National Institute for Health Care Excellence - Guideline Scope, Tinnitus: assessment and management
      Are there any other documents I should have?

      From How We Develop NICE Guidelines, it appears that the development of the tinnitus guideline is at Step 2 Scope Produced and I should now read more about stakeholders and guideline developers on the NICE website.

      Question - Are we, the Stakeholders, to now provide comment on the Scope document or something else or in addition?

      Someone please let me know if I am in the right place and on the right track here.

      Many Thanks. TC
       
    17. Candy

      Candy Member Benefactor Advocate

      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Unidentified
      On the scope document - I’m reading the 94 page one in which other stakeholders are giving their opinions too - some is good, some I don’t agree with...
       
      • Informative Informative x 2
    18. Julie English

      Julie English Member

      Tinnitus Since:
      01/2017
      Cause of Tinnitus:
      Unknown
      Hi Hazel,

      I can help with the Functional Committee if it’s not too late.

      Julie
       
      • Like Like x 3
    19. AUTHOR
      AUTHOR
      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)
      Awesome, will send you a PM!
       
    20. Paul Myles

      Paul Myles Member

      Tinnitus Since:
      09/2016
      Cause of Tinnitus:
      Unknown
      Hi Hazel

      Can I join the committee?

      Paul Myles
       
      • Like Like x 2
    21. AUTHOR
      AUTHOR
      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)
      Thanks for volunteering, we will PM you shortly!
       
    22. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      Germany
      Tinnitus Since:
      July/August 2013
      Cause of Tinnitus:
      Noise induced
      Posting this here to bump the thread. :)

      NICE calls for further research on management options for tinnitus
      Higher quality evidence would allow NICE to make recommendations on a range of therapies that could help people with tinnitus.

      NICE’s new draft guideline covers the assessment and management of tinnitus, which refers to the sensation of noises in the ears or head that do not come from an outside source.

      Tinnitus is sometimes associated with problems with concentrating, listening or sleeping and for some people it can have a significant impact on their mental wellbeing. To address these symptoms, the draft guideline advises healthcare professionals to develop a management plan with the patient to explore different approaches that may help.

      For example, psychological therapies, such as cognitive behavioural therapy (CBT), are recommended for people with tinnitus that causes them distress. For people with tinnitus-related hearing loss, hearing aids are recommended.

      The committee was unable to recommend the use of neuromodulation therapies to control the symptoms of tinnitus, as there was not enough evidence that showed how well they work. These devices aim to reduce symptoms by applying electrical, acoustic and/or magnetic energy to the head or neck. Instead, neuromodulation therapies have formed one of the committee’s key recommendations for further research.

      Dr Paul Chrisp, director of the Centre for Guidelines at NICE, said: “The type and severity of tinnitus varies from person to person, and there is no single approach that works for everyone. Further research on treatments such as neuromodulation would allow us to make recommendations on a greater range of options that could potentially benefit people with tinnitus.”

      Other recommendations for research include gathering evidence on the combined use of tinnitus support with sound therapy, which aims to use different sounds to reduce tinnitus awareness, and the clinical and cost effectiveness of psychological therapies for children and young people.
       
      • Like Like x 2
    23. JohnAdams
      Greedy

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      So they just want to figure out how to better offer management strategies? A range of therapies? What therapies?
       
      • Good Question Good Question x 2
    24. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Thank you for posting this, Autumnly!

      Tinnitus Hub is a stakeholder and has a newly formed Feedback Committee that will review and coordinate the Hub's response to the draft guideline that is now available for consultation. The Committee will be meeting via Skype on 29 September.

      In the meantime, everyone is encouraged to read and become familiar with the guideline and to post comments here if you wish. If you are a citizen of the UK, please mention that in the post.

      Many thanks, TC
       
      • Informative Informative x 2
    25. ChrisBoyMonkey

      ChrisBoyMonkey Member Podcast Patron

      Location:
      CA
      Tinnitus Since:
      04/2019
      Cause of Tinnitus:
      U.S. Army/Field Artillery Veteran
      In research the very first thing was CBT. That's where I'd start with change. I saw neuromodulation around number 5. At this time, if they are prioritized in anyway, that should be number 1 for research. And if the research shows devices like Lenire works, it should also be number 1 for treatment.
       
      • Agree Agree x 3
    26. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      Germany
      Tinnitus Since:
      July/August 2013
      Cause of Tinnitus:
      Noise induced
      Not from the UK.

      Page 3 / 1.1.2:
      "rarely associated with an underlying physical or mental health problem“ - Do they mean things like tumors when talking about "physical health problem“? Then I’d agree with this statement but I think the connection with hearing loss should be explained (though they talk about what causes it in 1.1.3)

      Page 4 / 1.2.1:
      People with acute tinnitus should be listed here as well (to be seen within a maximum of 24-48 hours) because early interventions such as steroid injections could still help.

      Page 7 / 1.3.3:
      Other tests/procedures to avoid could be: Tympanometry, Electrocoleography, Caloric Test, Syringing Ear Wax Removal, Microsuction, cVEMP/VEMP

      Page 8 / 1.3.5:
      They wrote "offer MRI to people with non-pulsatile tinnitus“ but we know MRIs can temporarily and permanently spike tinnitus and hyperacusis. Patients should be educated about those risks and recommended proper hearing protection.

      Page 11:
      Their definition of tinnitus-related distress seems to lack something… Tinnitus distress for me can also include functional disruption (not being able to concentrate, memory issues, etc).

      Page 11,12 / Research recommendations:
      Can they focus more on medical treatments instead of CBT, relaxation techniques and sound therapy? Do they also mean bimodal neuromodulation when talking about neuromodulation or are they talking about things like notched music therapy? I know they just want to be able to offer people something but the main focus should be on finding medical treatments.

      There’s really not much to say, we just don’t have medical treatments for tinnitus (except for Lenire) and it seems like NICE is simply trying to offer patients something so the main focus is on CBT and relaxation techniques.
       
      • Agree Agree x 3
      • Winner Winner x 3
      • Informative Informative x 2
    27. AUTHOR
      AUTHOR
      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)
      Hi all,

      Tinnitus Hub's NICE Feedback Committee has compiled our feedback to NICE's draft guidelines for tinnitus care, on behalf of the entire Tinnitus Talk community, i.e. all of you guys!

      Since we want our feedback to be as representative of the community as possible, we ask that you take a look at what we compiled, and tell us whether you agree or not, and of course if you have anything to add. We are particularly interested in what our UK members think, but we'll take feedback from anyone into consideration. Please provide your feedback by 27 October.

      Attached are three documents to look at — and for those who want the complete picture, there's loads more background documents on NICE's project website.
      1. NICE's draft Guideline for Tinnitus Assessment and Management (please note that Tinnitus Hub was not involved in drawing these up) — This is what they are proposing in the UK henceforth as the central guide to tinnitus healthcare.
      2. A summary of the abovementioned guideline, so that you don't have to read the whole thing!
      3. The feedback we are proposing to send to NICE on behalf of this community on how the guideline should be improved.
      Our Key Take-Aways from the Guidelines:
      • The guidelines seem to be fairly comprehensive and our main take-home has been that while NICE was compiling them they struggled with lack of conclusive evidence for many aspects of their recommendations.
      • We have highlighted that medical treatments to reduce the perception of tinnitus represent a significant unmet need and should be prioritised.
      • We have made comments where we saw gaps and have highlighted the difficulty in accessing psychological therapies and the right type of psychological therapy to deal with some of the tinnitus co-morbidities such as anxiety, depression and insomnia.

      The driving force behind putting together the above documentation were @TuxedoCat as project manager, and @Candy as content expert — thanks ladies! Several other UK-based members gave their input as well, and @Markku and I are the final reviewers.
       

      Attached Files:

      • Like Like x 3
      • Winner Winner x 2
    28. AUTHOR
      AUTHOR
      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)
      Bumping this threaaaaadddd :rockingbanana:

      I know it's a bit of effort reading those documents, but guys this is a real opportunity to influence real policy that directly affects how tinnitus patients in the UK are treated!
       
      • Like Like x 2
      • Winner Winner x 1
    29. Mister Muso
      Busy

      Mister Muso Member

      Location:
      Scotland
      Tinnitus Since:
      2007 / April 2019
      Cause of Tinnitus:
      Loud music
      Hi

      Will read on laptop in lunch break and give feedback.

      Quick question - is hyperactive mentioned at all in the guidelines? I think the percentage of tinnitus sufferers with hyperacusis is quite high, and for many of us it is the bigger concern.

      Thanks.
       
      • Good Question Good Question x 1
      • Winner Winner x 1
    30. another sean
      Studious

      another sean Member Benefactor

      Location:
      Los Angeles
      Tinnitus Since:
      2015
      Cause of Tinnitus:
      Long duration of low audio
      For comment #3, It's my understanding that lack of sleep increases tinnitus not because the brain hasn't reset, but because lack of sleep causes inflammation throughout the body which affects tinnitus volume.

      Also for comment #3, is that a typo in the last line "memberso" ?

      One additional recommendation to help with care is that for those who have debilitating tinnitus be considered for review for a automobile Blue Badge for disabled parking so that they can be close to entrances and be exposed to the least amount of noise exposure as they would be at risk for further trauma in parking lots. This is what my ENT did for me and it allowed me to go to more locations I couldn't go to before including certain doctors offices.
       
      • Like Like x 3
      • Informative Informative x 1

Share This Page

Loading...