To get my child on the emergency ENT list?

[Starlight19]

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.

Thank you! We currently are doing the sleep study this weekend. It is averaging sats of around 90, regular and sustained drops into the 70s and 80s and even some drops as low as the 40s 😱

Are you NI based? Just noticed your username.

My son has had similar issues since he was 2, grade 3 tonsils, awful glue ear, sleep apnea and mouth breathing. We had him listed for surgery (tonsillectomy, adenoidectomy and grommets) at the beginning of COVID and then it was obviously cancelled. To our horror he was 'removed' from the list post-covid as he'd grown so they felt they wanted to watch and wait...despite my arguing. He was 7 last month and we FINALLY have a date for a pre-op. It's been an exhausting rollercoaster ride. If I could turn back time, honestly, I'd have taken out a loan and gone private. At the time we didn't think we could afford to, but I wish we'd done it.

My son has no speech difficulties because I'm a speech therapist and have worked really hard on his speech from 18 months old. That was almost to his determinant though as one of the consistent ent arguments was 'but it's not impacting his speech'. It really was, his speech pattern was a mess but he just happened to have a parent who could support him with that.

Good luck OP.

Your best bet is to

1. talk to your GP and ask them to write to the consultant asking for her to be prioritised urgently due to her sleep apnea and failure to thrive
2. start phoning the consultant secretary every week; make it really clear how worried you are, tell her about the sleep study/failure to thrive etc
3. speak to PALS if the above don’t work

I was when I set up my MN account, but now living in England. I work in paediatrics, am used to looking at sleep study results from the perspective of whether a child needs non invasive ventilation, but same principles apply on what an acceptable sleep study is (and is not). And your child's definitely falls into the non acceptable side, and if it were me I would politely but firmly be pushing this all the way to the top. People are concerned that if they make a formal complaint it will negatively impact on their care. My experience from inside the NHS is that as long as the person making the complaint is reasonable, polite and logical, the reverse is true. Every manager wants to avoid formal complaints as they impact negatively on their stats, they are a headache and take ages to deal with in line with nhs policy, so will do as much as possible to avoid. My stance would be 'this is an informal complaint which will be progressed to a formal complaint unless we get an in person consultant review within the next 10 working days to re evaluate her sleep study results and her level of clinical priority'. The system is far from perfect, but its your job to fight for your child rather than worry about that. Good luck

@Bushmillsbabe Thank you that is really useful advice! I feel that the sleep study results will help to escalate things further.

what is the PALs equivalent over here?

We got a surgery date!!

The sleep study obviously showed very severe OSA to have such a quick response.

Thank you so much for everyone’s help and recommendations. Next up surgery prep and recovery!

Excellent news! DS1's recovery was really speedy, I was amazed.

My dd had the surgery last October, she was 5. Since then she now sleeps all night (first full nights sleep in 5 years!), hadsn't been hospitalised, been in an ambulance or needed steroids. Her asthma is under control, her mood/resilience is vastly improved and she's growing/gaining weight more consistently. She's age 6 wearing age 4-5 but big improvements. Doing very well at school. Surgery was a god send.