The children left in agony because the NHS refuses to take out their tonsils: It's a simple procedure that was once routine… but cost-cutting measures are seeing patients denied the op

Thousands of children are being denied surgery that would prevent them from needlessly suffering from tonsillitis every year.

Strict NHS guidance has prevented many patients from undergoing the procedure, known medically as a tonsillectomy, since 2018 in a bid to save money.

As a result, seven-times fewer patients are undergoing the surgery now compared to the fifties, despite a landmark study last year finding that the op, which is most commonly offered to children, is both clinically and cost effective. 

While the findings prompted NHS England to update its advice on recurrent tonsillitis, patients must still fit into strict criteria of a certain number of severe bouts they have within the space of months to qualify.

Parents have told MailOnline that their children have been left ‘struggling to breathe’ and ‘so ill’ due to tonsillitis but are still denied the op. Other patients, who meet eligibility rules, have also detailed being denied the procedure.

Guidance from NHS spending watchdog, the National Institute for Health and Care Excellence (NICE) states that tonsillectomies — the surgical removal of both tonsils — should only be carried out under the ‘357 rule’.

Under the rule, a child or adult 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 in order to qualify for surgery.

This rule is followed by the 40-plus Integrated Care Boards (ICBs), which control GP spending in England.

Each ICB has its own funding criteria and guidance for GPs considering whether to refer their patients to a throat specialist. 

Natalie Smith-Williams has suffered frequent bouts of tonsillitis for more than a decade, which can leave her in debilitating pain for days on end. 

The now 29-year-old has battled the infection at least three times every year since the age of just 14. Some years have seen her plagued with the condition up to seven times. 

Her GP referred her for tonsil removal surgery three years ago but at an initial ear, nose and throat (ENT) appointment in July 2022 she claimed she was told she did not meet the criteria.

A second referral months later saw the same outcome. 

She told MailOnline: ‘I felt so deflated, upset, angry and just annoyed. I know I meet the criteria because my GP even said I do due to the amount of times I have it.’

With few options left, she has been forced to try and raise the money needed for private surgery instead.

‘It’s affecting my asthma, it affects my sleep and it’s really affecting my mental health,’ she said. 

Katherine Sisk, from Malton in North Yorkshire, meanwhile, suffered the infection three to four times every winter from the age of six until her early 20s.

Now 44-years-old, she was told to take antibiotics on each occasion, which she believes has impacted her gut health. 

She told MailOnline: ‘It would completely floor me. The glands in my legs would swell as well as my throat.

‘I had terrible breath, no appetite so weight loss and obviously a painful throat and tiredness.

‘When my mum asked about me having them out they [Ms Sisk’s GP] said that they didn’t do it anymore as if you had no tonsils you were losing your first line of defence [against bugs].’

Ms Sisk was also told by medics, she claimed, that she would ‘grow out of it’.

The marketing agency owner added: ‘I did grow out of it, but not for almost 15 years.’

Her daughter Orlaith, now eight-years-old, has also suffered the infection three times since the age of five. 

She told MailOnline: ‘Doctors are reluctant to give antibiotics but she gets so ill there is no choice. Her airways close, she gets croup — its awful. 

‘But, removing her tonsils doesn’t seem to be something they are keen to do either.’ 

Once one of the most common types of surgery carried out on the NHS, with around 250,000 patients undergoing tonsillectomies in the 1950s and 1960s, numbers have now dwindled to around 35,000 a year in England. 

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. 

Recent research has also suggested tonsillectomies can prove both clinically and cost effective for adults.

In May, researchers from the University of Newcastle tracked 500 patients who were randomised to either undergo an early tonsillectomy or were given treatment such as painkillers and antibiotics.

Writing in The Lancet, they found patients who had a tonsillectomy had 50 per cent less sore throats over two years, compared to patients who did not undergo the surgery.

Dr James O’Hara, clinical senior lecturer at Newcastle University and consultant ear, nose and throat surgeon at Newcastle Upon Tyne Hospitals NHS Foundation Trust, said: ‘There has been variation across the UK in referrals from primary care for tonsillitis, with some patients having to experience three times the recommended number of episodes before being referred for a tonsillectomy.

‘Our research should level the threshold for referral for this problem, and clinicians can now be assured that tonsillectomy is effective for those who suffer with recurrent tonsillitis.’

The study prompted NHS England to update its advice on recurrent tonsillitis and the possible treatments available, publishing a ‘decision support tool’ in September offering additional advice to patients on weighing up treatment options. 

The procedure, however, is not free of risks for complications. The most common includes difficulty breathing after the surgery, affecting one in 10 patients, and bleeding, which impacts around one in 20.

According to the NHS, one in every 100 children who have their tonsils taken out will require a second operation to stop the bleeding. 

Around one in 20 children also develop an infection after surgery requiring antibiotics. 

Some research has also indicated that NHS funds were being wasted on unnecessary surgery. 

One 2018 study by scientists at the University of Birmingham found more than 88 per cent of surgeries between 2005 and 2016 to remove children’s tonsils were unnecessary.

Published in the British Journal of General Practice, the researchers looked at the medical records of children up to the age of 15 at more than 700 GP surgeries in the UK. 

Just 2,144 out of 18,281 children who had their tonsils removed had an ‘evidence-based need for the operation’, they said. 

But data has also shown that the number of children treated for complications from throat infections more than doubled since the early nineties, as tonsillectomy surgery rates plummeted. 

Leading experts have also blamed the rationing of surgery for an increase in the number of adults now seeking surgery for severe tonsillitis. 

Complications of tonsillitis include quinsy, where an abscess forms between the tonsils and the wall of the throat which must be drained with a needle.  

It’s not clear why some people are so prone to repeat tonsillitis infections. But research has suggested some children may have lower antibodies to the strep bacteria Streptococcus pyogenes, which can cause the infection. 

Others have suggested that some carry drug-resistant strains of bacteria, have weakened immune systems or live with someone who carries the bugs that cause it. 

Some parents, however, have become so desperate they have been forced to pay for private tonsil removal.  

Katie Brett, from Cleveleys in Blackpool, raised more than £3,000 for her now four-year-old son Konrad to undergo surgery in late 2022. 

In February 2020, at just seven months old, he contracted a virus Ms Brett now believes was likely Covid. 

‘He was struggling to breath and had raging temperatures,’ she told MailOnline. 

He was admitted to hospital twice in the eight weeks he took to recover, but was still left with breathing difficulties at night. 

Despite a referral to Preston hospital, he was regularly attending A&E after ‘getting poorly so regularly’. 

It was during one visit to the emergency department that doctors discovered his tonsils had swelled to such a size they were blocking his airways. 

Over the course of the next year his tonsils ‘were so big and sore that he was bleeding from the mouth, unable to eat and drink due to the pain,’ she said.

He also suffered high temperatures, urine infections, tonsillitis and recurrent sleep apnoea, the 32-year-old added. 

An ENT appointment with a consultant in August 2021 confirmed he would need his tonsils removed and funding was approved. 

But the waiting list was ‘ridiculously long’, Ms Brett told MailOnline. 

After fundraising online, Konrad underwent the surgery at Manchester Spire hospital more than a year later. 

Private healthcare providers also told MailOnline they had seen an uptick in tonsillectomy enquiries in recent years.

A spokesperson for Practice Plus Group, which offers treatments and procedures across the UK, said: ‘We have noticed an increase in enquiries and bookings for tonsillectomies over recent years, the majority of which are for people who have been told they won’t be able to access the procedure on the NHS.’

Evidence suggests the average cost of private tonsillectomy surgery in the UK exceeds £3,000, with myTribe Insurance — which offers info on private health insurance in the UK — listing it at £3,084.

It can in some cases drop to around £2,430.  

The exact price and waiting time varies depending on the choice of private hospital and surgeon, it adds. 

But the price by region also shifts dramatically, with those in Belfast expected the fork out £2,750 on average, while people in Glasgow can expect to pay around £3,321.