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Conspiring together: tinnitus and hearing loss

In 2011 the British Tinnitus Association (BTA) initiated the James Lind Alliance Tinnitus Priority Setting Partnership in collaboration with NIHR Nottingham Hearing Biomedical Research Unit. One of the Top Ten questions identified through that process was, 'How can tinnitus be effectively managed in people who are Deaf or who have a profound hearing loss?'

That this question was seen as a priority by the tinnitus community was not unexpected. Travelling up and down the country to attend tinnitus support group meetings, I have had many discussions with people with severe to profound hearing loss and tinnitus. They were all struggling and dissatisfied with the support they had received to date, having little idea of how to manage their tinnitus.

When considering how to go about addressing this question, our initial investigations revealed the paucity of resources for people with tinnitus and severe or profound hearing loss. This was backed up in discussions with Audiologists and Hearing Therapists, all looking for resources or ways to help tinnitus patients with severe to profound hearing loss and finding very little available to offer. It became clear that before we could address the question from the Tinnitus Priority Setting Partnership, we needed to more formally document and evaluate the experiences of those living with severe and profound hearing loss and tinnitus.

The BTA commissioned The Ear Foundation to start the conversation with people with hearing loss and tinnitus. This work allowed respondents to express what it is like to live with tinnitus and hearing loss, to evaluate the support they had received to date and offer their hopes and aspirations for the future. The chance to have their views and experiences heard was seized by the tinnitus and hearing loss communities. Over 1400 people responded, often at length and in depth, and we would like to extend our thanks to each and every one who completed the survey for their enthusiasm and support. It is their words that give this report its impact.

We know that tinnitus and hearing loss can have a massive effect on a person’s employment, relationships, social life and emotional wellbeing. This report sets a serious challenge to the tinnitus community and the wider health and social care system to purposefully consider the impact of tinnitus and hearing loss as they “conspire together.”  In order to improve the quality of life of our 1432 respondents and the many more in the wider community, we all need to face and address these challenges and urgently act upon the recommendations in this report.

You can download the report here: BTA-TEF - Tinnitus hearing lossFINAL.pdf