Susanna Reid — UK TV Presenter Talks About Her Tinnitus

[Lane]

Thank you @Samantha R, @Ed209, @Jcb, @coffee_girl, @fishbone (and others who posted in a similar vein) for your posts on this thread.

I applaud this lady for what she has done. I have not seen or read about it but kudos to her.

Ditto...

I can't see where this lady deserves even the tiniest bit of criticism. I feel nothing but gratitude for her using her platform to bring even the smallest bit of attention to a very broad topic. I just don't know how she can be expected to articulately describe all the relevant facts about tinnitus and the wide ranging impacts it can have on different people's lives in just a single tweet. And who would read a long disseration on it anyway? -- The criticisms (and judgments) of her are completely confounding to me.

 

[fishbone]

I can't see where this lady deserves even the tiniest bit of criticism. I feel nothing but gratitude for her using her platform to bring even the smallest bit of attention to a very broad topic. I just don't know how she can be expected to articulately describe all the relevant facts about tinnitus and the wide ranging impacts it can have on different people's lives in just a single tweet. And who would read a long disseration on it anyway? -- The criticisms (and judgments) of her are completely confounding to me.

No one can please everyone my friend. That's life, even if we do something that may seem right, it might seem wrong in the eyes of others.

 

[Candy]

Yesterday a colleague who knows about my condition asked me if I'd read Susanna Reed's tweet and she then added that some of the comments in the reply were quite sad to read and acknowledge how lots of people don't get it.

 

[david c]

Personally, I don't have any problem with Susanna Reid talking about her tinnitus and raising the profile of the condition - any extra awareness of tinnitus is good.

Where there is a problem is the downgrading of tinnitus as an "easily solved nuisance" we have seen in some of the recent newspaper articles in the UK. This does absolutely nothing to help sufferers of severe tinnitus - though of course it does financially help some of the various tinnitus therapists.

What's really needed is a campaign to get support for sufferers of severe tinnitus. And one of the most achievable things in terms of the UK would be ensuring that tinnitus is given the same classification by NICE as other long-term health conditions such as asthma and diabetes. GPs get extra funding for these conditions to provide yearly reviews for patients suffering from these conditions. (as an asthma sufferer I know all about this). Tinnitus isn't counted as one of these conditions - changing that would ensure more support for tinnitus sufferers and help prevent depression and suicide.

The BTA or AOHL so far as I am aware have made no attempt to get tinnitus recognised as one of the conditions that receive this extra funding. I think it's fair to ask @David why they haven't done anything about this. I know from my own hard work ensuring that NHS Choices changed their definition of tinnitus from a symptom to a condition in its own right that change isn't easy to achieve, but it is possible.

 

[Sarah Perry]

Did anyone watch David Stockdale from British Tinnitus Association be interviewed on Good Morning Britain this Monday?

6 days left to watch before it's deleted... Only available for those in the UK!

https://www.itv.com/hub/good-morning-britain/2a3211a2389

Starting at 0:35:50!

@david c @TuxedoCat @Ed209 @Candy @Markku @Steve

 

[Ed209]

Did anyone watch David Stockdale from British Tinnitus Association be interviewed on Good Morning Britain this Monday?

6 days left to watch before it's deleted... Only available for those in the UK!

https://www.itv.com/hub/good-morning-britain/2a3211a2389

Starting at 0:35:50!

@david c @TuxedoCat @Ed209 @Candy @Markku @Steve

I had no idea you were on TV this week, @David. It was a good interview, and this really shows that her tweet has put tinnitus in the spotlight. She actually took it upon herself to speak about it further, on TV, after the outpouring.

Thanks for sharing this @Sarah Perry.

 

[TuxedoCat]

Did anyone watch David Stockdale from British Tinnitus Association be interviewed on Good Morning Britain this Monday?

6 days left to watch before it's deleted... Only available for those in the UK!

https://www.itv.com/hub/good-morning-britain/2a3211a2389

Starting at 0:35:50!

@david c @TuxedoCat @Ed209 @Candy @Markku @Steve

TuxedoCat says -
Purrrrrrrrrrrrrrrrrfect
and Thank you!

 

[Sarah Perry]

I was able to ask my hubby to share the David Stockdale interview for those not in the UK.

I got this link to share, does this work for everyone?

 

[glynis]

Great tinnitus awareness by @David, Susanna Reid and Dr. Hilary Jones.

love glynis

 

[Michael Leigh]

TuxedoCat says -
Purrrrrrrrrrrrrrrrrfect
and Thank you!

I like the way you think TuxedoCat, nice verbal wordplay....

 

[TuxedoCat]

I was able to ask my hubby to share the David Stockdale interview for those not in the UK.

I got this link to share, does this work for everyone?

Thanks Sarah, works for me in the US. -TC

 

[Starthrower]

@Sarah Perry thank you so much for providing the link to the segment in the UK!

It was a very good interview with @David representing the BTA. The awareness brought about with Susanna Reid and @David shows the impact her tweet had on tinnitus awareness and it was not sugar coated but mentioned the tough life many live with this.

The BTA did a wonderful job following up on this!!

Far from doing anything "attention seeking" as was stated in this thread.

 

[TheDanishGirl]

Very nice awareness. Thumps up to Susanna Reid and the BTA!

 

[David]

Thanks all for the feedback.

 

[David]

And one of the most achievable things in terms of the UK would be ensuring that tinnitus is given the same classification by NICE as other long-term health conditions such as asthma and diabetes. GPs get extra funding for these conditions to provide yearly reviews for patients suffering from these conditions. (as an asthma sufferer I know all about this). Tinnitus isn't counted as one of these conditions - changing that would ensure more support for tinnitus sufferers and help prevent depression and suicide.

The BTA or AOHL so far as I am aware have made no attempt to get tinnitus recognised as one of the conditions that receive this extra funding. I think it's fair to ask @David why they haven't done anything about this.

One of the first things I did when joining the BTA was to lobby NICE to produce a clinical guideline on the treatment and mangement of tinnitus. AOHL did the same, as well as lobbying for the production on guidelines for hearing loss, which were published earlier this year. The tinnitus guideline is now in motion and the guidance will be published in March 2020, and will be out for public consultation late next year. Having a NICE clinical guideline is an important step on the pathway to elevating the importance of tinnitus as a long-term health condition.

 

[david c]

One of the first things I did when joining the BTA was to lobby NICE to produce a clinical guideline on the treatment and mangement of tinnitus. AOHL did the same, as well as lobbying for the production on guidelines for hearing loss, which were published earlier this year. The tinnitus guideline is now in motion and the guidance will be published in March 2020, and will be out for public consultation late next year. Having a NICE clinical guideline is an important step on the pathway to elevating the importance of tinnitus as a long-term health condition.

Thanks for your reply on this. It's encouraging that NICE are - finally - moving on this though disappointing that it has taken/will take such a long time to have a guideline in place. But I know from my own volunteer work successfully lobbying NHS Choices to change their definition of tinnitus that a lot of work is often involved in incremental changes.

It will be very important that when NICE finally put their tinnitus guideline out for public consultation that all the tinnitus sufferers on Tinnitus Talk get involved in the consultation process. For far too long there has been a downgrading of tinnitus as a relatively "minor" health condition - and a failure to recognise the severe impact it has had on the lives of so many.

With that it mind I notice on the BTA website that it states"The experience of tinnitus is different for different people. Most people find that it doesn't affect them in any way."

I just wondered what the precise evidence for this statement is? Is there a particular survey which you have used as a source - in which case a link to the study would be good. Or is it simply based on the fact that the majority of people suffering from tinnitus may not actively be seeking help for it at the moment - in which case it is maybe a dangerous assumption that it does "not affect their lives in any way".

 

[David]

It will be very important that when NICE finally put their tinnitus guideline out for public consultation that all the tinnitus sufferers on Tinnitus Talk get involved in the consultation process.

Couldn't agree more and have encouraged the team here to register Tinnitus Talk as a stakeholder in order to be able to respond to the consultation. The BTA will do likewise.

With that it mind I notice on the BTA website that it states"The experience of tinnitus is different for different people. Most people find that it doesn't affect them in any way."

I just wondered what the precise evidence for this statement is?

Not sure - it is on one of our pages with information standard certification, meaning it has been through an extensive review process (including review by our readers panel), so there will be an audit trail. Will find out more.

 

[Agrajag364]

Couldn't agree more and have encouraged the team here to register Tinnitus Talk as a stakeholder in order to be able to respond to the consultation. The BTA will do likewise.

Excellent! Well done regarding the NICE guidelines and the suggestion of Tinnitus Talk's registration as a stakeholder.

 

[Jack Straw]

I can't see the interview!

I'll take the other posters on their word. Thanks for spreading awareness @David!

 

[Starthrower]

@Jack Straw,

@Sarah Perry left this link for we in the US. Can you view this one?

I got this link to share, does this work for everyone?

 

[david c]

Not sure - it is on one of our pages with information standard certification, meaning it has been through an extensive review process (including review by our readers panel), so there will be an audit trail. Will find out more.

Any further news on the claim on the BTA website that "Most people find that it doesn't affect them in any way." Claims like this are one of the main reasons tinnitus attracts less attention, less research and less support than other long-term health conditions. They are extremely detrimental to our cause.

We need to see the original primary research that this claim is based on to assess how accurate this claim is? @David said you would report back with this information and I look forward to hearing from you about this.

 

[Jazzer]

SAY IT LIKE IT IS !!!!!!!!!!

 

[TuxedoCat]

Any further news on the claim on the BTA website that "Most people find that it doesn't affect them in any way." Claims like this are one of the main reasons tinnitus attracts less attention, less research and less support than other long-term health conditions.

I agree, we need to understand the demographics and the definition of tinnitus used in the study.

Those people seeking out BTA and ATA are most likely the ones with the chronic condition and are struggling. Hazel and Steve recognized the struggle at the BTA EXPO. This is the population who should be the primary focus of BTA, ATA and Tinnitus Hub.

Individuals who have experienced fleeting tinnitus need to be educated along with the rest of the general population about loud noise and hearing protection. Periodic hearing tests should be recognized as part a wellness exam, the same as having a dental checkup every six months and an eye exam every year. Prevention is less costly in the long run. GPs, ENTs and Audiologists need to step up to educate. What are the guidelines for periodic hearing tests? Every year, every 3 years?

Those with Chronic Tinnitus need BTA and ATA to lobby government and inspire researchers to fund and work towards a cure. Action on Hearing Loss and The Hearing Health Foundation should be concerned with educating the general population and those who have experienced a warning sign like fleeting tinnitus.

TC

 

[Red]

What are the guidelines for periodic hearing tests? Every year, every 3 years?

TC

In my opinion, once a year. A lot can happen in a year, not to mention three.

 

[TheDanishGirl]

I personally am of the belief that hearing tests pose a great risk of worsening tinnitus and hyperacusis, so I don't plan on having one every year...more like every 2-3 years, or maybe only if I feel my hearing has gotten worse.

 

[Starthrower]

Any further news on the claim on the BTA website that "Most people find that it doesn't affect them in any way." Claims like this are one of the main reasons tinnitus attracts less attention, less research and less support than other long-term health conditions. They are extremely detrimental to our cause.

We need to see the original primary research that this claim is based on to assess how accurate this claim is? @David said you would report back with this information and I look forward to hearing from you about this.

Guess you missed @David's response to you here (please... he is working on your request):

https://www.tinnitustalk.com/threads/misophonia-on-bbc.32476/

Btw @David please can you get back soon (as promised) with the data which supports the claim on the BTA website that "Most people find that it (tinnitus) doesn't affect them in any way" I think it's really important to see how representative the evidence is for this very sweeping claim. Many thanks.

We're on it. Please be assured that your point is being seriously considered. As soon as we've made a decision on an amendment or that the evidence supports the statement I'll report it back here (along with the references). We have quite a lengthy process for amendments to some of our pages to ensure that we adhere to the information standard mark.

 

[david c]

Guess you missed @David's response to you here (please... he is working on your request):

https://www.tinnitustalk.com/threads/misophonia-on-bbc.32476/

Btw @David please can you get back soon (as promised) with the data which supports the claim on the BTA website that "Most people find that it (tinnitus) doesn't affect them in any way" I think it's really important to see how representative the evidence is for this very sweeping claim. Many thanks.

We're on it. Please be assured that your point is being seriously considered. As soon as we've made a decision on an amendment or that the evidence supports the statement I'll report it back here (along with the references). We have quite a lengthy process for amendments to some of our pages to ensure that we adhere to the information standard mark.

No I didn't miss anything. I wrote my message on this thread Friday last week. Didn't get a reply to that (I appreciate @David is busy) so then when he posted another thread at the start of this week I then posted on that thread to get his attention and then got a reply to that.

I'll be really interested to see what the evidence for the current claim on the BTA website about most people with tinnitus not finding the condition affects them at all. Since the number of people with tinnitus in the UK is about 6 million it will be really interesting to see how they can justify such a sweeping claim - and even better if/when the claim on their website is removed completely.

For too long the tinnitus establishment in the UK has downgraded the impact of tinnitus on people's lives - it shouldn't be allowed to get away with that any longer.