Mr. Stephen Teap:

First, I thank the joint committee for inviting Lorraine and I today as patient representatives on the CervicalCheck steering committee and as representatives of the 221+ Patient Support Group. I take this opportunity to highlight the importance of the cervical screening programme. Since the beginning of this debacle, I, along with Vicky, Lorraine and others, have spoken about the importance of women continuing to get their smears taken and continuing to participate in the screening programme. Screening saves lives and the CervicalCheck screening programme has saved many lives. The odds of the screening programme picking something up are in favour of the women who participate. This has been a difficult conclusion for me to overcome given how it completely, 100%, failed my late wife, Irene. However, the facts are evident and even CervicalCheck screening, a programme "doomed to fail", as described by Dr. Gabriel Scally, has saved lives. That being said, many lives have been lost as well. Many families have been torn apart and destroyed. Many women have beaten cervical cancer but have to live with the high price of beating such a disease with life-long complications, including infertility and psychosexuality.

When I went public in May 2018, it was to raise myself to a level where I could have a voice to get the answers for my family on what happened to Irene. It was also to influence those people to uncover the failures in our screening programme to ensure what happened to my family never happens to any other family. If the true meaning of failure is to highlight the mistakes of the past, learn from them and correct them to ensure they never happen again, then Dr. Gabriel Scally's recommendations are key to this and should remain the backbone in addressing these failures. Of the 116 actions the HSE has identified in Dr. Scally's recommendations, a total of 95 are now complete. A little over 80% of the implementation plan has been completed. I acknowledge the hard work of many people in the HSE who have been working tirelessly in achieving this and the transparency they have provided to Lorraine and I over the past year in oversight of this plan. That being said, I have concerns about its fulfilment and reaching 100% completion. Oversight of the implementation plan will drive it to fulfilment. We need to continue to shine a light on the progression of the plan. The oversight needs to continue. We must ensure a plan is in place to review the ongoing actions that have been implemented, while following up to ensure they are still being worked on in future. Restoring trust in the screening programme will not be achieved simply by this plan. We must start listening to the voices on the ground especially those of doctors, consultants and nurses in clinics throughout the country as well as the staff within CervicalCheck.

Currently, in the colposcopy clinics throughout the country, the wait time for referrals to be seen within four weeks for high grade abnormalities is at 70% while for those waiting to be seen within eight weeks for low grade abnormalities the figure is at 57%. This, in addition to what we have heard about staffing issues, in particular the inability to retain staff due to the extraordinary stress levels they face daily, is of major concern. If we do not get this right, it will only continue to worsen as we see the introduction of human papillomavirus screening next year. While the HSE and the Department of Health will argue that additional funding has been put in place to address this, I am concerned that not enough is being done and that this will be another problem facing all of us next year.

I have spoken on several occasions about the importance of patient representatives and medical professionals working together with one voice to give a view from the ground up. We talk about the culture in our healthcare system that needs to be changed. We know this cannot be changed overnight but we can start to dilute that culture by voicing our concerns together on the back of our common goal, which is to improve healthcare for everyone, not only for those who rely on the system but for those who work within it as well.

I have spoken to the Minister for Health and the Department of Health on a number of occasions about setting up a proper, structured, patient representative platform to help with this. Patient representatives who enter our healthcare system do so to make positive change but most, like Ms Walsh and I, do so coming from tragic backgrounds. There needs to be more of a structured platform to support us while proactively encouraging the patient voice to be involved in shaping our healthcare system, instead of exploiting those who enter on the back of a tragedy. It needs buy-in from the medical professionals, along with the colleges. They should be a part of shaping this platform also.

I want to acknowledge those who spoke out recently on the ongoing issues on the ground and commend them on their courage, in particular to those voicing their concerns around the staff in the clinics and CervicalCheck, whose voices are limited in what they can say. I want to thank them for speaking out. Working together will be the key stepping stone as we move forward to not only restore trust and confidence in our screening programme, but also rebuilding the confidence in the key relationships in our medical care, and also that of our GPs who we all rely on.

Now that RCOG has finally reached a conclusion our focus has been on those who have been impacted by this. I want to especially highlight the 159 women and families who, over the last three months, received discordant results from their participation in the CervicalCheck screening programme. These women and families like the 221 last year have come to learn of missed opportunities due to a delayed diagnosis on the back of slides that could have been read differently first time round. Now all these families are left in the dark, like those of us in the 221 who received audit results last year. They now face the many questions we faced when receiving this news.

What does all this mean? For the last 17 months, Ms Walsh and I have been requesting that funding be put in place so those who wish to have independent reviews can have them in order to get to the truth of what went on. Many of the families cannot afford them. They are complicated and are not cheap. One gentlemen who learned about the misreadings of his late wife’s smear tests called to my house recently. He said that he owed it to his wife to find out the truth of what happened to her and that he also owed it to his family. This is what it is all about - the truth. To us the truth is all that matters. I never bought into the RCOG review from day one because I knew it would not give the women and families all the answers they required.

We are all fully aware of the limitations of screening and for some an independent review has highlighted this for them. Now these families can get closure. Others have not been so lucky and our journey continues in the adversarial system that is the only route available to us in getting to the truth of what went on in these reviews. The limitations of screening have been spoken about on a number of occasions. Some critics refer to these limitations as the only thing at play here. Without a properly defined explanation of these limitations, the conversation has gone askew. For many of us, it has been hurtful to listen to. Without a proper, recognised, published document we can all refer to, we have started to see this term being used as a blanket excuse to downplay what is going on here.

We must remember that screening is not perfect and that it comes with its limitations. However, we must also remember the labs that outsourced smear tests to other labs, behind the HSE's back and without approval and the lack of quality assurance that was in place and that none of the labs that were outsourced to was ever checked.

We must remember that Dr. Gabriel Scally only visited seven of the 16 labs, as the remainder either did not exist anymore or there was no point in visiting them. We must remember also that Dr. Scally could not comment on the quality of those labs back in the day as he physically could not go back in time to review this. He was clear that any opinion he had was based on whatever information was provided to him. For the most part that information was extremely difficult for him to obtain.

For all these reasons, it is so very important for us to find out the truth individually. It is why we have been asking for the support of the Government in helping us achieve this. Not supporting the women and families in determining the truth will be this Government's biggest failure in this debacle. Contracting our screening programme to labs in the United States, the systemic failures within CervicalCheck and the lack of quality assurance around the additional labs that the HSE was unaware of have all had a devastating impact on many lives.

We are years away from determining a final conclusion on all this as we are waiting to hear how many of these slides either fall within the limitations of screening or breached the duty of care of the women who participated in this programme.

For now, all we can do is focus on the women and prioritise on correcting the wrongs of the past. Screening will and should save lives. We need to continue to focus on implementing Dr. Scally’s recommendations, so we can have the best possible screening programme, one that the women and families can rely on.

We also need to continue to build on the incredible legacy the amazing Laura Brennan left for us, and continue to move forward with the HPV vaccinations for girls and boys, which is being done. To get to the point of eradicating this dreadful disease, we need to look after women with the best cervical screening programme we can all trust and rely on while at the same time we must protect our future from HPV by educating and supporting parents on the importance of the HPV vaccination. I very strongly believe we can achieve this and prevent what happened to my wife and family from happening other families in the future.