Crying my eyes out and hating the NHS

[Starfish125]

I'm sorry if this seems ridiculous compared to other children's suffering but I'm literally at my tether and sat here in tears over what to do.

Basically my 6 year old son has been having recurrent tonsillitis since Xmas. From Xmas to today he's had 4 bouts of nasty tonsillitis and today being the worst so far. The tonsils are disgusting, swollen so he can barely breath, thick pus which makes his breath unbearable to be near (as awful as that sounds) and a temperature raging to 39.1. He's on day 2 antibiotics and so far aren't even working, hes off school and I've had a shitty letter about his attendance last month and now the tonsils look worse. I've been told by my GP she cannot do a referral to ENT until he's had 7 bouts in 12 months, and her hands are tied. I'm not mad at her but the whole system is so fucked. I am a qualified nurse working for the NHS and I'm sick to death of it. I actually wish we was like America, paying a health insurance but actually being seen and referred for stuff we need. We never use the NHS I seldom go to the GP or have regular prescriptions and the one time I desperately need their help I can't get it. I'm also 8 months pregnant with our third child and we can't afford to go private it's around 4k and I so desperately want to do it but where the fuck do the repayments come from? I'm sorry this is more a rant than general advice but i can't be the only one sick of this bullshit. My only thought now is to borrow 2k off my nan and have the other 2k as a loan but doing that isn't something I would do lightly as I'm sure my uncles would kick off about her lending me money. Can anyone give me any useful advice at all? Or kind words.

If you check out mse it will show you the best current 0% cards and the longest are usually about 2 years...
I don't encourage debt but for this? Absolutely
Good luck. I really feel for you xxx

You can keep moving the balance, yes.
We've used them in the past and for specific, important things and paid off as quickly as we could

The protocol's in place because most people grow out of it after a number of episodes. It's a fairly risky procedure (anaesthesia plus risk of bleeding) if it is unnecessary because they'll grow out of it.

The Nhs aims to be evidenced based and the protocol is supposed to separate the people that are going to grow out of it from those that would benefit from the op.

I had the op after 11 bouts in a year at 24yrs having suffered throughout my teens onwards so I fully sympathise.

Once I had the op there was some pain but after 3 days I felt better than I had felt for years, so I definitely benefited

@HadalyEve glad someone pointed this out! We do NOT want the US system here - I really hope people realise it's not the one we need to copy if the NHS fails. Sorry about your DC OP - tonsillitis plagued me as a child too but never enough to have them out, it's horrible. Really hope you get it sorted soon.

The only way for us peasants to change this is to vote for a party that will fund the NHS properly- as it was funded by Labour pre 2010, who had, with the hard work of NHS staff over the labour years, brought down waiting lists and increased staffing, but all that got p'd away by this lot. It's as simple as that. Waiting lists more than doubled under the tories before covid, and tory-style brexit lost us a lot of good staff, so don't let them fool you it was covid that caused all this mess.

I have mates in the US. Believe me, you do not want to go that way. Just check out how much having a baby costs there- about 19 thousand dollars on average, and even if you're insured, around 3 thousand dollars isn't covered. Many thousands more if there are problems. And check out what insurance doesn't cover you for, even if you can afford it. If a baby is born needing, say, heart surgery, here it costs nothing. There it could cost you your house (if you own it outright, imagine if you don't....). There are thousands of bankruptcies every year over there just for medical bills. Insulin costs hundreds of dollars a month and people were rationing themselves with it, which is highly dangerous (though it has gone down somewhat thanks to Biden, trump did nothing about it).

OP . I am sorry this is happening. I am a GP in NZ and we have similar rules for referral . If he is having difficulty breathing and what we call” apnoiec” episodes .. brief pauses breathing talk to your GP about that as it may help if your GP writes that in a referral
Tonsillectomy is major surgery and there can be risks major bleeding following.. I think hence the high threshold for numbers episodes.

Slightly different scenario as my 15month old has been poorly with recurrent ear infections since September last year. Like you we couldn’t get through the nhs system and she was so poorly, on antibiotics every 2 weeks on average. Anyway, we went private and scraped the money together (borrowed some/bit from savings/credit card etc) and she had grommets fit yesterday. If you can get the money to go private i would absolutely recommend it after our experience. Good luck 🌸

I am sorry this is happening, it sounds really distressing for everyone. For what it is worth I worked in healthcare in America for 13 years. It is not as easy as it seems and there are plenty of people not getting help with easy to fix things because of the system there.

Your GP is wrong, it’s 7 in one year or 5 a year over the last 2 years or 3 a year over the last 3 years.

Look up the CCG criteria for your area to confirm.

My daughter had recurrent tonsillitis but not enough to meet the threshold when the referral went in so we went around it by getting a referral to a paediatrician due to constantly being unwell/feeling unwell/temperatures even between bouts of tonsillitis. Paediatrician took one look at her tonsils and sent her straight off to ENT a week later and they agreed for them to be removed. She finally had them out a couple of weeks ago and it’s been so lovely to see her the best I have in a long time. Shes been better post op than before as she was always in pain and either unwell or recovering. It was a huge fight and I actually felt quite emotional when she had it done as the months/years of fighting were finally over and I finally felt I had got for her what she so desperately needed.

If you cant afford to go private now, how do you think youd be able to afford it if it was like in the US? You wouldnt. Medical bills are the highest cause of bankrupcy in the US.

Anyway, try getting a consult with a private ENT. That wont cost the world. And then you can assess what to do.

As for interest free CCs, yes, you can keep moving the debt. Ive moved interest free CC debt about 4 times, as the interest free rate finished.

However, most CCs will only give you a 1200 line of credit to start with.

This sounds horrendous OP. My oldest boy got his removed when he was 5 in 2014. Never had a case of tonsillitis, they were removed as they were so big his speech was affected! Can't imagine having to see a child suffer like that. Could you go private and stick it on a 0% credit card? Horrible you have to do it but would be worth it to see him well again.

My local private hospital does 0% finance. Check if yours does it. I’d do it in a heart beat. X

I’d put it on a credit card. It’s not really fair to borrow from your Nan if you can get credit.

I know this doesn't make things better for you, but I think this has been a common issue for many years. My mum had the same thing happen to her in the 1960s - she had constant tonsillitis and they wouldn't remove them on NHS. My grandma was a nurse and was worried the infections would kill her eventually, and paid to have it done privately. So even then it was a struggle to get tonsils removed.

I'm sorry you're going through this. I'm paying privately for an op which I'm having in 2 weeks, because the NHS wait is ridiculous. It's such a crap system.

Stories like thus make me so annoyed at the NHS even though I am married to a NHS consultant. The whole system is broken operations and referrals should not be made on a framework basis but based truly on patient need. The staff know this but their hands are tied by the "rules". My OH despairs at the way it's run now as he regularly sees patients in his NHS clinics that he has to manage expectations of over 12 months wait for operations that really should be being done sooner knowing that if they presented at his private clinic they would be sorted out within a couple of weeks. This is why he has always paid for full private healthcare for us and the children and we continue to pay for them individually even though they are no longer dependants.

My daughter had this for most of her toddler years and all through reception at school. She also never quite met the threshold. Now at age 6 she seems to have grown out of it which is I guess what the NHS are hoping for by making the threshold so high.

I went through the same with my dd. We hardly slept for worrying as we felt her breathing was cutting off during the night. Her tonsils were touching in the middle of her throat and she was constantly unwell. I felt they were treating me like a paranoid mother despite never attending for anything except tonsillitis. We finally got a referral to ENT who weren’t much better tbh with their speed in dealing with things but eventually we got a sleep test and she was whipped in the week after for her tonsils, adenoids and grommets. Her breathing had cut off 15 times during the night and what a bloody relief it felt to be proved right after fighting so hard. She first got tonsillitis at 18months and I would say from 2.5years we pushed this. She finally got her procedures done at 4.5years old. Due to covid she had no follow up check and has issues with her hearing still. She has since been back once and sent away with a stupid balloon to inflate as they aren’t keen to reinsert grommets due to them falling out so quickly. The waiting list at that time was 28 months. Despite me chasing this up repeatedly she is now at 8 years old with loss of hearing in one ear due to recurring ear infections. Out of hours called ENT to insist on them seeing her and they refused. They were mortified coming back in to tell me as before they left they were insistent she needed to be seen and they were concerned for the damage being done to her ears. I’m at a loss, we cannot afford to go private and I have a little girl who struggles day to day with her hearing. Thankfully she can lip read and do some basic signing but that isn’t always an option for her. I know there are many children who have it much worse but I can’t help but feel bad for my dd it’s like we are failing her.

Just came to say it's not up to the GP.
Your NHS Integrated Care Board locally defines the referral policy and any referral by the GP not meeting the criteria will be bounfed back. I've heard of people calling their GP practice to ask for a note on record to "report" tonsillitis and this was accepted as another bout. Good luck - it's rubbish the system has no money.

I think she might have tonsillitis again in 2 weeks and again two weeks later. No need for docs to see her as it’s the same as before just send a prescription to the pharmacy….

I believe the bleeding risk is much lower now they're mostly doing an encapsulation method rather than full tonsillectomy (I attended an ENT education session recently by an excellent consultant). I do remember the consultant recommended gargling with antiseptic mouthwash and regularly changing toothbrushes, as prevention of recurrence.

But as to the question of paying privately, yes I would borrow for this if it were my child. We borrowed money for DH to have a procedure done privately, which pained me as I'm also a nurse in the NHS, but he'd been missing work and the wait time was over a year. Would do the same again if needed.

I believe - though not certain - that where "X bouts in Y time" rules for referring children to ENT with recurrent tonsillitis exist, they are separate to referrals for "tonsils causing breathing difficulty" or "sleep apnoea" (or even potential apnoea which might be suggested by bad snoring. Talk to your GP again about the other additional issues you are seeing between or worsened by bouts of tonsillitis? Hope you get somewhere soon.

My goodness you must be absolutely furious.
Go chase them again and again. It is a disgrace that your daughter is losing her hearing and nothing is being done. Sending support and strength

Your GP may have been gently steering you that if you go back with tonsillitis in July, you should mention that your son has had two other bouts in between now and then.