Why are patients with recurrent tonsillitis being denied an op that spares years of pain?

For more than a decade, Laura Poole has suffered frequent bouts of tonsillitis so severe they can leave her collapsed on the sofa in agony for days on end.

‘There have been times when I have had to see my GP every few weeks to get yet another course of antibiotics to clear it up — it almost felt like my second home,’ says Laura, 30, a lifestyle coach from Newport in South Wales.

‘One time I was almost fired because of my absences. I was off sick every couple of weeks, and my boss didn’t believe it was tonsillitis, but that I was out drinking and too hungover to work.’

Laura is one of an increasing number of people in the UK having to put up with recurrent, agonising attacks of severe tonsillitis — inflammation of the tonsils as the result of infection (causing symptoms such as a sore throat, cough, exhaustion and swallowing difficulties) — because it’s become so difficult to access tonsil removal surgery, or tonsillectomy.

‘Any time I asked my GP about the possibility of having my tonsils removed, I was told the same thing; that the NHS doesn’t do that operation any more,’ says Laura. ‘In the end I stopped asking, and just assumed I couldn’t ever have it.’

Now, though, a landmark UK study suggests that potentially thousands of patients, like Laura, are being wrongly denied the surgery that could free them from regular attacks and transform their quality of life.

It shows tonsillectomies are not just clinically effective, reducing the rate of sore throats by half, but could save the NHS precious cash if offered more widely.

Once one of the most common types of surgery carried out on the NHS (in the 1950s and 1960s about 250,000 patients a year had their tonsils removed), numbers have now dwindled to around 20,000 a year in England, since studies suggested an operation was often unnecessary, as recurrent tonsillitis could eventually settle down.

The tonsils are two lumps of tissue at the back of the mouth which, for years, were thought to be of little value. Because of their position, they form part of the immune system’s first line of defence against bacteria and viruses that enter through the mouth, which means they can be easily infected.

In the majority of cases, tonsillitis either clears up on its own or with a short course of antibiotics. But for recurrent or severe cases, surgery to remove the tonsils is the only effective option.

It’s not clear why some people are so prone to repeat infections. Research suggests a number of theories, including a genetic element to it.

The tonsils are made of lymphoid tissue, which makes proteins to fight infections. Fortunately, other tissues around the body also make these proteins, so having the tonsils out does not detrimentally affect general health.

Since around 2005, the cash-strapped NHS has effectively blacklisted tonsillectomies as a ‘procedure of limited clinical effectiveness’, and funding for them has been cut.

Now the only patients who qualify for surgery are those who meet criteria set out in the ‘357 rule’ — a guideline sanctioned by the National Institute for Health and Care Excellence in 2010, which states that to qualify for surgery, a patient must have at least three bouts of severe tonsillitis a year for three consecutive years; five attacks a year for two years; or seven attacks inside 12 months.

But there has been growing concern that the pendulum has swung too far. Over the past 20 years, NHS hospital admissions for complications arising from tonsillitis have more than doubled.

These include quinsy, where an abscess forms between the tonsils and the wall of the throat which must be drained with a needle; and even life-threatening sepsis, where the immune system over-reacts to an infection by damaging vital organs. In some cases, patients need lengthy intensive care stays to recover.

Anecdotal evidence suggests even patients like Laura, who do meet the ‘357’ threshold, are still told by GPs that tonsillectomy is not available on the NHS.

Yet the latest study suggests the NHS should be doing more of these operations, not fewer.

Led by Newcastle University, the researchers spent ten years carrying out the study, which has been published in The Lancet.

They were asked to do it by the National Institute for Health and Care Research, a government body that funds high-quality medical investigations, to address a gap in the evidence on the effectiveness of the procedure.

The researchers recruited 500 patients aged over 16 with severe tonsillitis who all met the ‘357’ threshold. Half underwent a tonsillectomy and half had their infections managed with antibiotics and painkillers.

The study — the biggest of its kind to investigate the efficacy of tonsil surgery — found that over the following two years, patients who had their tonsils out suffered half as many sore throats as those whose condition was managed with medication.

And it worked out cheaper in the long run. The 30-minute procedure is usually done as day surgery and takes 20 to 30 minutes at a cost of £1,500 to £3,000, including general anaesthetic.

This contrasts with patients given multiple courses of antibiotics who then end up in hospital needing specialist intensive care, which can run up much bigger bills.

‘Tonsillectomy has been branded as having ‘limited clinical value’ due to a lack of studies to support it,’ said lead researcher James O’Hara, a consultant ear, nose and throat (ENT) surgeon at Newcastle upon Tyne Hospitals NHS Foundation Trust.

‘And over the past 20 years, the number of tonsillectomies has halved, while hospital admissions for complicated tonsillitis have more than doubled.’

He says some patients are suffering for years before they even get a referral to an ENT specialist.

‘Most people have to endure an average of 27 bouts of severe tonsillitis before they are referred,’ he told Good Health.

And this means much more than a scratchy throat: it’s not uncommon to suffer severe fatigue, nausea, swollen neck glands, pus‑filled spots on the tonsils and even difficulty breathing.

A2022 study in the European Archives of Oto-rhino-laryngology found that between 2015 and 2019, there was a 25 per cent increase in hospital admissions across four NHS trusts in the mid-Essex area for quinsy (also known as peritonsillar abscess).

This is a potentially fatal complication of tonsillitis, and as well as high-dose intravenous antibiotics, the abscess needs emergency surgery to drain pus.

Another study — by the Rotherham NHS Foundation Trust, published in 2021 in the journal Annals of the Royal College of Surgeons — found that since the late 1990s there has been a near five-fold increase in cases of ‘deep neck space’ infections — a severe complication of tonsillitis, where infection takes hold around tissues lining the throat and neck.

Roughly one in 20 patients who develops these complications dies from them.

‘I’ve spoken to several GPs who said they never refer patients for tonsillectomy surgery as it does not work,’ says Mr O’Hara. ‘There is also this myth that the NHS doesn’t do it any more because the evidence doesn’t support it.

‘Obviously, we are not going to go back to hundreds of thousands of operations a year. But the message to patients now is: if you’re struggling with repeated tonsillitis, tell your GP about our research and ask for a referral to an ENT specialist.’

Dr Tony Narula, former president of ENT UK, a professional body for ear, nose and throat surgeons, notes that although the new study was in adults, surgery is equally effective in children.

‘The Newcastle team has done such a great job in putting this straight,’ he says. ‘It means it’s now perfectly reasonable for patients to raise the subject of surgery, and hopefully GPs will stop telling them it’s absolutely out of the question.’

Laura still has tonsillitis roughly once a month. And now she knows surgery is a legitimate option, she plans to discuss it with her GP.

‘One time, it was so bad that I couldn’t even swallow the tablets they gave me,’ she say. ‘I had to go to hospital and be given it in liquid form. If that hadn’t worked, the next step was to have the drugs intravenously.

‘I also have asthma, and when my throat swells it affects my breathing, which becomes much more shallow than usual.

‘And the fatigue is awful. I can’t do anything apart from sleep.

‘Tonsillitis is so much more than just a sore throat.’