UK House of Commons Roundtable on Tinnitus

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.



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.




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?

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

 

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.

 

Yes it's the complete list!

 

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.

 

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.

 

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