The UK: Petition to Make Acoustic Coordinated Reset Neuromodulation (ACRN) Available on the NHS?

Discussion in 'Support' started by Paulmanlike, Apr 21, 2017.

    1. Paulmanlike

      Paulmanlike Member

      Tinnitus Since:
      2008
      Cause of Tinnitus:
      Noise
      Hi, just wondered if any British here or anybody with an interest in the NHS.

      For too long now, tinnitus patients are told to learn to live with it; GP's have limited understanding of tinnitus and the associated sometimes devastating effects with it.

      The same treatment that has been available for too long now, therapy and maskers. Much neglect has been given to tinnitus patients as it is not considered a "serious" disorder.

      With technical advancements over the years and the greater understanding of tinnitus, do we deserve access to new medical treatment?

      ACRN therapy has so far in every published journal shown to be effective for some types of tinnitus along with the Levo system, that is currently only available privately at a huge cost.

      If this therapy was adopted by the NHS, it would allow for more widespread use, greater scientific backing of its benefits.

      However because it is relatively new, the NHS is very strict to not take on these products with the small but feasible evidence if used correctly may benefit tinnitus patients.

      Already the costs of the NHS buying the devices in some hospitals will inevitably bring the cost down.

      If a petition for government to act was created, would you sign it?
       
    2. Markku
      Inspired

      Markku Director Staff Benefactor Hall of Fame Team Tech Team Research Team Awareness

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      If they have enough evidence, yes. But I feel taxpayers shouldn't be expected to pay for treatments that have nowhere near robust enough data behind them to support their efficacy on a larger scale.

      Certain thresholds and requirements for evidence and clinical data must be met before something is offered via the NHS. And ACRN doesn't meet those.

      Can you link to the clinical trials you referred to? I know one of the larger ones had an interesting ending, it was "terminated", with results never published, which makes one think why was that exactly...
       
    3. AUTHOR
      AUTHOR
      Paulmanlike

      Paulmanlike Member

      Tinnitus Since:
      2008
      Cause of Tinnitus:
      Noise
      Was that the Nottingham trial? I want to see if the tinnitus clinic are funding any independent trials in the future for their £5k product.

      You think if they believed the product worked they would be pushing for another one to sell more and even have it adopted in the NHS on a larger scale.
       
    4. Candy

      Candy Member Benefactor Team Awareness

      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Unidentified
      There was a petition a while back in the UK, didn't get many signatures...
       
    5. AUTHOR
      AUTHOR
      Paulmanlike

      Paulmanlike Member

      Tinnitus Since:
      2008
      Cause of Tinnitus:
      Noise
      There was a journal on 8 papers that totalled 329 patients in all tests and pretty much most of them improved with ACRN and superior to placebos.
       
    6. Aaron123

      Aaron123 Member

      You are referring to a systematic review: https://www.ncbi.nlm.nih.gov/pubmed/28243221

      You seem to be mischaracterizing the conclusion of the review. In the abstract the authors conclude "The available evidence is insufficient for clinical implementation of acoustic CR neuromodulation. The limited level of evidence suggests that acoustic CR neuromodulation may have positive effects on tinnitus symptoms. Preliminary electroencephalographic data are compatible with the claim that tinnitus reduction after CR treatment is mediated by a desynchronizing effect. However, a proof for this claim is still lacking." Thus, there is some evidence, but it isn't very good evidence.

      If you look at the papers, most of them use the same data and are written by more or less the same authors: "The same authors have generated most of the studies and articles, using the same populations. Independent replication of the positive pilot results is still lacking."

      No insurance company/health system is going to cover ACRN based on this evidence.
       
      • Helpful Helpful x 1
    7. glynis
      Feminine

      glynis Member Benefactor Hall of Fame Ambassador Team Awareness

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      I will be talking to Audiology next week when meet with up Janne.
      One thing I would like to see would be for maskers on the NHS to have a few sounds on them.
      I have white noise ones but I think the option of 4 sounds would be a great help to many people e.g. sea,wind,pink noise and a sound better for a deep drone sound.

      Love glynis
       
      • Agree Agree x 2
      • Like Like x 1
    8. Paul10

      Paul10 Member

      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Stress

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