An insult to the sum of our Orla’s valuable life
Let down by the minister, ‘fobbed off’ by CervicalCheck – the State only settled the diligent campaigner’s case in her f inal days
IN her dying days, Orla Church’s only wish was that others would not have to suffer as she had.
She was never meant to be a campaigner for cervical cancer victims; and even when she did she was a quiet, behind-the-scenes force, working diligently to better the lives of so many women and their families who, in all likelihood, might never have known her.
But it became her vocation, and it remained so, right up until the very end, when she died last Saturday.
Orla was the 21st woman to die in a scandal that continues to engulf the nation, and unravels day by day, even hour by hour. But her diligence and determination have ensured that she is not just a statistic, a number, or a mere figure on the State’s files.
Opening their doors to the Irish Mail on Sunday, her family speak, for the first time, about Orla’s legacy – and a life that cannot be encapsulated in any sum settled at the High Court.
The court heard on Thursday, days after she died, that her action against the HSE and US laboratory Quest Diagnostics was settled. The contested case by the 54-year-old was settled after mediation without admission of liability.
Her younger sister Áine McEneff said: ‘It’s not about the money, but it was an insult. It’s a person’s life. It doesn’t matter to Orla, because she’s gone now and she can’t use it, and it doesn’t matter to us because it’s not about money. It’s a poor acknowledgement, considering what happened and all her work.’
The mediation between the HSE, Quest Diagnostics and representatives of Orla was urgently brought forward because of her deteriorating condition.
The exact sum has not been disclosed but in the end, she could no longer continue her High Court battle as she knew she had so little time. But what angers the Church family is that others will have to seek compensation through the courts as they face a terminal diagnosis while trying to secure their families future and care – among them Limerick woman Ruth Morrissey, who will again make her way to the Four Courts this coming week.
Orla’s family still have questions about accountability, concerns that were first raised 10 years ago with the outsourcing of smear tests to laboratories in the US.
‘We need answers and accountability from people who made decisions 10 years ago regarding outsourcing, which went against many experts’ medical advice.’
They are ‘disappointed’ with Health Minister Simon Harris for cancelling a meeting with Orla at the last minute, last October, just weeks before her condition began to deteriorate. They had met previously last June.
Orla was in hospital at the time of the cancelled meeting, but was prepared to take her oxygen tank with her in order to meet Minister Harris and Dr Peter McKenna, the Clinical Director of Women and Infants Health in the HSE. Her sister Áine, who had taken the day off work for the meeting, said: ‘By the time I got to the hospital she looked awful. She was prepared to go with her oxygen tank but she got the call from Dr Peter McKenna to say that Simon Harris had got in touch to cancel the meeting. It was never rescheduled.’
Mr Harris also cancelled another meeting with Orla and other women and families affected by the CervicalCheck audit, in December, this too at the last minute.
‘It was very disrespectful,’ her brother Ian Church said. ‘She was very disappointed when the first was cancelled because she had the energy to attend. For the second meeting, a lot of women were going to that, a lot of very sick women. Orla was prepared again to leave hospital in order to go to it. After every meeting was cancelled, you could see she was so deflated.
‘They were giving her a focus and taking her mind off her illness.’ They feel the meeting should have been held, as efforts were made by travelling victims and families. A spokeswoman for Mr Harris told the MoS: ‘The minister was very glad to have the privilege of meeting Orla and was so impressed by her determination to bring her experience and her abilities to bear on making improvements for the future. It was regrettable a subsequent meeting could not take place due to a legislative commitment in the Oireachtas. The minister was aware Orla’s engagement with the HSE had been continuing. She made a singular contribution in leading to and collaborating on the production of new clinical guidelines related to her condition. He was deeply saddened by her loss and knows she will be very much missed.’
Orla’s death came after a long battle with cervical cancer. Her diagnosis, in 2016 inspired her to fight for a better screening system and better services for women, particularly around early HPV testing.
Her research cited the importance of testing women for HPV so those diagnosed can be reprioritised as urgent and seen by consultants quickly. This is particularly helpful to women on lengthy public waiting lists who can’t afford private care.
She brought her research to the National Screening Service and presented it to Minister Harris, passionately believing that ‘a proactive approach’ to testing women would save lives in the future.
Plans to introduce HPV testing have been delayed but it’s understood it may be introduced later in the year. Orla’s family’s want it to be ‘rolled out right away’.
Ian said: ‘It’s a simple strategy. That’s why she addressed Gráinne Flannelly [the former clinical director of CervicalCheck] at a screening service conference. She asked why HPV testing wasn’t more prevalent when they know it will help the women of Ireland. I don’t think she was given an answer.’
Although Orla was diagnosed with cervical cancer in 2016, she had presented with symptoms of the disease in the summer of 2015.
Áine recalled: ‘Her GP sent a letter of referral to Beaumont Hospital and she was put on a routine list for 15 months, as opposed to an emergency list, because she had two clear smear tests in 2011 and 2014 so her doctors weren’t immediately thinking cervical cancer.
‘I don’t know how long she was waiting before she decided to go private herself, but it took three months to be seen privately even with those symptoms of pelvic pain and discharge.
‘During the diagnosis, in June 2016, she said her colposcopist was shocked by what was found.
She was ready to take an oxygen tank to meeting
‘The woman was shocked that the tumour hadn’t been identified before now. She got such a fright. The woman ran to inform other staff and Orla was back in then immediately the next day. She began treatment in September 2016.
‘That was as quickly as they could get it started, it does take time and we understood that. She sailed through the treatment and was very optimistic.
‘She told me her doctor told her: “You know Orla, this will be one year out of your life. I see these women all the time.” Orla was positive. She wasn’t very sick over the six to eight weeks of treatment.’
On May 4 last year Orla was told the cancer had returned and that she was one of the 221 women whose slides were identified as having false negative smear test readings.
On December 28 last year, she and her family were told the cancer had spread to her lungs.
She was given weeks to live. Court proceedings were initiated quickly in January by Orla’s solicitor. Áine said: ‘She was happy that it was going through. At one point she said it distracted her.’ Ian added: ‘It gave her an uplift to know that something was happening. It was a focus.’
Mediation talks were cancelled as Orla’s condition had deteriorated and she died on January 19 in the Mater Private hospital.
During the course of her illness, the family also stressed that Orla felt ‘fobbed off’ by CervicalCheck as she and her clinicians spent nine months prior to her second cancer diagnosis requesting the results of the audit of her smear tests.
Correspondence seen by the MoS, from the screening service to Orla, in 2017, show she was consistently told the review of her slides was ongoing and that she would receive the results in a ‘number of months’.
After receiving the results on May 12, 2017, on May 18 she wrote a letter to Dr Gráinne Flannelly – who later resigned as the head of CervicalCheck over the scandal – in which she said: ‘I was, and remain, very shocked and distressed by the outcomes of the audit which I received... My initial priority is to ensure that the original smear tests from 2011 and 2014 are presented and made secure which I trust you will expedite. In addition, I am formally requesting the full audit review results, in order to provide a more comprehensive overview than is possible from the short transcript included with your letter.’
A reply from Ms Flannelly, dated June 2, informed Orla that she could ‘rest assured’ that her slides would remain with Quest Diagnostics, the lab which failed to identify the abnormalities in her 2011 and 2014 smear test.
She was also told she couldn’t have access to the overall audit: ‘Unfortunately this entire process took some time. Information had to be requested, provided and assessed as part of the review process, and a determination made that the slides of your tests prior to diagnosis should be reviewed before requesting the actual reviews.’
The doctor was shocked by what she found