NHS £750 Million for Research

[Michael Leigh]

Nothing is perfect or runs smoothly all the time and therefore there will always be problems. Even if some people had the best medical treatment in the world for tinnitus they still would find fault unless the treatment completely cured the condition. I have spoken to people that admitted they only hear their tinnitus in very quiet surroundings, and yet are still not satisfied and make themselves miserable instead of looking at the big picture and count themselves fortunate that things could be a lot worse.

I once spoke with a person whose tinnitus was so severe he couldn't sit still for longer that 10 to 15 minutes and only found some peace when he took medication to sleep at night. This person contemplated suicide. Whether he did or not I don't know as he stopped calling. Part of me was thankful although I felt sorry for him, but found it distressing listening to how he intended to exit this world.

Michael

 

[Michael Leigh]

It is clear that a person with soft tinnitus will feel just as obsessed with tinnitus as a person who has strong tinnitus, because one of the characteristics of tinnitus is to create obsession regardless of the volume of tinnitus.

You make an interesting point in your first paragraph and for this reason I have decided to reply. Unfortunately your second comment is a little unclear to me.

It is true soft or mild tinnitus can seem just as severe for an individual as someone that has it more intrusive. I am able to appreciate and understand it for my tinnitus is variable. From complete silence, mild, moderate severe and extremely severe.

Through counselling a lot can be achieved in helping a person not to become obsessive over their tinnitus whether it is mild, moderate or severe on occasions. Therefore, if one wants try and help themselves they may need the professional help of a Hearing Therapist or Audiologist that practices the treatment and management of tinnitus. Some people are quick to dismiss counselling as a worthwhile treatment for tinnitus which ultimately can lead to habituation. Therefore with this negative mindset, they will not make any improvement at all.

Michael

 

[jay777]

everyone is being dumbed-down

 

[Tinniger]

I believe that the group of tinnitus sufferers is too heterogeneous to attract more public attention.
Not only different degrees of severity, but also different causes and characteristics.
Furthermore, there is the unfortunate link between tinnitus and depression, and many doctors see tinnitus as an expression of a mental illness (and not vice versa).
And even tinnitus experts are very divided in their views...

In my opinion, attention should be paid to diagnostics, e.g. high-resolution imaging diagnostics of Cochea and its surroundings.

 

[chamferman]

I disagree. I know these people and they all have iPhone X's and other luxuries. They generally only moan when they have to pay out - a very small amount in this case (in my opinion) - to have any kind of medical treatment. They think everything should be free and that they should be catered to without subsidising their own bills. I'd say sell your phones and look after your health if you don't like paying £50. The world owes us nothing.



I have said numerous times that the NHS needs to be run better. It's far from perfect and I could complain about many things, but we are still lucky to have it. The crux of my argument was your entitled attitude that you should get the best hearing aids without wanting to put your hand in your pocket to cater to your wants. Not the NHS as a whole. A lot of people are ungrateful when receiving treatments which are worth far in excess of what they put into the system.

We all know that the NHS needs more funding, and that's up to the government.

In my opinion, any person living in a country with state funded healthcare, generally has it good.

Were have I said I want the top hearing aids? Your making up as you along. I said I wanted hearing aids that are appropriate for my Tinnitus anything else is a waste waste of tax payers money. You ever heard the saying "never judge a man until you've walked in his moccasins" you might wanna give it a go!

My entitlement to the appropriate healthcare comes from paying into the system for the last 35 years out of my hard earned wages.

 

[david c]

The NHS are doing something as it happens.

NICE have begun a consultation, the first meeting was around a week ago. I wanted to take part but you had to commit to quite a lot of days and a lot of homework to be considered, so unfortunately time was an issue.

That potentially is good news - thanks for letting us know about this Steve.

Fortunately though David Stockdale of BTA is part of the consultation, so I am happy that there is good representation for people with tinnitus.

Oh dear, now that is really, really bad news. David Stockdale's main role at the BTA has been to represent the interests of the audiology companies. And the main interest of the audiology companies as far as tinnitus is concerned is to make sure that absolutely no drug is ever, ever authorised for tinnitus treatment on the NHS - as this would have a serious negative impact on their profits.

As NICE has a major role to play with approving drugs for use by the NHS is their anything, anything at all we can do to prevent biased David Stockdale from damaging the long-term interests of tinnitus patients on this consultation?

 

[jay777]

http://www.pulsetoday.co.uk/news/cl...idance-at-least-once-a-month/20009357.article

 

[david c]

http://www.pulsetoday.co.uk/news/cl...idance-at-least-once-a-month/20009357.article

Yes interesting article - I have myself quite a lot of experience on this one. At the point in time some years ago now when my tinnitus was most severe I did my own research on drugs for tinnitus and found that there was quite a lot of evidence to support short-term use of clonazepam as a way of reducing the volume for tinnitus. I brought this evidence to one GP, who said that because NICE had not authorised this drug for use for tinnitus she would not prescribe it. Fortunately I was very persistent and was finally able to get a second opinion from another GP who did go against NICE guidelines to prescribe this drug for me.

Others of course have not been so fortunate. Tragically we can read about suicide among tinnitus sufferers every week in the newspapers. Lives which might have been saved if more GPs were more willing to go against NICE's current guidelines, rather than telling their patients there's nothing they can do.

Of course if we could get NICE's guidelines changed that would be the best thing of all. But with David Stockdale on the panel that's unlikely to happen. He's paid for by the audiology companies and will do their bidding regardless of however many lives are lost as a result.

 

[jay777]

Yes interesting article - I have myself quite a lot of experience on this one. At the point in time some years ago now when my tinnitus was most severe I did my own research on drugs for tinnitus and found that there was quite a lot of evidence to support short-term use of clonazepam as a way of reducing the volume for tinnitus. I brought this evidence to one GP, who said that because NICE had not authorised this drug for use for tinnitus she would not prescribe it. Fortunately I was very persistent and was finally able to get a second opinion from another GP who did go against NICE guidelines to prescribe this drug for me.

Others of course have not been so fortunate. Tragically we can read about suicide among tinnitus sufferers every week in the newspapers. Lives which might have been saved if more GPs were more willing to go against NICE's current guidelines, rather than telling their patients there's nothing they can do.

Of course if we could get NICE's guidelines changed that would be the best thing of all. But with David Stockdale on the panel that's unlikely to happen. He's paid for by the audiology companies and will do their bidding regardless of however many lives are lost as a result.

Any idea what David Stockdale's salary would be from BTA?

 

[Ed209]

Any idea what David Stockdale's salary would be from BTA?

I doubt he earns that much. My guess would be around £60k a year. They turnover around £800k a year, as a charity, but they spend a lot. Their latest mission statement is to spend money looking for a cure via research.

More info here: http://beta.charitycommission.gov.uk/charity-details/?subid=0&regid=1011145

Their complete financial statements for last year:
http://apps.charitycommission.gov.uk/Accounts/Ends45/0001011145_AC_20170331_E_C.PDF

More snap shots if you just want an overview:

 

[jay777]

spend money looking for a cure via research.

music to my ears

 

[Ed209]

To get a better understanding of the median salaries for chief executives of small charities you can look here:

https://www.thirdsector.co.uk/avera...evo-survey-reveals/management/article/1333730

I'll paste an excerpt below:

The survey provides median chief executive salaries for charities in different annual income brackets. For charities with incomes of between £50,000 and £1m it was £42,210; for those with incomes of between £1m and £5m it was £61,938; for those with incomes of between £5m and £15m it was £80,000; and for those with incomes greater than £15m it was £105,000.

 

[Ed209]

music to my ears

In case you don't want to look through a load of pages:

 

[Markku]

Their latest mission statement is to spend money looking for a cure via research.

music to my ears

For those interested, check the PDF attachments below.

You can find the BTA's "Cure Roadmap" which is basically a mindmap they've created, showcasing their vision to a cure.

There's also the "Mapping a Cure", an article published in their Quiet! magazine, attached.

 

[Ed209]

Oh dear, now that is really, really bad news. David Stockdale's main role at the BTA has been to represent the interests of the audiology companies. And the main interest of the audiology companies as far as tinnitus is concerned is to make sure that absolutely no drug is ever, ever authorised for tinnitus treatment on the NHS - as this would have a serious negative impact on their profits.

What are you basing this information on?

 

[david c]

What are you basing this information on?

1. The people who run the BTA - the trustees and board are overwhelmingly composed of people who have a financial interest in tinnitus - (including audiologists) Not tinnitus sufferers.

2. These include people such as David Baguley - whose idea of a research project worthy of BTA financial backing - was a "working" holiday in Australia to test (yet another) tinnitus sound therapy device. Nice work if you can get it ...

3. "Their latest mission statement is to spend money looking for a cure via research."

That sounds good. But a bit vague. So what does it actually mean?

A couple of years back the BTA organised a survey ostensibly to find out what the key tinnitus research priorities should be.
Having rejected a lot of suggestions they came up with a shortlist. Some tinnitus sufferers got invited along to a meeting about it. But guess what ... They decided that it wasn't safe to leave these tinnitus sufferers in a group on their own to decide on the priorities. You know ... just in case they came up with the wrong ones!

Instead all the tinnitus sufferers had to be part of larger groups made up of audiologists and CBT therapists.

In the end - surprise, surprise they decided that all the research money should get spent on yet more studies on Tinnitus retraining therapy, and CBT therapy - just in case we hadn't got enough already.

Drug development? Stem cell research?
Not interested. Not a penny got spent on the things which could really make a difference.

So don't fall for the hype. Look at the reality and what the BTA has actually achieved in terms of research. Very, very little. Those of you who want to support tinnitus research in the UK - please don't give money to the BTA!

 

[david c]

Full disclosure on this by the way - quite a lot of the information on this is from tinnitus sufferers I know who participated in the BTA's so-called survey and the meeting afterwards. And were completely disillusioned by the result.

People who've actually seen the BTA working close-up rather than cut and pasting a mission statement from their website.

Don't fall for the corporate b*****it. Judge people not by what they say but by what they do.

Look at what the BTA has actually achieved in terms of meaningful tinnitus research - sweet f ...

 

[jay777]

In the end - surprise, surprise they decided that all the research money should get spent on yet more studies on Tinnitus retraining therapy, and CBT therapy - just in case we hadn't got enough already.

What a waste, better off spending it on awareness.

 

[glynis]

The BTA do amazing work and lovely people and have spoken with them many times and in touch now by twitter.
The Birmingham Expo in September is going to be amazing and not to be missed.

 

[david c]

The Birmingham Expo in September is going to be amazing and not to be missed.

Well, if you say so Glynis ...

It will certainly provide ample opportunities for audiology companies to flog some sound therapy devices to punters ....

 

[Ed209]

It will certainly provide ample opportunities for audiology companies to flog some sound therapy devices to punters ....

In the end - surprise, surprise they decided that all the research money should get spent on yet more studies on Tinnitus retraining therapy, and CBT therapy - just in case we hadn't got enough already.

Drug development? Stem cell research?
Not interested. Not a penny got spent on the things which could really make a difference.

So don't fall for the hype. Look at the reality and what the BTA has actually achieved in terms of research. Very, very little. Those of you who want to support tinnitus research in the UK - please don't give money to the BTA!

Without first-hand knowledge and information, it's hard to separate fact from hearsay (fiction). I don't know the facts first hand so I can't judge, but I'd rather donate than not donate at all. I think sometimes we can corner ourselves into a position where we don't contribute, anything, to anyone, because of our scepticism.

The only other way is to find a research team you deem worthy enough, and donate directly without a third party being involved.

 

[Michael Leigh]

I wouldn't be going to one of these tinnitus seminars or conferences, as I believe they are a waste of time. The people there know next to nothing about tinnitus.

 

[glynis]

@Michael Leigh,
This is the first ever Massive Tinnitus Expo in the UK if I'm right that will be amazing and all under one roof.

I hope to meet up with the BTA team and our lovely @Steve and wish @Markku could come too...

I think you would really like it.
Love glynis

 

[Paulmanlike]

@attheedgeofscience made a very good point a while ago. Millions of us worldwide and how much gets given in donations/contributions given the high number of sufferers? Very little.

Also, tinnitus is rarely a sympathetic condition - we know what it's like but many people discard it and other conditions get a lot more focus.

If you're unhappy about it, ask yourself when was the last time you contributed to research whether that be in a financial sense or something else.

 

[Michael Leigh]

This is the first ever Massive Tinnitus Expo in the UK if I'm right that will be amazing and all under one roof.

Indeed @glynis and I hope it is successful. Unless people hosting these events have tinnitus and no doubt a few do, these conferences are a waste of time in my opinion.

 

[david c]

@attheedgeofscience made a very good point a while ago. Millions of us worldwide and how much gets given in donations/contributions given the high number of sufferers? Very little.

Also, tinnitus is rarely a sympathetic condition - we know what it's like but many people discard it and other conditions get a lot more focus.

Indeed. What we can do though is look to sufferers of other conditions who have made real progress - and look at how they did it. The most relevant example is probably the sufferers of ME - despite the condition being a very debilitating one they had been hugely active in campaigning for greater understanding of their condition.

The key thing ME sufferers realised is that all the ME therapists offering "management strategies for their condition" weren't their allies in developing a real cure. They were actually their enemies. After all what possible motive would those who profit from the condition have to see a real cure developed for it? M E sufferers realised what the "management therapists" real motivations were - and worked hard to stop them - for example getting the raw data behind some of their research re-analysed.

The same is true of tinnitus "management therapists" - they are not our allies - they are part of the obstacles to finding a real cure.

More about that here:
http://www.bbc.co.uk/news/newsbeat-44094429
and here:
https://www.theguardian.com/comment...-with-mecfs-something-remarkable-is-happening