To get my child on the emergency ENT list?

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.

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

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

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

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.

Re the sleep study, any periods of longer than 2-3 minutes below 80% would be considered severe sleep apnoea. Its not just how low they drop, but how long the drops last for and how quickly they come back up and how often they last for. Standard sats are 95-100%.
With readings like those, I would expect her to be pushed to the top of the list, but it will depend how many are also so severely affected. Hopefully when they receive your readings they will respond urgently.

Can’t comment on waiting list as not UK, but my very underweight 5yr old had hers out December, she literally eats double now. More energy (although always quite high energy) never had speech delay but had problems with making some sounds she was under SALT, they noticed a big improvement. Also just looks better, the bags under the eyes and tired/sleep apnoea look she had have gone. Many people commented how much ‘healthier’ she looks. I hope you get it soon, the poor kids who suffer with this it is so hard for them.

I’ve sent you a pm
op

He had slight speech delay and his learning at school was impacted by him being so sleep deprived. He’s now doing brilliantly at school.

My son fell asleep in the waiting room whilst waiting for his ent appointment. This was enough to get him onto the urgent list as they witnessed his sleep apnea first hand. They were also concerned as he was underweight due to difficulties eating. He ended up having his tonsils removed a few weeks later, it was life changing for him

He didn't do a sleep study - the consultant was satisfied with my description of his sleep (very heavy snorer, moments where he seemed to stop breathing then catch himself again, tossing and turning to the extent he fell out of bed frequently). He said it sounded like textbook sleep apnea. I'm not sure if it mattered but I realised after the fact that the consultant seemed to be one of the leading in the North West, so might have had more confidence in signing off based on a description alone!

There weren't any specific developmental delays in DS1's case, but the consultant was very keen to have the surgery completed before he started reception because of potential impacts of sleep deprivation. I would say that I noticed a vast improvement in DS1's mood - I hadn't realised the effect of what must have been constant low level tiredness must have had on him. He was very noticeable less irritable and could go on his bike for longer distances.

My son had the exact same issues and from first GP appointment to tonsil and adenoids removal was about a year. He was 4 when he had his op.
the sleep apnoea escalated him up the list and the doctors seemed quite concerned about it.

Hi OP

This was us 3 years ago
Told needed urgent operation (within6weeks) .. 18 months later we were still waiting
My daughter couldn't talk, sleep apnea, loosing weight etc

In the end I complained to PALS (became 'that parent' but polite) wrote everything out and 6 weeks later she was on the operating table

Sometimes it comes down to who shouteth the loudest sadly

Keep chasing via gp and phoning.
My dd waited for grommets and was really struggling. We had a hospital admission with it and they speeded her right up the list (unless it was coincidence).

Mine both had theirs out aged 4 for same reasons.

Best bet is call the secretaries and enquire about cancellations, mine magically got their theatre dates within weeks of chasing up 👀