long wait for tonsillectomy - go private?

[Marlus]

My DS(3) has problems with glue ear, his tonsils and adenoids. We had appointment this morning with an ENT specialist, after a five month wait from being referred by a more local ENT doctor. As my son is under 15 kg (he doesn't like to eat, due to the tonsils) our local hospital couldn't remove his adenoids, tonsils and put in grommets as everyone, which everyone has agreed he needs. We thought the wait we have just had would be it (it felt long enough!) but have now been told that it will be another 8 or 9 months (!) although they will try to get him seen sooner due to his sleep apnoea. His hearing is affected, as is his eating and sleeping, and I feel this issue might well be shaping how he is interacting with others at nursery (minimally) because he cannot follow what is going on. Would you consider going private in this situation? We have no private insurance and have never considered this before, but more than half a year is a long time to wait...

That seems a long time to wait Marlus. If your little one is suffering with related problems with his tonsils and adenoids especially sleep apnea I would keep pushing for their removal via the NHS. My DD has had a adenotonsillectomy recently due to sleep apnea. She was 23 months and only weighed 10kg. All went fine with the operation and it has transformed her life. Has he had a sleep study done? If not push for one as this is what convinced our surgeon to remove the tonsils and adenoids sooner rather than later.

If this is affecting his hearing, eating (to the extent of being unable to maintain a normal body weight), sleeping, and social interactions then I would push the NHS a bit more first. I would probably start with a letter asking for a second opinion about how his case has been triaged in terms of urgency and follow this up afterwards through PALS. You could potentially seek a consultant opinion privately instead or as well. This will usually cost £200-250.

Whether or not you should pursue an operation privately depends a lot on what the NHS say, how the private opinion goes, how much the operation will cost privately, and your own finances.

If you can afford it then I wouldn’t hesitate to go private.

We had v similar situation
We went private the week after his 3rd birthday as our local private hospital wouldn’t do it under 3 yrs old.

As a child that suffered from tonsillitis constantly and had parents who could not afford private treatment I would say - if you can do it - do it.

My looooong wait for the nhs operation caused weight issues, food sensory issues and even effected my teeth. Please do it.

Thanks all, that’s very helpful. At his ENT apt yesterday, the dr did recognise the urgency and said he’d try to get him seen ‘a bit sooner’, but given that the waiting list is 8 months, that doesn’t seem very soon. Will look into the private option, I don’t even know how to start (in Scotland). Does anyone have any idea how much it would cost?

Hello OP. I had this with younger daughter - 9 month waiting list or thereabouts - so went privately. We did not have insurance. Local private hospital (with excellent consultant) did a package price for non-insured treatment so there wouldn't be any nasty surprises or extras. I didn't hesitate. Stuck it on a credit card then paid it off as I was able to afford. Awful when a little one is in pain and distress.

Call up your local private hospital(s) and ask for a price for a self-pay package without insurance. It's not as bad as you might think.

We were in a similar situation and decided to wait for two reasons:

1. In case the issue resolved itself (it didn’t).
2. So we could go to the NHS children’s hospital (which was brilliant).

Good luck with your decision and the op. Our DC was much, much better afterwards.

Thanks Sicario, would you mind sharing how much it cost?

PinPon our children’s hospital also seems brilliant and I’m a bit worried about going elsewhere. How long was the wait?

My child had the same problems including sleep apnea and being underweight. She has the surgery on the NHS (Bristol) 7 years ago. Even then it was a huge battle despite the consultants saying it was urgently needed and one of the simplest things they did that did with the highest impact on quality of life. Though not life threatening so not well funded.

If you can't get it brought forward and can afford it. Go Private.

Just phone your local nuffield or Bupa hospital and get a quote.

I seem to recall it was under 1000 quid, perhaps 850, although this was 20-odd years ago. If you explain your situation, they might even be able to do a special deal for you. I found them very approachable and helpful.

Yes I'd do it if I had the cash. Adenoids and grommets for my son four years ago was about £4k. No tonsils. But this is central London.

Our daughter had significant sleep apnea and was scheduled as a high priority case in the NHS before she was 2...9 months later we were still waiting. We had it done privately within one week. Please do it if you can x

Do it if you can afford it. I raised concerns to my son's paediatrician about his hearing when he was 4. We had a lot of faffing about and he was diagnosed with glue ear. More faffing about and in May this year he was put on the waiting list for grommets. Waiting list was meant to be 3 months. It has been 6 months and we are still waiting. He is now nearly 8 and has been struggling at school for 3 years.

My DS was referral to ENT on an urgent basis, appt came through Jan 19! We went private as we are on a scheme, he was seen 2 days later. If you can afford it, don’t hesitate.

Thanks everyone, it is really helpful to read about others' experiences. I have been given a price of £4000 by our nearest hospital, but also been told that realistically the wait is more likely to be 9-10 months on the NHS, and he has not been given any priority at all (despite what the dr said). We have just moved house, so have no spare cash - still on the fence about taking on a loan...would love to get this sorted, though!

Could you video his sleep to show if he has sleep apnea? Push for a sleep study and if that shows significant oxygen desaturation surely that should make him more of a priority for the operation. My daughter had sleep study and operation all within a month of each other.

That’s what we did Trying, our daughter was admitted overnight for a sleep study, and had already developed a chest deformity because her breathing was so compromised, and her case was classed as ‘urgent’. Which turned out to be a joke, as after many months of barely sleeping a wink, and numerous visits to hospital for turning blue..it was an A&E doctor that pulled us aside and said if it was his child, he would go privately ASAP. He said the ENT units were so overstretched there were huge delays. So we booked her to see someone the very next day. It turned out that her problems were far beyond the sleep apnea issues that had brought us there. But that’s another story..
The NHS is failing on this one I’m afraid...I have heard too many similar accounts.

That's absolutely terrible DNAP, sorry to hear your little one was so unwell. It seems to be diferent hospital trusts deliver such different care for similar issues. I hope she is much better now. To be honest, we would have went private too if she hadn't received her operation so soon after the study. I have had lots of horror stories about waiting times too unfortunately.

DNAP would you mind sharing what her chest deformity looked like? DS has two big bony bits, but I don’t know if that’s just because he’s so thin.

I also hope your daughter has recovered well! The hospital secretary was very encouraging to write to my MP about it - it must be awful for NHS staff too to have these long waiting lists because of the lack of resources and through no fault of their own. She also made me realise that by throwing our weight around and getting DS seen sooner, if we were successful that would just mean other kids waiting longer. Some of those might be more unwell than him, like your daughter....

Hi Marlus, our daughter’s got a significant funnel (Pectus excavatum) chest. It might be partly genetic, in terms of the immune condition she has, as she suffers from recurrent pneumonias. But we also know that having such bad sleep apnea throughout her formative young years, certainly didn’t help. Her chest was so visibly drawn in deep with every laboured breath, it seems inevitable in hindsight. Sleep apnea might be a common affliction in children, but it’s certainly not always benign. It’s a shame the system is so overwhelmed, that even the children who should be prioritised, are often getting lost in the system.

Thanks DNAP, our son has a very bony chest, which seems to be the opposite problem (pigeon chest), if anything, but it might just be because he is so skinny. Ironically, I have just phoned about private surgery, and the one consultant who can do the operation he needs around here can only see us at the start of February.... I'll go and post on Scotsnet if anyone can recommend anyone else - I am having a hard time finding another hospital that deals with underweight 3 year olds.

This might be of interest

theconversation.com/most-children-who-have-their-tonsils-removed-dont-benefit-106262