NHS treatment for DS taking such a long time. Exhausted.

[Bassett54]

Posting here as no response on other thread just yet.

Around a year ago I took my son to the GP due to suspected sleep apnoea. They looked in his mouth and ears, said he's got glue ear and big tonsils and referred me to paediatric ENT as they suspect he needs a sleep study.

48 weeks later we have an appointment with paediatric ENT for them to look in his mouth and ears and say he's got glue ear and big tonsils and needs a sleep study, cue referral for sleep study.

I get that the doctors at ENT are more qualified in this area, but they knew he had glue ear and enlarged tonsils already, which I would have thought we could trust GPs to get right as its so basic.

It feels so protracted as they did exactly the same thing the GP did. He's now been put on a waiting list for a sleep study, which they said could be another 4/5 months, then another wait of 3/4 months to see them for a follow up, then the wait time to actually get him the surgery he likely needs. It'll be two years since the initial referral potentially.

I'm not bashing the NHS. I work for the NHS. I love our NHS. I know how hard it is. Even a GP I work with said it's mad that they are basically writing the same letter that they would've written and that she often thinks the same.

I'm just really frustrated that he's so young and hasn't been able to hear properly for so long. He's been labelled by so many people as likely having ADHD and being 'badly behaved' when in reality he's shattered and can't hear properly. I'm trying my very best as a lone parent.

Patenting him is exhausting because he's just so tired and overwhelmed all the time. I don't even know what I want from this thread. Just not coping very well atm!

I hear you. I had a gp appointment followed by three ent before I got my mri. The Ent appointments all did the exact same thing just apparently a more qualified person each time. Seems a waste of money and time for the nhs and the end user. In my eyes two wasted appointments as the first chap said I’d need an mri anyway. Mind boggling.

Anyway of saving for private diagnosis?

Not possible unfortunately as I just don't have the money.

Is it normal to wait 2 years for a tonsillectomy and adenoidectomy + grommets? It's such a common procedure and scary how many children are going through their formative years waiting so long for treatment for issues that can affect their development and cause permanent damage to their eardrums. No idea what the solution is if you can't afford private health care. It's so frustrating. The hospital staff are clearly frustrated too.

Hello,

This is exactly my experience, we initially raised this for my son at 12 months. We actually went back to the GP as my son’s breathing was becoming really concerning at night (helped to have video evidence on my phone) and he wrote again to escalate it. I would document the breathing at night particularly if there are huge pauses and go back to the GP with evidence if needed

Once we actually had the sleep study done my son’s operation was done within a few weeks as his oxygen levels were dropping so low - so that part was quick!

It's a dreadful situation. My son had grommets aged 5 and then again at 7 (he is now 12) and the waiting times were nothing like that, don't remember how long but it was pretty quick. My friend's son (7) is in a similar position recently and the wait is 2 years. He is already very behind at school because of his hearing and her Mum eventually agreed to pay for the private surgery, which also wasn't particularly quick.

Only advice is to make sure you call up and say you are willing to take any cancellations going. I did that when my other son was waiting for something else and ended up getting a last minute appointment the following week.