I paid to have my son’s tonsils removed when the NHS refused. It’s saved him from the misery of repeat infections. Hospitals now say it’s too expensive and unnecessary – despite doctors’ concerns for children. Here’s what you need to know

It was once one of the most common operations performed in Britain. For much of the 20th century, tonsillectomies – in which the tonsils, two fleshy mounds at the back of the throat, are cut out to stop repeated infections – were practically a rite of passage for children.

The legendary James Bond actor Sir Roger Moore recalled in his autobiography how, as a boy growing up in 1930s London, doctors decided to remove his tonsils after a bout of mumps and a ‘raging sore throat’. ‘I wasn’t really too sure what this would entail,’ said Sir Roger, ‘but was promised that when I woke up I would be fed ice cream.’

Sir Roger was one of some 200,000 patients – the vast majority of them children – who at the time went under the knife every year.

Today, fewer than 27,000 patients have their tonsils removed on the NHS each year – in large part because it now classes the operation as a ‘low clinical priority intervention’.

Experts agree not every child who suffers tonsillitis needs surgery. For most, the infections become less frequent with age – peaking between the ages of five and 15. And the operation is not without risk – bleeding afterwards is common, and in very rare cases it can be fatal [see panel on right].

However, a growing number of experts argue that the NHS rules are now far too strict, and that, in some parts of the country, many patients who do qualify are being turned away. They say thousands of children are needlessly suffering repeated infections, missing long stretches of school or ending up in hospital seriously ill.

Little wonder, then, that more and more parents are choosing to go private. Families who spoke to The Mail on Sunday said paying for the operation – which costs about £3,000 – was worth it to end their child’s suffering.

So when is the op right for your child – and is it fair that the NHS makes it so hard to get?

First, it helps to understand exactly what tonsillitis is.

The tonsils form part of the body’s first line of defence against germs, but they can themselves become infected and inflamed, causing a severe sore throat, pain when swallowing, fever and swollen glands.

Most cases are caused by viruses and clear up on their own within a week. But a significant minority are caused by bacteria, most often group A streptococcus, or strep A, and these are usually treated with antibiotics.

Until the 1980s, the operation was carried out almost on demand. But a US study led by the paediatrician Dr Jack Paradise at the Children’s Hospital of Pittsburgh, published in the New England Journal of Medicine in 1984, called into question whether so many children really needed it.

It followed children with frequent, severe throat infections, half of whom had their tonsils removed. To qualify, patients needed to have suffered seven or more documented bouts of tonsillitis in a single year, five or more a year for two years, or three or more a year for three years – the ‘3, 5, 7 rule’.

Those who had surgery did suffer fewer infections – an average of two in the following year, compared with three in those who did not – but the benefit was modest and faded over time.

The findings shaped NHS guidance, and the ‘3, 5, 7 rule’ became the official criteria for who was eligible – with a few exceptions, including recurrent quinsy, a serious complication in which abscesses form.

Experts have long argued that the rule is unscientific, in large part because Dr Paradise decided the criteria himself. It was not based on any prior research.

Then, in 2019, the NHS went a step further, putting tonsillectomies on a list of treatments to be rationed – alongside breast reductions and removing harmless skin lesions – in an effort to save £200million.

But experts say these criteria are arguably too strict.

‘I’m concerned the current guidelines make it harder than it could be for patients with severe tonsillitis to be offered this procedure,’ says Mr James O’Hara, a consultant ear, nose and throat surgeon and researcher at Newcastle University. ‘The NHS has to consider the cost-effectiveness of tonsillectomies to society, but the guidelines don’t take into account the potential impact of the illness on the lives of children and their parents.

‘For the child it’s a miserable illness, but there may be a financial cost for the family. When a child gets regular bouts of tonsillitis, their parents may end up having to take time off work to care for them, meaning they can lose out on pay. That can really add up.’

There is also evidence that many patients who do qualify are being wrongly refused. A University of Birmingham study published in the British Journal of General Practice in 2019, which examined the records of more than 1.6 million children, found that of nearly 16,000 who met the criteria, fewer than one in seven went on to have the operation.

And Newcastle University researchers have found some patients endure three times the recommended number of infections before they are even referred to a specialist.

‘Some areas will only count cases of tonsillitis that are recorded in medical records,’ says Mr O’Hara. ‘But many who regularly get tonsillitis don’t go to the doctor unless it’s really bad – meaning there’s no record.’

Between 1991 and 2011, the number of tonsillectomies in England fell by 44 per cent – but hospital admissions for tonsillitis rose by a staggering 310 per cent. In 2018, a study by Public Health England – now UK Health Security Agency – warned that since this reduction in surgeries, the number of children under 14 admitted to hospital with tonsillitis has soared.

So too, they added, have cases of invasive strep A, the most dangerous form of the infection.

The consequences can be tragic. During the winter of 2022, an unusually severe strep A outbreak claimed the lives of 61 children across the UK.

For most sufferers, tonsillitis is not life-threatening but it can be a distressing and debilitating condition. One of those affected is Taron Davies, seven, who suffered ten bouts of tonsillitis last year.

‘His tonsils would swell up so much that he would be in total agony,’ says his mother Rebecca, 34, a call centre worker. ‘He couldn’t speak, he couldn’t drink fluids. At times, he struggled to breathe. We were terrified he would stop breathing in the night. He would finish a course of antibiotics and the very next day his tonsils would start swelling up again.’

Although Taron met the official NHS criteria for a tonsillectomy, his local area had added requirements – something allowed under the 2019 rationing guidance.

‘We were told by our GP that Taron needed to have missed a significant number of school days to qualify,’ says Rebecca, who had her tonsils out at 20 after a bad case of quinsy. ‘But we’d tried to make sure he missed as little school as possible and some of his worst flare-ups had occurred on weekends. So we were told he didn’t qualify.’

Rebecca and her husband Jack decided to go private. The family had medical insurance, meaning it cost them only £100 – without insurance, it can cost between £2,500 and £4,000.

Taron had the surgery in August, which lasted about 30 minutes and he went home the same day. Since then, his mother says, he has not had any throat infections. ‘By now, he’d normally have had tonsillitis twice. The other day he was saying how nice it was to be able to breathe and eat normally.’

A new technique is increasingly used across the NHS, called coblation, where rather than cutting out the whole tonsil and surrounding tissue, as was done traditionally, surgeons use a low-temperature energy field to dissolve most of the tonsil while leaving a thin protective layer in place. Experts argue it means less pain, fewer bleeds and a faster return to eating and drinking normally.

‘There is a risk that the remaining tissue can get infected in future,’ says Mr Sri Mahalingam, a consultant ear, nose and throat surgeon at Nuffield Health Tunbridge Wells Hospital, who treated Taron. ‘But the risk is small.’

And there is a further problem. Many families simply cannot afford to go private – and research suggests they are the ones who need help most. A 2022 study of Scottish children found that rates of tonsillitis were highest in the most deprived areas.

‘I passionately believe that we need to conduct more research into the guidelines,’ says Mr O’Hara.

‘They are based on research that was carried out in the 1980s which lacked the input of patients, cost-effectiveness research, and consideration of the impact on a patient’s and their parents’ quality of life. Isn’t it time we looked at this again?’