Checking up on CervicalCheck

Features Editor, Édith de Faoite and Deputy Features Editor Sarah O’Mahony ask what now for the most controversial healthcare scandal of our generation.

The passing of Vicky Phelan in November shook the country. The intensity of the moment might distract you from the current work of Dáil and the HSE in improving the system, which was Vicky’s resting wish. To address this we investigated what is happening now and how it is informed by the CervicalCheck scandal. We spoke to Stephen Teap and Lorraine Walsh of the 221+ group about medical misogyny, the complicated history of the Patient Safety Bill, the controversial HSE media guide released and more. We also spoke to the HSE to learn more about how they are improving the services they provide in response to past events.

Like women such as Lindsey Bennett, Laura Brennan, Emma Mhic Mhathúna, Irene Teap, Ruth Morrisey and Lorraine Walsh, Vicky was not informed of the incorrect reading of her cervical screening slide until it was too late. An audit of the CervicalCheck programme slides in 2011 uncovered false negative results of cancer with 221 women affected. The scandal erupted due to the withholding of this information from the women affected.

Lorraine Walsh

Motley spoke to Lorraine Walsh, a Mayo native who lives in Galway with her husband. In June of 2012, Lorraine was diagnosed with cervical cancer at the age of 34. A year prior to her diagnosis, Lorraine had a routine smear test and had been informed that there were “low grade pre-cancer cells'' present in her smear test. When she returned for a follow up test, she received a call from her doctor informing her there were “high grade pre-cancer cells'' present and she required a colposcopy. Shortly thereafter, she was diagnosed with cancer. Following her diagnosis, Lorraine underwent extensive therapies and surgeries, and was thankfully cured of cancer. However, her treatment left her without the ability to have children. When she got the call to inform her that she was one of the many women whose slides had been misread, she realised that, had it been read correctly, she could have been diagnosed far earlier, and perhaps been left without the devastating life-long side effects of her treatment.

Since Lorraine learned that she was a victim of the CervicalCheck scandal, she has worked tirelessly as a patient advocate to fight for justice. Together with Stephen Teap and Vicky Phelan, she co- founded the 221+ group to support victims and their families. Together, these three people, all affected by the failures of this system in their own ways, became highly involved in the investigations and legal proceedings that ensued after the scandal.

Speaking on the emotional and physical toll this level of advocacy took on her, Lorraine said “some days you just want to give up, but you can’t. I can’t do that”. The advocacy never stops, as she told us that she was heading to Dublin the following day for the vote on the Patient Safety Bill, which was being debated in the Dáil.

Background of The Patient Safety Bill

Initiated in 2019, this Bill aimed to legislate across the HSE which includes the National Screening Service (NSS). The central goal being the implementation of mandatory open disclosure. This is the obligation of a healthcare professional to share a mistake committed with their patient. The December 2022 Dáil debate featured TDs pushing back at the meagre two hours the Bill had been given to debate and the lack of consultation with the 221+ Group. Minister for Health Stephen Donnelly was proposing a system of patients triggering reviews of their slides rather than an automatic system. However, no legislation was in place for the obligation to inform patients of this right. Legislation for mandatory open disclosure was looking unlikely.

Medical Misogyny

When asked about the levels of sexism Lorraine was exposed to throughout her experience, she noted that she never felt as though she was a victim of sexism. This all changed, however, when she began working as a patient advocate. When referring to the meetings that were held with politicians and the HSE, Lorraine mentioned the “many, many times” that she would ask Stephen Teap to speak on her behalf as she felt as though her voice was not listened to.

Lorraine had an extremely positive experience during her treatment. However, since the formation of the 221+ group, others have been questioned on their associations with the group before clinicians decided to treat them. One woman stated: ‘I’ve been treated like a leper’.

Stephen Teap

Motley also spoke to Stephen Teap, widower of the late Irene Teap. Stephen lives in Cork with his two sons Oscar and Noah. Irene passed away in 2017 after a diagnosis of stage two cancer. Her two cervical screening slides were misread in 2010 and in 2013. It was not until 2018 was Stephen informed, through a phone call from the HSE, that Irene’s slides were misread. In the High Court in December 2022 Stephen received an admission of liability and causation from the two labs involved and from the HSE.

Speaking on the Patient Safety Bill over Zoom, Stephen explained he would be measuring the legislation using the ‘Irene Teap’ test. “Will [the patient] get disclosed to? Regardless of if it is done anonymously in an audit or if she opts in but will they be getting disclosed to. Irene should have been given that right to know before she died.”

In February 2023 Minister Donnelly accepted amendments to the Bill. There will now be an obligation on healthcare professionals to inform their patient of their right to a review of their slides. When we spoke to Stephen Teap the 221+ group had in previous days contacted the Minister and were then in consultation with the government right up until 10am the morning the Bill passed. Later speaking on Today with Claire Byrne, Stephen praised the respectful nature of the debate and expressed his relief that the legislation passed.

‘CervicalCheck is not the same programme that was reviewed back in 2018, but there is certainly a hell of a lot more to do’. Stephen commends the restructuring of the programme as well as people in the HSE he has worked with on various committees for their passion and commitment. However, he is not satisfied that the HSE has communicated its fault in the CervicalCheck scandal effectively to the public. “In order to say we are wonderful today, and we’re going to be even better tomorrow, you have to say, we’ve learned so much yesterday. The beginning steps of trust is acknowledging what happened in the past”.

Both Stephens and Lorraine’s comments are echoed in the inquiries into the programme since 2018 by Dr Gabriel Scally. As of his latest report in November 2022, Scally is now confident of the safety of the screening process. He also states that there is a lot more to be done especially surrounding the culture of open disclosure.

In September the HSE Press Office released a media guide which Stephen described as a “rewriting” of the CervicalCheck scandal. It was produced for academics, broadcasters, journalists and commentators. According to The Irish Times the guide stated that ‘no lives were put at risk’ by CervicalCheck.The media guide is no longer being circulated. When we asked the HSE about the media guide, they told us that the media guide “is set to be updated with input from the 221 group”. However, the question must be asked: is this how we build trust?

Looking to the Future

The patient-triggered review of slides is the greatest success of this story. Speaking to the HSE Press Office, they told us “The NSS will soon implement a new personal cervical screening review process, which has been created with women and families affected by interval cancers”. Dr. Scally’s recommendations focus on the development of an Irish National Cervical Screening Laboratory. In December 2022, the lab processed its first samples for the programme. Dr Aoife Doyle, Lead Pathologist has stated that “it’s a lab that’s very much wanted by the Irish public and by scientists in Ireland, but it’s not about doing it quickly, it’s about doing it correctly”. Although ensuring that this is done correctly is paramount, it is also vital that this process is expedited to ensure that we do not repeat the mistakes of our past again.