Nóirín Russell: Smearing doctors is harmful to patients
After 20 months of vilification, morale is on the floor among CervicalCheck staff. says impossible expectations are forcing doctors to consider quitting the service
In the last year, the harsh reality of cervical cancer has become public. The disease often affects young women, and many of them have young families, which compounds the tragedy.
I first witnessed its terrible effects in 2001. I was a newly qualified doctor in Cork University Hospital and I admitted to the gynaecology ward a woman who was the same age as my mother. Like my mother, she had four children.
Earlier that day, she had attended the colposcopy clinic at St Finbarr’s hospital. She had irregular bleeding. Because she was bleeding so heavily, she was immediately transferred to CUH.
Later that night, the bleeding restarted. I was terrified. I was the only member of the gynaecology team on site, so I had to phone for help. When the consultant came in and stopped the bleeding, he used the phrase “palliative radiation”.
He suspected that this woman had cervical cancer and he was afraid it was so advanced that surgery would not be an option. He was worried that radiotherapy might not cure her and explained that because we did not have a cervical cancer screening programme, he regularly saw women with advanced cervical cancer in his clinic. I was devastated.
This was the start of my interest in cervical cancer prevention.
With regards to the recent CervicalCheck controversy, there are points that need clarifying.
The look-back audits only occurred after the patients had been told that they had cancer and after they had started their treatment.
The audit results had no impact on treatment or prognosis. Neither the patients nor the colposcopy doctors had been informed that the look-back audits were taking place.
When the results started coming back, there was uncertainty amongst the colposcopists about what they meant. We were unsure whether or not there were problems with the laboratories that read the smears or these results were just the expected “false negatives” that occur because screening tests are not perfect.
This uncertainty was not helpful for patients, but it was not deceitful. False negative and false positive results are an integral part of any screening programme and do not mean that the programme is not working as it should.
Dr Gabriel Scally found no issues with the overall performance of the laboratories used by the CervicalCheck programme.
For every 1,000 women who have a smear test, 20 will have high-grade precancer cells on their cervix. Smear tests will detect 15 out of these 20 and, hence, will not detect five out of 20 abnormalities.
In other words, a negative smear has a 99.5% chance of being truly negative and 0.5% chance of being abnormal. A false negative occurs when a screening test does not pick up the abnormality it is designed to detect — this occurs in one in 200 smear tests. We cannot sustain a system where one in 200 women potentially pursues legal action.
Our legal system should be aware that significant awards and settlements for each false negative will make cervical screening unsustainable.
This will cause cervical screening to stop and has the potential to stop other screening. There appears to be a mismatch between expectation and reality: It is not possible to have a screening programme where false negatives do not occur.
I worry that many commentators persistently talk about “misdiagnosis”. The look-back audit upgraded 40% of smear tests — this is consistent with look-back audits in the UK.
This means that the cytologist believed at the time of the test that the smear was more likely to be normal than abnormal.
It is important to acknowledge the harm associated with over-reporting abnormalities. Only 13% of “abnormal smears’”are truly abnormal — these are called “true positives”.
For many women who receive a smear result that suggests high-grade abnormal pre-cancer cells, further investigation will rule out any abnormality.
These false positives may require extensive investigation to exclude disease and these investigations may have health consequences.
I have looked after many women who have had complex pregnancy problems, including extreme prematurity, sepsis, and late miscarriage, due to having had cervical treatments. No intervention in medicine is risk-free.
The recent Justice Kevin Cross judgement on “absolute confidence” has frustrated clinicians, who know that all screening tests have an inbuilt chance of false negatives and false positives. Hence, “absolute confidence” is a medical impossibility.
As colposcopists, we have found it difficult to voice our opinions over the last year.
Those who tried were either ignored or vilified. There are 15 clinics nationally, with fewer than 50 trained colposcopists (nurses and doctors) in the country.
These are clinicians who have chosen to undergo extra training to perform colposcopy, which involves looking at the neck of the womb with a camera that has a magnifying lens on it and attempting to detect abnormal cells.
None of the doctors involved have a specific contract with CervicalCheck, but we have all chosen to work in this area.
In 2017, 16,500 new patients were seen in colposcopy clinics, 98%within eight weeks of referral. Since the CervicalCheck controversy, there has been a huge surge in referrals, due to “clinical concerns”.
Colposcopy clinics around the country are at breaking point. In my own service, at University Hospital Kerry, we have received a 57% increase in referrals and this has been replicated in clinics across the country. Extra resources have yet to be put in place to deal with this increased workload and women now regularly wait for longer than eight weeks.
But although we have seen a lot of worried and anxious women, we have not seen an increase in numbers of cancer detected, compared to previous years.
Each of the clinics also has a small number of gynaecology nurses, healthcare assistants, and secretarial staff. All staff in these clinics have been abused by patients, both in person and over the phone. There is mass distrust in the service and staff are blamed for the fact that screening does not prevent all cancers.
This has been fuelled by media reporting and political grandstanding. Most clinics have staff that are out of work due to stress and many senior staff have resigned.
The incessant tirade of negativity about CervicalCheck is impacting on morale and leading to significant staff burnout. This is damaging for patients.
In 2008, a national cervical screening programme was established in Ireland. This was mainly due to the commitment, drive, and passion of one woman, a Dublin based gynae-oncologist, Dr Grainne Flannelly.
She spoke, at every available forum, about the necessity of establishing this programme, because she knew that it would save lives. After an initial, expected increase in detection at the start of the programme, there has been a 7% decline in cervical cancer in Ireland every year since 2010. Since 2008, 65,000 women have had pre-cancerous cells removed and thus many cancers have been prevented.
We now have a vaccination that prevents 90% of cervical cancer — HPV vaccination has been offered to teenage girls since 2010 and to teenage boys since September 2019.
The RCOG review published earlier this week stated, unequivocally, that “there is clear evidence that the CervicalCheck programme is working effectively” and that “it is important to also recognise the inability of cervical screening to prevent all cases of cervical cancer.”
The CervicalCheck controversy has been toxic for clinical staff and even the most resilient among us have found it difficult.
Doctors and nurses are human, too, and we struggle to do our job when surrounded by criticism and negativity about a reality that is outside of our control.
We welcome open disclosure and the concept of sharing with patients and the wider public the uncertainties, limitations, errors, and mistakes associated with healthcare.
However, this toxic ‘blame culture’, which attempts to distill complex medical scenarios into a simplified blame game, is ultimately harmful for patients.
We need to decide how to move forward after this week’s RCOG review. Do we draw a line under the past 18 months and accept that our screening programme works, albeit with the inherent limitations of screening? Or do we abandon cervical screening, because the reality does not meet our impossible expectations?
