..to ask the NHS to pay for this?

[username8000]

Around a year ago I started getting tonsil stones. Started with sore throats and the feeling of something caught in my throat but progressively got worse and for the past 9 months I've more or less always got a putrid taste in my mouth 24 hrs a day, feeling of very little space to swallow or eat in my throat, weight loss due to the taste and not wanting to eat, and a huge impact on my mental health. I have went from a happy confident person to a recluse. I don't want to go anywhere that involves me speaking to people at close range as despite brushing my teeth up to ten times a day, changing my diet, rinsing with warm saline solution several times a day, I absolutely stink and there's nothing I can do to mask the smell. I have tried every single remedy possible including trying to address the root cause such as allergies, reflux etc but nothing works. I've been back and forward to my GP and been given antibiotics (didn't work), stomach tablets incase of acid reflux (didn't work and I had already tried this myself with over the counter medicine so knew it was pointless- I don't have reflux) , Antihistamines etc nothing works. My GP said they wouldn't remove my tonsils for this and scoffed at the suggestion as if this was a minor problem, which absolutely broke me. I know this isn't life threatening but it is ruining my life and affecting every aspect of it. I honestly don't know how long I can take it for. I haven't even been given a referral to a specialist but my GP insists they would remove them. I know it's a horrific recovery as an adult and there's reasons why they don't remove so often now but the alternative is just unthinkable for me- so I jus accept this as my life now? It sounds dramatic but I can't explain the depression this has given me when I have never experienced depression in my life. Can anyone offer me advice? AIBU to think that tonsil removal should at least be considered? I know people go private but I honestly can't afford it at all. Thank for reading

I see a few posters saying “go private and get the consultant to put you on their NHS list”. This would be dependent on area, again, I think.

A consultant working privately and on the NHS can indeed refer you into their own NHS list. They should not give you a shorter waiting time than someone who has gone through the NHS out-patient clinic referral route. They also should not list you for a procedure that the NHS does not fund, or for a procedure that the NHS does fund but not for the condition you suffer from. The idea being that everyone is treated equally. There has variable implementation of those rules historically though. However, given the current economic climate many areas are checking things more closely and removing people who do not qualify from the lists.

A colleague got into quite a bit of difficulty for referring someone onto their NHS list for a procedure that is not funded locally. It was argued that the consultant felt it was clinically indicated. They were told that if that were the case they needed to apply to the committee for exemption on exceptional needs grounds.

My point being that it is not as simple as it once was to bypass the rules. Some areas may be more relaxed about the rules and it would be possible. But not everywhere.

@itsbetterthanabox

No i can't see them as my tonsils are very far back and hidden so no way of removing myself. They do cause pain - I have a persistent cough due to the irritation and also get stabbing ear pain when they get really bad. I have went down a full size in clothing in the past 4 months due to my throat feeling so blocked that I feel like I could choke eating. Food also tastes awful 99 percent of the time so I no longer enjoy meals

In order to get a referral you could see a private GP in the private hospital and get the referral to the private ENT specialist. Get a credit card or beg/borrow from family or take a personal loan.

I had a problem (not same as yours) that I was fobbed off by NHS for 5 months. Eventually I got to a private ENT and it was sorted in 10 MINS . ENT said totally justified. The NHS can’t sort problems like this. No money, broken and inefficient system. Waste all over the place.

omzalas

You are incorrect. GP’s do not have to refer to a secondary care if they strongly feel it is not indicated. Or if they know that the referral will not be accepted (waste of their time). In our area a referral for tonsillectomy for tonsil stones would be rejected.

However, in practice, if a patient demands a referral they will often decide that the fall out from this refusal is not worth the hassle so they do it anyway. They don’t want to deal with the complaints and aggravation refusing, even if doing so would be clinically justifiable, because it’s just easier. It’s often a waste of their time, and mine when I come to get the referrals, but there you are.

I can often tell when a GP referral is done I a “I don’t think you’ll accept this but the patient is demanding I do this referral”. Of course they’re not always right but I honestly don’t think most GP’s are anywhere near as useless as quite a few MN posters seem to think.

Sometimes, I can see the patient’s point but my hands can be tied.

Vet the referrals, not get the referrals. The referral’s are looked at abd they can accepted, rejection or further information requested.

I'd honestly start doing research into private, OP, even with a credit card.

I can see now why some people go abroad for treatment. It's really unbelievable how so many are told just to get on with it when it's obviously affecting their physical health.

Your GP practice is shit! There are NICE guidelines for this, can't remember how many bouts of tonsillitis per year etc.. and the GP has to refer you. I remember being off work so much, I was actually on attendance review, constantly on antibiotics etc. The consultant offered me the op straight away. It went very well and the recovery was easy. Best decisions I've made and I've been a lot healthier since!

The whole gatekeeper GP thing still seems something else to me. My parents are French and you don't need to hunt round for a GP to refer you to a specialist there or try to find to find a GP to pay and beg just to see a specialist. What is that? Like making you an infant beggar. But the British just cling on to systems like this. I have gone abroad at times because this system is so nuts but have the benefit of having the language and help to do this and family in France.

can't remember how many bouts of tonsillitis per year etc.
She doesn’t have tonsillitis.

I went abroad to have to have bad diastasis recti corrected. Even after a load of private physio I looked about 5 months pregnant and my back was in agony! I have had knee surgery in the past from skiing injury and pins in one knee and both my knees were also in agony and I developed sciatica and plantar fascitis. Was just fobbed off. My French doctors were incredulous that women are left like this.

If you do end up down the private path then I would look for someone who can do a Tonsillotomy (reduction under local anesthetic) as well as a laser/diode tonsillectomy as if you are suitable it can be a lot cheaper. See here for example www.mikedilkes-entlaser.co.uk/tonsil-stones

Drones the gate keeping in this case is cost driven for a system that is free at the point of use. Which makes the nhs super in a crisis or for very serious issues but poor for things like here.

Of course go private and you can either just refer yourself (I did to see an ENT for repeated tonsillitis self paying) or your gp will normally write you a letter if you use magic words like “private patient” or “private medical insurance”. But not that many people are lucky enough to be able to word that. I fortunately could but the OP can’t.

I don’t think all HCP’s agree with every funding decision- I know I don’t- but I do recognise that with the system we have someone has to make the decision about what will and will not be funded because we can’t be “everything to everyone”. The UK spends less per head of the population on healthcare than many countries do. That decision has consequences- some things that are funded elsewhere are not funded here, for example. Another would be longer waiting times in a&e, for out-patient clinics and for surgery. I’d also say that just because something is done/prescribed routinely abroad but not done here, it does not automatically follow that they are right and the UK wrong.

Of course go private and you can either just refer yourself (I did to see an ENT for repeated tonsillitis self paying) or your gp will normally write you a letter if you use magic words like “private patient” or “private medical insurance”. But not that many people are lucky enough to be able to word that. I fortunately could but the OP can’t.

Ah, I see but I am confused because, please forgive me if I am misreading, it appears from this thread that even if she does take out a credit card she would still need to see a GP or a private GP to get to see a private ENT?

I have just not bothered in the past, I had one GP tell me I was just 'angling for a tummy tuck on the NHS' and implying it was vanity driven and offering anti-depressants when in fact I was in serious pain, still had several centimetres of separation of muscle after a year and 6 months of physio that was paid for privately (I had been offered just a few sessions on the NHS and then sent on my way without even being told the outcome, which I knew was poor because my back still hurt so much) after giving birth to my 3rd child, who was very large for my frame, so I just thought fuck this, I'm going to France to see someone but again, I have the benefit of French being a native language besides English and family and friends there who could help.

No, I agree, jacks, but it does appear this is quite serious for the OP and that nothing will be done on the NHS for her. I do not believe she is exaggerating or over-stating her condition and its impact on her life, it is truly troubling to read, frankly.

I would not be able to be pain free and able to exercise again to keep myself healthy had I not got the treatment I was able to receive with help. That is very sad because I am sure I am not alone.

Drones many private consultants will see patients without a gp referral and as I said I self referred to an ENT without one. This can be found out by speaking to their private office or looking at their website which most will have these days to find out their requirements.

Op, I really feel for you and can relate.
It’s frustrating how little advice there is for tonsil stone sufferers in general. The smell is horrendous and completely socially unacceptable, I don’t think I could ever date someone like this. I’ve tried most tips others have mentioned with little success. I get extremely paranoid if someone gets too close to me when talking, constantly carry mints etc

I’m saving up to see the ENT specialist Mike Dilkes mentioned above ^ but I can’t seem to find any other ENT specialists who claim to treat tonsil stones in the UK? (I.e. perform laser cryptolysis)

Ah, that is good to know, Cloud. I have also grade IV piles, 1 internal and 1 external, but I want the HALO procedure for removal as they do bleed from time to time (I actually had another, but it thrombosed and died), but was of course, aiming to return to France for this, and likely will as it is cheaper there but was also thinking I'd have to go round begging a GP for referral. At any rate, too, in France when you see the specialist it is known who will be doing the operation and not some toss up.

I hope you can have it done, lhw. I would even consider crowd funding or the like for such.

Drones if you go private in the Uk of course you know who will do the surgery, it will be the consultant you see. That is one of the key reasons to go private.

@lhw92 I found Mike Dikes online months ago when I was trying to find somewhere to do laser cryptolysis - he seems to be the only one and he's London based which is the other end of the country for me. The stones I have are not visible because my tonsils are so hidden that it appears I don't have any (one GP asked if I had already had them removed) so I can't see how they could laser the crypts away in my case, but of course I could be wrong. I read about the procedure on a daily mail article I found when googling. It was about a woman who was referred for laser cryptolysis and it talked about how it was a cheaper and quicker alternative to tonsillectomy and could save the nhs money and save patients a lot of pain and long recovery. I was hopeful that because the article was from years ago that it would now be available in most hospitals but seems it never became a thing

You are entitled to a referral to ENT, your GP is not allowed to block that.
My DS had problems for years with his tonsils and GP's always told me the NHS dont remove them anymore and to just suck it up. Fast forward many years later, he is an adult and I'm older and wiser. So I told him to go to his GP and tell them he wants a referral to ENT for ongoing issues with his tonsils and if the GP digs their heels in over it being minor he is to insist.

Referral came through quite quick. I went with him to ENT (he was 19 and has aspergers syndrome which is why I went with him). He saw a surgeon who after examining him said it's a low level problem but because its persistent and painful he'd be happy to remove them.

I was surprised and said I thought NHS stopped tonsil operations and he said that's not true, they've never been stopped. I told him that's what I've been told by many GP's over the years and he was quite annoyed at hearing that.

No surprise then that the waiting list for the operation was short, his tonsils were removed 3 weeks later and his recovery was very quick, nowhere near as bad as he was told it would be. He didn't even need the strong painkillers that were prescribed after and the pain went away after a week and a half.

I'm glad we persisted. I hope you get somewhere, dont give up and put your foot down with the GP over getting a referral. DS has never had any problems since.

bunny

You don't say what problems your DS has with tonsils?

Don't know if this has been said already but you can remove tonsil stones yourself.