Tonsillectomy referral- how long did you wait ?

[Beeloux]

Hi all,

Looking for some advice and apologies for the long one in advance! My DS (18mo) has had 5 bouts of tonsillitis since May (1 incident he required IV antibiotics for it, 3 have been oral antibiotics and one they didn’t give anything).

Last night we ended up in A&E for a fast spreading non blanching rash and they confirmed tonsillitis. Every time bar one, he develops a non blanching rash with the tonsillitis, so we are sent to A&E for blood tests.

They were going to keep him in for IV antibiotics again but thankfully as the blood test came back normal, they let us go home with oral antibiotic.

The paediatrician recommended I book in with the GP to get a referral to ENT to get them removed. He explained that it’s normally 6 times in one year but as he’s had it so often recently, alongside the fact he snores and it’s effecting his sleep that they should refer him. Ever since birth, he’s cries for up to an hour when I try to put him down for a nap or bedtime and still wakes 4-5 times a night. I’m not sure if it’s related but he’s also very fussy with textures. He will only eat soft or mashed food. If I give him finger food, he will often gag and spit it out.

I was just wondering if anyone has been through similar? How long did you wait from the referral going through until they had the tonsillectomy?

Not only is it awful for ds, but it’s also stressful for me as I’m a single parent and have another young ds who I often need to find childcare for last minute if ds has to attend A&E. I’m also worried about his diet and nutrition as when he has the tonsillitis, he will only drink formula and refuses to eat anything. 😞

Any advice greatly appreciated!

GP appointment Feb 2024 who referred us, consultant appointment June 2024 and then given first op date of March 2025 which was unfortunately cancelled on the day. Eventually had them removed May 2025. Have heard of people waiting longer but also less so guess we were about average. If financially viable going private is significantly quicker x

Go private if you can op.

My 1 year old was referred to ENT in March this year. Apparently there is a 14 month wait and we still haven’t had an appointment. We ended up paying privately and she has just had her tonsils and adenoids out. Grommets put in.

Thanks both for your replies 😊Could I ask how much you spent going privately to get them removed? Also, how long did you wait privately?

I’m on UC and money is tight but have some savings (all declared to UC ) so If I can afford it I will definitley consider it. I hate seeing him in pain and not sure how I could put him in nursery and get back to work with him being on antibiotics for it so often. 😔

The wait for private was just under 2 months. I paid about 3.5k, but i don’t know if it would be slightly less for just tonsils.

NHS care has been so incredibly bad for both my kids (we paid for private physio for my eldest due to the long NHS wait) that if anyone tells me they are considering having kids, I strongly recommend they try and put money aside for private healthcare.

@Iocainepowder thanks so much! I will definitely look into it. Could I ask what company you went with?

I’m going to ring the GP first thing tomorrow. I think the paediatrician was sort of hinting he may be fast tracked as he’s needed iv antibiotics for it and it’s affecting his sleep so bad and he gets the sleep apnoea . I think he said it would probably be 3-4 months wait but not sure if he meant to see the ENT consultant or to actually get them removed (kicking myself for not clarifying!)

However I was told a similar wait to see a gynaecologist and still waiting 8 months later so not getting my hopes up!

It wasn’t a company, it’s a case of doing research in your local area to find private ENT consultants. You may have an extra challenge like I did as many don’t treat kids under 3. What area are you in? I had to travel to Oxford, which is an hour from me.

Yes get absolute clarification on whether the referral is urgent and timescales. But even then, i had surgery on the NHS last year and they changed the date 4 times and it got delayed by a further month.

Oh also the quote i gave you was just for the surgery. I had to pay £500 extra for the initial consultations.

@Iocainepowder Thank you. I’ll have a research into it today and look for ones in my area (I’m in North East).

I know exactly what you mean, I had a suspected cancerous cyst when I was 20 and my appointments/ultrasounds kept getting postponed. Ended up needing an emergency surgery as it ruptured. 😫 Thankfully it was benign in the end.

It will really be worth the money so I will most likely end up going private. Whenever these non blanching petechial rashes come up which he always gets with it, I get a horrible feeling of dread. It’s awful seeing him in so much pain with it and needing blood tests so often. I feel really bad as I always put his terrible sleep down to just one of them things but it’s most likely been down to the pain from his tonsils. 😔

Yes sleep was the main issue for us too. Obstructive sleep apnea (as well as some infections). It has utterly ruined our lives and my health.

So sorry for the late reply! Just seen this now. Bless you it is awful. I’m so exhausted waking up 5-6 times with ds and feel awful for him. He’s still on antibiotics and seemed to perk up but has been very grouchy today and took 1 1/2 hours of crying before he fell asleep so I think it may have returned. 😭

I took him to the GP who referred him but when I asked her how long it would be she just said ‘too long’. I think at this rate I will go private. However the local ones I’ve been researching say online they very rarely do anything before 2 year old. I will ring them up tomorrow to enquire. Thanks again for your advice x

If you don’t get any joy tomorrow, then keep looking for a private specialist. I thought i was going to battle getting my daughter treatment but he offered it without hesitation after examining her because it was so obvious.

I have been through this process with 2 of mine, planned to go private with the second one as the wait was 8-12 months and had it all booked (£5k) for the start of this summer but they decided his sleep apnea was bad enough to need overnight obs after the op so weren’t able to do it privately. Get on the nhs list for a referral and then ring the secretary once a week to see if they’ve had any cancellations you can take. They sometimes put extra clinics on and if they know you are keen and waiting they’ll give you one of those appts. If I was in your shoes the next time he gets it and needs a&e I’d push for iv antibiotics and and while you are seeing a dr on the ward ask if you can see an ent about having it done as an emergency or while you are already there. Worth a try