The NHS has made a pledge to eliminate cervical cancer by 2040 by making it easier for people to get the life-saving HPV vaccine and encouraging more people to take up their cervical screening invite.
However, shouldn’t part of the plan be improving standards of practice in reporting on screening specimens, given that health headlines are dominated by stories of women who have had been diagnosed with cervical cancer after misreported screening results?
For Cervical Cancer Prevention Week, we look at both the importance of cervical screening and the devastating human impact of when things go wrong.
Cervical cancer statistics
In the UK, around 3,250 people are diagnosed with cervical cancer each year. It’s most common in women aged between 30 and 34.
Thanks to advancements in both the cervical screening and HPV vaccination programmes, there has been an overall reduction in the disease in recent decades; rates have fallen by a quarter since the 1990s. Mortality rates for cervical cancer are also decreasing, down by three quarters since the 1970s.
The message has always been that the earlier any type of cancer is caught the better a person’s chances of treatment and survival will be. Prevention relies heavily on adequate screening which can help detect some cancers at an early stage. When caught in the pre-cancerous stages, cervical cancer is very treatable.
Symptoms of cervical cancer:
- Bleeding unusual for you
- Abnormal discharge – consistency, texture, smell, look
- Pain/discomfort during sex
- Unexplained lower back pain
What is cervical screening?
Cervical screening is an internal test that detects human papillomavirus (HPV) and any abnormal cells in the cervix that could later develop into cancer if left untreated.
A nurse or doctor uses a soft, small brush to take a sample of cells from the cervix (a donut-shaped part that connects the womb to the vagina). These cells are then sent to a laboratory to test for HPV.
There are around 200 types of low and high-risk HPV viruses and 80 percent of people will get one in their lifetime. Cell abnormalities are almost always (99.7 percent) caused by high-risk HPV. They infect skin and moist membrane such as mucus in the cervix. Most people’s immune systems will get rid of HPV naturally. But persistent infection is what causes cells in the cervix to change.
While 13 types of HPV are linked to cancer, HPV detection doesn’t automatically mean you will get cancer. It takes between one and ten years for HPV to cause cell changes, and longer still for abnormal cells to become cancerous. Symptoms of cervical cancer rarely occur for many years, unfortunately sometimes when it has metastasized (spread to other parts of the body).
Cervical screening can help prevent cervical cancer developing in the first place and is known to save 5,00 lives a year. If HPV is detected, you should be invited back sooner for another screening (after one year) to check if the HPV is gone. In some patients there may be a plan to repeat smears at six-monthly rather than 12-monthly intervals until concerns are resolved.
If cell changes are detected, you should be invited for a colposcopy where you may have a diagnostic biopsy or removal of the cells. Last year, of the 3.25m screened, around 250,000 women were referred for a colposcopy. Around half (47%) had some treatment or procedure such as LLETZ or a cone biopsy.
Why aren’t women going for their cervical screening?
Last year (2023-24), almost a third of women didn’t attend their cervical screening invitation. An NHS report shows that of the 5.12 million people who were invited for cervical screening, only 3.25m (68.8%) were tested within the recommended period of time.
There will always be two camps when it comes to screening invitations landing on the door mat: those who read it and forget about it (or choose to ignore it), and those who book an appointment straight away.
Those in the former camp may put it off out of the fear of the unknown, feeling embarrassed to go for screening, having had a bad experience in the past, or wrongly thinking that it’s a test for cancer. Whilst attending screening is a patient’s choice, some patients may not be able to make an informed choice for many reasons – from lack of understanding, through to age, or inappropriate equipment.
Worryingly, a BMJ report highlighted that half of all cervical cancer cases in the UK are diagnosed in women whose cervical screening was not up to date. Currently all women or people with a cervix who are registered with a GP and aged between 25-64 are automatically invited for regular screening every three or five years.
If you have previously had a hysterectomy or pelvic radiotherapy which removed your cervix, you may be offered a vault smear to check the cells in your vagina are healthy. You also still need to attend your cervical screening invite even if you had the HPV vaccine at school. Cervical cancer rates have dropped dramatically (90%) in women in their 20s who had the HPV vaccine at age 12 or 13. But the vaccine only protects against four strains of HPV.
Does the NHS always get it right with cervical screening?
Screening saves thousands of lives each year, but is not an infallible solution to cancer prevention, neither is it risk-free.
Some patients may get an incorrect or misinterpreted result, such as a false positive or negative. This means they are either over-diagnosed and given unnecessary treatment or have a late diagnosis when their cancer has advanced and curative treatment options have dwindled. However, if undertaken correctly and without error or negligence, the benefits of having cervical screening far outweigh the risks.
“I have had regular smears so why do I now have advanced cervical cancer?”
If a patient has been having regular screening and is then diagnosed with late-stage cervical cancer, questions need to be asked. We have supported many clients who have been diagnosed with cervical cancer after multiple cervical screening tests were misreported. Due to the errors, they wrongly believed everything was okay and were unaware that abnormal cells were developing into cancer.
If you have been diagnosed with cervical cancer and have had cervical screening the Hospital Trust should undertake an audit procedure where your past cervical smears and results are re-examined. The audit report should be provided to you.
What are the consequences of cervical cancer?
Some of the lasting effects experienced due to incorrectly interpreted smear tests may sometimes include lymphadenopathy of the legs caused by a radical hysterectomy, permanent nerve damage during surgery to remove the womb, reduced life expectancy by decades, and avoidable hysterectomies – all of which could have been prevented had the histology (examination of tissue samples) been reported accurately and the correct treatment started earlier.
In the most tragic of cases, women have died after their cervical cancer advanced to an incurable stage.
Our specialist medical solicitors helped these women and their families recover compensation for thenegligence of misreported cervical screening.
- £628,000 for the young widower of a mum-of-two who died of cervical cancer after a smear test was incorrectly reported as negative nine years before her death. She was diagnosed with cancer four years after the incident and, despite having a hysterectomy, the cancer returned twice.
- £484,000 for a woman in her 30s who had two misreported tests four years apart. By her third routine smear test, she was diagnosed with cervical cancer and required a hysterectomy which left her infertile.
- £325,000 for a woman in her 30s who also had two misreported tests, but this time at two different NHS trusts. She was pregnant when diagnosed with stage 1B1 cervical cancer and had to have a termination followed by hysterectomy, leaving her infertile.
Other examples of cervical cancer negligence include:
- Failure to carry out an adequate examination or take an accurate history
- Failure to refer a patient to a gynaecological oncologist for further investigation
- Mistakes in interpreting cervical screening results
- Mistaken diagnosis of cervical cancer often resulting in unnecessary surgery
Mistakes in diagnosing gynaecological cancers can be very serious, but the success of a negligence claim is contingent on whether you can prove that such delay affected the outcome. Simply put, would you have had a better outcome and less extensive treatment if your cancer had been diagnosed and treated earlier.
If you are diagnosed with abnormal cells or cervical cancer, you should discuss the treatment options available to you, the risks and benefits of each, and any side effects such as fertility issues.
Treatment options for cervical cancer can be aggressive, even if a patient is diagnosed at an early stage. You may be offered a trachelectomy if your tumour is 2cm, a procedure which only removes the cervix and not the womb. Many patients will be offered a hysterectomy, even if diagnosed at stage 1 or 2. In such cases options should be fully discussed and properly consented before surgery takes place. It may not always be necessary to remove lymph nodes (which reduces the risk of developing lymphadenopathy) and patients are entitled to be fully informed about the options in the decision-making process. For a woman of child-bearing age, side-effects affecting fertility can be physically and emotionally difficult to comprehend, more so if diagnosis is as a result of negligent practice.
A landmark ruling at UK Supreme Court ruled the NHS can be ordered to pay for surrogacy treatment abroad if a hospital’s negligence leaves a woman infertile. Our client who had to terminate her pregnancy due to cervical cancer negligence did include a claim for surrogacy costs in her compensation claim.
The future of cervical cancer
As the NHS works towards it ambition of eradicating cervical cancer by 2040, there are new initiatives being rolled out to improve access to cervical screening.
From spring 2025, there will be a new ‘ping and book’ service to fully digitise cancer screening. The service will send alerts to the phones of women to remind them they are due or overdue an appointment, with new functionality being developed to enable millions to book screening through the NHS App. This will be for both cervical and breast screening.
Previously, 31,000 women were offered kits to carry out smear tests in the privacy and convenience of their own homes in a trial by the NHS. These primarily went to women in parts of London who were overdue a check by 15 months or more. HPV home testing kits are currently available to buy at pharmacies at costs of between £29 to £129 but they’re currently not available on the NHS.
Parents are also being encouraged to ensure their teenagers receive the HPV vaccination at school. Currently, the HPV vaccine is offered to both girls and boys in Y8 at secondary school (ages 12 and 13). It plays a central role in reducing future cervical cancer cases by protecting against four strains of HPV and lasts for a minimum of ten years. If a child was offered it and missed/declined it for any reason, they are still eligible to have it on the NHS free of charge until they are 25.
One of the most important ways we can work towards eradicating cervical cancer is to talk. Talk to your mothers, sisters, daughters, relative, friends and colleagues about your gynae health. Don’t be embarrassed to ask questions. If they talk about any symptoms they may be having, give them a gentle nudge to seek medical advice. If you know someone close to you is approaching 25 or has not yet had their first smear, talk about your own experience to help dispel any myths or worries they may have. Encourage people not already registered at a GP to do so to ensure they receive screening invitations.
The Eve Appeal has a list of coversation startersyou might find useful.
By lifting the veil of embarrassment regarding gynaecological health and keeping the conversations flowing, we can all work towards preventing cervical cancer.