I have had Tins for about 3 years . It started in the left ear and has got progressively worse. It is now in both ears. At best it is like constant white noise at its worst it is like a Chinook Helicopter in my head. The pitch and severity varies through out the day. I am unable to do anything when it is severe.
My question is. Having just started this journey. I find that service providers do not understand the difference between hearing loss and Tinnitus and think that the Equalities Act 2010 Section 20 adjustments are the same. that is of course if they have made any adjustments in the first place, so is it just me or do other tins sufferers feel that we are not being treated fairly or inaccordance with the law ? I would like to hear what other sufferers think and of any specific experiences with service providers, Good or bad. TIA
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Tinssufferer1
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I’m a bit puzzled by your reference to “service providers”. Reading between the lines, you are having a problem with a service provider who takes no notice of your tinnitus - I think if you ring Tinnitus UK and explain to the responder what your issue is, they might be able to guide you.
Having no legs, being blind, and having cancer can all be chronic conditions. That does not make them any less of a disability . It is about how the condition affects your daily life.
The definition of disability is to be found in section 6 of EA 2010 .
Hearing loss (including tinnitus ) is a specified disability in the Judicial College Equal Treatment Book April 2023.
Let me rephrase the question a d provide 3 examples
Do you as a Tinnitus sufferer, feel you have been placed at a disadvantage by, Lets say your ; Doctors booking systems . Because trying to get through using Relay UK means that you are always at the end of the Queue Or that an insurance company insists on calling you on the phone even though you cannot hear the phone ring. Or you attend an interview with The Job centre and they put you a booth where all you can hear is other people giving out thier personal details instead of the Interviewer on the other side of the screen .
I have been in contact with TUK but I want to hear other people's experiences . So thanks for your comments but that was not the point of the question .
Good point!!! i was given a phone number to call to speak to someone about my Tinnitus as a referral, no other avenues, online chat would be more helpful, so i havent done this, when you ring a Dr i can hardly hear them whereas not so long ago you could make an appointment online, even the receptionists dont seem to appreciate how hard it is to hear when you have T despite explaining, i also have had to ask a Dr and ENT to please speak a bit louder even though they know why i am sitting in their office,!! I also have an OH appointment on the phone soon so am hoping i can hear them if not i will have to arrange an alternative means to communicate.
Thank you Seabob, I get the same sort of experience.
At the ENT clinic . I sat for 30 minutes waiting for my appointment. When I went to question the delay at the reception. They told me they had been calling my name out for 10 minutes.
I had to bite my tongue.
And that was the ENT clinic. FFS.
I wondered if it was thier attempt to see if I was actually hard of hearing or just putting it on. Why didn't they have an LED display ?
Do you think that many sufferers get a similar experience but feel unsure about how to demand thier legal rights ?
Oh for crying out loud🙄🙄 so many people are hard of hearing and have Tinnitus, and as you rightly said earlier these service providers could think a bit more about the service!!! when you are already vulnerable and emotional (me) its extremely hard to ask someone who is supposed to be helping you to speak up!!!! i feel very humiliated!!! this reminds me when i went for my hearing test and the 12 year old who took the exam, i had to ask her to speak up, yes i should think from our own experiences we are far from alone, i guess a starting place would be to write a polite letter to the various service providers where we have had problems, i remember again how we used to have LED names on a screen, maybe they cant do that anymore??? data protection?? but you missing your name and them not checking you were there as you would have signed in!!!
I have issued over 20 Freedom of information act requests to everything from the Police , DWP , NHS to local councils.
The results are shocking, only 1 organisation carried out any deaf awareness training. Its becuase of this that I am interested in sufferers real life experiences. so thanks for you replies.
I understand you now, thank you for your explanation.
There is nothing that any service provider can offer me that would help with the tinnitus in my view.
Deafness however is another issue entirely. Until fairly recently I found phone conversations difficult but each time I said (as I always did) “could you speak a little more clearly and slowly as I am hard of hearing” everyone complies. Unlike another poster, I do not find this humiliating it’s just normal human inter reactions. I’m short-sighted and don’t find it humiliating to ask others to help me read a notice that’s a bit far away. I’m also very short and have difficulties with products on high shelves but people are always very helpful.
I’ve recently got new hearing aids though and these are much clearer. Phone calls are bluetoothed to my ears. Also, many public buildings are wired for hearing aids.
But this is nothing to do with tinnitus.
I’m not sure that any public body or their staff would be able to cater for ALL the problems which people suffer from -:let’s face it, most people once they are in their fifties have some difficulty or other whether it’s arthritis or hearing or or sight. And most girls and young women are in pain because of their periods for three days each month but don’t expect any special consideration.
I don’t regard the different things I suffer from as “disabilities”.
People in their fifties is getting on for half the population. But when people are asked they are always responsive - in my experience.
Thanks for your response. It very much reflects what I hear from the Support groups I have attended.
I think we all agree that Hearing loss and Tinnitus symptoms are different for everyone. Having said that . The ability to read an instruction resolves all of my issues. When I need a service.
I can go shopping because I can read the product packet and I read the till display . I can use the train or underground because there is a moving display that tells me where and when to get on an when to get off .
In fact if any one calls me between 0800 and 1000 hrs every day before my medication starts to work I can hear the phone ring and I can hear the person calling me. Yet even though my Doctor has been told about this . They continue to ring me after 1300hrs and the appointment gets missed.
So as an example . Is it a reasonable for the Dr to ring me between 0800 and 1000hrs? Would that be cheaper and more effective than insisting on a f2f with the doctor and insisting ( as is my legal right) that they provide a Speech to text reporter???
at my doctors surgery there are five doctors, ten paramedics/nurses/pharmacists/social,prescribers and some20 support staff so to get all these clued up would be a challenge if your surgery is anything like mine - and, indeed, they share consultations between themselves and three others, so that’s about 150 people. They have a mechanism on the front page of one’s notes (at least on my daughter’s notes for a different purpose) that a patient needs to be deal with in a particular way.
Again, at my surgery, if you visit the surgery you can ask to speak to a receptionist in private (rather than have her shout at you) and ask for special consideration.
But again in my view this is simple considerate social interaction and not the law, and has nothing to do with tinnitus.
There is a “deaf” community within Health Unlocked though I haven’t looked at it.
It is not a privilege. It is the Doctors duty . the Doctor is a section 29 service provider.
The NHS has an obligation to anticipate the needs of Tinnitus sufferers and also the differing needs of the hearing impaired and then implement those adjustments as per section 20 .
Ignorance of the law is no defence.
The support group I attended were surprised by these facts. So they had never even thought to ask for any adjustments . They just accepted what they were given.
I recognise that people such as yourself may not feel that their symptoms warrant asking the service providers for adjustments. But there are many people, me included, who expect the providers to act within the law.
There will of course be sufferers who are frightened to ask that their Doctor implementvchanges for fear of being "blacklisted". But victimisation of a sufferer or their carer is an offence under the EA 2010.
The rules have been in place for 13 years . So there really is no excuse for sufferers not to have the adjustments they are entitled to.
I see your point about deafness certainly, and of course they should be making adjustments for you. That’s why I said speak to the receptionist.
But there is no way that my tinnitus requires adjustment from anyone, and I don’t see that anyone else’s would either.
of course if someone has mental distress because of tinnitus, and the mental distress needs an organisation to make adjustments, then that’s a different issue.
I am very interested by your 2nd Paragraph. What makes you think that other people suffer Tinnitus in the same way as you? It seems to me that Tinnitus is very personal it's like pain. People have different thresholds some people can tolerate levels of pain that would make my eyes water.
The "Relief " App for Tinnitus Sufferers by "Resound GN". On Android. Has more than 10, 000 combinations of audible relief patterns and that's before you adjust the volume .
If my Tinnitus is at 5 out of 10 (that is 5 out of 10 on my scale not your scale ) . Unless I can lipread . Speaking to a receptionist is pointless unless they can write all their responses down and then show them to me.
I suppose I could use sign language but what if the receptionist doesn't understand sign language?
Do I have to take an Interpreter with me? No!. Why not? Because it is the service providers job to make the adjustments not mine. That's the law .
I’m aware that the sounds T makes vary by person, and I’m very interested indeed in what you say - tinnitus means that you cannot hear? That’s deafness to me.
Yes if you can’t hear the receptionist then of course she or he must write it down!
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