NHS £750 Million for Research

[jay777]

A study funded by the BTA into the healthcare cost of tinnitus management in the UK has calculated that the NHS healthcare bill is £750 million per year.

Would you forgo sound machines and CBT, so this money could be spent on research?

 

[Markku]

Would you forgo sound machines and CBT, so this money could be spent on research?

It isn't that simple. Do you really think the gov't would just put the money into research if there was no need for these current costs?

No.

They would budget (at least the majority of) it elsewhere. Allocating all of the saved money into research is just unrealistically wishful thinking, I'm afraid.

 

[jay777]

@Markku What if the UK's 6 million tinnitus sufferers petition for this change?

 

[glynis]

Our ENT is being messed around again where I live.
The new hospital could not cope with demands and it moved into community hospitals and then it was not cost effective so wen't back to our main hospital and couldn't cope with demands and moved to health centres so the main hospital can see to operations.
Money wasted as each change over had to be re stocked as had new suppliers and hearing aids were different and couldn't repair them.

 

[Markku]

@Markku What if the UK's 6 million tinnitus sufferers petition for this change?

How would you go about achieving that? Let's see, on the internet, the largest ever tinnitus related petition I know of has attracted approx 7,000 signatures. That petition targeted tinnitus sufferers globally.

Getting 6 million UK residents to sign a petition...

The largest ever Parliament petition gained a bit over 4 million signatures:
http://www.itv.com/news/2017-01-31/...e-10-most-signed-and-what-have-they-achieved/

I believe we can be pretty confident the 6 million figure is unattainable.

For the Parliament to consider a matter for debate, 100,000 signatures are needed.

But if worldwide tinnitus petitions don't get anywhere near that many signatures, I'm baffled as to how a UK-only petition would stand any chance to reach the needed 100,000 signatures for the Parliament to even bring up the topic?

Remember; if you combine every single tinnitus community and tinnitus support group (Facebook Groups included) on the internet, the overall member numbers is less than 100,000 (give or take).

And fewer than 1% of those can be expected to take any real action (based on 8 years of experience and seeing how things work in the tinnitus space).

So, at the end of the day, we have to pick our battles.

 

[glynis]

NHS cost for tinnitus is complicated.
Referral to ENT ,MRI if needed,Hearing test,Audiology Referral and CBT if needed,White noise generators,hearing aids and sound ball.
After that you can be seen in a health centre or community hospitals directly for tinnitus so bypassing ENT.
Some hospitals provide TRT and not other .
I think a separate fund for tinnitus resurch would be good but as long as they think people Habituate in the end then that would be unlikely to happen.

 

[Gman]

How would you go about achieving that? Let's see, on the internet, the largest ever tinnitus related petition I know of has attracted approx 7,000 signatures. That petition targeted tinnitus sufferers globally.

Getting 6 million UK residents to sign a petition...

The largest ever Parliament petition gained a bit over 4 million signatures:
http://www.itv.com/news/2017-01-31/...e-10-most-signed-and-what-have-they-achieved/

I believe we can be pretty confident the 6 million figure is unattainable.

For the Parliament to consider a matter for debate, 100,000 signatures are needed.

But if worldwide tinnitus petitions don't get anywhere near that many signatures, I'm baffled as to how a UK-only petition would stand any chance to reach the needed 100,000 signatures for the Parliament to even bring up the topic?

Remember; if you combine every single tinnitus community and tinnitus support group (Facebook Groups included) on the internet, the overall member numbers is less than 100,000 (give or take).

And fewer than 1% of those can be expected to take any real action (based on 8 years of experience and seeing how things work in the tinnitus space).

So, at the end of the day, we have to pick our battles.

If people don't know about a petition, then how can they sign it? It's more about lack of awareness. Not saying it's anyone's fault or anything.

 

[volsung37]

You can get a sound machine on the NHS where I live. They also gave me an internal masker. Both were no use to me. Petition would be pretty pointless. The NHS has enough on its plate without more demands.

 

[jay777]

24k members here, make them sign.

 

[Ed209]

24k members here, make them sign.

Most of those 24k leave after a few months never to be seen again. Trying to galvanise the tinnitus community to take some sort of personal action is extraordinarily difficult. You've got more chance of installing a condom machine in the Vatican than getting 24k members here to sign a petition.

 

[jay777]

@Ed209 what about if all members would have to sign the petition to access the forum?

 

[Ed209]

@Ed209 what about if all members would have to sign the petition to access the forum?

Suggest it to @Markku he's the main man. Although I'd point out that it's taken 8 years to accumulate those 24k members, and knowing the mentality of people it wouldn't surprise me if a petition would put them off signing up in the first place. We're a strange bunch.

 

[Michael Leigh]

Most of those 24k leave after a few months never to be seen again. Trying to galvanise the tinnitus community to take some sort of personal action is extraordinarily difficult. You've got more chance of installing a condom machine in the Vatican than getting 24k members here to sign a petition.

The majority of people here just don't get it @Ed209 Anyone would think tinnitus is the only medical condition for which there is no cure at present, but many people successfully habituate to the condition with or without treatment in time.

Michael

 

[Zug]

I don't quite get the idea... You're talking about not giving any treatment for Tinnitus and spending it all on research?

So, someone walks into a Hospital complaining about Tinnitus, the nurse tells him "Yeah, we used to have some coping treatments that worked for most people, but someone made a petition and now you must go away."

Would never happen in the real world.

Also, in the real world you look into how much money organizations like ATA and TRI work with, you would be surprised. If those million of people with Tinnitus donated 5 bucks a year, that would be a far more realistic solution to the funding issue (if that really is an issue).

Most people don't even donate some bucks to keep Tinnitus Talk alive. So I wouldn't be too eager to complain about the government when even we, the most impacted, don't help that much.

Best,
Zug

 

[jay777]

The majority of people here just don't get it @Ed209 Anyone would think tinnitus is the only medical condition for which there is no cure at present, but many people successfully habituate to the condition with or without treatment in time.

Michael

So what happens to the people who do not habituate?

 

[Tinker Bell]

24k members here, make them sign.

All 24k members are not from the UK. I am not from the UK, my signature on a petition specific to NHS funding would be pointless.

And forcing people to sign? What if they disagree with the petition? What if they are 75 years old and would likely never see any benefit from research and would instead like hearing aids?

Does all of that funding go only to sound machines and TRT? Or does a portion go towards diagnosis, MRI and CT scans, oral steroids, HBOT, white noise generators and hearing aids?

 

[jay777]

So, someone walks into a Hospital complaining about Tinnitus, the nurse tells him "Yeah, we used to have some coping treatments that had limited success, but someone made a petition and now we have a lot of research going on so there will be an effective treatment soon and MAY BE A CURE"

 

[Ed209]

So what happens to the people who do not habituate?

The same as what happens to anyone else with an incurable problem. If anyone wants to help change that then more needs to be done collectively and on a personal level. Most people want the earth to move for them but don't contribute anything of value to help make this happen. That's just how a lot of people are. The tinnitus community seems particularly bad in this respect.

 

[Tempest]

Most people who come here and leave either get their tinnitus cured or they don't want to think about it no more. And it's usually the latter, because it's the only way to live a normal life. And I noticed that sadly tinnitus is one of those conditions where shame can play a big part so that's why there aren't that much about it in the media or why people who you didn't know had tinnitus until you mention it.

Like for example I had a friend who I didn't know had tinnitus until I mentioned it, he got it as a kid due loud music and he also said that it's kinda depressing never to hear silence again, but thees days he doesn't think about it as much. But man, what a scary thought, even 10 years doesn't make you forget it. He still remembers and thinks about it sometimes. And I've heard similar stories to his. So that's why I would say habituation is a wrong word and the true word would be "To put up with it".

 

[david c]

For me what's really bad is not that NHS money is spent on sound machines and CBT, but that the small pot of tinnitus research money in the UK - for example that spent by the BTA - is overwhelmingly spent on repetitive and unoriginal studies of sound therapy and CBT.

I can understand why this happens. Audiology companies, whose representatives are numerous on the boards of the BTA - want the research money spent on something that will boost their profits. The same goes for the CBT crew. But we really know all there is to know about the limited role of CBT and sound therapy in tinnitus "management" by now.

What tinnitus sufferers want is innovative, original research which is really going to advance their lives - stem cell research, drug development - etc. Unfortunately, that won't do anything for the profits of either the audiology companies or CBT Therapists - and they are the people who have a stranglehold on tinnitus research spending in the UK.

 

[Jazzer]

Most people don't even donate some bucks to keep Tinnitus Talk alive.

This is inexcusable.
Every member on here takes something of real value from this site.
Reassurance, support, ideas for treatments, advice, the opportunity to make friends of people with similar worries and problems.
Just observe the number of people who return here on a daily basis.
Why not buy a few less cans of beer, and support the only community that really supports us sufferers?

 

[Ed209]

This is inexcusable.
Every member on here takes something of real value from this site.
Reassurance, support, ideas for treatments, advice, the opportunity to make friends of people with similar worries and problems.
Just observe the number of people who return here on a daily basis.
Why not buy a few less cans of beer, and support the only community that really supports us sufferers?

And therein lies the problem at large jazzer. A lot of people want: more money for research, treatments, more awareness, a cure?

But when it comes down to it they want the heavy lifting to be done by others. I've said this before but the world owes us nothing. We have to affect the change we want to see.

This excerpt from a Steve Jobs speech is very apt here:


"Life can be much broader once you discover one simple fact, and that is – everything around you that you call life, was made up by people that were no smarter than you. And you can change it, you can influence it, you can build your own things that other people can use.


The minute that you understand that you can poke life and actually something will, you know if you push in, something will pop out the other side, that you can change it, you can mold it. That's maybe the most important thing. It's to shake off this erroneous notion that life is there and you're just gonna live in it, versus embrace it, change it, improve it, make your mark upon it."

 

[Jazzer]

Every member on here takes something of real value from this site.

There is no excuse.....

 

[Jazzer]

Allocating all of the saved money into research is just unrealistically wishful thinking, I'm afraid.

Absolutely - and without money spent on support people would suffer so much more,
and many would give up the struggle.....

 

[Autumnly]

I think it's also really difficult to support research when it comes to tinnitus. Which organization should you support? One that is focused on curing hearing loss? Or epilepsy? Or hyperacusis? Maybe the British Tinnitus Association or the American one?

Tinnitus can also come with a lot of shame and guilt. Many people don't talk about it. Did anyone share on facebook that they developed tinnitus to warn others? Did you talk about #tinnitusweek? Did you tell your friends, family or co-workers that you developed tinnitus?

Raising awareness is difficult because when it comes to tinnitus it usually only reaches and is being shared by those who already know about it.

I'm donating money, I'm trying to raise awareness on twitter, I'm reaching out to people who are struggling, I'm thinking about creating a support group in my town (though I'd probably not be able to attend), I told my friends about my tinnitus but they don't take it seriously. People simply don't care about tinnitus until they get it and then most of them habituate and might perpetuate intentionally or unintentionally the idea that it's is no big deal.

I've seen people trying to raise money for the BTA on twitter but tinnitus is just not seen as a serious condition by those unaffected by it. It doesn't kill anyone, how bad can it be?

 

[jay777]

Do you not think that 750M is a huge amount to spend on tinnitus each year?

 

[Jazzer]

Did anyone share on facebook that they developed tinnitus to warn others?

Yes I frequently mention it on Facebook.
I am a working jazz musician.
I make every bandleader I work with aware of the importance of controlling the volume.
I tell promoters if they've got it wrong.
I talk to individual musicians, and warn them very strongly.
I even told my refuse men that they should wear earplugs and earmuffs because the refuse truck is so loud.
Basically, I have become a pain in the arse,
to try to avoid further pain in my ears.

 

[kelpiemsp]

Do you not think that 750M is a huge amount to spend on tinnitus each year?

No this number really isn't that large. Tobacco costs the US 300 Billion (USD) per year. The social tax smoking has placed on us is the equivalent of 1k a household per year of our taxes. But I think you should look at the positive aspect of this. If people are doing the math and crunching the numbers, then they are looking at doing the research. A researcher will go to the NHS (I could be totally wrong, I have no idea how the NHS works lol) and say look, If you give me X milion over X years, I can maybe save X dollars and we all win. Because unless people are dying from it, you probably are not going to get sympathy dollars.

 

[Ed209]

Tinnitus can also come with a lot of shame and guilt. Many people don't talk about it. Did anyone share on facebook that they developed tinnitus to warn others? Did you talk about #tinnitusweek? Did you tell your friends, family or co-workers that you developed tinnitus?

I've never understood the shame angle? I remember having a debate on here years ago about this. I tell people all the time and feel zero shame. What's there to be embarrassed about? It's not like we've got Syphilis or something. If anything I'd say people are sick of hearing me talk about it, but I always warn people when I think it's pertinent.

I agree with you on everything else you said and applaud the fact that you are taking some action of your own. I think I must be in the minority on the shame thing though.

 

[GregCA]

I've never understood the shame angle? I remember having a debate on here years ago about this. I tell people all the time and feel zero shame. What's there to be embarrassed about?

I am not ashamed of my tinnitus, but my disclosure is on a "need to know basis". With such a disability, I can easily be categorized as "broken goods" and limit my chances when I apply for a job or seek a business partnership.

Even among the people who know I have tinnitus, only a very small amount of people know how devastating it is on my life. I downplay it to the rest, sometimes for reasons as stated above, sometimes to minimize their worry (my parents for example).