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The long read: Number of cervical cancer screenings is falling - it’s time to break the stigma

PUBLISHED: 06:00 24 September 2018 | UPDATED: 13:21 24 September 2018

Smeat test sample. Picture: JO'S CERVICAL CANCER TRUST

Smeat test sample. Picture: JO'S CERVICAL CANCER TRUST

Archant

Fear, embarrassment, and stigma are just some of the reasons thousands of women in the country are putting off having routine cervical screening. Reporter DONNA-LOUISE BISHOP explores what can be done to break the shame.

Kayleigh Hanlon is trying to raise awareness of cervical cancer. Byline: Sonya DuncanKayleigh Hanlon is trying to raise awareness of cervical cancer. Byline: Sonya Duncan

Major fears have today been voiced after thousands of women could be silently suffering with cervical cancer by avoiding a vital routine test and leaving the disease undetected.

Cervical screenings, also known as smear tests, currently prevent up to 75pc of cervical cancers yet thousands of women who are at risk of the disease are unaware of its importance.

The most common form of cancer in women under 35, more than 200,000 British women are diagnosed with cervical abnormalities every year.

Mother-of-two from Norwich, Kayleigh Halon, is just one of these women whose life changed after she plucked up the courage to go for her first test. She received abnormal results and the mild changes have since developed into high-risk, precancerous cells.

Sharing her own story to break the stigma and raise awareness, she wants to encourage more women to go for their screening.

Miss Hanlon, 25, of Woodcock Road, Norwich, was first invited to attend her cervical screening in August 2017.

Kayleigh Hanlon organised a charity ball to help raise awareness of cervical cancer. She is pictured with some of the raffle prizes. Byline: Sonya DuncanKayleigh Hanlon organised a charity ball to help raise awareness of cervical cancer. She is pictured with some of the raffle prizes. Byline: Sonya Duncan

“At first I put it off for a week as I was a little nervous but finally I took the plunge and booked my appointment,” she said.

“On the day of my appointment I walked into my doctors and I was very nervous and nearly walked out.

“I was on my own - I would highly suggest taking a close friend or relative - but the nurse was so nice and went through everything with me.

“I felt much better.

“The whole thing took less than five minutes and it was painless too. For me it didn’t hurt at all. Some women may find it to be a slight discomfort though because everyone’s bodies are different.”

Two weeks later, Miss Hanlon, who is originally from Fakenham, received the news she had be fearing.

“I received that phone call to tell me I had cervical abnormalities and would need to be transferred to hospital for a colposcopy.

“I broke down in tears over the phone. I automatically thought it would be cancer. I did so much research and my first port of call was the charity, Jo’s Cervical Cancer Trust. I started talking to other women who were going through the same thing and it was reassuring.”

A week later Miss Hanlon had a colposcopy - a procedure to look at the cervix in detail - and due to visible cell changes, a biopsy was taken to rule out cancer. Unfortunately, the biopsy revealed precancerous cells and a year later they have developed into a higher grade.

Recently she has had a treatment called a large loop excision of the transformation zone (LLETZ) which involves removing the abnormal cells using a wire loop, heated with an electric current.

She added: “Sometimes it will hit me. I’m now scared I won’t be able to have anymore children. But at least I am here to tell my story.

“I really would urge other women not to put it off. Cervical cancer is a silent killer.

A speculum. Picture: JO'S CERVICAL CANCER TRUSTA speculum. Picture: JO'S CERVICAL CANCER TRUST

“If I never went for my screening then I don’t know where I would be now.”

Miss Hanlon, who is currently recovering from her treatment and is awaiting the results of her latest biopsy, is just one of thousands who are currently going through treatment.

But undeterred from her mission to help other women, she has been organising a number of fundraisers to raise awareness and has also created a Facebook page - Cervical Screening (smear test help & questions) - for other women, and their loved ones, to find support and help.

But why are numbers in uptake declining?

Screenings are available to all women in the UK over the age of 25 on the NHS and, although not a test for cancer, it tests how healthy the cells in the cervix are.

Between March 2016-17, a total of 4.45 million women in the UK, aged 25 to 64, were invited for screenings - an increase of 5.6pc from the previous year (4.21 million). But despite this increase, only 3.18m were tested.

Back in 2009, attendance was believed to be at an all time high with numbers walking through GP surgeries peaking due to what was dubbed the “Jade Goody Effect”.

· What is the “Jade Goody Effect”?

Back in 2002, reality TV star Jade Goody entered the spotlight in the third series of the then-Channel 4 programme Big Brother.

By August 2008, she returned to the headlines after announcing her cervical cancer diagnosis, before revealing in February 2009 that the cancer had spread. By this point she had become terminally ill.

She married fellow Celebrity Big Brother contestant Jack Tweed on February 22, 2009, and died one month later on Mother’s Day (March 22), at the age of 27.

Her story touched many young women across the country and temporarily saw a rise in numbers attending cervical screenings.

But latest figures from the NHS Digital’s cervical screening programme revealed that more than 1.2 million women across the UK did not take up their invitation for cervical screening - despite the test being estimated to save 4,000 lives each year.

Experts claim that the effect of this has long since passed and the latest figures echo their concerns with the statistics from the NHS Digital’s cervical screening programme revealing a worrying trend.

Since 2013, cervical screening uptake has been proportioned by its local Clinical Commissioning Group and in East Anglia, there has been a gradual decline of uptakes.

During the past five years, Norfolk’s uptake has reduced by almost 4pc. In 2013-14, uptake in the county was 78.3pc but the most up-to-date figures (2016-17) show that amount has fallen to 74.4pc.

Jade Goody. Picture: PA Photo/Channel 4.Jade Goody. Picture: PA Photo/Channel 4.

In Suffolk the uptake was 78.7pc in 2013-14, falling by more than 4pc to 74.1pc in 2016-2017.

And similar in Cambridgeshire, where uptake was 76.7pc in 2013-14, falling by more than 5pc to 71.6pc.

But despite these figures broadly mirror the average in the East of England (73.3pc) and England (72pc), there are still thousands of women who could be at risk.

The chief executive of charity Jo’s Cervical Cancer Trust, Robert Music, said more can be done in to improve uptake.

“It’s concerning that cervical screening attendance is declining year on year, and we know that there are a range of reasons why women don’t attend, including physical, psychological, emotional and literary barriers,” he said.

“Cervical screening provides the best protection against cervical cancer, by preventing 75pc of all cervical cancers from developing. Therefore, more practical action is needed to reverse this downward trend and support women who find attending difficult.”

Jade Goody died in her sleep in 2009 (Picture: Stefan Rousseau/PA Wire)Jade Goody died in her sleep in 2009 (Picture: Stefan Rousseau/PA Wire)

· A third of women ‘too embarrassed’

Every year in the UK, around 3,000 women will be diagnosed with cervical cancer.

And despite being the most common cancer in women aged 35 and under, thousands are still avoiding routine cervical screenings.

Although cervical cancer is not believed to be hereditary, in 99.7pc of cases, it is caused by persistent infections from a common virus called high-risk human papillomavirus (HPV).

Robert Music, CEO of the charity Jo's Cervical Cancer Trust. Picture: JO'S CERVICAL CANCER TRUSTRobert Music, CEO of the charity Jo's Cervical Cancer Trust. Picture: JO'S CERVICAL CANCER TRUST

HPV is transmitted through skin to skin contact in the genital area and around four out of five sexually active adults (80pc) will be infected with some type of HPV in their lives. But for the majority, this will not result in cervical cancer.

But why are thousands of women putting their lives at risk by avoiding getting tested?

Earlier this year, charity Jo’s Cervical Cancer Trust published the results of a survey of 2,017 British women aged 25 to 35 and found that more than a third cited embarrassment as the main reason for not attending.

Reasons included concerns over “smelling normally”, which topped the survey at 38pc, followed by body shape (35pc), and the appearance of their pubic area (34pc). Others also admitted they would not go if they had not waxed or shaved their bikini line (31pc).

So what exactly happens during a smear test?

All women who are registered with a GP and are aged 25 to 64 are invited for cervical screening. Usually a letter will prompt booking an appointment to be carried out with a practice nurse.

Dr Nick Lyons, medical director at the Queen Elizabeth Hospital, King's Lynn. Picture: QUEEN ELIZABETH HOSPITALDr Nick Lyons, medical director at the Queen Elizabeth Hospital, King's Lynn. Picture: QUEEN ELIZABETH HOSPITAL

Cervical screening is not a test for cancer but to check the health of the cells of the cervix.

The test takes around five minutes and women will be asked to undress from the waist down and lie on a couch. The nurse will use instrument called a speculum to look inside and then collect some cells from the surface of the cervix with a small brush.

The cell sample is then sent off to a laboratory for analysis and results are usually returned within two weeks, with further instructions if necessary.

According to the NHS, since the screening programme was introduced in the 1980s, the number of cervical cancer cases has decreased by about 7pc each year.

· It could save your life

With thousands of women risking their lives by avoiding routine screenings, what do the people who treat women and carry out cervical screenings think can be done to prevent deaths from cervical cancer?

“It could save your life” - is the abundantly clear message being voiced by medical professionals working in healthcare today.

Medical director at the Queen Elizabeth Hospital, in King’s Lynn, Nick Lyons said working as a GP he gets to see “both ends of the journey”.

“I can understand why women put it off,” he said. “Life is busy and the procedure itself can be daunting.

“But working in the hospital and as a GP, I see both sides and I just think if we could talk frankly and spend some time talking with women about it, then we could save a life and a great deal of suffering.”

Dr Lyons explained that the majority of patients he saw at the hospital were in the “relatively early stages” of cervical cancer, which can be easily treated.

He added: “We do see small numbers of late-stage cancer that could have been prevented by going to a routine cervical screening

“Cervical cancer is absolutely tragic and the impact on women and their families is very distressing.

“If it were my wife or my daughter, I would get them to go for their screening. And although that thought is not enjoyable, it could save your life.”

Consultant at the Norfolk and Norwich University Hospital, gynecologist Tim Duncan, echoed Dr Lyons appeal.

He explained that the test is not a test for cancer but was a preventative programme and women should not fear going for the test - even if precancerous cells are detected.

Dr Duncan said: “The idea is to pick up any patients that need treating at the cervical screening stage. It’s to detect changes in the cells, not to test for cancer.

“At this stage it is easily treatable and the majority of women having problems following a screening is low. Around 4pc of those will need to have a colposcopy - which may be uncomfortable but is not painful - and some may need further treatment.

“There are very little cases of complications after treatment.”

“The programme is very effective if women engage with it.

“We do know that women engaging in screenings have a low chance of developing cervical cancer. With the cervical screening programme, it is designed to pick up precancerous cells.”

Dr Duncan explain that if someone gets to the stage where they have symptoms of cancer - such as abnormal bleeding, unusual discharge, having to go to urinate more frequently, pelvic pain or painful urination - then it would already be developed by then.

He added: “If all women, who were invited to attend their cervical screening, engaged in the test, then this would reduce cervical cancer by 83pc.”

· What do all of things actually mean?

Cervical screening: This routine test is not a test to find cancer. It is to detect changes to the cells of the cervix, which are called cervical abnormalities or precancer. A sample of cells will be taken from your cervix and then examined under a microscope to detect changes.

Cervical abnormalities: This does not mean that you have cancer. It means that you have changes in some of the cells in your cervix that, if not treated, might develop into cervical cancer.

Low grade changes: These are often called low grade dyskaryosis, mild or borderline changes, or CIN1 and usually require no treatment.

High grade changes: These are often called moderate or severe dyskaryosis, or CIN2 or 3 and will usually require treatment.

Colposcopy: This is a more detailed look at the cervix with a special microscope.

HPV: Human papillomavirus (HPV) is a very common virus. There are more than 200 types. About 13 HPV types are linked to cervical cancer and are called high-risk HPV.

HPV vaccines: Currently, there are there different HPV vaccines licensed in the UK that protect against HPV. Gardasil is available to girls on the NHS if they are under 18.

· Can I get vaccinated against HPV?

Currently, there are there different HPV vaccines licensed in the UK that protect against HPV. Gardasil is available to girls on the NHS if they are under 18.

Dr Duncan explained that the introduction of the vaccine may also be a reason behind the decline of cervical screening uptake but urged women who had the vaccine to still go.

He said: “The introduction of the vaccine may be why we are seeing the numbers of people attending screenings dropping off.

“It is important to highlight that you still need to go even if you’ve had the vaccine.

“If someone has been vaccinated, that is great, and will reduce the risk but they must still go for their screening.”

· Where can I go for more information or help?

If you want to know more about cervical screenings or are looking for information following an abnormal result then the below organisations could be your first port of call:

· The Health A-Z section on the NHS website provides information about cervical screenings right through to cervical cancer. You can access the information via the website at www.nhs.uk.

· Jo’s Cervical Cancer Trust is the only UK charity dedicated to women, their families and friends affected by cervical cancer and cervical abnormalities. As well as a wealth of information on its website at www.jostrust.org.uk, there is also an online forum to speak with other women and their loved ones about any concerns or issues. Alternatively you can ring the helpline number on 0808 802 8000.

· Norfolk’s cancer charity The Big C is also able to advise and they can be contacted via the website at www.big-c.co.uk or by ringing the support line on 0800 092 7640.

· To book your cervical screenings ring your registered GP surgery.

· Have you got an important story to share regarding your experiences of cervical screenings or cervical cancer? Contact reporter Donna-Louise Bishop by ringing 01362 854705 or email donna-louise.bishop@archant.co.uk.

· Alternatively, if this article has inspired you to book and attend your screening, then why not let us know via our anonymous webpage at www.edp24.co.uk/cervicalscreening .

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