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..to ask the NHS to pay for this?

(112 Posts)
username8000 Fri 12-Apr-19 11:30:03

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

gottastopeatingchocolate Fri 12-Apr-19 11:38:03

Are you in a practice with more than one GP? Can you see another and push for a referral?

Order654 Fri 12-Apr-19 11:41:47

See a different gp. Change suregerys if you have to

username8000 Fri 12-Apr-19 11:43:25

I have seen four different GPs, all with varying levels of sympathy but none willing to refer me

Miffymeow Fri 12-Apr-19 11:45:24

I know the horrible feeling, I have the same issue but not quite as severe, still enough to affect me most days though. It is horrible always knowing theres stuff there and nothing you can do about it, makes me feel sick. I'm going private to get mine out but I would think they might consider it on the nhs considering how severe yours are. Just keep badgering them constantly, loads of annoyance, cry at the doctors etc and ask for referral to an ENT.

ArgyMargy Fri 12-Apr-19 11:47:33

If it's really ruining your life as you suggest, why not go private? Most private hospitals will offer finance. If you get told the same thing (ie they won't remove them) then you'll at least know you've tried.

username8000 Fri 12-Apr-19 11:49:11

Thanks Miffy, It really is such a horrible thing to have. Have you seen someone privately about yours yet? Or is it something you are planning to do in the future?

Melancholymuffin Fri 12-Apr-19 11:49:36

I paid to have mine removed as an adult. I had recurrent horrific tonsillitis, at least 1 bout a month for a year. The antibiotics I was in destroyed my stomach flora etc etc - they would not refer me. It was a pain to get the letter from the GP to let me get it done privately so I think the NHS are just against adult tonsillectomy’s full stop!
Mine was covered by insurance but I believe it would have been about 2.5k. Recovery was horrific. I honestly would only recommend it as a last resort.

TempNC567 Fri 12-Apr-19 11:50:54

I had mine removed on the NHS about 5 years ago for this. It changed my life. Have they actually asked ENT if they will accept the referral. If not, ask them to actually enquire for you.

Happyspud Fri 12-Apr-19 11:52:33

They won’t refer you for a tonsillectomy? But will they refer you to some sort of related specialist? GPs are limited when things are this level and this unknown. So get your GP to suggest their best guess at the right specialist to help you.

username8000 Fri 12-Apr-19 11:52:58

@ArgyMargy I phoned around private hospitals in desperation a few months ago but the initial consultation was min £300 and had to be paid before the appointment upfront which I couldn't afford. We are currently just paying our bills with very minimal left over money so we couldn't afford to take on a regular finance payment

username8000 Fri 12-Apr-19 11:55:32

@Melancholymuffin the thought of the recovery and the pain is preferable to my life right now and I can only seeing things getting worse so I worry about how bad I will feel this time next year. how long did it take before you felt better?

Alsohuman Fri 12-Apr-19 11:55:52

Ask for a referral to a specialist privately. Where I live even children no longer get tonsillectomies. Which is completely ridiculous.

LizzyBennett Fri 12-Apr-19 11:59:59

Round here, you can see an ENT consultant privately, and then you can be put on their NHS list (normal waiting list/times etc) so that way you only have to pay for the initial consultation

username8000 Fri 12-Apr-19 12:01:31

@TempNC567
@Happyspud

Each time I go the GP tells me they want to try something else rather than refer me, as I have been asking each time I go. I was told to finish a course of strong antibiotics which made me feel so sick for two weeks, then acid reflux tablets (I definitely do not have reflux) for 6 weeks, then antihistamine for 4 weeks, now I've been given a nasal saline spray and to go back in a month. Every time I go I come away feeling like I just want to give up and run away from everything as I am struggling just speaking to DH or DC now, I don't even have conversations with them anymore. I keep everything so short and try and keep a distance when I talk, it impacting everything. I used to go to baby groups but I stopped as it's humiliating when people move back from me when I speak

Birdsfoottrefoil Fri 12-Apr-19 12:04:10

Have you tried your dentist? See if they can suggest anything?

ScreamScreamIceCream Fri 12-Apr-19 12:06:56

* I haven't even been given a referral to a specialist but my GP insists they would remove them.*

I suggest you ask repeatedly for a referral to an ENT specialist. It is then up to the specialist to decide the right course of treatment.

They may do nothing or they may remove them. They are the specialist in that field not your GP.

If the specialist wants to remove your tonsils then you will be fine. One of my brothers' has his removed as an adult over 20 years ago and from being constantly ill with his face swelling he is now rarely ill.

Pollaidh Fri 12-Apr-19 12:07:25

I know you've tried antihistamines and nasal saline but have you tried a steroid nasal spray? It needs to be prescription strength. I use Nasonex 50mg and it made a huge difference - it was being caused by post nasal drip.

Dragonfly3 Fri 12-Apr-19 12:07:57

I think you should explain to your GP the effect it's having on your mental health and relationships and don't hold back - tell them everything. I get tonsil stones from time to time and the smell and taste are vile, it must be horrible for you to have this all the time. If they won't refer you because of the stones, then they may refer you to help your mental health.

SeaToSki Fri 12-Apr-19 12:10:58

Save the money for a private referral to an ENT. Have the appointment. They will be able to suggest the absolute best course of action for your personal circumstances, not based on what the NHS says. You will then be able to decide what you want to do now that you have that information. If they recommend surgery as a reasonable option, then you can go onto the NHS list, you dont have to stay private. But a specialist ,ight also have some other treatment options for you that would help and that the GP doesnt know about (because they arent specialists)

dronesdroppingzopiclone Fri 12-Apr-19 12:11:54

I would consider paying for a private GP to get a referral to have it done.

MrMeeseekscando Fri 12-Apr-19 12:13:17

I had mine out in January.
I went to the GP every week for a month because I just felt that ill.
It was a registrar that referred me in the end. I cried, I made myself a nuisance etc.
It's painful for a couple of days, not unbearable though.
Persevere. Cry. Book an appointment every week. Insist on referral. Ask for a second opinion.
It has been life changing for me and I'm devastated that I lived with these awful symptoms for so long.
People might try and say on here that it's a waste of resources etc.
Bullshit.
Ignore them. What about all the time I had off sick off the back of my throat infections? Fevers etc.
Good luck.
I really hope you get sorted.

McHelenz Fri 12-Apr-19 12:14:33

I have tonsil stones also, a few years a go they were terrible and I did get a referral to ENT on the NHS and they did give me the option to get them removed. I decided the risks to remove them were too high and manage with gargling currently.

wellhelloyou Fri 12-Apr-19 12:16:24

Sorry you're going through this. If it's having such a massive impact on your mental health and life then I really hope you're able to find a solution.

I would go into a GP with a typed list of all the things you've tried (prescription and non-prescription) and how none have worked. Tell the doctor how damaging this is on your mental health, find a way to make them understand. Don't leave anything out and try to persevere.

Wish you the best.

newhousestress Fri 12-Apr-19 12:16:29

Have you tried peroxyl mouthwash?

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