..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 suggest you write down the length of time you have had them, every single treatment you have had and what you, yourself has tried over the counter. Then write a letter and email to the lead GP of the practice with that info and how it is affecting your life and ask for an explanation as to why they have flatly refused to send you for a referral to ENT.

They will do a tonsillectomy for those reasons but will be very reluctant to. This is why you need to make sure you are very factual with your reasons and just how much it is affecting you mentally. I'd then ask them exactly how they intend to treat you and fix this condition with a time scale.

Op that sounds horrific, yours is an actual medical need as it impacts you swallowing and obviously infected. You need to see a different GP and insist on an ENT referral don't accept no. Even if it means changing GP practices.

Go back to GP as others have suggested above with a list of the impact this is having. Ask directly for an ENT referral, if GP refuses then go directly to your CCG - write a letter and they will investigate on your behalf.

Don't give up, this is having a huge impact on your activities of daily living. Contact PALS too. Copy Practice Manager in, start getting serious.

Good luck. I had my tonsils out 3 years ago age 39, recovery was horrendous but only for around 4 weeks. Not had one throat issue since.

Each GP is treating this as a one-off appointment and recommending standard treatments. I had something different where the GPs were doing this. I booked a double appointment, said I want to explain why I need a referral and I just want you to listen. Then I read out from a list all my symptoms and their impact, and all the treatments I had tried and how none of them had made any difference at all. I got a referral and treatment.

Contact your local PALS and escalate this

I have tonsilstones. Even getting rid of your tonsils won’t get rid of them, you can do it naturally as it’s a build up of bacteria that forms a solid mass.

If you breath / taste is bad it may be that there are stones under the skin, which are not visible. Apparently they can grow up to 1cm under the skin even though the ones on the top are relatively small.

I would go to your gp armed with as much information as possible, talk about the question of embedded stones, your mental health, details of your continuing weight loss and concerns you will soon become nutrient deficient etc. Sell this as a referral to ENT to check the tonsils, ascertain the size of the stones and remove any embedded stone.

Once you have your referral you’re out of your gps hands and you can discuss the options including surgery with ENT. If you don’t get offered surgery, try to ensure they don’t discharge you back to the surgery or at the least get them to inform your gp you need to come back in x number of months if the treatment doesn’t resolve your issues.

Have you tried removing the visible stones?

At the beginning of March I was hospitalised, on a drip, with my 6th/7th bout of tonsillitis in the last 9ish months. They still wont take mine out.

I suffer from tonsil stones. Once you prod them out the smell goes away.

I also work in dentistry. Go and see your dentist they could reccomend something.

If the smell doesnt go away when you get the stones out then chances are you actually just have perio. Which is honestly the most horrible smell. It's the same smell as tonsil stones but constant.

I reccomend seeing a periodontist.

It could be your trust. Ours don't do tonsillectomies anymore

OP ,do you gargle,properly gargle for 10 mins at a time with warm salt water?

I used to get them as badly as you and gargling git rid of them. Ds started to get them when he was 7 and he got rid of them too,also with gargling.

Have you looked at the criteria for your area for tonsil removal? They all vary but unlikely to remove them for tonsil stones alone.
I have chronic tonsil problems including stones and tonsillitis. ENT agreed to remove them and I was given an op date, but the funding panel refused and then again on appeal.
My area you need 10+ episodes of bacterial tonsillitis alongside failure to thrive and evidence it's affecting your life, such as missing work. It's crazy.
There is a place in London that does laser treatments, try googling it. You can have them lasered off or just surface smoothed over to help with tonsil stones. It's cheaper and easier recovery than surgical removal.

Hi. Sorry for your experiences. I would insist my GP refer me to the hospital. Literally insist. Your mental health and physical health are important. Make the GP listen to the mental health disturbance you are having. The total change of your lifestyle due to pain and sickness and loss of well being.

Really hope you can move this treatment along to where you need to be.

I struggled to have my tonsils removed 5 years ago, the doctor was happy to refer me back to my arthritis specialist for him to give me more drugs but wouldn't refer for the ent, my arthritis specialist immediately referred me for a tonsilectomy, best thing I had done.
You do need to keep on at the doctors, write a timeline of everything, you may also find online a check list of criteria you have to meet

Even a bean counter could see that repeated GP consultation and hospital admission costs more than just having a bloody op that would sort the problem out!

This sort of thing makes me so cross. Please go to another GP and be persistent. All the best.

It won’t be down to the individual GP but to what the CCG funds. If they don’t fund tonsillectomy’s then they don’t - whichever GP you see. Likewise if you see a private surgeon they can’t put you on a NHS list if it’s not funded.

Find out your local criteria before spending your money

I'm a bit confused. Lots of these replies are from people who have had their tonsils removed on the NHS due to recurring tonsillitis.

OP said she has tonsil stones. Even if the tonsils are removed OP may still get tonsil stones.

Sorry but no GP is going to refer you because of tonsil stones.

• It won’t be down to the individual GP but to what the CCG funds. If they don’t fund tonsillectomy’s then they don’t - whichever GP you see. Likewise if you see a private surgeon they can’t put you on a NHS list if it’s not funded.

Find out your local criteria before spending your money*

This. My Trust doesn't do this anymore either. It'd be pointless pushing it for it here, they don't do it.

My friend had this and went private, I don't know what they recommended but it worked. She borrowed £400 from me for the consultation and treatment, and within 8 days, she was feeling a lot better and there was a clear improvement.

I am a Dr but not an ENT surgeon. However, I have a good friend who is an ENT specialist. She says that tonsoliths (tonsil stones) on their own are not an indication for tonsillectomy via the NHS. In our area they would reject that referral because the NHS does not fund elective tonsillectomies for tonsoliths. Guidelines do not suggest it either. If your GP’s are aware of this the. This is probably why they haven’t referred. Locally we do accept advice referrals from GP’s, which are different from referrals asking us to see patients in clinic. I know many regions also do this- perhaps you could ask your GP to do this instead?

Tonsoliths form in the crypts of the tonsil and are more common in people with larger tonsils. They are a combination of food, saliva, mucous etc and can be worse in patients with “post-nasal drip” symptoms (rhinitis) as the excess mucous from inflamed mucous membranes in the nasal and sinus areas runs down the back of the throat and can lead to issues with tonsoliths. So your GP’s idea of a steroid nasal spray +/- antihistamines is not a bad one. And it is important to rule out silent reflux too, so although it is frustrating for you having to try various things it doesn’t mean they should not have been tried.

Can I ask- are you sure the smell is as bad as you think?

To PP who suggested asking for a referral to a centre of excellence for that specialty- depends on where you are as to whether that would be allowed.

In the area I work they will not sanction out of area referrals if that service is available locally. I.e. if there is an ENT service in the locality, then you must be seen by the local specialist. The specialist can refer to an out of area sub-specialist if there is nobody locally and it is deemed clinically necessary. So you can demand all you like but GP’s in our area would simply not be able to do what you ask. They could apply to the exemptions panel but they would be highly unlikely to be successful.

Get referred to a private ent consultant then they will list you on the nhs. Believe me I work in this field and this happens all the time.

Write a letter outlining the distress you feel and reduction in your quality of life. If still no luck go through PALs. You could speak to your MP after that if that doesn't work.

This system of not being able to see any specialist at all unless you go through some gatekeeper GP even if you are paying for it is ridiculous, outdated bullshit. I'd actually start trawling around to see about treatment abroad. It sounds a horrible way to live and I reckon the smell is as bad as you say, I believe you.

OP, agree with PPs. You have a few options.

1. Go and explain it's affect on your mental health and life and heavily push for an ENT. Go as often you can. Be insistent. I'd also request depression assessment highlighting why your MH is being affected.

Or,
2) Find a new GP surgery if possible.

Or,

3. Find a private ENT consultant and pay for a private consultation. In my area, consultants do both private and NHS work. In these cases, a private consultant can put you on his or her NHS list for treatment (pathway) if needed. If the private consultant does not have an NHS list, they can write to your GP explaining what's needed and they can request you be referred to an NHS ENT clinic.

HTH.

www.liverpoolccg.nhs.uk/media/3017/criteria-based-clinical-treatments-public-doc-2018-19-final-policy-document-v16-2018-02-22.pdf