Sophie Jones
Sophie Jones died of cervical cancer at the age of 19. One of the youngest victims of the disease in the UK

Last week it was announced that 19-year-old Sophie Jones died from cervical cancer after being "refused a smear test".

Her family launched a petition, Sophie's Choice, to have the age at which women are invited to have a smear test lowered from 25 to 16. At the time of writing, the petition has over 281,000 signatures.

The petition - and the huge response to it - highlights a significant issue over cervical screening: that there is a massive misunderstanding of what the test does and why the age barrier is in place.

Sophie had been suffering stomach pains for several months when she went to the doctor who wrongly diagnosed her symptoms as Crohn's disease. After her symptoms continued, she was eventually admitted to hospital where she was diagnosed with cervical cancer. She died on 15 March in hospital, four months after diagnosis.

Her family said she was repeatedly refused a smear test by her doctor, who said she was far too young to have the disease. Prime Minister David Cameron has said that the case was "absolutely tragic" and that "something seems to have gone wrong".

But having access to a smear test was not what went wrong, nor was the doctor's insistence that cervical cancer at such a young age was extremely rare.

While about half of cervical cancer deaths are among women aged between 25 and 64, three quarters of these are in women over the age of 50.

Professor Sean Kehoe, spokesman for the Royal College of Obstetricians and Gynaecologists, told IBTimes UK that cervical cancer below the age of 20 is almost unheard of.

jade goody
Jade Goody's death vastly increased awareness of cervical cancer in 2009. Reuters

Sophie did not need a smear test when she went to the doctors with abdominal pains, she needed a diagnostic test. A smear test is not a test for cancer, which is a major misunderstanding when it comes to cervical screening.

"People get confused about cervical screening, because unlike breast cancer screening, it is not a test to detect cancer," Kehoe said. "Smear tests are to detect pre-cancerous cells that do not cause any symptoms. These abnormal cells are not cancerous, but could turn into cancer if they are not treated.

"Cervical screening is used to prevent cervical cancer and is not a test to detect it. A diagnostic test involves testing for cancer by taking a tissue sample, for example, and analysing it for cancer. This would be done if symptoms were present and the cervix looked abnormal."

Speaking about the petition to lower the age of cervical screening, Kehoe said: "Cases of cervical cancer below 20 is a very rare event with only a few women developing the disease in this age group each year. The case of Sophie Jones is tragic and I have huge sympathy for her family, but such rare situations do happen and will always happen – it doesn't mean the age of cervical screening should be lowered."

Explaining why women are invited from 25, Kehoe said that below this age, the chance of detecting abnormalities that turn out to be nothing is far higher.

"It also raises the risk of causing damage, through treating abnormalities many of which will resolve, and the effect of treatment can lead to future problems in areas such as premature labour. On balance– performing smear tests on women below 25 does more harm than good."

jade goody
Goody's death caused an increase in the number of women attending cervical screening. Reuters

England raised the age at which women are invited for cervical screening to 25 in 2003, following research that showed it does not lower the number of cervical cancer cases detected, as well as the increased chance of abnormal results where nothing is wrong.

Many campaigners are now calling for the age to be lowered to fall in line with Wales and Scotland. However, after completing similar research, Wales has now also increased the age to 25, and Scotland has plans to do so as well. "The other problem is that the uptake of cervical screening among women aged between 20 and 25 was very low," Kehoe said.

"The petition launched by Sophie's family is understandable, but presently the evidence is that lowering the screening age will not affect cervical cancer in this age group."

While access to smear tests for the under 25s is not on the cards, what is more frustrating in cases such as Sophie's is the number of women between 25 and 64 who do not attend cervical screening.

Earlier this year, Jo's Cervical Cancer Trust found that a third of 60-64-year-olds and half of 25-29-year-olds kept putting off their invitation, while a fifth forgot all about it.

Robert Music, chief executive of the charity, said: "Annually one in five women in the UK will fail to attend cervical screening. Our data revealed that on average young women delay screening for 15 months and 60-64 year olds delay for an average of 33 months ... With regular screening paramount for detecting abnormal cells that could turn into cancer, even delaying for a few months could be putting lives at risk."