A guide to talking about cervical screening - Guidance notes for media
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A guide to talking about cervical screening Guidance notes for media
National Screening Service Communications Team January 2022 This is a guide to what cervical screening in Ireland is and is not; how it works; and the terminology used. It is intended as a resource for media informing the public about CervicalCheck, the national population cervical screening programme.
Contents
How this guide can help you 2
Key points about cervical screening 4
What is CervicalCheck? 7
Writing responsibly – common themes 8
Cervical cancer – the facts 10
HPV cervical screening test explained 11
Glossary 13
A GUIDE TO TALKING ABOUT CERVICAL SCREENING – Guidance notes for media 1How this guide
can help you
As part of the National Screening Service’s work to promote a better understanding
of the services we provide, it is important that accurate information is available to
assist those writing about our service and related issues. We hope that this guide
serves that purpose.
Who is this guide for?
This guide is for academics, broadcasters, commentators, bloggers, journalists and all those producing
news and commentary on cervical screening in Ireland.
We are mindful that cervical screening in Ireland is a complex subject. It can be emotional for both the
producer and consumer of content. Therefore, it is important to have as much factual information as
possible regarding cervical screening; its background and history; the services it provides; and how it
operates. This will help inform accurate wider public discussion.
Inaccurate or conflicting information increases anxiety and confusion for people. When inaccurate
information is repeated it can become established as fact. This can cause lasting damage to people’s trust
and understanding and make them less likely to take up important opportunities to maintain their health.
This is reflected in the findings of the CERVIVA study ‘Trust and Cancer Screening: Effects of a screening
controversy on women’s perceptions of cervical cancer screening’.* It noted there is a need for ‘initiatives
to improve people’s understanding of screening and its purpose; to support and enable informed decision-
making around participation’.
The authors stated: ‘Each woman’s results letter from CervicalCheck states that “no screening test is 100%
effective”. However, it became clear as the CervicalCheck issues of 2018 developed that the general public
and media in Ireland did not necessarily understand the differences between screening and diagnostic
tests. This general lack of understanding was echoed in our finding that, despite being very aware of the
controversy, participants often demonstrated a misunderstanding of the purpose of screening or used
screening terminology incorrectly.’
* O’Donovan et al, Trust and Cancer Screening: Effects of a screening controversy on women’s perceptions of cervical cancer screening,
Preventive Medicine Reports, Volume 25, 2022, 101684, ISSN 2211-3355, https://doi.org/10.1016/j.pmedr.2021.101684.
2 A GUIDE TO TALKING ABOUT CERVICAL SCREENING – Guidance notes for mediaThe role of media in accurate reporting of screening is critical. Media plays an important role in educating
the public, and the messages people receive from the media have a huge impact on how they manage their
own health. We hope the media, as a trusted source of information, will work with us to support women in
Ireland to make well-informed decisions about cervical screening.
It’s our intention to:
• enhance wider knowledge about cervical screening and cervical cancer
• reduce any misinformation or misconceptions that may exist
• offer an evidence-based source of information
• give content producers a responsive point of contact for future work
How to use this guide
This document is intended to assist fact-checking for those reporting on cervical screening, especially if
working within short timeframes.
It is a reference guide, simplifying and explaining complex clinical terms associated with cervical screening.
Enhancing understanding of cervical screening among the wider population will ultimately lead to better
outcomes for women.*
Where you can find out more
Press and media queries about cervical screening in Ireland should be sent to the
HSE’s press office at press@hse.ie or by phoning 01 921 3912. Visit the HSE Media
centre for all press releases: https://www.hse.ie/eng/services/news/media/
The NSS publishes blogs about cervical screening and stakeholder updates in the
news section of its website: https://www.screeningservice.ie/news/index.php
* When we refer to women we include ‘women and all people with a cervix’.
A GUIDE TO TALKING ABOUT CERVICAL SCREENING – Guidance notes for media 3Key points Cervical screening helps
save lives
about
Since CervicalCheck began in 2008, 1.24 million*
women have been screened (over 3.4 million
cervical screening tests) and there have been 74,517
cervical
cases of high-grade cell changes, 66,432 cases of
low-grade cell changes and 1,727 cancers detected.
This represents half of all cervical cancers detected
in Ireland over this period. Every year we treat
screening
around 6,400 women for high-grade abnormalities.
Many of these would develop cervical cancer if they
were not identified by screening. This has brought
about a measurable reduction in the incidence
of cervical cancer in Ireland (ref National Cancer
Registry of Ireland).
Since CervicalCheck Every year we
began in 2008, treat around
1.24 million* 6,400 women
women have been for high-grade
screened (over abnormalities.
3.4 million cervical
screening tests).
* 1.24 million unique women (all ages >20 to 20 toScreening looks for Screening is for healthy
abnormal cells people
Cervical screening samples are checked for human Population screening programmes work by inviting
papillomavirus (HPV) first. The majority of cervical large groups of healthy people to undergo testing to
cancers are caused by the HPV virus. If HPV is check for early signs of disease or to identify people
found the sample will be checked for abnormal cells. who need more tests.
Read more about HPV screening later. We do this by dividing the eligible population
(women and people with a cervix aged 25-65) into
Abnormal cells are not cancer. But they can lead two cohorts – one at a normal risk and the other at
to cancer. a higher risk. Those at a higher risk are referred for a
diagnostic test.
There are two different types of abnormal
changes to cells in the cervix: Even for those who are healthy and who do not
Low-grade – this means mild cell changes. have symptoms, regular screening builds up a
‘picture’ of the health of the cervix over time, and
High-grade – this means moderate to severe cell
acts as a preventative step. Screening aims to pick
changes.
up abnormal cells at an earlier stage than when
In most cases, people will be told that the cells symptoms typically present and when treatments
of their cervix are healthy. They do not have can be offered that can achieve a better outcome.
abnormal cells.
Screening is not the correct investigation for
people with symptoms. Writers should take care
in using the word ‘screening’ when reporting
Screening is not a on the tests women with symptoms who are
seeking diagnosis require. The reporter should
diagnostic service ascertain if the person had a screening test, or
had a diagnostic test after being referred by their
Screening identifies risk of disease in a healthy GP, or opted for a private test which is not part
population. It is the first step to check if someone of population screening. Reporters should also
needs to go for further assessment and possible understand the evidence-based reasons for the
diagnosis. It will never diagnose a disease on its own. age range for screening.
When a cervical screening test is positive the person
is referred to colposcopy for a clinical assessment,
which may or may not include a biopsy. Colposcopy
is the diagnostic arm of CervicalCheck and this is
We measure ourselves
where diagnosis occurs. against international
Diagnosis is described as the process of identifying standards
a disease, condition, or injury from its signs and
Screening in Ireland is done to the highest
symptoms. A health history, physical examination,
international standards. Our screening service
and tests such as blood tests, imaging tests and
compares well with other quality screening services
biopsies, may be used to help make a diagnosis.
internationally*. Screening aims to detect early signs
Screening is not in itself diagnostic. That is
of disease and reduce the chance of developing a
why it is inaccurate to refer to diagnosis, and
serious condition.
misdiagnosis when talking about cervical
screening.
* Expert Refence Group Interval Cancer Report (CervicalCheck) 2020
A GUIDE TO TALKING ABOUT CERVICAL SCREENING – Guidance notes for media 5Screening works best if Screening is not perfect
you come when invited All screening programmes carry a small element of
risk. The types of potential harms are:
Attending cervical screening when invited by the
programme is one of the best ways to protect A false negative result – in cervical screening this
yourself from cervical cancer. Positive lifestyle means that a participant is given a negative result
changes – stopping smoking, maintaining a healthy but they do actually have changes in the cells of the
diet and taking regular exercise can also help cervix. This might make no difference to the person
prevent the disease. because the changes go away, or they progress but
are picked up at the next screening test, and can
be treated. However, it could be that the person has
Sadly, screening will not
changes that need treating and so they do not get
the chance to have that treatment.
catch every cancer A false positive result – in cervical screening this
Screening is like using a sieve. The idea is to use means that someone is given a positive result but
the test (the sieve) to ‘catch’ as many people as doesn’t have significant changes in the cells of their
possible who have the condition, and as few people cervix. However, the positive result means they
as possible who do not have it. All the people will be referred for a diagnostic colposcopy. There
‘caught’ in the sieve then have more complex tests is a chance that they will have treatment to the
(diagnostic test) to find out if they actually have the cervix that won’t benefit them but could give them
condition (true positives), or not (false positives). problems with carrying a pregnancy later, causing
miscarriage or premature delivery. This is a particular
There will always be some people who have the concern for younger women.
condition who will fall through the ‘sieve’ (false
negatives). There are ways to make the ‘holes’ in Anxiety – having a positive screening test can cause
the sieve smaller to catch more people who have anxiety. That is why all the parts of the journey from
the condition but doing so means that more people invitation to treatment are included in a screening
who do not have the condition get caught too programme, so that women get their diagnostic test
(false positives). Those people won’t benefit from in a timely manner.
screening but have to have diagnostic tests which False reassurance – some people might delay
may cause them some harm. This means that no seeking medical advice if they get symptoms after
screening test will catch everything. The test is not they have had a negative screening result. If people
diagnostic – which means that it is not specific get symptoms that might be caused by cervical
enough or sensitive enough to provide 100% cancer then they should discuss them with their
accuracy. doctor or nurse as soon as possible so diagnostic
There are many reasons why some cancers are not tests can be arranged if appropriate.
picked up via cervical screening: these include the
accuracy of the test; the type of cervical cancer;
the location of the cancer; and the speed at which
it grows. Other cervical cancers are diagnosed in
Why cervical screening is
women who do not come for screening. not a diagnostic test
There are some cancers of the cervix that screening
will never find. This is because they do not always
show up on cytology or may not be related to HPV,
or they may be further up the cervix (neck of the
womb) than the screen test brush is able to reach.
6 A GUIDE TO TALKING ABOUT CERVICAL SCREENING – Guidance notes for mediaWhat is
CervicalCheck?
• Available to women and people with a Colposcopy
cervix aged 25-65
If abnormal cell changes or persistent HPV are
• Offers a free cervical screening detected during screening some women are referred
to colposcopy for a diagnostic examination. If
procedure (HPV cervical screening
necessary, treatment of precancerous changes and
test) every three to five years early cancers can be done in the colposcopy clinic.
• Screening performed by a GP, practice
It is a simple procedure used to look at the cervix
nurse, or clinic healthcare staff
(the opening to your womb) from your vagina.
• Provides information on the
programme Treatments are often done under local anaesthetic
and include LLETZ procedure, cold coagulation and
• Delivers the samples to the laboratory a cone biopsy.
• Processes the samples
If it’s not clear if you have abnormal cells, a biopsy is
often taken to look at the cells in more detail under a
• Makes recommendations and gives
microscope. You may receive treatment at this time
them to the participants and their or may need to wait for your biopsy result to receive
sampletakers treatment.
• For those who need it, there are
A colposcopy is free if you are referred through the
colposcopy services and cytology and CervicalCheck screening programme.
histology laboratory services available
and commissioned by CervicalCheck Supporting these services are an IT system,
standards for the programme, a quality assurance
programme, training, and public health promotion
work to make sure everyone has a fair chance to
participate.
A GUIDE TO TALKING ABOUT CERVICAL SCREENING – Guidance notes for media 7Writing Screening vs symptomatic
People can sometimes mix up screening services
responsibly
with symptomatic services when detailing their
journey to diagnosis.
Putting it simply - screening is for well people who
– common
do not have symptoms. It is not for people who
are symptomatic. Cancer is not diagnosed during
screening.
themes
Anyone who experiences symptoms at any point
should not wait for screening but go to their GP
who will advise of the appropriate follow-up care.
This will happen in a different part of the healthcare
system to CervicalCheck. Symptoms can appear at
any point, no matter the outcome of your previous
cervical screen and should always be discussed
with a GP.
Smear; cervical smear;
smear test
Misdiagnosis and CervicalCheck moved to HPV testing in March 2020.
diagnosis If discussing a sample taken since that point, it is
correct to say HPV cervical screening or HPV
Screening is not a diagnostic test, therefore people
screening. The HPV test is a machine-based test
cannot be diagnosed or misdiagnosed during
that looks for the presence of human papillomavirus
screening.
(HPV). If HPV is found, the test sample is then
If stating that a cancer was found after a HPV checked for abnormal cells (‘pap smear’ or cytology
screening test, the most accurate way to express test). Read more about HPV cervical screening later.
this is that the cancer was ‘detected via screening’.
Screening is an assessment of your risk of a
condition developing. If you are assessed to be at
high risk, you are put forward for further tests which CervicalCheck audit 2018
may lead to diagnosis. These further tests occur in
colposcopy clinics. The HSE is working hard to continue to reduce
the impact of cervical cancer in Ireland. Doing this
involves building public confidence in CervicalCheck
and the HPV vaccination programme.
The National Screening Service (NSS) and
CervicalCheck are acutely aware that the issues
of CervicalCheck clinical audit non-disclosure
in 2018 - where women who had already been
diagnosed with cancer were either not informed
or were badly informed about their clinical audit
result - led to a loss of trust in our services.
8 A GUIDE TO TALKING ABOUT CERVICAL SCREENING – Guidance notes for mediaWe are aiming to rebuild that trust by working
with patients to inform our planning and delivery
Response to audit
of services, strengthening our governance, • The government appointed UK public health
improving our information resources and expert Dr Gabriel Scally to undertake a review
enhancing our quality assurance processes. of the CervicalCheck programme. Dr Scally’s
Scoping Inquiry into the CervicalCheck Screening
Programme 2018 (known as the Scally report)
Background to CervicalCheck interval made a number of key recommendations
cancer audit concerning governance, quality assurance and
transparency in communication. It confirmed
CervicalCheck conducted an interval cancer clinical
the screening programme was effective, and
audit of women who had been in the programme
did not find quality issues with the laboratories.
and had been diagnosed with cervical cancer. In
It confirmed that the programme did not
221 out of 1,482 cases audited, the review found
follow through competently on its intention to
abnormalities that had not been detected at the
communicate the audit outcomes to the individual
time of screening and concluded that this led to a
women.
clinically significant delay in diagnosis.
• In 2018 a CervicalCheck Steering Committee was
As would be expected in a cervical cancer screening
established to provide oversight and assurance
programme, 76% of the women diagnosed with
on the implementation of key decisions taken by
cancer were diagnosed at stage 1. The majority of
Government in relation to CervicalCheck.
those found to have clinically significant results on
audit had also been diagnosed at pre-cancer or • In 2019 the government commissioned an
stage 1. Independent Expert Panel Review (Cervical
screening in cases of cervical cancer in Ireland
The diagnosis of cancer was not withheld from the
between 2008 - 2018) by the British Royal College
women. Once the cancer was diagnosed, all of
of Obstetricians and Gynaecologists. It reported in
the women were informed immediately. All of the
December 2020 that:
women whose smear test results were being audited
had already been diagnosed and were already - The programme was highly effective
undergoing, or had undergone, treatment. - Irish women should have confidence in the
CervicalCheck programme
The issues regarding non-disclosure relate to the
non-disclosure of audit results. Even though these - The rate of missed abnormalities was similar to
results had no impact on patient care or prognosis, that in the English cervical screening programme
the HSE has acknowledged that these disclosures
• In October 2020 one of the final recommendations
should have been managed better and been more
of the 2018 Scally report was completed with the
transparent.
publication of the Expert Reference Group Interval
The results of the CervicalCheck audit were either Cancer Report (CervicalCheck) 2020. The report
not communicated, or were communicated badly, to set out a new and comprehensive approach to
patients. While no lives were put at risk by doctors reviews of interval cancers in people who have
not informing patients of the results of the audit, been screened by Ireland’s cervical screening
it caused a great deal of distress and anguish programme. The report recommendations are
for the women and families affected. The non- currently being implemented.
communication of audit results did not impact the
• In 2021 the NSS completed the implementation of
treatment or care of the people concerned.
its recommendations under the Scally report.
A GUIDE TO TALKING ABOUT CERVICAL SCREENING – Guidance notes for media 9Cervical Who can get cervical
cancer?
cancer –
Women or any person with a cervix who has had any
kind of sexual contact can get cervical cancer and
it mostly affects people aged 30 to 50. Every year
the facts
about 300 women in Ireland get cervical cancer and
approximately 90 people die from it. In comparison,
811 women get bowel cancer each year and 204
women die from it*. In those aged 25 to 39 years,
cervical cancer is the second most common cause
of death from cancer, and it is very rare in those
aged under 25. Cervical cancer does not run in
families and is not hereditary.
What are the symptoms of
cervical cancer?
Cervical cancer often has no symptoms in its early
stages. The most common symptom as it develops
is abnormal bleeding. Abnormal bleeding can
What is cervical cancer? include: irregular vaginal bleeding; bleeding between
periods; vaginal spotting or unusual discharge;
Cervical cancer is a cancer of the cervix (the neck post-menopausal bleeding; and bleeding after sex.
of the womb). It happens when cells in the cervix However, these symptoms are usually caused by
become abnormal and change slowly over time. other conditions and do not necessarily mean a
Abnormal cells are sometimes called pre-cancerous person has cervical cancer.
cells. They are most commonly caused by the
Less common symptoms can include pain in the
human papillomavirus (HPV). In most cases, it takes
pelvis (anywhere between the bellybutton and the
10 to 15 years for these cells to go from normal to
tops of the thighs), or pain during sex. Even if a
abnormal to cancer.
person has had a recent normal screening result
they should never ignore symptoms.
How does a person reduce
their risk of cervical
cancer?
A person can reduce their risk of cervical cancer by
having regular cervical screening tests to pick up any
early cell changes. Along with quitting smoking and
getting the HPV vaccine in early adolescence, regularly
talking to a GP about any concerns or symptoms is
the best way of reducing risk of cervical cancer.
* Cancer In Ireland 1994-2019, Annual Report of the National Cancer Registry 2021
10 A GUIDE TO TALKING ABOUT CERVICAL SCREENING – Guidance notes for mediaHPV How is HPV transmitted?
HPV is a common viral infection spread by skin
cervical
to skin contact during sexual activity. Any person
who has ever engaged in sexual activity is likely to
have been exposed to HPV. A person can develop
HPV-related cell changes years after they have had
screening
skin-to-skin genital contact or sexual activity with
someone who has the virus.
In the overwhelming majority of cases the virus goes
test
away on its own and does not cause any harm.
The body’s immune system can clear it within 18
months.
explained HPV and cancer
Cervical screening aims to reduce the rate of the
most common type of cervical cancer, squamous
cell cancer (approximately 70-80% internationally).
Approx. 99% of squamous cell cancers are caused
by HPV.
About 85% of the other types of cervical cancer are
also caused by HPV but some are not. Non-HPV
related cancers were difficult to identify under
Why a move to HPV cytology screening (known as a smear test). HPV
screening is more accurate, but some types of
testing? cervical cancer can go undetected by a screening
programme. This is a known limitation of screening.
CervicalCheck moved to HPV cervical screening
on 30 March 2020. The HPV test is a machine-
based test that looks for the presence of the human
papillomavirus (HPV). The majority of cervical Why HPV screening is a
cancers are caused by the HPV virus. If HPV is
found, the test sample is checked for abnormal cells better test
(‘pap smear’ test).
HPV is a better test than cytology for identifying
The previous testing process, the smear test, looked people at risk of having high grade changes in
for abnormal cells first. If abnormal cells were the cells of the cervix. Research shows that if 20
found, the person may also have been tested for samples with cell changes on them are tested with
HPV. Finding HPV first is a better way to screen for HPV and cytology, cytology will accurately identify
changes to cervical cells. If a HPV infection is found 15, and HPV will identify 18.
early, it can be monitored with treatment offered if
• A negative HPV test is a very strong predictor that
there are any changes to the cells of the cervix.
there are no changes in the cells on the cervix.
With a negative HPV test it is 99% likely that there
are no changes in the cells.
A GUIDE TO TALKING ABOUT CERVICAL SCREENING – Guidance notes for media 11• Cervical cancer rarely occurs without HPV being in
the cells.
Is cervical cancer
• Even if someone picked up HPV the day after a
screening appropriate for
negative test result, it would take 10-15 years to LGBT+ people?
develop cancer.
Lesbian and bisexual (LB) women and gender
• This means the interval between screens can be minorities with a cervix (GMC) have significantly
increased to five years for those aged between 30 lower rates of uptake of HPV and cervical screening.
and 65 years.
Almost all cases of cervical cancer are caused
HPV testing also identifies many people who have by HPV. A person can get HPV from any kind of
HPV but don’t have significant changes. Therefore, physical or sexual contact of the genital area,
cytology is used as a second stage screening for not just penetrative sex. For these reasons, it is
people who have HPV found. important that members of the LGBT+ community
who have a cervix take up their screening invite.
People who have HPV found but have no high-grade
cell changes found, are recalled in 12 months. For
a lot of these people, their immune system will have
cleared the HPV, and they will go back to the normal
interval between screens.
Those who still have HPV found will be referred to
colposcopy to have the diagnostic check.
12 A GUIDE TO TALKING ABOUT CERVICAL SCREENING – Guidance notes for mediaGlossary
Term Definition
ASCUS Atypical squamous cells of undetermined significance
CervicalCheck The national cervical screening programme for Ireland
CIN Cervical Intraepithelial Neoplasia
Clinical Audit A clinically-led quality improvement process that seeks to improve patient care and
outcomes through systematic review of care against explicit criteria, and acting
to improve care when standards are not met. The process involves the selection
of aspects of the structure, processes and outcomes of care which are then
systematically evaluated against explicit criteria. If required, improvements should
be implemented at an individual, team or organisation level and then the care re-
evaluated to confirm improvements.
Colposcopy A colposcopy is a simple procedure used to look at the cervix, the opening to your
womb from your vagina. It may be done if a cervical screening test finds that you
have abnormal cells in your cervix.
Cone biopsy A cone biopsy is a small operation to remove a cone shaped piece of tissue from the
cervix.
Cytology Cytology is the examination of cells, usually in fluid
Diagnosis The process of identifying a disease, condition, or injury from its signs and
symptoms. A health history, physical examination, and tests such as blood tests,
imaging tests and biopsies, may be used to help make a diagnosis. Screening is not
diagnosis. People cannot be misdiagnosed at screening.
Histology Histology is the study of the microscopic anatomy of biological tissues.
HSIL High-grade squamous intraepithelial lesion
HPV Human papillomavirus, which can cause cervical and other cancers
Interval cancer A primary cervical cancer diagnosed in a woman after a negative screening test, but
before the next invitation to screening is due; or within a period equal to a screening
interval for a woman who has reached the upper age limit to attend screening.
A GUIDE TO TALKING ABOUT CERVICAL SCREENING – Guidance notes for media 13KPI A key performance indicator (KPI) within CervicalCheck is a predefined parameter by
which the performance of a cervical screening programme is assessed.
LSIL Low-grade squamous intraepithelial lesion
LLETZ LLETZ stands for large loop excision of the transformation zone. It is a treatment to
remove cell changes (abnormal cells) in the cervix.
NSS National Screening Service, which delivers four population screening programmes:
breast screening (BreastCheck); cervical screening (CervicalCheck); bowel
screening (BowelScreen) and eye screening for people who have diabetes (Diabetic
RetinaScreen).
RCOG Royal College of Obstetricians and Gynaecologists (UK)
Screening Screening is the systematic application of a test to identify individuals at sufficient
risk of a specific disorder to warrant further investigation or direct preventive action,
amongst persons who have not sought medical attention on account of symptoms of
that disorder.
Sensitivity Sensitivity is how good the test is at correctly picking up someone with the condition.
The better the sensitivity is, the lower the rate of people who get a negative result but
later develop the condition (false negative).
Smear test Examination by professionally trained laboratory staff (cytologists) of a sample
of cells taken from the woman’s cervix by a health professional. This is currently
referred to as a cervical cytology test.
Specificity Specificity is how good the test is at correctly identifying the people who do not have
the condition.
The better the specificity is, the lower the rate of people who are sent for diagnostic
tests when they don’t have the condition (false positive).
False negative A test result that indicates that a person does not have a specific disease or
condition when the person actually does have the disease or condition.
False positive A test result that indicates that a person has a specific disease or condition when the
person actually does not have the disease or condition.
Women and people with a cervix
The above phrase is used because cervical cancer can affect women and other people who have a
cervix such as trans men. The National Screening Service aims to use language that is accessible and
inclusive of everyone in the population. We know that certain groups – such as those in poor social
circumstances, those with disabilities, members of the Traveller community, members of the LGBT
community - can feel excluded from using health services for many reasons. In screening we know that
lower participation in the programmes reduces the quality of the programme, so it is very important to
offer services that meet the needs of the people who are eligible.
14 A guide to talking about cervical screening – Guidance notes for mediaNSS/PUB/COM-9 Rev 1
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