Grommets...go private or wait for NHS treatment???

[beebee82]

My son 2.5yrs needs grommets and has been seen be a private ent consultant (as the referral was taking ages) who prescribed him a 6 week course of antibiotics to treat the glue ear to see if it could be manag d without surgery. While on this course of treatment he was seen by the NHS consultant- it was pretty clear the antibiotics were not helping so referred him for grommet surgery.
I've been told the wait for surgery is up to 12 months on the NHS 😬 He has a review with the private consultant coming up and I'm thinking of getting a bank loan and paying for the surgery privately.
Ha don't anyone had this privately for their child- how did you feel about the treatment, how much did it cost? Would you have waited for NHS surgery?

It is delaying his speech

Thanks x

Thank you 🙂 I'm waiting for he private ENT secretary to call me back, I've also spoken to PALS and they advised me to put my concerns in an email so they can look into it for me...I've just sent a very long email outlining my concerns regarding leaving him with moderate hearing loss for a year - and the negative affect this is having in his speech and language development, general behaviour (frustrated, increased physical communication/agression, distress) and that the wait seems disproportionate due to the crucial stage of development he is in.

I guess I just have to wait and see....

Feel so much better and supported from advise from everyone thank you x

I was told I'd have to wait 3 to 4 months for my daughter's op and it happened within a month.

I'm so confused why we have been told to wait 12 months! Everyone else has had much more acceptable wait times....can I look st other hospitals? How would that work? Or do I have to stay in Leicester for his treatment?

Maybe they're just covering their asses and it's very worst case scenario. I had letter 5 days before operation so very last minute, which makes me think it could've been a cancellation.

My son had grommets fitted for severe glue ear aged 3, we had to go private for the diagnosis too (cos no one would bloody listen to me! His speech was delayed and I knew he couldn't hear but all the HV and GP kept asking me was about his play skills and eye contact, I wNted to scream HE'S NOT AUTISTIC HE CAN'T BLOODY HEAR) but we went NHS for the op as it was only a 6 week wait. I am shocked that 4 years later and people are being told it's a 12 month wait :(
It made a big difference to him but even the time I wasted waiting for referrals etc affected him IMO - he is still behind his peers now aged nearly 8 and I wish I'd pushed sooner or gone private sooner.
I wouldn't wait a year :(

My daughter had a NHS hearing test. Was told she needed grommets as a letter of urgency. We had private insurance so used that. DD had an assessment, surgery and 6 week post op review before even getting an NHS letter asking to ring for her initial Drs appointment. Private was well worth it as the hearing loss was affecting DDs school work.

We have been through something very similar. The grommets were life changing for my child. I am going to pm you the consultant and hospital we went with in case useful.

There are risks of grommets of course - a small percentage will have ENT complications, there are risks of every GA and though they stay in an average of 9 months they can fall out immediately for a few unlucky dc. We really agonised about doing the op with our dds.

But in the end these risks have to be set against the risks of NOT doing grommets - the damage to speech, social skills and self esteem that I have seen in my own dc. The risks have to be considered against that background according to their statistical probability.

The degree of necessity of grommets will be different for every child - my child also had 50% loss and speech delay at 2.1 and I was told by NHS and private consultants that she must have grommets immediately.

I would recommend you looking at the NDCS (National Dead Children Society) publication on glue ear which explains what is and is not evidence based for glue ear. They say dairy free diet is not evidence based and iirc neither is grommets.

A really good book to help with speech while you wait for the op is Hanen - it takes two to talk

Should have said we were given a long nhs wait time and went private - had them done in 3 weeks.

One option is to get them done in the private wing of an NHS hospital, best of both worlds

So sorry where I say iirc neither is grommets I meant iirc neither are anyibiotics but grommets ARE evidence based for blue ear

iCan are a great charity to speak to and they used to have free SALTs you could speak to on the phone.

Ime the Hanen book is not good with children with hearing problems that are already impacting on behaviour and concentration. OWLing just doesn't work if the child cannot focus and concentrate.

Our SALT was amazing. Cost over a thousand pounds but worth every single penny. The work she did with both of us helped with focus and concentration and was totally responsive to ds's needs. However, having the op fixed the root cause and if we had got that closer to 2 years old than 3 years it's arguable the associated problems would not have got so bad.

I agree ICan is amazing - you can still book in to chat with a SALT.

Interesting that Hanen didn't work for you Moving - our very experienced salt recommended it knowing our dd had hearing problems and we added many new words to dd's vocabulary in the month between seeing SALT and our op despite almost none having been added before. As you follow their lead the owl ing should still work even if they flit about from activity to activity?

Our local audiology service offers hearing aids to children with glue ear-either while they wait for the surgery or for it to Clear up. You are
Right to be concerned about the speech and language delay- ask if hearing aids are possible.

We were talking about a child who couldn't even look at a picture book so no, it didn't work.

Our SALT explained why it didn't and it made total sense (seemed so obvious once she said!) but I can't remember what it was that she said. It was 5 years ago and he's totally fine now. Better than fine - doing really well.

Moving I can totally see why Hanen didn't work for you guys then. So glad all is better now - it is for my dd too.

I'm not sure that it's right to suggest hanen doesn't generally work for dc with hearing issues though. I've never heard that in three years if working with a speech therapist with their own hearing impaired dc who uses Hanen a lot.

I've spoken to the secretary for the private ENT consultant and she mentioned that often children require adenoids to be removed as well as grommets to treat glue ear....I've googled the treatment and it makes sense that thy could be done together...I guess I'll just have to wait for the review!

I'm not sure that it's right to suggest hanen doesn't generally work for dc with hearing issues though. If you read the rest of the sentence you'll see I didn't suggest that. I said "children with hearing problems that are already impacting on behaviour and concentration " [ive added the italics].

That said I'm not sure Hanen is recommended for children with hearing issues. The SALT I spoke to seemed to think it was pointless but I'm not a SALT so I can't fully remember why. She did get results after 3 months in a child with profound hearing loss. The biggest impact was on his concentration and behaviour although there was an improvement in speech too.

The point was expecting a child with hearing loss to listen was fairly futile.

My son was diagnosed with glue ear and hearing loss aged 4, just before he went to school. He also had some issues with his speech. We decided to go straight for hearing aids (turned out he only needed 1) and didn't even bother with the waiting list for grommets. He has used the hearing aid intermittently over the last 2 years and his speech problem has very nearly resolved. Unlike with grommets, there was never any worry about the surgery or its complications and no need to worry about swimming etc. His teachers at school have all been great at implementing strategies to ensure he can hear them and keeps up. We are very happy and now he seems to have grown out of it. If you can avoid grommets, give hearing aids a try. There are all sorts of child-friendly pictures they can put on them, they are easy to use for the children and my son has never felt different to his friends or experienced any sort of negativity or bullying. I think there is an assumption that they are second best when compared with grommets but we certainly don't feel that has been our experience.

I hadn't thought about hearing aids, it does seem like a good solution especially as most children grow out of glue ear. We have our review appointment with the private consultant on Tuesday so I will ask him about it then, I've also been informed by his secretary that he does indeed operate on under 3's x

I don't think antibiotics will clear the glue from the ear-just stop it being infected. You have to wait until it drains away, which we find it does better in the summer months.

We asked for hearing aids last time with ds, but although they will usually prefer to give them if possible (although apparently parents tend not to want the,) they said his ear drums were bulging with pressure and grommets were necessary.

Ds seems to be one of the few children that don't grow out of it unfortunately. The consultant said that she would have expected him to be clear by now but as he isn't there's a good chance he will always struggle.
But they have agreed that rather than seeing him at 6 monthly appointments (so February and August at present) there's no point seeing him in August as he's clear during the summer so he's going to have November and February appointments, which should show the worst side.

Moving, thanks for pointing out your italics - I had indeed missed the subtlety of your point!

I'm still a bit confused about the point on 'listening' though because when you OWL in Hanen (as I'm sure you remember) it is the adult who observes, waits and listens, not the child. So my dd pre grommets it might go like this:

Dd gets very interested in snail on path
I observed O of (OWL)
I wait (W of OWL) leaving long gap for her to comment
I Listen (L of OWL) by leaning forward with look of great expectation as she says sn ay

I then stress and build language by saying - "yes it's a lovely brown snail' with the stress on snail.

I can see it would be hard if rhe child didn't see/just ignored your Listen cue?

Hello. This may help if you or anyone else has yet to decide on waiting for NHS surgery or to go privately:

Initial private consultation £175 (no extras charged).
Offered private surgery at ca.£2700 all inc.
or NHS as a private patient (yes....you should ask the private surgeon if this is an option) - most NHS hospitals have private wards....and this option was £700 for hospital costs (bed, theatre, grommets, hospital staff) + £160 for the anaesthetist + £200 for the surgery itself.
The time to wait for an initial NHS consultation was ca. 4 months and I would not have expected to have been listed for surgery for another ?6 months.
This total is £1060 plus the initial private consultation at £175 and a review appointment of about the same.
NHS facilities offer the advantage of having intensive care on site if anything went wrong and the anaesthetists are likely to be the same as working in the NHS as in the private hospital anyway.
So, for ca. £1410 and hardly any waiting at all...not difficult to see which option I would choose.
I would not expect the costs to differ between children and adults.