The children left in agony because the NHS refuses to take out their tonsils
It’s a simple procedure that was once routine. But now, as thousands like Elizabeth know to their cost, there’s been a dramatic shift in policy
WHEN Nathalie Bailey- Fitter heard her daughter stir early one morning, it came as no great surprise. Elizabeth, 11, had been feeling unwell and gone to sleep with a sore throat and a slightly raised temperature, the comparatively innocuous symptoms parents up and down the country deal with every day.
But when Nathalie followed her into the bathroom, she found a scene like a horror film. ‘As I approached the bathroom I could hear Elizabeth vomiting,’ says Nathalie, 42, a charity worker from Nottingham.
‘And when I opened the door, I was absolutely horrified. There was blood all over the floor and the toilet. For a second I stood there in a state of shock.’
A dash to a nearby urgent care centre revealed Elizabeth had been suffering with tonsillitis so severe, the tissues had swollen to enormous proportions, become ulcerated and a blood vessel in one of them had burst.
‘I just felt like the worst mother in the world,’ says Nathalie, who is married to property developer Carl, 45, and also has a six-year-old son, Hugo.
With the aid of over-the-counter painkillers and a tenday course of penicillin, Elizabeth recovered quickly.
But less than a month later, the bug was back and this time her anxious parents rushed their daughter to the GP. Another course of antibiotics followed.
‘When it happened a third — and then a fourth — time in a matter of six months, I started to think: “This is ridiculous”,’ says Nathalie. ‘I really did not want her to have any more antibiotics. I’m a former nurse so I know taking too many can cause drug resistance and risks of side-effects.
‘So I asked her GP if she could have her tonsils out.’
A reasonable request, you might say. After all, Nathalie herself — just like millions of others in Britain over the past half century or so — had her tonsils safely removed at the age of five and suffered no subsequent throat infections.
It was then that the family came up against a controversial — some might argue obdurate and penny-pinching — NHS guideline that some parents fear is depriving their sick children of desperately needed surgery.
Guidance from NICE, the National Institute for Health and Care Excellence (which decides what treatments are worth funding on the NHS) states that tonsillectomies (the surgical removal of both tonsils) should only be carried out under the ‘357 rule’.
THISstipulates 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.
By ‘severe’ that means being so ill that you can barely breathe or swallow. A little girl found vomiting blood does not qualify you for an operation.
This rule is scrupulously followed by many of the 200plus clinical commissioning groups, which control GP spending in England.
Even two years on, Nathalie’s pleas continue to fall on deaf ears because Elizabeth falls just below the threshold.
‘It’s incredibly frustrating,’ she says. ‘What nobody seems to realise is that when Elizabeth is ill, she’s really very ill.
‘She is bed-ridden with a raging temperature, unable to swallow, can barely speak and needs a constant supply of painkillers just to be able to sleep. Her headteacher has even written to her GP about the impact on her education.
‘And she misses out on her football, which she loves.
‘I am well aware of the risks of surgery and I would never do anything that might harm my daughter without good reason. But I really think she needs her tonsils out.’
It’s not clear why some people — like Elizabeth — are so prone to repeat infections. Research suggests there may be a genetic element to it, but it’s also possible they carry drugresistant strains of bacteria, have weakened immune systems or live with someone who carries the bugs that cause it.
But why are doctors so reluctant to extract tonsils from sufferers nowadays? After all, it’s a relatively simple procedure, which can take just 30 minutes under a full anaesthetic, and costs between £1,500 and £3,000.
A standard stay in hospital, in comparison, costs £400 a day, even before any drugs and surgery.
Back in the Fifties and Sixties, around 250,000 patients a year went under the knife. The number started to fall as evidence emerged questioning the benefits. Nowadays, just 40,000 tonsil removals are performed in England a year on the NHS.
But do we need tonsils? They are two lumps of tissue at the back of the mouth. Although they were once thought to be of little value, scientists now know they are made of tissue which makes proteins to fight infections.
These same proteins are also released by other tissues around the body, so taking tonsils out does not have a major impact on health.
‘In the old days, surgeons were very quick to perform them on anyone who was suffering from tonsillitis and that was wrong — it was based on no theory at all,’ says Mr Adam Frosh, a consultant ear, nose and throat specialist at the Lister Hospital, Herts.
‘A significant percentage of patients with tonsillitis will get better by themselves, even without medication.’
Professor Tony Narula, former president of the doctors’ group ENT UK, agrees.
‘Surgery rates have dropped dramatically and that’s a good thing because it means we are much more careful about who we operate on and why,’ he says. Studies suggest that long- term health can be adversely affected by removal.
Scientists from the University of Copenhagen in Denmark and Melbourne University in Australia tracked the health of 1.2 million people over 30 years to monitor how tonsil removal early in life affected their wellbeing decades later.
The results revealed children who had tonsils removed were almost three times more likely to develop asthma and other serious lung diseases.
Removing the adenoids — similar tissue at the back of the nose which can also become infected — went with a more than doubled risk of later lung disease, including flu, pneumonia, chronic bronchitis and emphysema. Often in the Sixties, the two operations were done at once.
Scientists behind the study say the findings do not prove tonsil and adenoid surgery is responsible for later health problems but that it needs further investigation.
Their theory is that removing them in childhood somehow
disrupts the developing immune system, triggering illness several decades later.
Research leader Professor Koos Boomsma from Copenhagen University said: ‘This is a huge study. The associations that we report are too strong to dismiss.
‘All we argue is that this should imply renewed discussion about whether to do these operations or not, and look for non-operational solutions wherever possible.’
Yet there is also mounting worrying evidence about the decision not to remove tonsils.
this year researchers from Public Health England found the number of youngsters treated for complications from throat infections more than doubled since the early Nineties.
Over the same period NHS tonsillectomies in England plummeted 80 per cent.
The most common throat infection is caused by the bacterium Group A Streptococcus. If it spreads into the body — called ‘invasive’ streptococcus — it can cause deadly sepsis or toxic shock syndrome. One in five patients who get it die within a week.
Meanwhile, doctors at Aintree Hospital, in Liverpool, found that between 1991 and 2011, when tonsillectomy rates fell sharply, there was a 300 per cent rise in hospital admissions for acute tonsillitis.
Other leading experts also blame rationing of surgery for an increase in the number of adults seeking surgery for severe tonsillitis.
‘Doctors are seeing more and more young adults in their 20s who have suffered for years with acute tonsillitis,’ says Professor Narula.
‘Many put up with the effects throughout school and university but once they are in work they simply cannot afford to keep taking five days off at a time.
‘I’m not saying we should be doing thousands more operations but doctors need to be able to exercise a little more clinical judgment when it comes to referring patients for surgery.’
Professor Narula says some of the strongest evidence in favour of early surgery is in children whose tonsils are so enlarged they cannot breathe properly.
Yet in some parts of the country, he adds, NHS bosses insist those children undergo a sleep study – to see how badly it affects their night-time rest — before they agree to sanction the surgery.
A sleep study involves a whole night in a special clinic, wired up to monitors and supervised by doctors who carry out round-theclock checks.
Professor Narula says: ‘ The ridiculous thing is a sleep study costs more than the tonsil surgery itself.’
Mum- of-two Zoe Willows, 41, from Halifax in West Yorkshire, knows just how dangerous tonsillitis can be.
She suffered repeat bouts of infection every few months throughout her teens and early 20s — but was repeatedly denied the surgery.
‘It was excruciatingly painful,’ says the full-time mum, who is married to food industry executive Guy, 36.
‘I couldn’t swallow, I had big blisters on my tonsils and would always get a fever.’
But it was during a holiday to Mexico in her late 20s that things turned really serious.
Zoe developed tonsillitis once more and went to see a doctor on her final day. ‘He was calling in his colleagues to look because he had never seen anything like it,’ she recalls. ‘I managed to fly home on the same day but that night at home I could not breathe because my throat was so blocked.’
Zoe had developed quinsy, a rare and sometimes fatal complication of tonsillitis, which some medical historians believe was what killed U.S. president George Washington in 1799.
Once the bacterial infection spreads from the tonsils into the wall of the throat, it triggers severe swelling.
Zoe was kept in isolation for four days and booked in for an emergency tonsillectomy. ‘ My tonsils were so scarred surgeons had a tough time removing them. I had been suffering problems with them for more than ten years.’ And now? Zoe says: ‘I’m so much better off without them. I do still get the occasional throat infection but they are few and far between.
‘I think many people would be surprised at just how painful severe tonsillitis can be.
‘By the time I eventually had them out, I was in the worst pain of my life.
‘I have had two babies and would rather go through childbirth again than suffer like that.’