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I need some advice!

25 replies

swearytramp · 21/06/2012 21:51

Ok, I feel a bit daft posting in here, but I really need some help. My daughter who is 6 has microtia - basically one ear. She is completely deaf in this ear and also it is under-developed, with no ear canal and just a little bit of a shape as it were. I have the same condition too, and had lots of surgery to reconstruct it as a child which failed miserably. She has no interest whatsoever in reconsrtuction but is desperate to hear. When she was small we were offered a BAHA (hearing aid) but decide to wait till she was older. When she started primary school she became very aware of her limitations hearing - wise and asked if she could 'hear like my friends'. Long story short, our PCT is refusing to pay for this as she has one 'good' ear. I know, through support groups, a lot of families with children who have the same condition and, without exception, so far, every one of these children has been offered, or has, a hearing aid. Our local hospital is a world famous, massive teaching hospital with the facilities to do this surgery but refuse to. They also refuse to refer us anywhere else due to the funding issues. Now, I have contacted NDCS, PALS, my MP, appealed etc, all to no avail. DD will not get a hearing whatever. Single sided deafness is a debilitating and difficult condition to live with. It's not like being 'a bit deaf', it's like living in mono, it's socially embarrassing and educationally a nightmare - a TOD came to visit her at school and said she is doing brilliantly - she's well above her class academically and has a 'lovely group of friends' etc. I could scream!!! She may be doing well now, but I remember so well, getting to about 12 and just wanting to give up! It gets to a point where you know people are pissed off with you saying 'what? sorry?' and ignoring people on your 'wrong' side cos you can't bloody well hear them!!! I am trying my utmost to get the pct to change their minds but am rapidly running out of ideas. I have almost resigned myself to the fact that we will have to start fundraising to go private but i really don't want to do that. An anonymous MNetter has told me to post on here for some advice. I feel a fraud because it's such a minor issue but anything anyone can do just to give me an idea of what to do from here would be fabulous. Tonight dd got really upset and said 'when will I get my hearing aid? I'm fed up with saying 'what what what?' all the time at school'. It breaks my heart that something so relatively cheap and simple and life enhancing is being denied her. If we wanted cosmetic reconstruction we could get that in a heartbeat! Madness. If you've made it this far, thank you!

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swearytramp · 21/06/2012 21:59

just read through - the bit about the TOD is important because, as she is doing so 'well' it is considered that she doesn't need a hearing aid. The issue is, she is doing so well, beacuse she is a bright and interested 6 year old who isn't scared to say 'please say that again' as many times as she needs to at the moment, and she has a lovely class teacher at the moment who is patient and kind...

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WetAugust · 21/06/2012 22:16

Hi and welcome Sweary

I really sympathise with you. I only have hearing in one ear (lost hearing in the other in my 20's) so I know exactly what you mean about mono hearing and the impact it has. As an older person she'll find it difficult to follow converstaions in noisy places and in the office I can't tell which phone is ringing as I don't have stereo to narrow down the excat phone. Also at meetings I have to pick my seat at the table carefully so I can hear the most important speakers. It's certainly not a minor issue. It is very debilitating.

Getting the right treatment for such a young child though is quite a specialist thing that the deaf community are probably the experts on. What does RIND say about it. Could you get in touch with an HR solictor who takes pro bono cases and commence an HR action? Are their charities that could assist? Not a thing to go into lightly but what about the Press?

How much does the op cost? Are you asking for a cochlear implant?

It must be incredibly frustrating to have this top medical institution locally - yet be unable to access its help.

swearytramp · 21/06/2012 22:21

Thanks for your reply. No, it's not a cochlear implant, it's a BAHA (bone anchored hearing aid). I hadn't thought of the RNID, I'll certainly give them a go. I am very close to getting in touch with the press as it is so so wrong. the actual cost is £4000 to the NHS, but would be £7000 if we go privately - not sure why! It is ridiculous that we have one of, if not the best generic hospital in this country and they won't do a thing!

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mariamariam · 21/06/2012 22:26

NHS appeals

mariamariam · 21/06/2012 22:28

They probably have a one-ear only policy designed for adults, which you could fight on the grounds that children (esp young children) are different.

SallyBear · 21/06/2012 22:29

Hi swearytramp. Glad to see you here Smile. Wet raises a good point about the RNID. As your PCT are being so useless (yet offered you one originally) can you get a second opinion at another hospital? Like GOSH or the JR in Oxford or Birmingham Children's Hospital? Newcastle and in Edinburgh hand out BAHA's readily yet the the JR had to ask my PCT to approve the funding for my two kids BAHAs. Frustrating to say the least.

swearytramp · 21/06/2012 22:37

Sally, we can't be referred anywhere - even for a second opinion which is the whole bloody problem!! I was actually told by PALS that the only way we would get any help on the NHS would be if we moved house to an area that funds it. Mariam - adults don;t even get a look in - I asked if I could have one (had this mad idea of sharing it with dd!) and was told that adults are not funded either.

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WetAugust · 21/06/2012 22:41

I'd continue to put pressure on the PCT - ask for a copy of their criteria for approving BAHA and ask them for a reconsideration of their decision citing any special circumstances e.g. age of the child, her distress etc.

But it's usually shaming them via Press attention that gets things moving. She's also quite young for reconstructive surgery. There's always the option of moving to a different PCT if you know which ones will fund it but ultimately that may cost you more than private surgery.

TheNinjaGooseIsOnAMission · 21/06/2012 22:42

my first thought would have been the ndcs, they're usually great! Is there any way to prove the benefit first, could you try a softband one, would they go for that? Not sure the cost would be much less though. Your ToD doesn't sound great, any chance of changing?

WetAugust · 21/06/2012 22:44

My consultant plastic surgeon persuaded a PCT to overturn their refusal to let him treat me for operation to repair scalp damage. Is there any chance your child's consultant could make a special case for you?

TheNinjaGooseIsOnAMission · 21/06/2012 22:45

if nice guidelines say kids are now entitled to bilateral cochlear implants because of the value of having hearing both sides, they should consider a baha or cross aid I would have thought

SallyBear · 21/06/2012 22:52

Absolutely agree!!! The BAHA softband is about £2k. That's the cost of the aid plus the maintenance. I think that Maria's link was very interesting. I think that maybe you need to get the ENT surgeon to champion this, plus look at the legal position to push them Into approving it. Local news is a good start, and then get it picked up by the national press. They are certainly not being very disability aware. Angry

swearytramp · 21/06/2012 23:00

I have seen the PCT criteria and she simply doesn't fit into it - at the moment. As far as reconstruction goes, yes, she is too young, but we were assured that she would get it whenever she wanted - which she doesn't want! the point of me saying about that is that it costs about three times as much as hearing but they would happily fund it! Unfortunately, the ENT surgeon is a first class tosser who is in full agreement with the PCT..but was happy to give me his priavte secreatry's number so we could pop across and bung him £7000 tomorrow if you know what I mean. I guess the TOD was only assessin g her as she should and what she felt she saw was a bright intelligent little girl who needed no help! I know I'm coming across as very negative here but all the bridges have been crossed and all the options considered. What it boils down to is that they will not pay, and my Mp is worse than useless. he simply sent me e mails saying 'sorry you must be very disappointed' end of.

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SallyBear · 21/06/2012 23:07

If they offered you a BAHA when she was small, why did you say no? Because it would only be now at 6 that they would start to consider the abutment surgery. Prior to that the BAHA has to be worn on a softband. I think that this must be an avenue to use. You offered it, we didn't appreciate the advice you gave us and now you won't help.

swearytramp · 21/06/2012 23:14

Well, we said no, because we felt that she was far too little to deal with it - maybe that was a mistake, but I remember saying, ok, I don't feel this is right for her now, but can we come back when she's older and have one then? Audiology were totally happy with that and said oh yes absolutley. I have of course mentioned this recently and just got the answer that 'policy has changed' I then asked so if she had been given a softband and we then decided to go ahead with the full surgery what would have happened if policy changed so suddenly? No proper response..

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SallyBear · 21/06/2012 23:17

Wankers.

mariamariam · 22/06/2012 00:52

GP can refer to St Elsewhere's for a second opinion. Don't need pct to approve it if it's just a normal appointment, just have to persuade your family doctor. Bringing your dd along to tell him her difficulties would help.

A second opinion doctor somewhere far away probably won't be in the pocket of your local NHS and might be more prepared to fight your dd's corner.

mariamariam · 22/06/2012 01:18

Need a community paediatrician or Mr A.N.Other ENT to refer to GOSH

Looks like GP can ask for here and here

And print out page 45 to take to your doctor!

SallyBear · 22/06/2012 08:33

Mariamariam great article. Yes definitely take that article with you Swearytramp. I agree that a second opinion is worthwhile. Poll the parents you know with Microtia to find put what hospitals they are at and how easy was it to get a BAHA. Then see if you can get a second opinion at one that looks favourable. Smile

swearytramp · 22/06/2012 09:32

That is brilliant Mariam. Thanks so much. When I wrote my 'disgusted of Tunbridge wells' letter to the hospital and others, I did list all the hospitals I knew that offered the surgery and the PCTS that referred, it is so difficult at times to find out that peoples' children are just trotting off to get it done - although of course I don't begrudge it at all. It's just so unequal and unfair!

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swearytramp · 22/06/2012 20:03

Not ever so relevant perhaps but I am just so proud of dd today. She came home from school with a special note in her reading book saying she had progressed to white level which is apparently for 8 and a half to 9 year olds, she's only 6 so I am really happy! Sadly though this will again go against our appeal as it 'proves' she's not 'suffering' Angry

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mariamariam · 22/06/2012 21:52

Relevant actually. She's choosing to access printed language over verbal. Common in bright dc with HI.

swearytramp · 22/06/2012 22:26

bloody good point! Um, what's HI? [blush}

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swearytramp · 22/06/2012 22:27
Blush
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swearytramp · 22/06/2012 22:27

ah, hearing issues!

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