Cervical cancer campaign group 221+ has condemned doctors treating some women requiring cancer treatment “like a leper” because of their membership of the advocacy group.
Publishing his final report on the CervicalCheck screening controversy, public health specialist Dr Gabriel Scally told reporters that the treatment of members of the 221+ group like “second-class citizens” was “one of the things that has upset me enormously.”
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He criticised the treatment of members of the group in his final update on whether the recommendations of his 2018 scoping inquiry report had been implemented.
The group was set up by women and family members, including the late campaigner Vicky Phelan, who were not told about an audit of past smear tests taken from women diagnosed with cervical cancer. The audit showed that the earlier tests could have provided a different result or warned of an increased risk or evidence of developing cancer.
Dr Scally said he had been told that some clinicians have asked women in the group whether they were members of 221+ before considering treating them.
“In the words of one woman, ‘I’ve been treated like a leper,’” said Dr Scally in his report.
“That is completely unacceptable,” he told reporters. “It is very remiss at this time but this sort of attitude… is still prevalent.”
At a follow-up press conference, Lorraine Walsh, a cervical cancer survivor and a 221+ member, said she was shocked to learn that some women found it difficult to get consultants to see them and that some clinicians would not treat them if they are a member of the group.
“It is very sad because a lot of these women need continued care and are dependent on their clinicians to ensure their health into future,” she said.
In a statement, the 221+ group said that it had “mixed feelings” about Dr Scally’s final report because it highlighted a “range of shortcomings and actions that have not been addressed.”
Dr Scally’s report “reflects our long-expressed concerns that there remains an active determination within the Irish healthcare system to avoid dealing up front with things that go wrong and with respecting those who point out those missteps,” it said.
The group questioned the slow progress in introducing a policy of open disclosure where doctors are compelled to inform patients or family members of harm done in their care.
They criticised delays in the passage of the Patient Safety Bill, introduced in 2019, that would bring in open disclosure but criticised it being limited mostly to situations where patients die.
“This is the most important thing that Vicky Phelan wanted to see through. This is the biggest thing left hanging still today,” said Stephen Teap, 221+ campaigner whose wife Irene died of cervical cancer and was one of the women not told about the CervicalCheck look-back audit.
He described Taoiseach Micheál Martin’s promise in the wake of Ms Phelan’s death earlier this month that the legislation would be passed by the end of the year as “just smoke.”
“In the words of Vicky, we need to see actions on this,” he said.
Ms Walsh urged the Government to amend the legislation to introduce open disclosure across all cases where errors led to patients suffering harm and not just in their death.
“Why bring in legislation that is already flawed? Why not just get it right for a time? It just doesn’t make sense to bring in a bill that isn’t fit for purpose,” she said.
Mr Teap said Dr Scally’s recommendations have “definitely not” been fully implemented, either in the letter or spirit in which they were made.
“This isn’t about ticking the box. This is about a shift in culture, also, which clearly hasn’t take place at all. There’s a minor few within our healthcare system that still are incapable of acknowledging failure,” he said.
The group referred to comments by the head of CervicalCheck, Dr Nóirín Russell, in 2020 - which emerged in September - that affected women making claims through a tribunal on the service’s failures know “in their heart and soul that they haven’t been wronged.”
She subsequently apologised for the remarks.
“We have a senior management team in the screening programme that don’t believe that the CervicalCheck programme was flawed,” said Ms Walsh.
“Until they acknowledge and accept what happened, we, the women, involved in this and absolutely every woman in this country can’t have trust in it.”
Mr Teap said that if Ms Phelan was still alive and at the press conference, she would have “some very poetic, decorative language” to describe how some people won’t accept past failings.
“We know what she wanted: it was change. It was change for the women of Ireland. It transparency, honesty and it was all the things I suppose that you can wrap up in that Patient’s Safety Bill but the lack of progress is what led her to constantly be fighting for change,” he said.
Dr Scally said he included a “very moving and truly remarkable” piece of writing from the 221+ group in his final report called “I Deserve” setting out they felt by about the controversy in “their words.”
It concludes:
“I deserve health
I deserve security
To be well
To be free
I deserve justice for the wrong done to me
I deserve happiness
Peace
Peace of mind
I deserve for this not to define me
I deserve to live
I deserve to be here
I deserve to be alive.”
