Getting grommets privately.

[AnotherTeacherMum]

I will cut a long story short.

DS (5) has glue ear, impaired hearing (this has really worsened over the last yr) delayed speech and lang although with a mountain of hard work by us and school he has finished YR with average attainment.

He has had grommet ops cancelled twice and each time we have to be re-referred from scratch, ie we have to start from scratch with the dr assessing whether he needs them over the course of a few appts- prob is appts are 4-6 monthly so its a long wait. Apparently to have grommets dc need to have 2 v poor consecutive hearing tests. He has had 2 hearing tests in the last yr and the last one was after a strong course of antibiotics for tonsilitis. For the v first time his hearing test was in normal range and they discharged him from the ENT clinic . Within a few weeks we, and his teacher, were noticing probs again so GP has re-referred him, but warned that he will go back to the start of the process.

So I now want to know about going private- how you go about it, what is the cost, who does it etc??? I am especially keen to see if we can see a consultant privately who can then refer him to get it done soon on NHS- I am not trying to queue jump, but we have now been waiting for this for 3 years and it is really affecting his quality of life, as well as his education.

An advice would be appreciated.

No idea about grommets. But I've had dealings with nhs vs private. I take my 4dc privately to be treated for orthotic insoles which greatly improve their legs/hips. Improvement was immediate when fitted with the insoles. My gp referred me nhs as the cost was quite big privately (each set of insoles cost £100 then the consultation on top), we are nearly 2 years down the line and nhs have not provided me with an adequate set of insoles... my view is I'd rather pay and have my children without pain.
Your gp would tell you where you can go privately, but the grommets would be done privately also. Even if you see a private consultant, I doubt they could refer you to an nhs waiting list, but even if they could you'd be in the same position on the list.
If you can scrape the money together I'd go privately. It shouldn't have to be that way but sometimes it just is.

Ds has had grommets twice on NHS. Nothing like your experience. The first time they didn't do a hearing test at all (he was only 18 months) but did the op within 6 weeks. The second time they had him in for the op two days after the main appointment, his hearing was just below the normal band, and had been at the bottom range of normal the previous time.

Why are the grommet ops being cancelled? Are you cancelling? Or are they looking and saying they don't need to do them? Because being re-referred from scratch sounds strange. If it was just cancelled due to illness or something then I would just expect to get a repeat date.

Dewe-

Ds was referred put on waiting list for grommets after a yr of 'watchful waiting.' After a year he was admitted to hospital, on the ward (in his pjs and everything) and the hospital admitted 2 emergency patients and needed his bed so we were sent home. Its a small regional hospital with just 1 small children's ward.

6 mths later a new date was sent for his op. We got to pre op the week before. He had been booked in to have his tonsils out and grommets in. The doc at pre op decided that he didn't need the tonsils out just the grommets but would not let us keep the admission date as it was now a different procedure. This was Sep 2011. In Jan 2012 the appt at ENT clinic finally came through and his hearing test result was awful. However the doc told us that as this was now classed as a new referral ds would have to 'qualify' for the procedure from scratch- which he explained entailed having 2 consecutive poor hearing tests. In May 2012 he got a nasty bout of tonsilitis and ear infection which took 2 courses of antibiotics to clear up. After this his hearing improved for a couple of weeks during which time he had his first ever hearing test that was 'just below normal range' and they discharged him. Within a couple of weeks his hearing was as bad as ever.

We have just been to the GP to be re- referred to ENT clinic-he was furious that ds had been discharged. However it will be 4- 6 months before we even get an initial appt at ENT clinic. He has now finished YR at school going into Y1 in Sep and this is affecting his education adversely.

DeWe I am very glad that you had such a positive experience of the NHS ENT system but if you read older threads on mumsnet you will see that you appear to be the exception rather than the rule. Whether intended or not your post came across as more than a little rude.

ATM, that sounds tough for your DS. My DS had grommets done last week, luckily our referral from the GP to ENT to OP only took about 8 weeks, but when he got into theatre he had a burst ear drum from an infection the week before, so only got one ear done. (I don't understand why they didn't check this before he went to theatre as I had told them he'd been ill, but that's a whole other thread!) I asked when they would book him in to get the other ear done and was told to go back to the GP and get re-referred (from scratch!).
I refused and insisted on being given an ENT appointment for 6 weeks time (by which time the ear will have hopefully healed) so he can get back on the list. Its a ridiculous system and a complete waste of time and money!
It seems that systems/processes vary accross the country. We moved from London last year and DS had had an ear infection roughly every 6 weeks since he was 1. The GP in London was rubbish, it seemed obvious he had glue ear or something similar and he did nothing. Luckily in our new location things have been much quicker, I guess due to less demand.
A friend had a similar experience to you with her DS, she did see a private consultant and got referred for the operation on the NHS, the waiting list time was still the same, however, it was quicker to get a referral. Do you have a local ENT A&E ? There are regional ones, it might be worth turning up there next time DS has an ear infection to see if that gets him seen/referred any quicker.
Is there any way you can speak to the SENCO at his school and get her to write a letter to the GP/ENT Clinic saying how the glue ear is effecting his progress. Or if he sees a SALT get her to refer directly?
Sorry not to be able to help you out with info about going private. Good luck

As to how to arrange it privately. Go to Gp and ask for referral letter to an ENT consultant at a local private hospital (you can look for one via Bupa website yourself or the GP will probably know of one (or will look one up on website)). Ring the hospital and ask for an appointment with the consultant and say that you will be paying yourself (i.e. not via medical insurance). Fax the letter from the GP to the private hospital.
Our consultant visit costs about £120 and the hearing test on top is about another £120. Expect consultant to check ear nose and throat, take the history and look at the audiogram/tympanogram.
If the consultant thinks grommets are required - get a quote - I think we were quoted for the hospital charge, for the consultant time and for the anaesthesiologist's time about £1300 in total. You will also need to budget for a post-op check (consultant plus audio tests) and probably a further check up each 6 months.

I'm [shocked] but not supprised, we had a terrible experience with ds1 getting to see the consultant (audiology fancy themselves as gate keepers here and its up to them when you have waited long enough - for us that was the whole of reception) once we saw the consultant its been very straight forward. For ds2 we bypassed the clinc and went private twice (2 sets of grommets so far) and private for the initial consultation for ds3 (too little for op at private hospital under 3's need specalist paeds team). Once on the NHS lists it has taken 6 weeks to get the op done.

We were very lucky to be covered by dh's healthcare, BUPA. We went to the Nuffield
First Consultation £120.00
Follow up Consultations £60.00 each time
Hearing test £25.00 or £50.00 (they give a hearing test at each consultation cost varied although I'm not sure why)

I'm afraid I have no idea how much the actual procedure cost, it was day surgery. The bill for the anaesthetist was £195 if that helps.

I also paid to get full copies of audiology charts and doctors notes, letters and reports. It cost £20 from hospital but has been worth it to have the data to back up my claims (for me that was to get School to recognise his difficulty).

Are you getting the support at School? IEP and strategies in place? this was a battle for us too, although from you NN you may know the system better than me

I think any evidence from School, SALT, Health visitor - letters or phone calls they'll make on your behalf add weight to your request for grommets and may help with NHS system - it may be worth a try, sorry to suggest this if you already have.

In the meantime do you have any idea what ds's hearing level is? Would it be worth considering hearing aids to support him during this horrible waiting period? ds1 may have permenant high frequency hearing loss - he's now going into year2 and we are considering hearing aids to combate the flutating nature of his hearing.

Finally the National deaf childrens society have been a fantastic support, they really recognise the affect glue ear has on development and education, there is a discussion board too.

ps I'm sure DeWe wasn't being rude - she's been through the process with her ds and grommets and has lots of experience, I'm sure she just wants to help, she's given me great advice in the past x

Good luck with everything, I can throughly empathise with how hard this can be and hope you get a resolution soon xx

*checked hearing test cost - was £50 to do test and £25 to prepare and clean equipment so £75 each time

I'm surprised you found my answer rude. I don't really see why it was rude, just my experience, and I don't think it's an exception particularly, in people I know, both in this area and other areas. I put my experience as I was pointing out that the "two failed hearing tests" before grommets are not a standard rule across all ENT departments.

I'm sorry if you find my answer rude, but I think what I wrote was a valid response to what I thought was someone wanting advice in an area I have been dealing with my son since he was a baby.

ATM we've had the same experience!

DS2 was under audiology for about 18 months, during which tme he had repeated "poor" hearing test results.
They wanted to refer him to ENT, but I asked if we could wait and see if it cleared up by itself (as he was only 3 and not due to start school and not having any infections etc)
anyway, they said that was fine, but at his next appointment he had a "good" result, which was odd as he refused to play any of the games. and they discharged him!

i was shocked that he would get discharged after ONE improved hearing test, especially given that glue ear is well known to come and go, and that during the previous 18 months his hearing had always been poor and the fluid in the ear had been present.
I asked if they could check in 3 months to check it was still clear but no. he got discharged.

things didn't improve so we were referred back and like you we've had to start from scratch! 2 hearing tests in and he has been referred to ENT, but with a warning that as his last hearing test was borderline they may not do anything.

sorry, I realise this doesn't answer your question, but I just wanted to say that your experience doesn't appear to be uncommon (i know i am not the only one in this area to go through this).

i would ask your GP for advice on going private, they ought to be able to give you a name of someone who can do the op for you.
hope you manage to get it done and your DS improves

fwiw dewe I didn't find your answer rude ....

I don't think it was rude either, I think ATM read it wrong

Hi

Thanks for the advice- I have spent today pricing up private options and seriously hassling the NHS consultant's secretary it will be a huge struggle to get the money together if we have to get the op done privately so I am going to really push to try and get something done on NHS first.

De We - sorry if I took your comments the wrong way- I'm so used to being fobbed off by the docs I probably get a bit defensive. But no we certainly haven't cancelled appts. I'm at the idea of the whole process taking 6 weeks in some areas when I have been told today that I will probably wait 4-6 months for an appt now he has been referred back. You suggested that my experience was 'strange' which I have probably taken the wrong way.

I have always got the impression that ENT in our area is desperately overstretched- the clinic is literally bursting with kids whenever we go,its a real conveyor belt. Similarly the private hospital I spoke to today said that criteria in our area to 'qualify' for grommets has been tightened.

His teacher has been immensely supportive but we have had to do so much work too- and its quite tough on ds to have to do tons of work every night with me because he is struggling to follow what goes on at school. This is a bit of a catch 22 though- because we help him so much his attainment levels at school are fine and so he is not a big concern to anyone- its just that I feel he would achieve a lot more if he could bloody hear properly. I'm training to be a primary teacher and so am well placed to support him but its a strain on all of us to have to do so much out of school.

Thanks for the advice.

Hello, has anyone any recent experiences of the wait time for grommets, from referral to operation time? My granddaughter has just been revered and her speech is suffering. Wondering if private route would be best? What costs may be involved. We are based in Hertfordshire

If you are anywhere near Leicestershire I can highly recommend Professor Rea ENT consultant works both in the NHS and from the London Road clinic in Leicester city centre.

Have you thought having their tonsils out to see if it helps with the ears? Could that be cheaper
Also sign up for Bennenden because I don't know if they do the gromits but can do the diagnostics for you xxx so horrible to see your child suffer all of my love