Six months at Tinnitus UK

It’s now been 6 months since I joined Tinnitus UK and a good time to update you on the progress we’ve made so far, and our plans to come. It’s been intense! 

Financial security for Tinnitus UK 

I want to start with a huge thank you to everyone who has donated to our Autumn, Christmas and Tinnitus Week appeals. You’ve been incredibly generous at a time of widespread hardship, and we are so grateful. 

Financial security remains a top priority for us. This next year will be critical for us as we embed our new team and plans.  Over the past 5 years our income has declined, and our expenditure increased. With limited reserves, this is unsustainable and as you know, we have had to take immediate action.  I’m pleased to say that we finish the financial year where we expected to be, and I would like to reiterate our thanks to everyone who has helped us in our time of need. Thanks to your generous support, we have been able to continue to provide our vital services and have had the time to create a plan for the future, particularly how we measure and communicate the impact of our work, and how we share that more effectively with you.   

We’ve had to make some difficult decisions to protect the future of Tinnitus UK, but we are always thinking about what is best for people with tinnitus – I can assure you that you are at the heart of every decision we make. 

The strategy 

We spent 3 months speaking to people with tinnitus across the UK, listening to their needs, wants and experiences of the support they have been getting (or not!).  We also spoke to many other people involved in caring for and supporting those with tinnitus, organisations working in the sector, universities who research tinnitus and train the next generation, and many, many others.  The process was immensely rewarding and really helped me as a new CEO to grasp the key issues and challenges people are facing. 

We then spent a month creating a strategy, helped and supported by many people including our amazing volunteers and members.  We consulted on early version with key audiences, including our members, and we’re pleased to have a final version.  As thrilling as this is, we are under no illusion that we can rest!  The team and I are busy putting business plans together to support the delivery of what we think is an exceptionally exciting strategy, and plotting our first steps. 

So, what is the strategy?   

In direct response to what we have heard, particularly from people with tinnitus, we are focussing on three key objectives with a new vision: ‘a world without tinnitus’.  

Objective 1 – More and better local support for people with tinnitus.   

This seems obvious, but the lack of support around the UK for people with tinnitus was a real eye opener.  As we toured the UK putting our plan together, we could see it: a palpable postcode lottery, which is simply not good enough. 

Our plans over the next 10 years will be to create a regional structure to deliver more in-person support around the UK, to increase the number of Tinnitus Support Groups, help to inform and shape health services to deliver better outcomes for people with tinnitus, plus more. 

Objective 2 – Focus on research to help find cures, enable better understanding of tinnitus and to improve treatments and support. 

While there is some brilliant work going on, there simply is not enough research being done.  This is where we are going to see breakthroughs leading to easier lives for people with tinnitus.  Some say a cure isn’t possible, but we say let’s find out.   

Over the next 10 years we will help inspire and enthuse the next generation of scientists, PhD students and social entrepreneurs, as well as the established institutions and companies, to look at tinnitus and work towards improving our knowledge and understanding of it. 

Objective 3 – To try and prevent as many people as possible from getting tinnitus in the first place. 

Some tinnitus is avoidable, but many who get it do not understand how to protect themselves until it’s too late.  We want to support the work already going on in this area, but to also turn this into the national and international public health message it should be.  Everyone should be free to enjoy their lives, listen to music, go to the cinema and even just sit in cafes without putting themselves at risk of getting tinnitus, or making their tinnitus worse.  

There is much more to our strategy, and we will be releasing the full document for all to see very shortly, as well as hosting an online session exclusively for our members next month. 

Membership 

I’m not going to say too much about this at this stage, but we have been reviewing our Membership offer and how we engage with what is one of the most important groups of people we have: our Members.  All I will say is we have looked carefully at the benefits of being a member and recognised we could do more.  We have also looked at how we communicate with members and have realised we need to do much better.  Watch this space for some exciting news coming soon… 

Board 

I’ve been working closely with our Interim Chair, Lucy Colenso, and the rest of our Trustees to strengthen our governance and bring new skills and expertise into the team.  I am pleased to say that we have recently been joined by Emma Stone.  Emma is a qualified finance professional who works as Head of Finance at the Motor Insurance Bureau.  Emma has a very personal connection to tinnitus and joins us at a time when professional financial expertise is a much welcome addition to the team. 

We also have two other appointments to announce soon, including a new Chair of Trustees.  We are going through the final stages with them now so will be making this very exciting announcement soon. 

Tinnitus Week 

Tinnitus Week was very successful for raising the profile of tinnitus across the UK.  Our report, which highlighted the lack of confidence reported by audiologists when addressing tinnitus, and the waiting times experienced by people with tinnitus, received widespread support and propelled us into the media where we had the opportunity to expand on the subject, and raise these and other important issues.  I would like to thank Sonja Jones and Dr James Jackson for their work on the report and for their starring roles in front of cameras and microphones as we shared the story across the UK.   

We held a fantastic event in London during Tinnitus Week and it was great to meet so many people in person, sharing common ground and aligning ideas, plans and thoughts.  I felt, for the first time, the true power of the community and the sense of a collective ambition to address the key challenges we face, to create better outcomes for people with tinnitus.  I felt honoured to be leading this organisation which enjoys such an incredible amount of passion and enthusiasm from some amazing people and organisations. 

Informed by our strategic planning and inspired by the Tinnitus Week report, we are busy building a compelling programme of training and development events for professionals and for those interested in learning more about tinnitus.  Events will include the Tinnitus Information Roadshows, where people can get practical support and guidance for tinnitus, and training courses for professionals to improve confidence and skills so they can deliver better care to people with tinnitus. 

Conference 

This year, our conference will be bigger and better than ever before, and the programme is already looking very exciting.  This will be a hybrid event, in person in Birmingham and online for those joining from across the UK and around the globe.  Last year we had people from 36 different countries… I wonder if we can beat that?! 

As you can see, it’s been a busy six months, so I’ll stop there for now.  It’s been a journey of discovery as I get to meet more and more people, organisations, institutions and learn more about tinnitus. 

I have never been more aware of my own tinnitus.  There have been moments where I wonder whether I have done the right thing by moving into a life where I think about nothing else.  For the past 11 years since getting tinnitus, I have very rarely thought about it, let alone discussed it with anyone.  It only really bothered me at night, first thing in the morning and on the odd occasion where it did crop up in conversation or for some reason I thought about it, and then it’s the loudest thing in the room (as it is now!). 

Now, I have had to get used to it all over again, I’ve been inspired by the many people I have met with tinnitus, all at different stages of their own journey, which has really helped me through this new stage of my tinnitus journey.  But where I have experienced the real power has been at the Tinnitus Support Groups I have been privileged to attend, the Tinnitus UK helpline calls I have shadowed and meeting people in our online sessions.  The impact of these has been truly remarkable – I am in awe of the people who run the services and groups, and my sincerest gratitude goes to you all. 

That inspiration has even led to us setting up (or re-establishing) a Tinnitus UK led support group in Sheffield.  I’ll be leading this myself, with a lot of help from some special friends and colleagues.  I hope we can help others of course, but it’ll also be a useful learning opportunity for me personally in what it takes to run a support group. 

Finally, I would like to recognise the hard work and dedication from our team, our employees and our incredible volunteers – all pulling together to get Tinnitus UK back on track and heading for a bright new future. 

Thanks to everyone for your continued support. 

Alex