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.

Borrow the money, it's cruel to let a child go through this, shame on this system so I humane.

Thank you again for all the messages and advice it's much appreciated. In regards to my American health insurance comment, I understand it probably isn't as cut and dry as paying into an insurance every month and getting everything top dollar,.however, we pay into the NHS through our wages and unfortunately the way I feel at the moment is that we get bugger all for doing so. As mentioned I'm also 8 months pregnant, and that means 'free' dental care throughout the pregnancy but my NHS dentist can't see me because I hadn't had an appointment in 16 months they kicked me out of the dentist. Different problem altogether but you see my gripe with the NHS ATM.

I was bawling in bed less than 10 minutes ago listening to him snore and stop which is stressful to say the least that I have booked an online private consultation for next Friday afternoon at the local private hospital. Gonna cost £200 for the appointment but I honestly feel I can't sit by and do nothing..I'm praying and praying he will take sympathy and refer us onto his NHS list but wishful thinking comes to mind, but there is always hope!

I had my tonsils removed after numerous bouts of severe tonsillitis, this might help you OP https://www.valeofyorkccg.nhs.uk/rss/home/procedures-not-routinely-commissioned/tonsillectomy/ with knowing what to mention every time you see a GP to meet the criteria. As another poster said, it’s 7 bouts in one year, 5 each year across two years and 3 each year across three years. It’s absolutely awful for your poor son, but if he’s had 4 bouts already and it’s only May then I imagine he will have more this year which will push you towards 7 (unless you can go private of course).

Would it be worth taking him to A&E if he is severely unwell? They may be able to provide stronger antibiotics and fast track any care - in my experience antibiotics for tonsillitis don’t really start working until day 3 or 4.

I don't think you are being ridiculous at all! How frightening for you and your son. I would ring your local peds outpatients and ask them if they have any advice on how you can get a referral sooner. I have done this before and had some top tips from the person answering the phone who gave us some great advice for the different ways to get a friend's very poorly child seen by a peds doctor.

I feel your pain - my daughter just had a tonsillectomy 3 weeks ago due to almost constant tonsillitis since December BUT even though we were private the same rules still apply re: 7 recorded cases in a year, or 5 a year for 2 years running. It’s not just an NHS thing, it’s the NICE guidelines which any good ENT will follow.

This is what I’d do. See a consultant privately and they can refer you in for nhs treatment

i feel ya pain… DP had it reoccurring about 6 years ago, he had it 5 times in 6 months, they told him he had to have it more than 10 times to get referred, low and behold, he did and ended having his tonsils out aged 34.
dd’s friend was similar to your son, she had it about 6 times in 10 months, she finally got them out after 2 years.

I suffer with very occasional but really severe tonsillitis as an adult. I've been hospitalised a few times now and it is deeply unpleasant. What I would say is that it he is struggling with a particularly bad bout take him to a&e, they have started giving IV steroids as part of the treatment for tonsillitis and I could literally feel my tonsils deflating as it was pumped in.

Tonsillitis is actually horrific. I had it constant growing up and early teen and each time I dead given antibiotics and fobbed off. Then from November 2019-march 2020 I had it 6 times, as a woman of 30. Each time I was off my work bed bound the last time I ended up in hospital and the out of hours doctor said they tend not to do it on adults due to recovery time and risk of bleeding and infection I spoke to my work private health care and they said pay the excess and can be done within a week (lockdown happened) I feel terrible for your son because it's no joke it's horrible. My doctor had it bad end of last year and she was out the game for a week. The doctor threw penicillin, calpol, and a throat spray at me. X

See if you can get an obstructive sleep apnoea (OSA) diagnosis from the private ENT, that could move things along as its an ongoing issue with serious learning and developmental considerations. My son had his removed because of this, he was constantly waking though the night because he couldnt breathe (tonsils blocked his airway when he lay flat).

Sorry I meant daughter not doctor. Also to add we have very large tonsils both me and my daughter. Especially my daughter. I cannot breath through my nose so sleep mouth wide open and on a good night the two of us sound like we are having a competition on who can breath the loudest however when one of us has tonsillitis or a slight cold it's like the walls are about to come down 😂

If you can afford it, go for a private consultation (try to get the ENT consultant from your local hospital). In private consultation explain severity and provide all your evidence of pics and videos. The consultant may put you on his/her caseload as urgent if you ask him/her.

Thank you, thankfully my mum has helped me out massively by just listening to my concerns and being helpful and encouraging with me chasing it up. I know not everyone is as fortunate.

My daughter had her tonsils removed on her 4th birthday and the difference in her health was amazing! Can you borrow the money from yourNan without the family getting involved? If you go for initial consultation with the surgeon he might agree to do the op on NHS if he actually sees how grim the tonsils are !

You can complain about this to the ccg, although it might not change anything.

I'm so grateful that when my dd needed this operation we still had a labour gov, what the Tories have done to the NHS is criminal.

I had recurrent to tonsillitis as a child ( 5-6 times per year) until aged 25 years. Ended up with sepsis from tonsillitis & was very poorly. ENT consultant was astounded that I had not been referred & i said the same thing, I hadn't had it more than 7 times in 12 months. He said it was absolute rubbish, and a referral should always be made when there is close repeat infections. Ended up having them out a few months later & it was life changing.

i would ask to see the guidance & insist on a referral by the time he is seen it is likely (sadly) that he will have more bouts of it.

This is so unfair. My son had an ENT appointment recently just because his teacher at pre-school was worried about his hearing so suggested I ask the GP for a referral. The GP willingly did so. It took a few months, but he did get an ENT appointment. Your son's need sounds so much greater than mine and much more urgent. I know it's going to be different areas of the country etc, but it seems so unfair.

This is really similar to what happened with my dd, she did have grommets put in twice but tbh her hearing was still iffy.

Eventually I asked her hearing aids for her which made a big difference and eventually at age 11/12yo she outgrew the ear issues and her hearing improved on its own.

Our consultant just loomed at my kids throat. Saw how big the toncills were and agreed the op. No criteria needed. This was private.

Also my dd is now allergic to antibiotics as she had so many as a kid which she may well have not been if she was sorted sooner by nhs.

I hope the private doctor can offer some guidance and help.

I was your son - never met the threshold, always just under, suffered for years with it. It receded in my teens but then came back with a vengeance and I had my tonsils out mid 20s. Best thing I ever did - completely life changing, I have been so much healthier ever since. You are absolutely doing the right thing to fight for a solution- don't give up, it will be worth getting help. I think get the operation through whatever means you can.

Even now when I get a sore throat I get this really horrible feeling of dread, compete feeling of doom, and it's because of all those years of getting sick over and over again and being really unwell each time, missing lots of school etc. It's the best feeling to remember I no longer have tonsils and that the sore throat will pass without too much trouble. I am beaming just writing this!

If it is affecting the breathing, be careful it is not quinsy. This will most likely need urgent hospital treatment and may make a decision to remove tonsils more likely.

That’s really good to hear that she grew out of it, that’s what I’m hoping. Very worried that her left ear is so badly damaged now but hoping it’s not. I’ve actually requested hearing aids for her at my last doctor appointment and she put in another referral, that was about 12 weeks ago.

I don’t hate the nhs and work for the nhs but my Dd has an “urgent” cardiology referral… we log on to book and it says “no appointments available. The team will call you when new slots are uploaded”. I work in the hospital and was told it’s a 6-8 week wait (for a child with a potential hole in the heart). She’s been told no PE and not to raise her heart rate… she’s a lively, bouncy 11 yo ffs who generally feels fine so forgets there’s an issue. I’m pretending it’s all fine but it’s not.

oh and my 2ww skin cancer check; referral February and appointment May!

I had similar issues with my son when he was not much older than a baby. Got nowhere with my GP/NHS. I was desperate. Booked into private children’s ENT consultant via my private healthcare who after taking one look at him booked him into theatre for first thing the following morning. He said it was so urgent that he is operated on that he would have done it under the NHS had I not had insurance.
If you are London based, DM more if you would like his details. He is the most amazing man.
I hope you get everything sorted soon. There is nothing more stressful than having a sick child x

@TeenLifeMum

Bloody disgusting