What do tinnitus patients want?

Hello there. My name is James Jackson, I am a reader in psychology at Leeds Trinity University and I’m recording this session today to look at what tinnitus patients actually want, which is very different from what they actually get. Now, I’m based in the UK, north of England, so for that reason this is going to take on a UK point of view, but I think a lot of lessons can be transferred to wherever you might be. Now, you will find, generally speaking, that if someone, a tinnitus goes to see their doctor their general practitioner in the UK, they may find themselves, if they talk about their tinnitus being referred to ent, ear, nose and throat and or audiology for is there a reason behind why you have tinnitus? Is there tumor in the ear, is there some other condition is their ear that you know there are reason for it? And then they may get referred on with to an audiologist for possible hearing loss, etcera and maybe further down the line, specific appointments to talk about their tinnitus. Now, in some NHS trusts, if they’re quite quick, you might go from GP to tinnitus. Appointment could be as little as three months, but in some cases it could be nine months to a year. Its very much of a lottery based on where you are in the UK, but we’ll bear that in mind as we go through the rest of this talk. Now, I’m a psychologist I’ve researched tinnitus but because, long story short, I caught measles as a child which resulted in a running problem with my hearing, leading to a bilateral catastrophic hearing loss when I was about 18 years of age that resulted in the loss of about 85 to 90 decibels in each year. I wear hearing aids and I’ve had tinnitus for the long as remember. So when I had an opportunity to stay on and do a PhD in psychology, that I very much wanted to pick tinnitus because it was something I was definitely struggling with at the time. Now, if you want to intervene to help someone with tinnitus, there’s the realization that tinnitus is extremely common in the UK. We may be looking at 1 in 7 people 7 million plus people, 1 in every 30 children, 8% of the working population, the military, musicians, noisy environment and maybe about 15% of people who’ve retired. But it’s very common, it’s out there. And strangely there little funding and there are few treatments. And the treatments that exist, generally speaking, are about helping people to cope with the condition. And there isn’t really anything out there reliably for all people that could help cure it. There are a few interesting avenues and I think some of the people will be talking about that in the rest of these sessions. But for now we’re looking at helping people to cope. Now if we go back if fe 1984, I find it’s interesting to spot to note the difference between tinnitus as an internally generated noise, basically as a result of the damaged ear and an external sound. So Boen Miekle was one of a number of people looking at back in the 80s this idea of trying to replicate a noise by playing tones outside the body. Is your tinnitus louder than this? Is it louder than that? Does it sound a bit like this one? And found that 90% of people indicated that their tinnitus was very quiet, tiny, tiny noise. When we know in occupational psychology then sounds need to be about 70 to 80 decibels in an office before it really starts to interfere with concentration. But tinnitus affects concentration. So sum things up. But what was interesting is that this research group also asked people on a scale of 1 to 10, how distressing is it? So we find 57% of people described as severe, another third moderately distressing. So just because it sounds a bit like a quiet external noise, it’s an internal noise over which we lack control. It is much more distressing. Distressing to the point that about 50% of people with tinnitus can be assumed to have at least one other psychological condition, whether clinical depression, clinical anxiety, insomnia and sleep difficulties are perhaps some combination of those three. And at the moment, even if you go back to that classic paper from them, the late David Baguley and you know, various sort of names in the field, then we find that there isn’t a cure for tinnitus Lots of people have it. Why is this there? A couple of reasons. First of all, there isn’t really an ability to have an objective outside marker of what somebody is feeling with regard to the tinnitus being able to sense in their head. And at the same time a lot of people have tinnitus, there a lot of different causes. So can they all be treated in the same way? A lot of complexity. And as soon as you get anywhere into the tinnitus field it gets quite complicated quite quickly. But there are significant challenges to research. Based on some of my research that’s upcoming and in preparation then I asked 358 people who specifically in the UK, went to see their doctor their general practitioner about their tinnitus, how satisfied were they with that initial appointment? So we have these scores. Each statement on the left hand side, the one at the top, the first healthcare professional I saw was honest but positive. So you find out who’s strongly disagreed, disagreed or neutral or agreed or strongly agreed. If we take everyone who agree or strongly agree with that statement and we look at some of these, we find satisfaction is about 40%. So the practitioner, honest and positive they listened to me, they treated me as an individual, I was satisfied about 40%. Which means if you want to keep to this strict criteria, 60% are not satisfied. Now, if we look at some of these, perhaps more interested to the audiologist who are here today or listening to this later being referred to secondary diagnostic services, ie audiology, without having to fight for it, it’s about 47%. So not everybody will seek help. Of those that seek help from their GP, a little less than half will move on to the next stage and see people and speaking. It could be more or it should be more, but it’s better than I feared, if I’m honest. This other one, did the healthcare professional discuss distress and helpful strategies. This is lower. So 25% of people agreed with that statement. That means that 75% of people who saw their GP about tinnitus did not discuss tinnitus distress and did not discuss helpful strategies. As other psychologists knowing currently that the main tool in the box are psychological interventions such as CBT acceptance, act, mindfulness, things like that. This really disappointed to find that with this one, 8% of people were referred on to the psychologist later. I think this is ruing for the simple reason that I like to talk about tinnitus have been like a bereavement. There’s a sense of having to accept that your life before tinnitus has ended and you have to accept that in order to move on and it’s very much of a challenge. Personally, it took me many years and I’m happy to say flirtation with alcoholism in order to get through that and for only 8% to see a psychologist or some for psychological therapy, to my mind is very much. We put a weak spot now we took these people and I interviewed 10 of them in order to actually see where are these scores coming from. So 10 qualitative interviews and about, about eight hours of interview content and came up with a few themes. So one of them taken from one of the crows it’s like suffering silently but it’s not silent. A sense of you’ve been on your own and struggling. So participants reported that the tinnitus had real noticeable effects on their physical and their mental health and their well being. And again this sense of bereavement with that sort of having to accept things is a real difference in how people consider their life before and after realizing that they had the condition. And probably the most problematic aspect of it is that when they spoke with healthcare professionals there a sense it was all about the diagnosis. Why do you have tinnitus? Do you have a hearing loss? Is there an issue with the ear? We need you to have a scan in this one ear. There might be tumor or other complicated causes that we need to get to and the act of actually having tinnitus and dealing with that is pushed off to one side which is not what a tinnitus patient wants. So breaking the themes down a little more is the clear that this focus on why you have tinnitus is seem had been quite distressing. The idea that healthcare attention is all about this why and that the person you’re seeing does not understand how it’s making you feel and how distressed you are and how it’s affecting your ability to live your life. All participants report in quite intense feelings of anxiety, depression, suicidal ideation all as a result of having tinnitus. So it’s less about the cause but more about wanting help and to be supported. So represented by comments such as it feels sometimes like you’ve just reached the end of the line. There is nowhere to go to seek help for the tinnitus. Everybody’s just interested in why you have it. So breaking down that theme again, self management of tinnitus. It’s interesting that over time people will accept the condition. Could be years, could be many years. But this acceptance of the condition help participants to control their negative thoughts, their fears about oh it’s going to get worse, I won’t be able to coe, my hearing will go all these associated negative third thoughts and allow people to if not necessarily gaining control but feel able to manage it. And what’s telling and very disappointing in every case of my interviewees this was achieve through people learning about tinnitus themselves, seeking help, going online, not through but seems to be the limited advice that was given to them by healthcare professionals. So comments such as I had to have to come to terms with the fact that these are my ears forever. So habituation is a personal journey. And they’re not helping people, they’re essentially helping themselves. The second them, they’ve got the impression, this is no big deal. People tinnitus, absolutely need to be reassured every step of the way, that the condition is real, their feelings and their distress is real. And people were reported that the lack of recognition of this despair, of this distress was really distressing. Now a participant remembers a GP saying, your normal suck it up. I don’t think this all the GP said, but it’s certainly what the patient remembers and feels about that. Now, when we get to psychological concepts of support, people might think, oh, you can be socially supported or you might not be socially supported. But there’s a third there, the concept of being unsupported. This is when you go to seek help and you don’t get it and you’re dismissed. So people find themselves out in the street with the worst possible words ringing in their head. Something along the lines of there’s no cure for that, you’re just going to have to live with it. That’s very damaging. As people work their way down the chain and they say ENT, audiology, etc. These comments come through and people feel that there is nowhere to go. So one thing is for certain, that if you are a healthcare professional. And you have tinnitus. There is a lot to gain from sharing the fact that you have tinnitus and you are coming to this from a place of understanding. I don’t recommend that you fib if you don’t have it, but if you do have it, it means people think that you might be understanding how they feel. Because what patients with tinnitus need above all, empathy. Now, I’ll talk a little bit at the end about this again in some more detail, but the difference between being sympathetic, meaning that you’re pitying people and being empathetic, and that your understanding people are completely different things and people with tinnitus do not see a lot of empathy in their journey through the primary care pathway. So this need is here and you find there’s no treatment plan. There may well be. Let’s see if you’re hearing. Let’s give you some hearing aid that give you some sound, sound therapy. Let’s look to see whether there are ways we can enrich the world around you and you have other things to listen to. But there’s nothing about helping people cope and accept their feelings and the condition itself. We’ve been. People withdraw quite clearly from healthcare professionals and are no longer interested in anything that they have to say. So a five year battle just to get information. But this other one was interesting. She was so kind and compassionate to get through anything. If you meet a person who understands you, this is someone who didn’t really know where to go, but they went through Tinnitus UK to a self help group. The person speaking there was a hearing therapist in the UK. You don’t see many of them now, but they used to be more of a thing. And she saw the woman at the end. How, how can I see you went back to the GP, explained that this woman exists, got a referral, saw her for one hour and described this lady as being empathy and understanding itself and just having the hour to talk things through meant that my participant reported that they didn’t have to see anybody else about their tinnitus for three and a half years before it felt necessary to talk to somebody again. So empathy and understanding can go a long way. So clinical aims is you must avoid telling people that nothing can be done, it’s so damaging. But otherwise it’s about reducing distress and aiding habituation, which will happen to most people eventually, usually, under their own power, rather than being helped by researchers and healthcare professionals. So we can do more in the UK with the NHS, we have things called NICE guidelines Now I’ve got to remember I believe that the national or clinical excellence it’s about working out what’s an effective treatment and cost effective what do we do first. And since 2020 the NHS have been recognizing that psychological therapies are an effective cost effective and should be provided treatment for people with tinnitus. So it can be you know digital online, CBT provided by the psychologists or group based interventions using mindfulness, acceptance, commitment, CBT whether it’s group, whether it’s individual, online can be just as effective if you have captions and no issues with hearing. But a lot of psychologists aren’t available so in the UK we have these issue and audiologists may find that their job is expanding rapidly into counselling. So there are gaps between willingness to do so, training, confidence, competence and there aren’t really any courses out there that are probably accredited by the right professional bodies though I’m not looking to change that. But it means psycho-education for tinnitus is key. People need to be given information as early as possible and they need to explain the processes which lead to tinnitus. What coping strategies are why some work more than others for different people at different times. That’s a whole discipline in itself. And importantly that it takes months for people to be told this before you start to see behaviour changes and people acting on that. So, so when you’ve got the doctor ENT somebody about tinnitus months the earlier people get access to education and information and the better they understand it, the more purposeful the meetings, the later appointments become. So you have tinnitus treatment pathways, there’s delays and treatment will take some time. But what is also interesting, if people are in a waiting list for an appointment you actually start to see a reduction in tinnitus distress. Whether it’s an increased awareness, coping skills, being a bit less worried because you feel you might get answers even though you may not. Let’s not forget I’ve had participants in that study being told things like oh if only you were deaf I could have helped you. And that’s not something that you want to say when someone then left outside alone struggling with their tinnitus but a sense of if not habituating that awareness and understanding that can lead to an improvement. Which is why I’m personally a big believer in mindfulness. I’m one of several examples of psychological intervention. An article and we research paper about published recently about mindfulness. But you find that it is about living in the present. And this talk isn’t about mindfulness, but people who I’m spending more time worrying about the future than observing what’s happening in the present. worry anxiety is a future orientated emotion catastrophizing rumination there about it’s bad now it’ll be worth tomorrow I won’t cope my life won’t be worth living. And this feeling of the future leads to ineffective coping strategies that don’t help and as a trait leads to poor mental health and wellbeing. If you can improve people’s mindfulness through practice, you start to see more positive appraisals and working toward the acceptance of the condition. And people who do get mindfulness do say but they do tend to provide anecdotal feedback which don’t ask for but they go o that was really helpful. I’m very grateful for this. And once you teach people how to be more mindful, even if it’s just with the guard to their tinnitus, it leach you into all other areas of people’s lives. So it’s one type of intervention which can be very beneficial. But you also need the education at the start for expectations and for people to understand why you’re doing what you’re doing. So it means when people are waiting for appointments, there are arrays of delivering things online that could be using that time that it otherwise rate it. So there are many self help resources available, some of it evidence based. And what is definitely true is that while you can you make something up that looks like an intervention that might not work, you find that if you know what you’re doing and you guide people scaffolding through things bit by bit, it’s much more valuable than people just going to Google and typing stuff in. It helps to build up a foundation and a skill set. So I have eight podcasts really taking people through basic body scans of mindfulness, going through to well let’s say intermediate things, nothing advanced there. There’s all actually relatively open source but put them in a podcast visual imagery, captions, music in the background. And people watch these four times a week for eight weeks, getting a new one every week. And you can see a clinically significant improvement in a third of people in about two months shown in the paper. So if people are waiting for appointment there are things they can do. Now I’ve worked in the past with Tinnibot, which is by Hearing Power Tinni Bot, now known as MindEar. But I know there are other smartphone apps that people will be talking about Those I’m only mentioning this one through personal experience and while I’ve worked with them to the grant together, I’m not paid by them, I’m not part of the company or anything. But to give an example in that we’re working on 50,000 Australian dollars grant in order to work together and look at the effectiveness of smartphone applications. This one again there are others and the work that we’ve done has allowed it to step forward. So it’s now referred to as min der and you might see more about that in another talk. But these are a Tinnibot pictures, chatbot education, some Internet based CBT goal setting some sound therapy things you could use and mindful exercises that I originally provided that can be used. Some of it behind descriptions, some of it isn’t. But apps like this one, not only this one, apps like this one can be a gateway to understanding and education but allow people to seek out things that they approve of. So in terms of conclusions, we would never ever under any circumstances tell some of it tinnitus that it’s uncurable and that they’ll just have to live with it. There is value in empathy training workshops in order to allow people to say the right things and promote and illustrate their understanding of a tinnitus patient rather than just pitying them. And be aware that basic tinnitus information takes time to take. So you’ve got to think about where in the process do people get information and referral advice, where are they going to go eventually so that when they work down the pipeline they’re mentally prepped for what comes next and have learned a few things about the condition before they discuss the condition. Because ultimately people will find their own information online and they will habituate. But as in my case it took a decade, it could easily take more. So a few quick words at the start, correct supportive empathetic conversations could cut this down by years. So for anybody that works with some of a tinnitus you need to know what online resources are out there that people could make use of between appointments. And you need to know your facts. So you need to know what has an evidence base. You don’t need to do it, you don’t need to give people cognitive behavioral therapy without three years of training. And you really do need to be trained because 10% of CBT actually has negative effects. So you need to be very careful with they, they cant be dispensed by people who’ve done a bit can get quite dangerous. But you need to know who you can refer people to or say. But actually I understand that this can be quite effective. Why don’t you try that? So don’t keep people when you can move them onto someone who might have a better chance otherwise. When it comes to concluding the game, knowing your skill set. I got ahead of myself. Is a professional act. Know what you can do, what you can’t do and be aware that if you reach the limits of your knowledge, referring somebody on is the right thing to do. It’s professional and it’s good practice. So otherwise like I say empathy is key. Even if you just have an empathetic conversation and allow people to explain how they feel. For you to approach that with understanding that alone can be hugely beneficial, let alone all the interventions and stuff come later because that’s what people want. People with tinnitus want to be understood. They want to be talked to about their tinnitus. Not necessarily what causing it which the medical profession would run off to but that they have tinnitus. How did it make them feel? Tell them that you understand that why they feel that way and you were re able to provide some information and some evidence based hope so hopefully it less than half an hour. Thank you very much for your time. My email is there if anybody wants to get in touch. Otherwise take good care and thank you for listening.