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Help to convince NHS to give me the hearing aid I need

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Messages: 1 - 17 of 17
  • Message 1. 

    Posted by RoseRodent (U1896879) on Thursday, 13th January 2011

    What is my best shot at getting my audiology department to supply a different type of hearing aid from their bog standard "you live here so you get one of these regardless" models? I know they can and do do special orders, they talked about it at the start that perhaps they'd have to get me a different one if they couldn't make it work, but then something must have been said because from the next appointment on I've been crowbarred into accepting these ones as a good fit. Or, more accurately, as the "best we can do with these".

    The ones I want are now an NHS "catalogue" hearing aid, they have an NHS brand and are routinely issued in some areas, it just so happens that sadly my area is not one of them. They definitely have the programming cables and software available because they fit Phonak Naidas and they fit Phonaks on children, so that's that excuse gone too.

    Other than MSPs, PALS, all that kind of thing (PALS is useless, MSP will take months and in any case I have not yet outright asked, I want to try begging first, LOL!) what is my best strategy? Cry? Beg? Butter them up? Or just make a really good point about how much better the other hearing aids are for me and that they cost exactly the same money?

    I want them swapped because the audioshoes on these ones are a clear afterthought, they don't fit well, the programming is rubbish so you cannot use other programs without removing the shoes on both sides, you have to remove the shoes to turn them off, the e2e doesn't work with the audioshoes on which is a big problem if the volume is only on one side, they catch on my collar when I move and rip the hearing aids out, but most of all is that despite them replacing these ones over and over again, they continue to develop a loud wasp-like buzzing noise after a week or less of wear. I think it's the auto-learning feature learning my programming and then failing to be able to cope with my wonky type of loss. I have never had buzzing tinnitus before, only whistling noises and silent tinnitus, but I now have to take my hearing aids out regularly to remove the buzz or else it *causes* tinnitus. Really, you'd think that causing a new problem that a patient did not previously have would be reason enough to call these aids a dead loss for me.

    To solve the problem this time they want to bring the Siemens rep in to see if there is another Siemens they can order for me, but the whole Siemens range is based on this same audio program that locks in as soon as you put on the shoes. If the phone rings or you want to use a loop system when you are wearing and audioshoe you cannot press T, you have to remove both shoes and store them, then get to the phone. With arthritic hands this is impossible and results in a lot of loss and damage of audioshoes and the expensive FM receivers attached to them. Ironically, to supply an off-contract Siemens aid they'd actually have to pay more money than just to supply the Phonak that I want (Phonak Nathos M or Micro), and if it means I have to wait longer for repairs then so be it, at least I won't have a noise like a dying wasp going around and around inside my head.

    I don't know what is my best angle, and whether I should transfer back to the main clinic *first* and then start my quest, or if I should ask out at the accessible clinic and tell them I am prepared to travel to get what I need. OK, taxis to the other clinic are expensive and they ought to have an accessible transport option, but weighed against buying these hearing aids retail (£1,159 per ear) I'll take the hit on taxis! I'm prepared to travel to Yorkshire if they'll let me, where these are the routine issue hearing aids. I'm just at the end of my rope with this noise, and yes it's definitely in the hearing aids, my husband can hear it through a listening tube and last time I was there the audiologist heard it and issued me a new hearing aid, but again a duplicate model - I'm not optimistic that the 8th change of hearing aid will result in a cure when swaps 1-7 did not.

    Help?

    Report message1

  • Message 2

    , in reply to message 1.

    Posted by AndyfromCornwall (U14342750) on Thursday, 13th January 2011

    Cookie bite loss is notorious for being difficult to correct. It certainly sounds likely that the hearing aids are not up to it. Can you get referred to a specialist in cookie bite loss?
    Constant tinnitus is not acceptable, their job is to alleviate that at once!

    I understand that we now have the right to attend a different hospital if we wish. Although I live in Cornwall I am actually registered with a hospital in Devon. The Cornish one has better facilities for deaf people but when I asked, some years ago to transfer to them I was told I was not in their catchment area.
    I think that would now be possible although I have not tried. However the situation in Scotland may, like so many things be different to England.
    The best shot in my opinion is to just keep annoying them until they do something.
    Second best shot... try asking around the manufacturers and see if anyone has a particular program for adjusting to cookie bite loss.

    Report message2

  • Message 3

    , in reply to message 2.

    Posted by RoseRodent (U1896879) on Thursday, 13th January 2011

    I understand that we now have the right to attend a different hospital if we wish... However the situation in Scotland may, like so many things be different to England.  

    Yes, I don't think the right to go elsewhere is actually enshrined the way it is in England, but most people accept that you have a right to go anywhere else in Scotland, but you have to have super-special written on gold leaf permission to go to *shock horror* England. Even trying to see an EDS specialist in London was a nightmare, and there is no comparable clinic in Scotland, so to ask to cross the border for a hearing aid clinic is not going to fly. I don't know anywhere in Scotland that issues these Phonaks, it seems to be a Siemens monopoly, but haven't enquired across the whole network. Some will tell you on a quick enquiry what do you dispense, others try to keep up the pretense that it depends upon what you need, while happily throwing out a Siemens to every caller.

    By chance I found someone on another forum who uses the same clinic as me and has:
    - Non-Siemens hearing aids
    - Non-beige hearing aids

    Heads will roll!!!!

    Never thought of asking for a cookie-bite specialist, it would make a nice change from people looking at my audiogram and just pressing the autofit button then shrugging. *sigh*

    Report message3

  • Message 4

    , in reply to message 3.

    Posted by tishcat (U14708219) on Thursday, 13th January 2011

    i mentioned to an otherwise, excellent hearing aid tech, that it was stressful for me waitng for my appointment because they call out your name instead of having a bulletin board like my GP.
    I got the sigh as well.
    I went away thinking trhat i ought to take the trouble, to chase it up by finding out who was on the trust board or something.In the end i posted my issue on the RNID facebook page and have been assured that they will do this, or whatever, for me.
    Will report back when i hear anything as its only been a couple of days.

    Report message4

  • Message 5

    , in reply to message 1.

    Posted by IanIlly (U8801543) on Saturday, 15th January 2011

    Hi, I have been trying the Phonak Naidas and in response to a question you asked about the 'wireless' feature I can help. With an aid in each ear, there is an option to make changing the setting on one side also change the setting on the other side. This is programmable for the 'programs' and the volume. I have had mine set so that when the program is moved from one setting to another it changes both aids at the same time. I decided to leave the volume setting as an individual change on each aid. Does that make sense?

    You definitely should not have to put up with the dying wasp effect either. I know from experience that dealing with the NHS in general is a soul sapping experience. In fact I have to rely on the PALS people to make appointments at the ent clinic as there is no alternative to the telephone! I can't find words to describe the idiocy of that outcome.

    Report message5

  • Message 6

    , in reply to message 5.

    Posted by RoseRodent (U1896879) on Saturday, 15th January 2011

    Unfortunately that's definitely not it, as that feature is called "quicksync" on this range and it is definitely available on the one that is marked as not being "wireless". I think it's a case of knowing what *they* have in mind when they describe it as wireless or not, not just knowing what features may or may not be wireless. I can think of several features I might myself refer to as wireless features, but wouldn't be sure which one they are thinking of.

    Our clinic doesn't have a non-phone option either. I can now, after years of patient trial and error, hear the telephone using my mobile with a direct input connection. Unfortunately, the procedure for reporting a broken hearing aid and booking in a repair is to telephone them and speak to their answerphone when it beeps (I can't hear the beep...) and they will then *phone* you back with an appointment. And to get into the disabled parking at the audiology clinic you must press a button on a post and speak to the person over the intercom to explain why you want access to the restricted parking area. Doh!

    Report message6

  • Message 7

    , in reply to message 6.

    Posted by AndyfromCornwall (U14342750) on Saturday, 15th January 2011

    This is discrimination and you should report it. From the hearing aid department of all people we should get a more sympathetic approach.

    What I do in cases like this is use Text Relay to phone them and also explain that as a deaf person I don't in fact have a telephone. If they won't play ball then report it. Under the Equality Act you are entitled to a "reasonable adjustment" for the fact that you can't use the phone. This seems to be an example of the department being run for the convenience of the staff, not the patients.

    Report message7

  • Message 8

    , in reply to message 7.

    Posted by RoseRodent (U1896879) on Sunday, 16th January 2011

    I tried to report it. First I had to report by telephone to PALS (sigh!) and when I got no joy from my letters (cos they couldn't speak to me by phone) I contacted the Scottish Public Services Ombundsman. I went in person and told them over and over again that I'd come in person due to the problems accessing everything that is done by phone.

    They sent me a letter asking me to phone them, I sent a letter back saying I can't do that. They sent another letter saying they couldn't progress my complaint due to lack of a phone number, and that they had looked up a phone number belonging to our surname and address (we never got around to taking it out of the phone book) and phoned it, and since I didn't respond they'd closed the complaint.

    You couldn't make it up, could you? Where to go next after the Ombundsman? I could try the EHRC, at least they have email for their helpline service, but I have been less than impressed with any of their past attitudes, they are a statistic-gathering machine, they want details of when, how and where you were discriminated against but it's action is always required within 5 working days of their email no matter how complex the information or action they ask for (cos we non-working but fit crips can all drop everything - or nothing, since we aren't busy - and get it done the next day, or our 'carers' and social workers and various teams of "can't someone else do it" people will do it for us as they also have nothing else to do) and then once they have gathered all the information that interests *them* they say oh sorry, we can't help you but thanks for making hours and hours of stressful effort contributing to our database which nobody will read.

    I don't know why people think it's truly impossible to communicate by letter or email - just ask me all of the questions you would have asked had I answered the phone. I won't be insulted or unable to cope if you send me a letter that says Q1: where? Q2: Tell me about your deafness, etc. etc. but they can't be bothered to write them and can't be bothered to read our responses, especially if each response will generate a follow-up question. Yes, it can take longer, but need not if it's by email, I am quite prepared to sit at my computer and email back and forth till it's all done. Most times the problem is that they have a central inbox with no way of deliberately routing incoming email to the same member of staff each time. That's not my fault that you have a bad system!

    Report message8

  • Message 9

    , in reply to message 8.

    Posted by IanIlly (U8801543) on Sunday, 16th January 2011

    That situation is absolutely astounding Rose. There was an item on SeeHear about the lack of NHS awareness regarding hearing impaired patients, I know that getting an appointment with my GP follows the same path. The funny thing is that the audiology dept is on the same floor as the ENT (in fact right next door to it) but the appointments with ENT go via a main reception (who do not use email of course) but I have a direct email to the very nice receptionist in audiology so I can set things up easily.

    I wrote to the hospital trust but did not get much joy.

    In other news, I took part in a EU survey for a university regarding presentation of course content for disabled. And they too have some difficulty in that tricky concept of imagining a world without hearing. And this is of course well qualified folk as well.

    Report message9

  • Message 10

    , in reply to message 8.

    Posted by thekumquat (U5850906) on Monday, 17th January 2011

    That is... the most amazing story of incompetence I've heard for a while... and given I've just been advised again to take my employer to court that's saying something! Private Eye might be interested...

    Admittedly my audiology dept gave me their email when I asked the audiologist why they didn't have one - but apparently they 'aren't allowed' to publicise it on their website or to prospective patients, for fear of spam...

    I think places assume that every deaf person has a textphone, so requiring you to phone them is fine. AARGH!
    Given that social services told me I'd have to buy it myself, I don't have one at home as they're about £300, and I've never got the online one to work.

    Report message10

  • Message 11

    , in reply to message 10.

    Posted by glummum (U10073292) on Thursday, 20th January 2011

    Hello Rose this is awful, the bit you were saying re EHRC is a bit unclear to me re 'one week reply rule' Iv'e read this fast but can I just say that under the DDA (in Northern Ireland) you must complain within 6 months of being discriminated against. Looks like the EHRC doesn't want any business by the look of things.

    Report message11

  • Message 12

    , in reply to message 11.

    Posted by RoseRodent (U1896879) on Sunday, 23rd January 2011

    What I mean is when they are collecting data to progress a case they never give you more than 5 working days to collect and return it. For example they ask for all the details of who discriminated against you, where, when (as in precisely which date) what action you took, what action they took, and they want you to return this report to them in 5 working days. Then they look at the report and have some questions, which you must answer in 5 working days. Then they want you to provide a copy of the letter that you sent to so and so and a copy of their reply - now we are down to 2 working days as you obviously have those at your fingertips.

    They also ask you to send certain letters to the parties involved in your complaint then send a copy of your letter with their response withint 5 working days - even if the letter has to, by law, give the other party *ten* days to respond!!! With every single one of these you get a warning that if you fail to respond in the given time with answers to all 21 of their questions your case will be dropped. It's only when you have finally filed all your papers and hit all your deadlines that you find out they were planning to drop your case anyway, they just wanted more paperwork in your closed file.

    Unfortunately my complaint was that I had asked for part-time hours and although they eventually agreed to provide part-time hours they wanted me to attend more and more hours each day and wanted me to do a full time workload in part time hours so they had wiped out their offer to allow me to come part-time, so I was complaining that I had been put under an untenable workload and EHRC then wants me to add to it by filing mountains of paperwork! I had to file about 30 seperate pieces of information with them in exchange for them offering to invite the other party to arbitration. The other party refused to come, they closed the complaint. Imagine if it were so easy to get around other laws, you kill someone but refuse to turn up in court, case closed, on you go home, no prison for you. If I'd known from the start all they were going to do was offer to let me talk to the people I'd already spent 4 years talking to I'd never have got involved, I already knew they were never going to do anything voluntary.

    Report message12

  • Message 13

    , in reply to message 1.

    Posted by RoseRodent (U1896879) on Sunday, 23rd January 2011

    Anyway, I have my hearing aid clinic appointment now for Feb 2nd - any advice on what to say? I don't want to say too much about outside equipment as they will just say the NHS doesn't have to provide a hearing aid that works with your educational equipment (they do if you are a child, but not as an adult because your education has no value) nor with anything you need at work. But if I don't go into it enough I'm sure they will simply give me another exchange and promise me that new ones will be better, or at least that I can get them swapped each time they start making the noise (audiology is over an hour away, I don't want to go every 2 weeks to return hearing aids!)

    It's weird, they clearly think it's important enough to provide a T setting that they have them fitted to NHS hearing aids and my department will even *shock horror* actually activate that program, but since I can't actually use that program it's no use to me, but because the reason I don't have access to it is because of my "choice" to need FM to be able to hear... well, anything useful then that's my problem and I should just stop existing.

    In many ways I'll take anything at all which has at least the features of the current model but without the dying wasp, it's just that audioshoes are £25 a pair plus postage (which is not cheap with Connevans) so if we order lots of different types of hearing aids I am going to be very badly out of pocket with dud audioshoes, I'd rather go straight to one that is designed for 24/7 FM attachment instead of another Siemens brand, which just isn't set up for this type of usage, that's why they issue Phonaks to school kids cos it works with their FM. I also prefer the Phonak programming system, it's got more things that work for me and my lifestyle - *if* I can get them to open up that part of the system instead of doing the REM and saying OK then, that fitting is now perfect, we only have to get them so the REM is good, actually making it work for you as a human with a lifestyle is not in our remit, you aren't allowed other programs. These types of fittings usually leave my hearing worse with the hearing aids on that with them in my pocket.

    If I get the audiologist from h3ll I will just forget it, she was cross with me for needing a replacement tube after "only" 5 months.

    Report message13

  • Message 14

    , in reply to message 13.

    Posted by AndyfromCornwall (U14342750) on Sunday, 23rd January 2011

    I do wonder at the competence of these people!
    Tubing does not have a finite life, it largely depends on how much of a shot of ultra-violet light it gets. It is regarded as disposable and hospitals carry bulk packs of pre-cut and bent tubing for replacements because sooner or later it turns yellow, goes hard, becomes narrower and doesn't conduct sound so well. The cost is pennies, the time is minutes. What is their problem?

    Briefly I will describe the service we get in Cornwall, I don't see why they can't provide the same in your area, it's all the NHS innit?

    I am also about an hour from the hospital and as a result of discussions I and others have had in the past I have two aids where normally they used to supply one. I pointed out that people have two ears and two eyes. People with eye trouble are not given a monocle so why are people with dual-ear deafness only given one aid?

    In the same way we've persuaded hospitals to carry a small kit of spares at the Reception desk of every hospital. If you unexpectedly run out of batteries you can call in at a Cornish hospital and ask if they have any spare ones.

    You can also get replacement tubing in several sizes and types. They even keep the odd earhook. The whole pack lives in a polythene bag which is sent out using the normal NHS van service and replacements are ordered as needed.
    Some Receptions keep whole boxes of batteries and my local cottage hospital used to just give me a box. If they didn't have a box in stock they would order me one from the main hospital in Plymouth and just give me 6 packs until it turned up.

    If a hearing aid packs up you can send it to the hearing aid department by post or call there and drop it off. All they need is an explanation of what went wrong, for the technicians use. Normally they don't repair the aid immediately but replace it from stock, by post, or if you call they will issue one on the spot.

    You don't have to make an appointment to see a specialist, you can call at any time within their opening hours. Annoyingly they are not open every day so you have to make sure you go on a day when they are open! But if you sit there long enough they will fix you up. My record for waiting is four hours. Mind you I did get an hour off for lunch!

    As far as specialist services are concerned they do have visiting experts. There isn't enough demand for a full time specialist in, for example CI's so they refer people to Bristol. I'm told that about 12 people a year from Cornwall get CI's in Bristol as Plymouth doesn't have the facilities. The audiologists in Bristol have better qualifications than the ones in Plymouth simply because they see more people and are able to gain more experience. If you have something unusual ( I suppose cookie-bite loss might come under that) they refer people on to Bristol. There is also an ENT dept and a social work dept for the deaf down at the Royal Cornwall Hospital in Truro.

    So there is quite a good network covering the area although it does mean that people have to travel if they need experts in a particular area. My CI op involved a total of 9 trips to Bristol and one trip to Plymouth. There will be more and I still have to go to Plymouth for servicing to my digital hearing aid. Bristol did fix me up with a new flexible earmould for my digital aid and it was a material that you can't get from Plymouth! But clunky though this is, it does work and even in this fairly sparsely populated region (only about half a million) it's possible to access specialist services.

    The reason I'm describing all this is so that you can ask your Hospital Trust why they can supply a quality service in an outlandish place like Cornwall and yet the highly civilised Scottish NHS can't somehow manage basic tasks. smiley - winkeye

    Report message14

  • Message 15

    , in reply to message 14.

    Posted by Amber (U14910322) on Thursday, 16th June 2011

    I agree, it's shocked me how unconsiderate people are when i comes to hearing loss....

    My audiologist has even accused me of lying on my hearing tests! Because i'm young, they seem relunctant to even believe i have hearing loss. Even the receptionist at the hospital told my mother she must have made a mistake, they don't get young people in audiology.

    It annoyed me so much!! So now instead of all this bother and being passed from pillar to post, i'm just going to go private and thats the end of that. Maybe i'll actually get my help. Shame it'll be from someone who wants my money and not from someone who just wants to help.

    But on a more lighthearted note, it amuses me that if youorder a catalouge for hearing aids from a private firm, they call you to ask if you want an appointment?! Duuhh!!!

    Report message15

  • Message 16

    , in reply to message 15.

    Posted by Jippers (U1364431) on Thursday, 16th June 2011

    Hi there,

    Excuse me if I'm repeating something that's already been said..somewaht of a headache at the moment and thought I'd give my two cents..


    Every hospital has a medical litigation department, it might be worth righting a letter to them, as well as to pals, your local and most proactive mp, gp and audiology department.

    Havine something in writing and cc'd to as many people as possible leaves it in a position where it cannot be ignored, particularly if you are in a position where the system is failing you.

    I can't say anything on earphone type, it could be something as simple as contracts, commissioning and funding.. but they still need to accomodate if your aids are not enabling you or alleviating you in any way.

    Certainly in the wider area you can choose which hospital you can have your treatment, but I am unsure of Scotland, it, wales and Northern Ireland fall outside of the National Choose & Book Service.

    Sorry if I'm not any help, my biggest and only suggestion is that you have as many people in the know in one go,, it will encourage conversation about your need and you can't be ignored.

    Jippers

    Report message16

  • Message 17

    , in reply to message 15.

    Posted by djchur (U13916790) on Saturday, 18th June 2011

    Amber, the receptionist your mother spoke to must be an idiot. I used to attend the audiology department at Birmingham Children's Hospital. If young people don't need an audiology department, why did it exist?

    Report message17

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