Feeling helpless about the NHS

[Friday3456]

I am writing this as I feel like a need to vent. My DS has had 8 ear infections in the past 7 months and countless antibiotics. He is living with daily pain and miserable. He has been referred urgently to ENT but it is a 26 week wait. We scraped together £250 to see a private consultant who did the pressures in his ears (10 second test) and said they were fine and that was it. I feel so helpless and don’t know what else to do.
Today has been a hard day, he has had ear, throat and tummy pain all day, is very congested and keeps getting upset. He’s been very tired and irritable. We attended NHS 24 to be told his ears were inflamed and that was it again. Just felt like I had to write this down as I don’t know what else to do.

If you’ve seen a private consultant who says his ears are fine, what is the issue with the NHS? If you’re not happy with that consultation then raise it with them.

The fact it’s a 26 week wait for an urgent referral for a child who is in constant pain! Numerous GP visits and OOH visits to be given countless antibiotics with no solution?? I’m sure if it was your child you would be feeling the same

Was the private appointment literally only to check pressures? Seems a bit rubbish that was it and no further suggestions or comments.

No it was supposed to be an assessment to see what they could do but that’s all he did. My son has just finished another antibiotic and ear spray which is probably why the pressures were ok. I left feeling very deflated

Did you not ask them if there was anything they could do ? What did they say ?

Nothing much. He mentioned maybe removing his adenoids and opening the nasal passages and possibly grommets but that was in the letter afterwards. Said he could refer me to his colleague but we don’t have another £250 just now

we now need to wait for the NHS to see what they suggest but that’s 26 weeks and there’s no relief just now for him

My point was it sounds like you’ve paid for a private consultation that was a bit shit although you’ve added more about what was suggested at the appointment now.

Surely the point of the private referral was to have the same level of assessment he’d have in NHS care? Sorry I’m confused.

I'm a little confused, was the private consultation with ENT or a paediatric consultant and that's why they didn't give any further support?

I would expect a private introduction ENT assessment to be the same as NHS assessment and so if there is nothing to be done then the 26 week wait as bit of red herring as that appointment might not be helpful either.

How old is your ds?

That is what we thought would be the case. He had just finished another course of antibiotics and an antibiotic spray so his ears would have been fine but that is just the outer ear.
he is seeing the paediatrician next week so I’m am hoping he will be able to offer some help. The NHS protocol is 4 acute episodes of otitis media in 1 year, my DS has had 8 in 7 months, I thought this private consultant would have looked at other causes like the adenoids. I probably didn’t put my first point across too well, just ranting after coming back from out of hours again. Just feel like he is being fobbed off by GPs with loads of antibiotics

My ds is 7 😢

Have you taken that letter to your GP? Have you called the NHS hospital and sent that letter to the ENT team? call them tell them this is what has been advised, how miserable your child is and don’t sit back and wait advocate for your child.

Thank you, I plan to do this tomorrow. It’s hard when you’re hitting so many brick walls.

Keep pushing

Private grommet insertion surgery is around d £5000, adenoids will probably add another £750ish.

I would think ear tubes should be considered. Currently in America and our son had six ear infections in four months. Was immediately sent to ENT after the sixth infection and he had surgery for ear tubes within four weeks. When he came out of surgery he said “my ears feel better.” It’s been a relief that he is no longer in pain and suffering.

The NHS allowing children to be in pain for many many months is shameful. It’s one thing that really worries me for when we move back.

Just to say in my opinion it’s not several infections, it’s the same one. It just hasn’t cleared up.

Go back to the gp and get a different and much stronger antibiotic for a longer period. That’s my recommendation.

Does he keep catching infections that set this off? There's so much flying around these days :-(
Hope the appointment comes through soon for you, but in the meantime if he can avoid infections that might help
Things that help with that are avoiding busy indoor spaces, good ventilation, clean hands, a mask if he could tolerate it (especially useful in healthcare settings where there's a high likelihood of other people being infectious), HEPA air purifiers at home and in his classroom if that was affordable. Also make sure he gets his flu vaccine when they're available. If you or other adults in the house catch anything, wear a mask around him to try and not pass it on.
Good luck I hope he gets the treatment he needs soon 💐

So sorry OP, I know how upsetting and frustrating this is. My DS had 14 ear infections in a year. He has been seen by NHS ENT team but I wasn’t satisfied. I tracked down the lead consultant and we were lucky that a private appointment bore fruit. He said the threshold for grommets is seven infections. He then referred us back into the NHS further the operation The grommets have really helped although since then he’s had one stubborn infection. We randomly were referred to an ENT nurse who auctioned all the discharge out and he’s been right as rain since then. 26 weeks is unacceptable. Keep pestering your GP for them to make an urgent referral. You could also email the private consultant and say you have follow up questions. Can he give you a call? Mention potential hearing damage to your DS to hurry them along. I know how hard it is to keep fighting the system hit try to keep going. If you have the secretary’s email or phone number, call her. Wishing you the best.

Do you have a paediatric A&E near you? You could try going in the day and they might be able to call down an ENT specialist. One way to get a second opinion or the suction I mentioned.

Also, is the GP swabbing his ear? They need to test for type of infection and antibiotic required, including any antibiotic resistance.

I’m not in the UK so this isn’t NHS-related but my ds was permanently congested when he was around this age and had to have loads of antibiotics to the point where they said he’s going to have to have his tonsils and /or adenoids out because we can’t keep giving him antibiotics.

We went to an ENT who said he’s on the cusp of the age where he’ll grow and everything - ‘pipes, tubes etc’ will get bigger/wider and it might sort itself out. We agreed to wait 6 months and started using a nasal saline rinse thingy (sorry, don’t know what they’re called in English); particularly when/after he had a cold but also if he seemed bunged up. The amount of gunk that came out of his nose - sinuses I guess - was unbelievable. Completely solved the problem though; he never got an ear infection again. He’s 17 now 😬

Might be worth a try?

(I would check with a doctor first)

Have you taken him to the dentist recently? Recurrent ear infections can sometimes be caused by untreated tooth infection. It could be something for you to rule out whilst waiting for the ENT appointment (which I hope you can get fast tracked).

Have you researched the antibodies. It’s possible the infection isn’t completely gone and starts to grow again. He may need a stronger longer dose.