A key member of a committee set up to drive change in the national cervical cancer screening programme is considering quitting because she no longer has faith in it.
Lorraine Walsh said she believes she is “wasting her time” travelling to Dublin to take part in meetings of the CervicalCheck steering committee because “HSE and Department of Health officials are being selective in what they tell us”.
“I thought we were building up a relationship and trust, but I now realise they are withholding information and being selective in what they tell us,” said the Galway woman.
“I feel like a fool. I’m considering my position at the moment.”
Ms Walsh’s comments are on the back of revelations last week that the screening results of 800 women have been delayed due to an IT glitch at the US laboratory where they were being processed.
The news only emerged after one of the women affected by the delays contacted RTÉ.
Both Ms Walsh and Stephen Teap, the second patient representative on the steering committee representing women and families affected by the CervicalCheck scandal, said they only found out “45 minutes before the Six One news” last Thursday.
The Department of Health knew since June 25, even though it initially said that it was informed by the HSE on July 10.
Mr Teap and Ms Walsh said they had attended a steering committee meeting on June 26 and felt it was inconceivable that HSE and department officials hadn’t discussed the issue beforehand.
Yet it was never mentioned to them at the steering committee meeting.
Both Mr Teap and Ms Walsh said they are aware of “pre-meetings” taking place prior to steering committee meetings, where they believe HSE and department officials agree on what to tell them.
Mr Teap said he has asked new HSE chief Paul Reid to establish if the latest crisis was discussed at the June 26 pre-meeting, and if so, why it was not communicated to them.
Mr Teap said he had told Mr Reid that he wanted “pre-meetings completely removed from the whole process”, that they were “a dress rehearsal for the main event”, and “dangerous”.
“Only certain people are allowed in to the pre-meeting — and then we get the spin,” said Ms Walsh.
She said she has asked Mr Reid to include details of the HSE communications with the department in the rapid review of the issue that he announced at the weekend.
“I also asked him to include who decided not to communicate it to the committee,” she said.
Labour Party health spokesman Alan Kelly said the HSE and the department “have all changed their story on this issue a number of times since the story broke”.
He urged Health Minister Simon Harris “to address this issue immediately”.
The HSE has known about the IT problem since February and mistakenly believed that Quest Diagnostics laboratory in Chantilly, Virginia, was communicating the results manually to GPs in Ireland.
Ms Walsh, whose misread smears deprived her of the chance to have a family, said it seemed that “nobody had bothered to check if letters were going to the GPs”.
She said the two elements of a screening programme that needed to be done correctly — testing and reporting — were not being done properly.
The Irish Examiner asked the HSE what reassurance it could give to Ms Walsh.
In a statement, the HSE said the “work of people like Lorraine Walsh and Stephen Teap, in a voluntary capacity, has ensured that the interests and the voice of the patient was at the centre of significant changes that have improved the programme during this difficult time”.
The HSE also said it was “finalising a patient engagement strategy for screening services”.
It said it “acknowledges that much work remains to be done to fully implement the recommendations of Gabriel Scally, notwithstanding the progress to date”.
Dr Scally compiled a report on the CervicalCheck controversy which came to light in April 2018 after Vicky Phelan, terminally ill with cervical cancer, highlighted the scandal.