UK House of Commons Roundtable on Tinnitus

Discussion in 'Awareness & Fundraising' started by Hazel, Jan 17, 2020.

    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)
      Organised by the British Tinnitus Association (BTA) together with Sir John Hayes, member of the UK parliament, this event brought together tinnitus patients, researchers, policy makers and members of parliament. The aim of the event was to lobby the UK government and get more allocated funding for tinnitus research in the UK. A worthy cause, which is why we were delighted to be invited to attend this roundtable event at the House of Commons.

      roundtable-house-of-commons-announcement-bta.png

      Sir John Hayes, who suffers from tinnitus himself, kicked off the event by explaining that he had been able to discuss the roundtable with the Minister of Health and asked him to put tinnitus on the agenda. The Minister agreed and follow-up discussions were planned. Therefore, the event seems to have already set some wheels in motions at the highest level of the UK government.

      Our representative at the event was Megan Gill. She has volunteered for us in the past and is a great spokesperson, with a knack for networking and public speaking. She made clear how deeply tinnitus can impact quality of life and how it can be completely debilitating for some.

      roundtable-house-of-commons-megan-gill.png


      Megan took part in one of two parallel roundtable discussions, where the following topics were raised:
      • How can we help patients?
      • What is the current state of tinnitus research?
      • What is the nature of a cure?
      • The importance of research into sub-typing of tinnitus;
      • The obstacles posed by the lack of an objective test/measure for tinnitus;
      • The need for a national tinnitus database;
      • To what extent does the research community collaborate?
      • Where should the money be spent should the government provide more funding?
      • How can you rally up more interest in the UK around tinnitus research?

      roundtable-house-of-commons-will-sedley.png

      The recommendations made by this roundtable group (one of two) were:
      • Create a national tinnitus registry;
      • Focus research on identifying biomarkers for tinnitus;
      • Raise awareness on the distress tinnitus causes for people;
      • Promote prevention measures;
      • More strict decibel restrictions in the UK.

      Our former director @Steve was present at the event as well and sat at the other roundtable. We’ve asked him to report on his experiences here.

      The plan moving forward is that the BTA will combine the recommendations from both tables to lobby government ministers with.


      Annex: List of Attendees (in alphabetical order)
      • Samantha Baines, writer, comedian and actress who experiences tinnitus
      • Sue Falkingham, Past President, the British Academy of Audiology
      • Dr Clara Fons, Programme Manager for Neurodegeneration and Sensory Science, the Medical Research Council
      • Megan Gill, Tinnitus Hub, experiences tinnitus
      • Lynne Gillon, Chair of the British Tinnitus Association
      • Lilian Greenwood, MP for Nottingham South, Patron at The Ear Foundation and member of the APPG on Deafness
      • Caroline Hamilton, Clinical Director, Neuromod Devices
      • Steve Harrison, experiences tinnitus
      • Louise Hatch, experiences tinnitus
      • Sir John Hayes, MP for South Holland and the Deepings who experiences tinnitus
      • Dr Derek Hoare, Associate Professor in Hearing Sciences and Research Lead for Tinnitus and Hyperacusis, NIHR Nottingham Biomedical Research Centre
      • Dr Ralph Holme, Head of Biomedical Research, Action on Hearing Loss
      • Tony Kay, President of the British Tinnitus Association
      • Professor B Nirmal Kumar, President of ENT UK
      • Dr Charles H. Large, CEO, Autifony Therapeutics
      • Anne Savage, DJ and producer who experiences tinnitus
      • Dr Roland Schaette, Reader in Computational Auditory Neuroscience, The Ear Institute, University College London
      • Dr Will Sedley, Researcher specialising in tinnitus, Newcastle University's Institute of Neuroscience
      • Tommy Sheppard, MP for Edinburgh East and member of the APPG on Deafness
      • Carly Sygrove, creator of the award-winning blog 'My Hearing Loss Story', who experiences tinnitus
      • Professor Karen Steel, Professor of Sensory Function, Wolfson Foundation
      • Rosemarie Tully, Chief Business Officer, Neuromod Devices
       
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    2. Jack Straw
      Balanced

      Jack Straw Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Location:
      US
      Tinnitus Since:
      1990s
      Cause of Tinnitus:
      Infection, Acoustic Trauma
      Very happy to see an event like this take place and to have two members of Tinnitus Hub attend.

      I hope this will push for change in how tinnitus is viewed and make its way over the pond to the US.

      Fantastic job everyone!
       
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    3. TuxedoCat
      No Mood

      TuxedoCat Member Podcast Patron Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      And biomarkers is it?
       
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    4. 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)
      Yes, I believe the suggestion was to focus research efforts on that.

      For those unaware, we're talking about any substance found in blood or the human body that would provide an objective indication of the presence of tinnitus. Supposedly, the absence of such an objective measure is one of the reasons pharma companies are hesitant to invest in tinnitus, though I don't know the ins and outs of that.
       
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    5. Nonomat
      Wishful

      Nonomat Member Benefactor

      Location:
      France
      Tinnitus Since:
      06/2019 (mild) - 11/2019 (intrusive)
      Cause of Tinnitus:
      Noise induced
      That's totally it yes. Just to add a little more for everyone: for measuring tinnitus, only THI and MML exist. Both are subjective measures of the tinnitus and right now there is no known way to distinguish between a tinnitus sufferer and a healthy person. You basically have to trust the word of your patients during the clinical trials that they do have tinnitus. And the results of both of those tests can fluctuate on a day to day basis depending on your mindset. It's partially believed that's why Auris Medical failed with their molecule. They had no way of knowing if the sufferers were indeed in the acute phase of tinnitus.

      A biomarker is hard evidence, a way to know physiologically that a patient indeed has tinnitus.

      This thread actually lists attempts made at finding a biomarker:
      https://www.tinnitustalk.com/threads/researchs-attempt-to-objectively-assess-tinnitus.22395/

      I think it's definitely where tinnitus research needs to look at. If you understand the mechanism of tinnitus, then you can develop the technology to combat it. I hope I am not stating the obvious here and what I am saying is actually informative...
       
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    6. Watasha
      No Mood

      Watasha Member Benefactor Advocate

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      Unknown
      I would encourage anyone with a Twitter account to get on there and like/retweet every post they can when searching for #tinnitusroundtable. The more the merrier and active community engagement goes a long way and something our community desperately lacks (many reasons why)...

      But if you can post here you can like and retweet there!
       
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    7. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      This is awesome news.
       
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    8. TuxedoCat
      No Mood

      TuxedoCat Member Podcast Patron Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Well, it's a good start. There's a lot that remains to be seen. @Hazel, do you know if that is the complete list of attendees?

      According to their Facebook page, BTA will be posting more about the discussion during Tinnitus Week.

      Does anyone know what happens next, as a result of the roundtable discussion? I'm not familiar with the mechanism that results in government funded biomedical research in the UK.

      Many thanks, TC
       
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    9. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      I’ll take it, TuxedoCat. It’s better than having no discussion for sure. It’s these sort of steps that eventually pave the way.
       
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    10. TuxedoCat
      No Mood

      TuxedoCat Member Podcast Patron Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      And at least Tinnitus Hub/Talk are in the loop. BTA have always been and continue to be more transparent and forthcoming with information than ATA. Now that ATA is in partnership with them I'm keeping my fingers crossed that some of that rubs off on ATA and not the other way around.
       
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    11. 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)
      Yes it's the complete list!
       
    12. attheedgeofscience
      No Mood

      attheedgeofscience Member Podcast Patron Mighty Benefactor Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Resolved since 2016
      Cause of Tinnitus:
      See information page
      Well done. This appears to be an important piece of advocacy that no doubt took a lot of hard work and dedication. Good to see some concrete suggestions for future deliverables (rather than umbrella terms such as "more funding" or "more research" required).

      I am guessing this should say "Leader in Computational Auditory Neuroscience":
      (Although I am sure he can read too!).
       
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    13. all to gain
      No Mood

      all to gain Member Podcast Patron Benefactor

      Tinnitus Since:
      -
      Cause of Tinnitus:
      -
      'Reader' is an academic title/rank in the UK.

      It's above a senior lecturer, but below a professor.
       
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    14. all to gain
      No Mood

      all to gain Member Podcast Patron Benefactor

      Tinnitus Since:
      -
      Cause of Tinnitus:
      -
      Good stuff! It's a start at least.

      Is this the first time there has ever been a roundtable on tinnitus?

      It says there were two roundtables. What took place at the other? And were they videoed and will we be able to watch them on YouTube?

      I know this was a British affair and that Autifony Therapeutics were represented, but I wondered if any of the foreign research, e.g., especially in the USA was brought up, i.e. Hough Institute, Frequcency Therapeutics etc? I see they have Neuromod there, which isn't British.

      Must have taken quite a bit of organising getting everybody together. Shame nobody truly famous were able to get onboard. I know there was a DJ and a comedian on the panel, and I thought I saw a TV personality when I first read the list, but I had no idea who they were until I looked them up.

      Let's hope it goes places.
       
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    15. 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)
      As far as I know, yes!
      The participants were split into two groups and our representative could obviously only report on the table she sat at. @Steve was at the other table, and promised us a report soon!
      I can't say, but I'll ask Megan to jump in here and answer some questions.
      I think there were definitely some people there who are famous in the UK, but not really known outside the UK. Unfortunately, I heard Jamie Laing (apparently quite famous in the UK) was invited but did not show up. The participant list in my first post reflects the people who were actually present.
       
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    16. all to gain
      No Mood

      all to gain Member Podcast Patron Benefactor

      Tinnitus Since:
      -
      Cause of Tinnitus:
      -
      I've never heard of Jamie Laing (I haven't lived in the UK for years), but he has a big following. He would have been much more widely known if he hadn't dropped out of Strictly Come Dancing. I don't think the others are really well known though.

      It will be interesting to see what the recommendations are from the other table.

      Who came up with the idea for the roundtable? The BTA or the MP?
       
    17. 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 don't really know, it's certainly a joint initiative, but my guess is the BTA has been actively approaching MPs and other political figures in order to start a campaign like this.
       
    18. all to gain
      No Mood

      all to gain Member Podcast Patron Benefactor

      Tinnitus Since:
      -
      Cause of Tinnitus:
      -
      I wonder if they tried to get the MOD (Ministry of Defence) involved, too?
       
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    19. glynis
      Feminine

      glynis Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
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    20. BigNick

      BigNick Member Podcast Patron

      Tinnitus Since:
      11/2018
      Cause of Tinnitus:
      Unknown
      Amazing ❤️
       
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    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)
      Hi all,

      Here is Megan’s extensive blog post about the House of Commons event. Let’s all thank her for such a detailed and informative report! I especially like her personal reflections at the end, definitely worth a read.

      Of course, we now know that this event was leading up to the petition launched by BTA yesterday to push for more research funding. My understanding is that if they can get over 100,000 signatures, tinnitus will get government-level attention.

      It’s an opportunity we simply cannot waste. So please, sign it AND (very importantly) share it with all your friends and family!

      Please do so even if you live outside the UK, your voice still matters :)
       
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