The lowdown on tinnitus support groups

Support groups are like snowflakes; no two are the same.

However, they all have one thing in common – they are a great place to meet people who can share experiences, personal tips, and emotional support.

Going along to a group for the first time can be a daunting prospect for anyone so I asked support group leaders and attendees to shed a little light on what to expect.

Claire, organiser – Margate/Ramsgate

When somebody new arrives, they are put with a ‘buddy’ to sit with and at the start of the meeting I introduce them. If I have not met or spoken to them previously, I will leave my volunteer to chat to people coming in, and speak to the new person so I can get an idea of what they are looking for from the group and the best person for them to sit with.

Everybody gets a name badge when they arrive including a picture of something they love e.g. cat, flower, car etc., which makes for a good opener to a conversation. When we stop for a break, I usually will ask a couple of the regular group members if they can have a chat with anyone new, so nobody is left sitting on their own, and we will make sure they have a drink.

I am very lucky that my groups are very friendly and if any of the group see somebody on their own, they will go and chat.

Each session I have a plan for the meeting; however if the meeting seems to be diverting off down another route, then I will go with what the group want.

This is particularly true if a new member arrives, as in some cases the person might want to chat about their tinnitus and get some advice or have lots of questions.

Other people would rather just sit and listen and I will have found this out when they first arrive so I can work around this so they go away hopefully having gained something from the meeting

Marc, attendee/volunteer – Redbridge

Richard, facilitator – Redbridge

I’ve had tinnitus for over 10 years now. I manage it well and have a great life. Sometimes it doesn’t bother me at all, and sometimes it plays up, causing me anxiety. Wherever I’m at, it’s reassuring to know there are other people out there who also have to manage their tinnitus on a day-to-day basis.

We have really great guest speakers who cover a range of topics from scientific research to practical advice. We also have weekly discussions where people have the opportunity to share. It’s a safe space for support, reassurance and community.

As a group we have created a safe place. When we first started the group we had a session on ground rules and what was important to establish as a group. From this we have a big flip-chart piece of paper on the wall with the rules agreed by the group. This is really important to remind people every week of the ground rules and to keep the group friendly and respectful so everyone benefits and feels safe and included. As an employee of Action on Hearing Loss I’ve also attended many courses on safeguarding, confidentiality and GDPR so at the start of each group, we reiterate the need for confidentiality and remind the attendees that whatever is discussed in the room stays in the room.

Both Nicola and Marc have also been instrumental in helping to establish these ground rules, which I’ve learnt are the backbone in establishing and running a successful support group. Hopefully in Redbridge I think we’ve achieved this with the help of the volunteers.

Richard, organiser, North London

Our group meets up 4 times a year, which keeps things fresh in terms of finding interesting speakers to present on the night. I sometimes ask the group who they would like to hear from. Other times I invite someone whom I am personally interested in hearing from. The first half of the meeting is always a presentation. This could be anything from managing the psychological impact of tinnitus, to the latest clinical trials that are happening. This year we have had some amazing speakers. There has been a practitioner talking about mindfulness, a representative from a hearing protection company, and also a presentation from Bose UK (who make various devices to assist with better hearing). We always make time to incorporate a Q and A session at the end of each presentation.

The second half of the meeting is always a general group discussion about anything that’s on people’s minds. This is usually a good opportunity for people who have just got tinnitus to ask more experienced members of the group how they manage the effects of tinnitus in their day-to-day lives.

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