Tinnitus E-Programme - One Year On

Today is 19^th June 2010, and it is exactly one year since the Tinnitus E-Programme was launched on-line as a freely available resource for both clinicians and for people who have troublesome tinnitus. Now seems like a good time to reflect on this past year. What difference has the E-Programme made? Who has benefited from using it? Does it work as an on-line resource?

What difference has the Tinnitus E-Programme made?

Probably the biggest difference that it has made has been that for the first time, as far as I am aware, there has been a free to access FULL programme of tinnitus management available to anyone who can access the internet! The site is not meant to be used as an “information site” about tinnitus. There are already plenty of those around and the BTA (British Tinnitus Association) website is one of the best, certainly in the British Isles.

But at least an equivalent “biggest difference” has been the difference that the E-Programme has made to the lives of many individuals who have used it. This difference is obvious from the testimonials sent in by people who have completed the programme during the past twelve months. I have published each of them on the website, the most recent of which are on the Home page.

Who has benefited from using the Tinnitus E-Programme?

Other than those individuals to whom I am very grateful for having sent in their BEFORE and AFTER THI (Tinnitus Handicap Inventory) questionnaires and testimonials, unfortunately I don’t know the answer to this!

It is an extremely frustrating matter for me personally that so few people send me their questionnaires. Coming from an evidence-based clinical background as I do, without sufficient “evidence” of clear Outcomes, the on-line version of the Tinnitus E-Programme cannot be validated.

The exact same programme is validated as a face to face “clinical intervention for tinnitus”, however, until a far higher proportion of people accessing the materials on the website send in their BEFORE and AFTER questionnaires, it is unclear how effective it is as an on-line programme. Considering the large numbers of people from all over the world who are downloading the materials, I am very disappointed that more people aren’t prepared to help validate the E-Programme. There have been times throughout this past twelve months that I have seriously considered withdrawing the E-Programme and closing down the website because of this. Unfortunately this remains a real possibility and sooner or later I am going to have to make this very difficult decision. Without the evidence of clear successful Outcomes, I am not prepared to allow my name to be linked to a non-validated resource.

It is equally important that people who have not been helped by the E-Programme send in their Outcomes. I have received none of these, other than one lovely chap who had found it helpful but needed much more in the way of one-to-one therapy for anxiety and depression. I know that this is a common issue from my clinical work. Very often, probably in around 20% of all those patients referred to me with distressing tinnitus, additional therapy is required for anxiety and/or depression related problems. The on-line Tinnitus E-Programme does not and cannot provide the kind of help needed in such cases.

So, considering the above……

Does the Tinnitus E-Programme work as an on-line resource?

Based on numbers of Outcomes sent in, the answer – at the moment after one year – is no. There is insufficient evidence to claim that it does work as an on-line resource. Certainly, it works for some – based on the evidence of the Outcomes sent in. However, having received only 13 sets of full Outcomes when there have been 12,577 visitors accessing the E-Programme, the answer is a resounding NO!

So, unless many more individuals start sending in their results over the coming months, I will have no choice other than to close down the website. The materials can still be available on individual request, but without a clear evidence base, the Tinnitus E-Programme website will cease to be by the end of 2010.

Debbie Featherstone DHP(NC)

Founder

Tinnitus E-Programme

Holistic Tinnitus Clinic in France - BLISS??

For my first post I thought I would introduce an international flavour. My travels and reading have a flavour of the European this week. I work part time in Denmark and was on the bus there last week when I noticed an advert for accupuncture treatment for tinnitus patients. I think I am right in saying this treatment has not shown any improvement in actual tinnitus awareness but has improved peoples general health and well being so improving the perception of tinnitus. I then read an article about a clinic in France specialising in tinnitus and decided it was time I contributed here so let me tell you about that article and that clinic.

What makes the Imerta Clinic in Marseille unique is that it is run as a true multi- diciplinary clinic and set up and run after a chance meeting of two doctors interested in tinnitus and an Italian businessman who had tinnitus. The business man offered to lend his skills to co-ordinating tinnitus researchers across the continent and set up and runs an organisation called the Tinnitus Research Initiative. The physical location of the clinic was chosen with a private hospital group called Clairval and a team was chosen to bring people specialising in tinnitus together.
That team is extensive and includes: Otoneurology, ENT, cardiology, neurosurgery, psychiatry, osteopathy, stomatology, neuroradiology, radiology, biology, hearing aids and reserach. 20 professionals are involved in this holistic process working in unison. As a health professional fighting for every onward referral I would love to make in the U.K. this whole idea sounds like bliss!
So far since it's establishment in 2007 this clinic has seen more than 3,000 patients. In more than 54 % of cases the tinnitus has improved. They use the same outcome measures Debbie would like to see completed for the e-programme - namely the Tinnitus Handicap Inventory (THI). Their THI results are impressive showing that in these 54% of cases the THI scores reduced 25-30%.
An initial appointment is coordinated by a specialist in oto-neurological investigations and is tailored to the complexity of the patient. If at the end of the consultation a cause of the tinnitus is not established a wider series of investigations is undertaken as an in patient for a half day and the rest of the team is called upon to contribute but all in the same place at the same time, it may be a little overwhelming when first discussed to have all the team around you but imagine walking away after only 2 visits with a clear diagnosis and treatment schedule!!
So what treatments are offered, again an extensive list suggests the possibility of: medical or surgical treatment of an otological pathology, sound therapy, relaxation techniques, osteopathy for those found to have tempro-mandibular joint disorder, hearing aids, sound therapy, behavioural and cognitive therapy are all part of the treatment arsenal.
Are any of these treatments ground breaking or unknown in the U.K.? No, absolutely not but to be able to access them as required, under the same roof and as part of a holistic approach I say to you again BLISS!!!!

Well I know how fantastic that clinic would be for me as a professional what do you as tinnitus patients think of the idea?

Your experiences when you ask for help with tinnitus

Hi

Is it the case that people who have tinnitus can go to their GP and find lots of useful information about tinnitus and the help there is locally? Or is it just the opposite? What sort of information do you think would be helpful for GPs to have to be able to point people in the right direction?

What have your experiences been when you visited your GP? And what have your experiences been when/if you went to an ENT or Audiology Department or in the UK a Hearing Therapy department?

Have you found them helpful or otherwise? If otherwise, how do you think things could be improved in terms of access and information? If you found them helpful, how did they help you?

It will be really interesting to hear from you if you have an opinion about any of the above, and any ideas that might make useful information about tinnitus and how to "manage it", "cope with it" or just understand it more readily available locally.

The Tinnitus E-Programme was set up because of what appeared to be a dearth of locally accessible help - and I soon discovered this to be the case not only in England and the Home Countries but worldwide. Did you know that the E-Programme is being used by individuals from across the world - it has spread from here in Lancashire, England to Australia, New Zealand, America, India..... and many more countries.

We look forward to reading your stories

Best wishes

Debbie Featherstone
Tinnitus E-Programme
www.tinnituseprogramme.org

The Placebo "problem"

I have come across a very interesting article this week concerning the pharmaceutical companies and the placebo "problem". Although it isn't specifically about tinnitus, it IS about drug trials including those for antidepressants and "mood enhancing" drugs that are sometimes prescribed for people who have distressing tinnitus of course. I have drawn my own conclusions about the information herein, and I have read many other materials that the information in this article supports; it is quite a lengthy piece to read, but I hope you find it informative.

The link is from the Wired UK magazine October 2009 issue and was cited as reading for my MSc. and as such in my personal opinion, gives the article further justifiable credibility. The full URL for the link is: http://www.wired.co.uk/wired-magazine/archive/2009/10/features/the-placebo-problem-big-pharma%27s-desperate-to-solve.aspx

Best wishes to all

Debbie Featherstone
Tinnitus E-Programme
www.tinnituseprogramme.org

Is the E-Programme really free to access and if so, why?

The Tinnitus E-Programme is free to access. All the materials for the programme are freely downloadable including 4 x 30 minute recordings of relaxation exercises. There are no hidden charges - everything in the www.tinnituseprogramme.org website is freely available including a Handbook that can be downloaded and used as you progress through the programme.

The reason the E-Programme materials are free to access is so that as many people as possible can have access to a way of helping them reduce tinnitus distress and habituate to tinnitus. The materials have been available to patients in Debbie Featherstone's NHS clinics in England for some 16 years, have been and continue to be used very successfully by hundreds of people.

Since launching the on-line Tinnitus E-Programme in June 2009, hosted by the Clitheroe Therapies website, it has been accessed by people across the world and it was time that the E-Programme had its own dedicated website.

In addition to the free to access materials, there is a Support Forum that individuals can join at http://uk.groups.yahoo.com/group/tinnitusprogramme The support forum is moderated by 3 Hearing Therapy/Audiology professionals and one lay person who herself has tinnitus, found her own way of managing it effectively and now helps support others to habituate to their distressing tinnitus. This Blog can also be used to help support those undertaking the E-Programme.

The Tinnitus E-Programme is NOT A CURE for tinnitus. There is no cure, however, through gaining an understanding of what tinnitus is, learning how to reduce levels of stress arousal that perpetuate it and putting this learning into practice, many hundreds of people benefit from undertaking this structured programme over a 6 - 10 week period.

To get started on the Tinnitus E-Programme, just copy and paste this URL into your browser: www.tinnituseprogramme.org

Debbie Featherstone
Tinnitus E-Programme

New dedicated website for the Tinnitus E-Programme

The Tinnitus E-Programme now has a dedicated website where all materials including information and recorded relaxation exercises are free to access. The address of the website is www.tinnituseprogramme.org

This new Blog site has only been set up today so it's very early days plus, I am new to "blogging" so please bear with me if there are any teething problems at these initial stages

Best wishes

Debbie Featherstone
Tinnitus E-Programme
www.tinnituseprogramme.org