Legislation introducing mandatory open disclosure is Vicky Phelan’s ‘legacy’

Legislation that will establish mandatory open disclosure in the healthcare system passed through the Dáil on Wednesday evening.

The new law will make it mandatory for patients to be informed of their right to patient-requested reviews following representations from the 221 plus CervicalCheck support group.

Minister for Health Stephen Donnelly said the Bill was brought forward as a result of Vicky Phelan and others who had taken a “brave and difficult stance”.

The Minister said the Bill, which is dealing with the legacy of the CervicalCheck scandal, included 115 pages of complex and important legislation.

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Speaking on RTÉ Radio’s Morning Ireland on Thursday, former Labour leader Alan Kelly praised Mr Donnelly for his constant engagement on the “very complex” legislation. “I made a commitment to Vicky that we would get this done. Vicky was the type of person who left nothing unsaid. And she made me promise to leave nothing left undone,” Mr Kelly said.

CervicalCheck campaigner Lorraine Walsh of the 221 plus Group said that Wednesday was a very proud day but also a very sad day. “It was an immensely proud day for me and the other people involved. To know that what happened to Vicky and others like myself will not happen again,” she said.

She said the critical issue in the new Bill is the right for patients to be entitled to a review of their diagnosis. Ms Walsh said these reviews or audits would offer patients comfort.

“It means that you can actually find out the truth, that is so important to everybody to know the truth in relation to your history, in relation to your health, and to be able to at least have peace,” she said. “Now at least everybody will have an opportunity to request that review. And it’s mandatory that the agency will have to tell you about that review process when you enter a screening programme.”

Campaigner Stephen Teap has told of how nervous he was over the past few days as the final wording of the Patients’ Rights Bill was agreed with Department of Health officials.

The final approval for the wording of the Bill was not given by the advocacy group 221 Plus until 10am on Wednesday he told RTÉ Radio’s Today with Claire Byrne show. “We had to make sure that every word was correct,” he said.

Mr Teap described his “massive relief” at the passing of the Bill and commended all the participants in the Dáil debate on the Bill for the tone of their contributions.

“I have to give credit where credit is due. I am thankful to all for the respectful manner. This Bill was very emotional for everyone.” “It was brilliant to be able to achieve this for Vicky and Irene.”

Irene Teap, Mr Teap’s wife, was 35 when she died in July 2017 after being diagnosed with stage 2 cancer in September 2015. She had received negative smear test results in 2010 and 2013.

Mr Kelly pointed out that although screening services will be returning to the Coombe hospital, there were no staff trained to screen and it would take time for people to learn how to screen.

“It’s not going to happen overnight, but the aim is to have screening back in Ireland and it will happen and we will ensure it will happen. That was very important to Vicky. It’s important to us too, and it’s important for women to trust in the screening programme.

“We’re heading in the right direction, but really this is about a mind shift. This is about the health service providers, principally about ensuring that once there’s an incident, a notifiable incident, that they have to act quickly and that the practitioner also has the role to play in relation to ensuring that this is dealt with quickly.”

Mr Kelly urged that women who had smears taken between 2018 and 2023 should be included when the new legislation is signed into law. They should also have the right to request a review of their slides.

“I absolutely want this to happen because it is totally and utterly necessary,” he said.

Ms Walsh said lessons had been learned from the CervicalCheck scandal. “I do believe there is change happening. We are in a different place than we were five years ago, for sure,” she said.

[ ‘She made every minute matter’: Vicky Phelan memorial remembers person behind ‘nation’s treasure’ ]

[ Vicky Phelan: Even heroes need to rest ]

[ ‘Inconsistent’ smear reporting flagged a decade before CervicalCheck controversy ]

The CervicalCheck scandal began in 2018 after Ms Phelan, who had cervical cancer, settled her High Court case for €2.5 million after she was given incorrect smear test results.

It emerged that hundreds of women diagnosed with cervical cancer were not told about an audit of past smear tests. The HSE said at the time that in the cases of more than 200 women, the audit found on look-back that their screening tests “could have provided a different result or a warning of increased risk or evidence of developing cancer”.

Mr Kelly said that for him “this Bill is Vicky’s legacy”.

“This Bill does bring a certain benchmark and a certain closure and that’s why it’s so critically important to myself, to Lorraine Walsh, to Stephen Teap and everybody else,” he said.

Sinn Féin health spokesman David Cullinane said mandatory open disclosure was “really important” and there was now legislation that would “pass the Vicky test”.

Mr Cullinane said there was “a lot of hurt and a lot of pain” that many families had to go through because of the CervicalCheck scandal and that tribute should also be paid to Dr Gabriel Scally.

“I think we also have to accept that we have a long way to go in terms of many of the issues Dr Scally recommended ... they cannot be long fingered and the issue of being to make a complaint on an issue of clinical judgment is not one that we can now just forget about and put on the long finger,” he said.

Social Democrats co-leader Róisín Shortall said while it was an important piece of legislation, it was also “a very poignant occasion” with the women affected held “front and centre” throughout the debate.

“Those women who lost their lives as a result of what happened in CervicalCheck and those also whose lives were turned upside down as a result of what happened and who have survived,” she said.