Do I Have to Pay Several Hundreds Pounds for a Correct Diagnosis?

[JC1859]

I apologise for starting several threads, but I've done as much research as I can and can't find the exact answers.

My question here is to ask is Jacqui Sheldrake the only person that I can get an accurate diagnosis from, with me being based in England? The impression I am getting is that only people on that list of ''Members of TRTA'' that is found on www.hyperacusis.net are the ones knowledgeable enough, but I've read an initial consultation is several hundred pounds? Or is there some other person I can use?

Thanks, guys.

 

[JC1859]

Anyone?

 

[Joseph Harney]

Hi.

Hang tight i'm sure someone will get back to you asap.

Joe

 

[PhilB]

Maybe the reason for lack of responses is because your question is somewhat ambiguous. You have referred to the list at http://www.tinnitus-pjj.com/referral.html which is a list of people who have trained in TRT under Dr. Pawel Jastreboff and Dr. Jonathan Hazell. These are not the only people who are qualified to diagnose tinnitus and hyperacusis. In fact T and H are quite easy to diagnose. If you hear ringing in your ears, you have T. If you experience troublesome sensitivity to certain types of sound, then you have H. Any GP or ENT should be able to tell you that.

TRT (Tinnitus Retraining Therapy) is a specific type of CBT (Cognitive Behavioural Therapy) designed to help people who suffer from Tinnitus. It involves a series of structured counseling sessions with a TRT practitioner. For an example of what the TRT program might cover (and how it might be structured), see Table 14 at http://oto.sagepub.com/content/151/2_suppl/S1.full.pdf+html.

You do not necessarily have to pay a lot of money to get TRT. Depending on whereabouts in the UK you live, you may find that TRT (or something purporting to be TRT) is available on the NHS. In my experience, TRT means different things to different people and you get what you pay for. When I enquired about TRT via the NHS, I was given a pair of in-ear white noise generators and a set of leaflets and told that this was TRT. But most people believe that TRT cannot be self-administered. I recall that @Dr. Nagler has said this. TRT should involve a series of structured interactions designed to achieve specific goals. I don't mean this as a criticism of the NHS. They have limited resources and they do the best they can but it is not difficult to imagine that TRT for T-sufferers comes some way down their list of priorities. I'm afraid I cannot offer any comment on the quality of the TRT provided by Jacqui Sheldrake. I have seen different opinions expressed on T forums about her treatment (some complimentary and others less so). Not sure if any of this helps you at all...

 

[Steve]

Hi JC,

As Phil outlined above, you should be going to the NHS to get your diagnosis. They aren't perfect and mostly don't understand tinnitus but you will get examined to rule out a few things first and also get a hearing test (albeit probably only up to 8KHz).

From there you will get some options, unfortunately they will likely be quite limited, unless you are lucky and have a really clued up ENT or audiology department. This is a must-do first step. You need to be insistent that they offer you something to help, if you get the attitude of "go home and learn to live with it" ask for a second opinion as this means you have a specialist who knows nothing about the condition.

After the above you should begin to look at the further options, taking into consideration a private practitioner.

 

[JC1859]

Thanks, guys, but I'm still no clearer.

Philb,

You say go to the NHS as H is easy to diagnose, but all I hear is about how clueless most practitioners are. You even sort of allude to that yourself when you say their idea of TRT was to give you an in-ear generator and off you go, although maybe I am misreading your tone, apologies if so. I've seen an ENT and he appeared clueless. The term ''Hyperacusis'' was only discussed when I brought it up, and his advice was he ''thought it would get better.'' You also say TRT is available on the NHS, but again, I've read this is nowhere near as efficient as going privately, which is an outrageous and prohibitive cost.

Steve,

You say that the NHS are clueless also, and that getting someone who knows about H is a matter of luck. You can't insist the ENT not send you away without helping you as, in my experience, he'll just sit there with a blank luck on his face.

Thanks for both your replies, but like I say, I still am no clearer. The only thing I can probably take away is that you're both saying paying over two thousand pounds for therapy is the only solution, which is an absolute joke, in my opinion, and anybody that charges that should hang their heads in shame.

 

[PhilB]

@JC1859 - If I don't seem particularly angry about the variable quality of NHS provision for T sufferers, then it is probably because I never really expected that the NHS would be able to help me very much with my T. Perhaps my only complaint would be that I initially sought help for T very soon after the onset and there may have been an opportunity to treat it with a course of steroids at that point. This opportunity was missed because it took several visits to the GP before I got an ENT referral and by that point the window of opportunity (for steroid treatment) had long passed. I can't comment much about hyperacusis because my own H is pretty mild and fortunately I have not felt the need to seek medical treatment for H.

My point about diagnosis (without intending to be flippant) was that as T sufferers and H sufferers, we do not need anybody else to tell us that we have these conditions. What we need from our GPs or primary care providers is to be given access to the best available treatment for these conditions. Like @Steve pointed out, it is sometimes necessary to be persistent in order to avoid being fobbed off. I didn't get anything worthy of the name "TRT" from the NHS but I would be interested to know if any other UK forum members have had TRT from the NHS. I would imagine that there is great regional variation in the quality of provision.

Having said all that, I suspect you are probably right that if you want good quality TRT, you will end up having to pay for it and it won't be cheap. Even so, I don't think Jacqui Sheldrake is your only option. The Tinnitus Clinic offer something which they call "Tinnitus Desensitisation Therapy" or TDT. I suspect that this is just a re-branded, proprietary version of TRT because it sounds pretty similar. I don't know how much it costs but you may want to look into it.

 

[Steve]

I'm not saying that the NHS are useless, just that there is an unfortunate lack of awareness regarding treatments.

What they do have is the capability to explore some of the potential reasons behind your tinnitus and the capability to give you a diagnosis.

You really do need to give them a chance. They are the first place you should turn to.

If your ENT looks blank when you ask for a second opinion then ask your GP, ask to be referred to an audiologist. You have a right to question them if you feel like they have not given you a proper service or discussed treatment options. We pay for the NHS through our taxes so it is a long way from a free organisation, you don't need to put up with a poor service if you receive it.

 

[JC1859]

Thanks, both.