Lack of help for hearing impaired DD

[Amieesmum]

My 6 year old DD was diagnosed with a hearing impairment nearly three years ago at aged 4, even though she didn't have glue ear, the ENT consultant decided we should try grommets & adeniod removal before progressing.

She had the op 4 months later, it was obvious her hearing hadn't improved, and despite repeated appts with ENT & audiology showing her hearing loss to be at about 80% the consultants were reluctant to move forward. his answer was she can hear me fine.

In the mean time DD was making absolutely no progression at school, although her speech is ok, she can't use proper sentence structure.

After insisting there was still something not right, we managed to see a different audiologist who had the sense to cover his mouth when he spoke to DD, it became immediately apparent she was lip reading constantly, and could not hear what was being said. Finally a year after the grommet op they decided to issue some hearing aids which we got in July 10. We have seen a marked improvement in her school work, she can now read basic words at a reception level, however she's still so far behind the other children and the teachers, although try as hard as they may, are out of their depth.

We still haven't had a complete diagnosis, and are being passed from consultant. It's believed DD has LQT (she keeps collapsing) as well as epilepsy although still awaiting confirmation of that (next appt 9th feb) but no explanation of the hearing loss.

It's almost like being passed from consultant to consultant with each one waiting for the other to make a move first.

It's so frustrating, at the moment i feel like i'm clawing round in the dark, i have joined the NDCS but so far haven't had any help from them, the consultants just seem to expect me to get on with it, without any knowledge of what the future holds, meanwhile my DD is falling further and further behind the other children.

We have discussed applying for a statement of special needs, DD's school have suggested this would be a good idea, however think it should be upto me & her consultants to initiate this.

I'm a Single parent and have had to give up my job to cope with the repeated hospital appts (currently we go about 2/3 times a month for set appt plus 3/4 emergency admissions per month)

however think it should be upto me & her consultants to initiate this.

What a pathetic response from school. It's school who has a legal duty to identify children who may require Statements and apply for them.

Consultants can't apply for Statements - only school or parents can do this.

However, as they on't you can apply yourself by writing to the Education Service of your Local Authority. www.ipsea.org.uk has a model letter showing you how to do this.

You don't need to wait for a formal diagnosis.

Meanwhile you should ask the SENCO to place your daughter on Schools Action Plus and compile an IEP - with your input.

Best wishes

Thanks, She has an IEP already, so far she's still not hit the targets set in reception.

The school are reluctant to apply on the basic that they have had no medical input, which i never knew they could have? Although they suggest I apply & they are happy to back me. The cynical part of my thinks this is because by the time a statement would be granted DD would be moving up to junior school, thus their paperwork & time would be spent on something that is of no use to them.

Which i guess leaves me to apply, Argh these things confuse me so much. lol.
Thank you for the web address, I'll downlaod the template and take it from there.

SENCO?? Is that SN co-ordinator, if so our school doesn't have one.

(gosh i sound like such a whining mother saying all this, I know i'm making a fuss about it, but the time frame for my DD is running out in which to teach her the basics)

yes, apply for a statement yourself, that way you are in control and you know what is happening. Have you been in touch with parent partnership where you are, they may be of use.

get onto the ndcs helpline, they are fantastic, they usually have area family officers and also regional officers that can offer you support and advice that they will put you in touch with.

I haven't heard of parent partnership? i'll look into it. Thank you

the school will have to do the work regardless of who applies for the statement! They will be asked for reports and evidence of progress or lack of! and the levels she is at and her difficulties. The school should have a senco or access to an area senco, try to find out who it is.

parent partnership

SEN code of practice will be useful reading.

Well well well, the school have kept that one quiet. I shall ask about that tomorrow.

See what i mean about feeling like i'm clawing about in the dark? Maybe they assume i automatically know all this, like it was downloaded to my brain while i wasn't looking when my DD got her aids or something lol?

There should be a teacher for the deaf / hearing loss who goes round different schools and sees children - contact the SEN officer at your Council - this is also the person you write to for statutory assessment.

Have you thought about medical negligence for the delay? At the moment children can get legal aid to investigate negligence but the govt plan to do away with this probably within a few months. Usually when they change the rules that don't do it retrospectively so if you applied now they might not take it off you.

You would then be able to claim for some private lessons etc to help her catch up.

This website has some info for teachers as to how to make reasonable adjustments etc.

Schools are usually expected to put in up to 20 hours support themselves from funds already delegated and this plus an outreach teacher may be enough - its worth speaking to the SEN officer or asking your school senco to speak to the area senco. Even if you do need a statement at least you will be getting up to 20 hours or whatever your local authority expects in the meantime.

If there is a local school for the deaf near you you might also want to investigate or at least ask them for advice.

What sort of audiology department did you have the great misfortune to have???!!!
I'm quite ed!
There's something wrong here.
ENT would never insert grommets or do adenoid removal unless they knew your dc had severe and chronic glue ear.
There must be a big communication problem going on here.

Do you have an audiogram that shows her hearing loss? Have you had sensorineural loss confimed? Sorry to ask so many questions here. If your dc has permanent hearing loss the sensory team (or equivalent)of your LEA - which should have a hearing impaired service - should have been notified so that your dc has access to a teacher of the deaf.

Please contact the NDCS to ask for a family worker to help you access the support you need. They were very helpful to me when I needed them.

Aimiesmum - have just read your post on other thread.

You mention language processing problems.
Same with my dd too.
My dd originally had moderate-severe loss due to having both sensorineural loss with overlying glue ear. There was never any suggestion of grommits as she was given hearing aids immediately (the theory being grommits + aids can cause an increase in ear infections).
Dd has grown out of glue ear just as we thought (gone by 5yrs). Now with just sensorineural loss she's on the top end of mild to moderate loss.
Dd has always been on school action plus as she has had a tOD since diagnosis. We moved county last year and were immediately assigned another TOD. Our school is great - they push for help and assessments.

Dds language is currently under investigation, a suspected additional language disorder. Auditory processing may be a problem.

Do you have Phonak aids? Dd had Danalogic in last area as told dd wasn't "deaf enough" for the expensive Phonaks (by which they meant due to funding these were reserved for those with greater HI), but quickly changed to Phonak by new audiology dept as standard practise and these are much better (according to dd).

I could rattle on for ages about aids, support and language issues but am trying to avoid writing a major essay here!

OMG, I'm actually in tears reading this (sorry)
I'm so shocked I don't know any of this should be happening. I'm so angry and upset to think my DD may be missing out on all this help, and for so long because people have neglected to inform me. Despite my many google -ing sessions i've not come across as much information as you guys have given me in a few short paragraphs!

It's Kettering General Hospital, but a childrens hearing aid specialist also comes to Kettering from another hospital to see her (st Marys or something)

Her ENT consultant has confirmed as far as "its sensorineural hearing loss", but no investigation to confirm this so i have no idea how they can tell.
I have also been told it is permanent, and judging by her recent audiogram will continue to deteriorate steadily though time. Although they are not sure why, and instead of looking they are "monitoring it every 6 months"

Yes she does have the Phonak Aids, they do make a huge difference, i can't tell you how much i wish she'd got them sooner!
I always look at her audiograms, and have asked for copies but have been refused, she falls within the lower range of hearing, especially with lower pitched sounds, i think this may be what led them to point in glue ear direction as it's a common symptom, despite the fact she didn't actually have it!

The grommets were the ENT consultants "first stage" to finding out what what up, although she's never had an ear infection in her life, and i should add. She did have abnormally large adenoids though, directly after surgery she had another hearing test which she again showed a substantial hearing loss.
i should add she not passed a single hearing test in her life, although HV & nurses didn't see this as a problem until i made a fuss about it.

I'm just so confused why the support hasn't been offered to us, when the support is clearly meant to be there as it is for others!

Oh I feel so much for you

Ok, to test for sensorineural loss my audiologist did first the usual hearing test with headphones then a bone conduction test - basically a type of headset that rests on the head behind the ears to transmit sound there as to bypass the middle ear. If both tests give a similar outcome then it is likely to be sensorineural, if bone conduction is much better than suspect the middle ear may be at fault eg full of glue. Also, when my dds glue ear had improved another quick test was performed in one ear (have forgotton the details) which revealed that the cochlea was not working.

They refused to give you a copy of the audiogram? Why???? I get a copy EVERY time!

My first audiologist was the one who automatically refered to a TOD - he worked closely with them all. It was all arranged for dd without me doing anything.
When I moved, in order to get the ball rolling quickly, I myself rang the LEA and asked to be put through to the team that deals with hearing impaired - told them about dd, gave all details and told them to expect files/reports from previous team and TODs. Did this for SLT and audiology, just to speed it all up.

You say you've been told your dd has progressive loss? I have read about this ages ago (cant quite recall details). This surely makes it imperative that your dd receives intervention asap to maximise her language and residual hearing.

You really need a NDCS family worker to champion your cause. They should have one in your area that can discuss options and come out to support you in meetings etc.
Perhaps ring your LEA and ask who deals with hearing impaired support and ask them direct about what is available (eg TOD).
Your school's SENCO should be dong this!

As for why you've not had the support automatically, I'm not sure. I've experience of automatic support in Wales and now in Yorkshire. I didn't have to really do anything and I wouldn't have known what to do at the beginning anyway. I think it's awful that you have been left in the dark like this.
I know you've said you've joined the NDCS, but please do try speaking to them. This is what they are there for.

Tons of hugs and tissues for you. Please keep posting so I know how you're getting on xxx

I dont know if this is of help but my son has a perm hearing loss and his is down to a genetic condition that is only associated with hearing, its called a connexions 26 gene mutation. This is also thought to be progressive, he has had two losses in the last 4 years. It was fairly easy to test for they just did some genetic testing on his bloods.

Fustrated2003 - Thats all sounding very familiar, We had some basic chromosone tests back in November time, and should be getting results 9th feb (next wednesday) and referred to a geneiologist or someone, although that isn't linked directly to the hearing loss, it's more in relation to LQT (please excuse my terrible spelling) i can't remember which chromosone it is they thing has mutated but we may be along the same lines.

It's such a web of consultants and specialists that we see. Who are still trying to figure out if DD's symptoms are interlinked or separate issues altogether.

Kissingfrogs - maybe that's how we missed the link to the TOD as the original audiologist wasn't great and just thought DD wasn't paying attention.

As for the audiograms i have no idea why i haven't been allowed copies (probably the NHS cutting back on photocopying lol)

We have indeed had the tests you described, so it looks like they knew their stuffs in that instance (i guess they've got to get it right some times!)

AND i am now armed with a wealth of information ready to take to all the bodies need be in the morning, not to mention contacting the NCDS local advisor too! Wow i'm going to be busy this month lol!

Thank you all so much for all your posts, i'm totally overwhelmed by the advice you've given. It's just so nice to talk to other parents too who have children with similar hearing impairments (i've never met any others)

I will indeed keep you posted :D x x x x x x

May also be worth contacting social services as they too may have a HI/Sensory Impairment team that can offer support and can assess for provision of equipment, (this is seperate from the education TOD service)

amieesmum, I'm sorry but the treatment you have recieved is disgusting, you are LEGALLY entitled to a copy of your dds audiogram under the data protection act and would suggest you consider writing to request a copy of your dds notes so you know exactly what is happening.

If she had a hearing test just after the grommets when there was no glue present this would suggest a permanent hearing loss as glue is what causes a temporary loss.

In school does she have use of a radio aid or a soundfield system?

Ok I think you need to do the following.

1. Request copies of her medical files or at the very least an explanation of what is wrong. It seems strange that you are seeing an ENT surgeon (at the end of the day a surgeon) what you need is an audiologist (ie a doctor - some are some aren't - of ear problems, usually hearing and or balance).
2. You need a TOD. You can self refer or get Dr / audiologist to do what ever is quicker.
3. You need to find your family officer at the NDCS. Call the helpline and they will find them for you. They are really fab and are local so will know who to get on top of.
4. School needs to pull their finger out. Request an assessment for a statement, but this is much easier once you have a TOD.

I think this is wholly unacceptable, but honestly not that surprising. You need to stamp, shout and be proactive and the support will come.

Hey all,

Have this morning been on the phone the the local NDCS officer, she was amazing, and is sending me loads of information to help with an application for a statement.

I have also been on the phone to the local Parent partnership, and my local worker is coming out to my house Friday which is fantastic, she has asked me to get copies of the last three IEP's from Dds school, as well a confirmation of her reading age and written confirmation of their support the the statement application.
They have also explained school action plus to me, so it appears DD has this.
i'm in the process of gathering all the documentation to support an application for a statement, which she is going to help me with. (although she off the record agreed it sounds like the school don't want to do the leg work for something they wont benefit from as she will have moved to junior school by the time it comes through)

She doesn't use a radio aid at school although this is something they are apparently looking into getting funding for. She sits at the front of the class on a table with other children with conditions ranging from autism, ADHD, Dyslexia & learning difficulties, and a teaching assistant between the 6 children.
While this is good she has this support, sitting with children (and i really hope i don't offend anyone by saying this i really don't mean to) who tend to be a little on the noisy side actually tends to hinder rather than help her, due to the background noise being amplified by the aids.

I have called the hospital & copies of audiograms are on their way too me, along with an appointment at Educational hearing impairment clinic in April.
I will put in a request under the data protection act for her medical notes as they were reluctant to send those, probably due to the amount of fuck ups oversights, where they have not made referrals they were meant to until I've chased for apts later on.

I'm hesitant to involve social services as i had a run in with them once in the past when DD was 7 months, i was maliciously reported by a warden in the sheltered accommodation i was living in (she thought i shouldn't be there as i was working full time) They turned up on my door with an emergency order and two police officers ready to take DD away, although found all living conditions were fine & got a glowing report in their assessment, and never heard from them again, it did unnerve me more than a little. I should add the warden was later sacked for gross misconduct.

It's a bit annoying i'm having to do all the leg work for this, but as the saying goes if you want something done properly do it yourself is relevant.

Hopefully i'll have some more news from you soon!

and again thank you all so much for your comments. It's been such a comfort and unexplainable help to us.

xx

hey that's fab news things are finally moving. You may well find that the department that deal with hearing and vision at social services are completely separate from the child protection lot, they are here. I do understand your caution.

This sounds so much more positive than your 1st posts. We have social services (totally seperate from the child protection lot here as well) involved again at the moment and they are fab. We've now been allocated a family support worker who is deaf herself and is going to deliver deaf awareness to school. She is coming out to do some play sessions with DS (bilateral deaf, aided) and DD (unilateral deafness, unaided)to help them with their relationship as its very strained at the moment and to try and help DS understand his deafness. He's only 4 but he's asking a lot of questions and I'm hoping that giving him someone who he can start to trust and he can relate to to talk to will help him.

I don't understand why you don't have a teacher of the deaf. They're not all brilliant but some are worth their weight in gold. They will get you the radio aid if she needs it so you don't need to worry about funding. Plus, you need one to set it up for you even if you buy it yourself.

NDCS are brilliant. They have been a lifeline to me. They have helped me fill in the DLA form. They've helped me with getting a referal to CAMHS for sleep and behaviour issues. They really have been brilliant. I can't rate them highly enough.

Hopefully now you're starting to understand what your dd needs you'll be able to get it all for her.

Bigcar - I'll look into it! not making any promises though!

Rebl - sounds like your dc's are getting great support. NDCS have been fantistic thoughout today, can't wait to get my big pack of information from them in the next few days.

I'm feeling alot happier since posted, we'd just come back from another useless appointment at the hospital and i was wholely fustrated and upset by our seeming lack of progress.

I had a meeting with the school this afternoon after picking dd up, they bought in the local SENCO to join us. shock horror the elusive SENCO does indeed exsist! Dd was referred to the LEA hearing impairment team last year, who have by all accounts not been very useful at all, these are the guys who are meant to arrange TOD to come in, but haven't, instead they sent the school a booklet about teaching hearing impaired children, like we didn't already know how to to that, talk about stating the obvious!
So we agreed to kick some LEA butt & have collectively written a shitty strongly worded letter about their fuck up oversight. The SENCO has even offered to come round for the meeting with the support worker from the local parent partnership. Cucumber sandwiches anyone? lol!

I have just applied for DLA about a week ago :S not heard anything yet, crapping it with that one! filled in the form myself but wish i hadn't now, keep thinking of things i should have said, and wondering if maybe i was a bit OTT with other things. Never mind, time will tell!

Anyways i feel all in all that some kind of progress is being made (finally) and hopefully soon dd will get some of the support and help she should have been offered, or at least informed about, from day one