Doctors who failed to tell women with cervical cancer about incorrect smear tests need to sit down and say sorry to them directly in meetings, the public health official who investigated the controversy has said.
Dr Gabriel Scally, a veteran of the British health system, told reporters on the publication of his scoping report that affected women "would really like someone to say sorry and someone who means it, to say sorry."
He blamed “a whole-systems failure” for the controversy around the failure of the CervicalCheck screening programme and doctors to tell scores of women about a retrospective audit that showed smear tests were incorrectly interpreted, potentially preventing them from receiving earlier treatment.
Amongst a group of 221 affected women, 18 have died.
Dr Scally said that he found “problems in each and every one of the areas” he looked at, but no evidence of conspiracy, corruption or cover-up.
Disclosure by doctors
The Northern Irish doctor, with long experience working in the British healthcare system, devoted his strongest criticism for the medical profession and how doctors followed a policy of open disclosure.
He described the policy and its practice as “deeply contradictory and unsatisfactory.”
“In essence, there is no compelling requirement on clinicians to disclose; it’s left up to their personal and professional judgment,” Dr Scally told a press conference in a hotel opposite Leinster House in Dublin.
The failure of doctors to disclose information was felt "very intensely" by the women, he said; they were angry at not being told about the audit at the time and were equally angry about how they were eventually told when the controversy emerged following the legal case taken by Limerick woman Vicky Phelan.
“The manner in which they were eventually told of their situation in many cases varied from unsatisfactory and inappropriate to damaging, hurtful and offensive,” he said.
He recommended the Government implement a “proper policy of open disclosure” and that there should be a statutory obligation for doctors to disclose information to patients.
“Hiding things from patients and keeping them deliberately from patients in my view and in my recommendation that should be a matter that is potentially subject to legal sanction,” he said.
Refused to answer
During the press conference, Dr Scally gave direct personal accounts of how the women were treated.
When one woman tried to question her oncologist further on what open disclosure meant, the consultant “shut down, refused to answer the simplest of questions and ushered me out the door with no support and many questions,” the Government-appointed investigator recounted.
Another woman said her doctor told her the details of the audit “got lost in the file”. Another said her doctor “sat back in his chair” and “couldn’t give two hoots was his attitude.”
“This whole episode of poorly handled open disclosure created enormous psychological difficulties and in some cases mental illness amongst women,” Dr Scally told reporters.
Asked to identify “a hierarchy of failure” within his report, he said that at the top was the failure of doctors and consultants to the policy of open disclosure.
He said that it was “a terrible episode and caused enormous damage.”
What was “sadly lacking” in the whole exposed was grace and compassion, he said in his report.
Nuns don’t get cervical cancer
Dr Scally pointed out that the distressed relatives of one deceased women told him that during their disclosure meeting with her doctor, a consultant referred several times to the late woman’s smoking habit and told them that “nuns don’t get cervical cancer.”
“Now if that isn’t paternalism what is? It is verging on misogynism, isn’t it?” he said.
He called on the leadership of the medical profession to meet the women affected and “sit down and listen to them talk” to hear how the doctor-patient relationships were conducted in this case.
“I would like to see some of those women sitting down with some of their clinicians and speaking the truth about what went on and how they felt about it and I know that is something that some people will want but for is a good way,” he said.
“The only people who can properly say sorry are the people who were deeply involved in doing things that shouldn’t have been done and I would like to see that happen.”
Dr Scally said that one woman was told about the audit in the same room where they received diagnosis for cervical cancer; it was also the same room that her mother had died in.
“That is not acceptable,” he said.
Highly flawed audit
A letter of apology from the head of the HSE “means nothing” to these women, he said. “I think someone should say sorry who was actively involved in what went wrong,” he added.
The audit of past smears was “highly flawed” and the doctor-patient relationship was “doomed to be a bad relationship” because the medical advisory board of CervicalCheck met only once in 10 years and the screening service had their first meeting with the lead colposcopists until the controversy broke, he said.
He found that the doctors were never properly part of CervicalCheck and their view was the screening service should have told the women, but all evidence showed that it should be the doctor telling the patients.
There was an “ambiguity” there, he said.
Not be silenced
Dr Scally said he favoured a “no-fault compensation” approach in cancer screening services. He noted that women had to take legal action just to get access to their medical notes.
The Northern Irish doctor said he did not think there was any person currently in a role “that should be removed as a matter of urgency” but that a much wider overhaul of the health service was required.
“From the very top, change has to happen all the way down,” he said.
He said that right from the removal of the board of the HSE, there was “no external governance of HSE.”
He noted that “there was no-one in charge of CervicalCheck; the management structures are not there.”
He commended the “extraordinary determination” of Vicky Phelan “not to be silenced” in her role in bringing the controversy to light.
