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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To get my child on the emergency ENT list?

34 replies

Starlight19 · 02/02/2024 12:17

My child is 3 and has severely enlarged tonsils and adenoids (grade 3-4). She has was referred to the ENT consultant when she was 2 and has been on the waiting list for treatment for almost a year. We have also been waiting on a sleep study for almost a year due to having sleep apnea.

She stops breathing in her sleep every night. I have bought an oximeter and she regularly is in the80s when she sleep and can drop to the 70s during an apneic episode.

It affect her whole life and is having a catastrophic affect on her development. She isn’t getting any quality of rest due to the sleep apnea, she is failing to thrive as it is painful for her to eat (she is below the 0.4 centile), her speech is delayed and ahe struggles with excess mucus and saliva due to enlargement of adenoids and tonsils. She also regularly vomits in her sleep - I have watched her on the monitor. She seems to cough and have a panic attack due to difficult breathing with tonsils and this causes her to vomit.

I am at the end of my tether, I have tried to go private but I was referred back to NHS due to her age. Her whole development and quality of life are being severely affected. She is on the urgent list which currently is a year and a half waiting time.

I honestly feel this is an emergency case, how can I get her procedure expedited?

I have been taking videos, photos etc of everything. Can I put together a case and get my GP to forward to the consultant? I am so desperate.

OP posts:
Merrow · 03/02/2024 16:05

I agree with@stressbucket1 . Calling through to the consultants has been the thing that worked for us. Definitely stress the sleep and developmental delay. We got a cancellation appointment a year earlier than we were told to expect.

Chimpandcheese · 03/02/2024 15:53

Has she been see by ENT and is on the list for surgery, or waiting to see ENT? If she has seen them, did you tell them about the sleep apnoea? It does sound like it needs doing urgently. Regarding her development, try not to worry too much as I’m sure she’ll catch up.

Hankunamatata · 03/02/2024 15:48

You need to find peadatric ent surgeon who will do it privately. They do exist but you have to hunt

Hankunamatata · 03/02/2024 15:47

My son was on urgent list for surgery for same issues still was a 3 year wait. Non urgent was 5 years

stressbucket1 · 03/02/2024 15:45

Is she on the waiting list for surgery? Best plan is to call the consultants secretary and ask to be put on a cancellation list, explain the symptoms and results from your own sats monitor and ask for the sleep study to be done urgently. That will show the sats dropping overnight and I'm sure they will speed up the surgery after that.

Starlight19 · 03/02/2024 15:41

Hey @Hotchocolate2023 not sure if you saw my reply. I looked at the waiting lists in another hospital, however, I don’t know if this will put me to the back of the queue again.

OP posts:
Starlight19 · 02/02/2024 17:42

Did changing hospitals allow you to keep your ‘place’ in the line from your first referral?

OP posts:
User79853257976 · 02/02/2024 12:21

Get a phone appointment with your GP and say she’s falling asleep in the day and delayed developmentally - that should get her expedited.

Hotchocolate2023 · 02/02/2024 12:20

The problem js that to even get on the list for removal the problems have to be severe so every child on that list will be in an awful position whilst waiting.

We did have to swap hospitals.for my son due to risk and one hospital had a 6 month quicker wait than the other. Could be worth asking