"Life-long hearing problems"

I have an extensive, clinical, childhood history of hearing loss and eustachian tube dysfunction. This has been with me since the age of 4 and I carry symptoms, which can vary in both type, occurrence and intensity. I've lived with it my entire life.  Most of the time my symptoms are mild and I have not bothered the NHS with it.  Instead I have built coping strategies of my own including self medication when required e.g. daily sudafed, ibuprofen and nytol - to help me sleep. 

Due to the symptoms of variable hearing loss, I have become labelled by my family, friends and work colleagues as 'deaf' but also lately and more negatively as 'selectively deaf' or 'ignorant'. These last 2 descriptions are not true. Recently, the children I teach at school have noticed I cannot hear them and now the symptoms have impacted on my work. It appears my hearing is only getting worse. I am so tired of having to ask people to repeat what they have said and the look on their faces tell me that they are tired of repeating it.

So I went for a hearing test at Boots and they found significant hearing loss in one ear and the other mild hearing loss.  (it's much easier and free and quick to have a hearing test at Boots than try to get one through the NHS). Boots wrote me a letter to give to the GP and I asked for a referral to a consultant in December 2019.

In June 2020 I finally spoke to a consultant (I appreciate the COVID situation and was very understanding and patient). They seemed interested in helping me, booked an MRI and an appointment with an audiologist.  Finally, I thought, for the first time someone is looking to help me. We discussed dizziness, we discussed tinnitus, we discussed it all. I felt very positive.  Until the results of the MRI and audiologist.

The MRI took place in July 2020 (very quick!) and the audiologist much later.  The audiologist seemed to know nothing about my situation and simply did a hearing test.  Why do I have to explain it all to everyone at the NHS, every time? Don't you guys keep a record and read it? Compared to Boots, the test was laughable.  Boots did 3 tests, a standard test, bone-conducting test and tinnitus separation - all in a sound proof booth following an ear examination. In the NHS however I had just the one test, sat on a dining chair in the back of a truck, facing the wall with a pair of ill-fitting headphones connected to a laptop. They declared my hearing was fine and normal.  Now if this is to be believed - it's a miracle.  Apparently according to the audiologist someone with a childhood history of hearing loss and ear dysfunction, now in the middle of life, hearing actually gets better with age!  My whole life hearing tests have proved a mild to moderate and steadily declining loss. Now it seems my hearing is cured, at least that's what the laptop said. This person talked of discharging me in 6 months and couldn't see anything wrong. No further help or advice offered.

I waited on the MRI results and was contacted by letter with an appointment at 2:00 on a Tuesday. I teach and cannot answer the phone at school at this time. I phoned to re-arrange, but the receptionist would only offer Tuesdays at 2:00.  I can't take time out of work for a telephone call so I had to keep moving the Tuesday back until it fell in half term. Why? Why no movement on the time? Why 2:00 only?

I was phoned by the consultant who re-assured me that the MRI showed nothing 'sinister' as they put it.  They then asked me about the results of the audiologist. (Didn't they have them?) They said because the MRI showed nothing of significance and the audiologist showed 'normal' hearing, this consultant wanted to discharge me in 6 months too if there was no change. 

So that's it. And I've done this 'circus' of treatment twice before.  I've tried to get someone to listen, to help me deal with tinnitus, to help me with my declining hearing - which I know is real and not 'normal'. Something is definitely wrong or maladjusted with at least one of my ears and it impacts in evermore negative ways as my age increases. But who now do I turn to for help?  The NHS experience is disjointed, long, unforgiving and poorly communicated.  Boots on other hand were wonderful, caring and understanding.  YES, of course they want to sell me hearing aids. I get that. But the testing is far more thorough, quicker and professional. 

In my opinion, the NHS are not bothered with mild cases. They seem to want to get rid of them.  I understand there are people with far more serious hearing problems than me, but does that mean I don't get care? I have a significant problem which is making life and work harder for me, but it's not enough for the NHS.  'I'm afraid you'll have to live it' seems to be the recurring attitude.  And yes, that has been said to me before. So live with it, I continue to do.