The last 18 months have been the most psychologically challenging in my life. No citizen of this country would seek this trauma out. Myself and the other women in the 221 group were told of a potential missed opportunity to detect our cancers at an earlier stage. This was compounded by the fact that this information was withheld from us. It threw us into a black hole. We all needed and wanted the truth. As patient advocates, this is what this journey for Ms Vicky Phelan, Mr. Teap, and myself is all about.
Why do we do what we do as patient advocates? We do it to try to restore trust in the system for ourselves, which in turn will help restore trust in it for others. We bore the pressure of that for the benefit of everyone. We did not want what happened to us, the needless pain, loss and suffering, to happen to anyone else. Advocacy has been a chance for us to rebuild hope and trust but it comes at a price. It has been cathartic, heartbreaking, emotionally draining and has had a huge impact on our everyday lives and work, relationships and mental health.
Dr. Scally’s investigations and subsequent reports brought many answers but not every answer. Dr. Scally stated it was a system doomed to fail. He said the scoping inquiry concluded that on the basis of visits to laboratories and examinations of their records, there was no reason those laboratories currently providing screening for CervicalCheck could not continue to do so. He said it was not feasible to reach conclusions on how satisfactory, or otherwise, the operation of the laboratories which provided services to CervicalCheck in the early years of the screening programme was. Some of the labs no longer exist, some no longer conduct screening and, in any event, making such retrospective judgment was not feasible. The final report of the scoping inquiry recommended that audits should continue to be an important component of cervical screening. It is important that clear priority is given to clinical audit of contemporary screening services so that improvements can benefit women in the short term. Dr. Scally reported on huge deficiencies in oversight, procurement, quality assurance and auditing of the system. His findings gave insights into what went so wrong for so many of us. The real success of his report and recommendations can only be appreciated when it is fully implemented. This is paramount for the future success of screening.
The Royal College of Obstetricians Gynaecologists was commissioned to compile a report into individual cases to see if there were missed opportunities, and if so their implications for women. RCOG found an array of missed opportunities in relation to screening, together with some colposcopy management concerns. The HSE worked on the communication and disclosure of this information and put much effort into working with clinicians to ensure that the women and families were treated with sensitivity, respect and compassion, and given the appropriate support they needed to process what was for many heart-scalding information. I want to thank each and every person involved in this process, as by and large the feedback from women and families was very positive in relation to the disclosure.
However, my own experience has not been positive or reassuring in seeking the truth in relation to RCOG. I had worked closely with the HSE over the last year on the planning of RCOG and giving the patient’s voice in this. The reports finally started to filter through in late August-early September. From an early stage, it was clear there were various issues in relation to accuracy of the information in reports, which were continuously returned to RCOG by the HSE. Examples of these included incorrect smear dates, incorrect diagnosis dates and incorrect staging of the cancer. On one call to discuss the issues it was suggested that there were cutting and pasting issues arising that may have been contributing to the inaccuracy of the reports.
On 2 October, I was contacted by the HSE and informed that following the return of the slides from RCOG to the laboratories that a mislabelling issue with regard to the slides of three women had been identified. The labels had been removed and replaced on the incorrect slides. Two of the three women involved in this mislabelling were Vicky Phelan and me.
On 3 October, I attended a CervicalCheck steering committee in Department of Health, where I voiced my concerns about the verification of reports and the quality assurance process involved in the checking of reports before releasing. I had been appointed to this committee in June 2018 by the Minister for Health to give a voice to the women involved in the CervicalCheck debacle. Meanwhile, women were feeding back to me that the reports they were receiving still contained inaccurate information. I was placated and informed there was no need for any concern and was also informed that people did not like my tone. I knew what that meant so I retreated to a position of silence.
Finding the reply at the CervicalCheck steering committee unsatisfactory, I raised the matter with the 221+ board group. We wrote to Department of Health on 9 October reiterating our concerns. It replied on 11 October. I have copies of this correspondence for the committee.
People often forget what is said, but we do not forget how we are treated. Eventually, I had enough of being treated as though I was not worthy and did not matter so I removed myself completely. My resilience could no longer sustain the pressure. A culmination of feeling irrelevant, the inaccuracies in the RCOG reports of which I was aware from the HSE, women contacting me directly regarding inaccuracies, and the amount of time I felt I was wasting not being listened to, forced me to resign, an act I did not take lightly but had to for my conscience. I wrote to Minister for Health on 31 October advising him of my resignation. I did not include my concerns in my resignation letter as I did not have any proof at that stage, but I did tell him exactly the reasons I was resigning when he called me that day.
On 15 November, I receive RCOG's first report, which outlined that my one and only slide prior to diagnosis from June 2011 was unavailable. By the report's classification, this slide was in the concordant group. On the same day, my solicitor received a three page letter from HSE outlining the movements from June 2011 of my slide, which was deemed "unavailable" by RCOG. Ironically, the first and last paragraph refer to the fact that the errors would have no impact on my RCOG review. At approximately 6 p.m. on that day, the HSE called to say that RCOG had produced its second report and that it would be hand delivered to Galway.
On the following day, 16 November, two very kind and compassionate ladies from the HSE, with whom I had worked closely through my advocacy, hand delivered the second report to my home. My husband was so angry that he could not even stay in the house and had to leave. He was angry but, I think, more hurt that I was so upset. For the record, I have the utmost respect for the HSE employees who have worked with us. They have always treated us with absolute respect. RCOG's second report showed that the missing slide had been found and my report was now classified as a discordant result. I became the victim of my own concerns. I voiced my concerns to the most senior people in the health system but it would seem that women are still not being listened to.
It is important from our experience to caveat the RCOG aggregate report findings with the following points. A little over half of the approximately 1,850 women invited to participate, who had screening prior to diagnosis through the CervicalCheck programme, did so. A total of 1,038 participated, which is a 56% participation rate, so we are not looking at the full picture. While not questioning the clinical assessment of each case, from our experience the accuracy of the administration of these reports and how the information was processed has not been accurate in some cases. A statement signed on 18 April 2019 by RCOG and three other organisations working in the UK’s cervical screening programme stated there was an urgent need to address the outdated IT systems that support UK screening. It also stated the UK programme's IT infrastructure was deemed not fit for purpose in 2011 and that since then, little progress has been made. This raises concerns about the integrity of RCOG's statistical reporting capabilities. RCOG's success is based on percentages of discordant versus concordant but the percentage of concordant would seem skewed and non-intuitive. Cases involving missing slides were classified in some cases as concordant when they should intuitively have been classified as inconclusive.
Further concerns about the integrity of the processing of the information were raised by the mislabelling incident. The circumstances surrounding the removal of labels, which were then incorrectly replaced on a different woman's slide were not adequately explained. Where a system produces incorrect reports subsequently spotted by the women concerned, the reliability and the accuracy of all reports cannot be trusted.
I cannot face another year of negativity and anguish, leaving myself and other women feeling distraught, hopeless, powerless and burnt out. It is not good enough that we are still going around in circles seeking the unpalatable answers to allow us to try to regain our peace of mind and the ability to sleep at night.
Last week, I met my consultant for the first time since this broke in April 2018. I was feeling apprehensive, hurt and broken. I had trusted with my life this doctor, who has always treated me with the utmost respect. We had an honest and frank discussion airing our views, concerns and criticisms, with both of us desiring the same outcome, which is a screening system in which women can have faith. I am asked all the time by Irish women whether they can trust the results of their smears. We need to encourage the uptake of HPV vaccinations for girls and boys in order to reduce the incidence of cervical cancer but this takes time and faith on behalf of parents to vaccinate their children. In the meantime, every day women are being diagnosed with cervical cancer and are battling the disease through treatment. We have a huge survivorship that desperately needs care in dealing with and living with the after-effects of this cruel disease. No Government should condone substandard care for its citizens and all of the patients suffering as a result of cervical cancer should have access to adequate post-treatment care and support. I had to go to the UK to get a definitive diagnosis of lymphedema last year, which is another horrible aftereffect of cervical cancer that I must live with.
We need to focus a number of supports, including a psycho-oncology service and oncology social workers. Onco-fertility should be available in the public system. At present, the Government funds this through a private clinic so the pathway is not direct. Psychosexual support is also required, as are dieticians to help with gastroenterology and post-radiation bowel toxicity, pre-clinical lymphedema assessment and early diagnosis, management and physiotherapy for pelvic floor and lymphedema.
We must recognise and acknowledge that clinicians feel unsupported, isolated and undervalued. All involved have felt the strain but in different ways. As patients, we must value the concerns of the clinicians on whom we absolutely rely. Healthcare professionals, such as colposcopists, nurses and smear takers, are essential to the provision and promotion of good healthcare and healing and they deserve respect.
Screening is so important and helps save lives. It is hoped that any impasse can be lifted by constructive dialogue, such as that from Dr. Nóirín Russell and Professor Donal Brennan. We all have a vested interest in preserving life, health and good relationships. We say this today in a place of neutrality in the Houses of our Oireachtas and invite doctors to work with us and come together for mutual benefit. We need them. We must heal any divisions and emerge united and strong.
Perhaps we have established as much of the truth as is possible and the time has come for us to come out of the trenches and focus on better futures and outcomes for women and their families. For Vicky, Stephen and I there is no going back or undoing the past. We must all live with the consequences of these failures and in doing so we should not forget but should strive for a stronger voice for the patient and to build better communication channels and synergies with all working in our health system.
Advocacy has been a heavy burden at times and I want to thank the health committee for the invitation to come here today and give us a voice instead of the usual talking about us. The references often made to us sound like we are an army of people but generally it is just Stephen and myself. We are far from perfect but we have always been honest and we have done our absolute best.