Thank you, Seán. Thank you all for inviting myself and Stephen here today to tell our side of the story. It is great to be able to have this opportunity for me in particular to set out my experience and to answer any questions you may have at the end of it. Some of you have already heard my story numerous times at this stage I am sure. It has been dissected in different parts of the media. For me today, it is important that you hear my side of the story from me.
I will give my timeline and go back to where this all started for me. In February 2011, I had my son, Darragh. I had a smear test about eight weeks after I had Darragh. Up to and before I had my son I had always had smears from when I was old enough to have them, before CervicalCheck came into being in 2008. I never missed a smear. I had always had normal smears. I had never had an abnormal one. I had never had any LLETZ procedures or colposcopies so I had nothing to worry about in 2011 when I went for my smear after having my son. My pregnancy with my son went absolutely perfectly. I had no bleeding - no issues whatsoever. It was a textbook pregnancy.
When I went for my smear at the end of May 2011 with my GP, I had nothing to worry about. When she rang me four weeks later with the result of that smear and told me that it was normal and that I was not due for another smear for another three years, I was not even worried, to be honest. I was not expecting the result to be anything but normal. Then in July 2014 I was first diagnosed with cervical cancer. I actually went in earlier that year - I was not even called for the smear at that point. I went to my GP in June 2014, complaining of symptoms. For me, the symptoms were bleeding in between my periods. It was nothing major, just very light bleeding, but it happened for three months in a row from March until June. I gave it three months and I decided I would go to my GP and get it checked out, and ask for my smear a little bit early. I was not due until October that year apparently when I got the letter but I went in a little bit early just to get it checked out. I still really did not have any worries but there was something at the back of my mind. I just thought it was a little bit unusual for me. I was very lucky. I am a woman who has always had very regular periods. My sister would have always had very irregular periods and so she would not have gone with the symptoms I had.
My gynaecologist at the time when I was diagnosed told me that the type of symptoms I was complaining about were very minor. I think that is something that women need to know. It does not have to be really bad back pain and haemorrhaging that will send you into your doctor for cervical cancer. I had very mild symptoms and I still got diagnosed, but now I know that my diagnosis goes back prior to 2014. What made me go to the doctor in the end was that I had a bleed after sex, basically. That is what made me really think this a little bit more serious than I thought.
When I went for my smear in June, I bled after the nurse took the smear and she said that was a bit unusual because it was quite a lot so she marked it urgent and sent it off to the lab. That particular smear in 2014 went to MedLab in Sandyford. The result came back four weeks later. I got a call when I was in work on 2 July from the GP who told me that the result had come in and she wanted to talk to me. I asked her, "Can you not talk to me over the phone? Is it just high-grade changes that involve LLETZ procedure or colposcopy?" I kind of pushed her, but she would not say anything really over the phone; she asked me to come in.
I went in when I got back after work that week. She told me that there were very high-grade changes and that she was sending me for an urgent colposcopy so I went for that urgent colposcopy two weeks later on 15 July 2014. When I had the colposcopy, I went to the colposcopy clinic in Limerick. Dr. Kevin Hickey is the lead colposcopist there in Limerick. He checked me and while he was doing the LLETZ procedure - he told me two days later when I got the result that it was cancer - but that day he did not tell me. Obviously, he had to get the result of the biopsy, but he told me he knew. He could see the tumour. I had a 4 cm tumour.
He did the LLETZ procedure and took away 3 cm of a tumour that day. It was a very uncomfortable procedure. It was not a nice experience for any woman to go through, to be honest, but I did have an inkling that something was wrong before I left his clinic because he asked me if I was finished having children. At that stage I was 39 and had two kids. Luckily enough for me I did not want any more children; I was happy with my two. I said to him, "Why? Are you telling me I have cancer?" He said, "No, no, no - I am sending your sample off for a biopsy. It's just that these changes are very high grade and we would recommend a hysterectomy." He had already booked me in for a hysterectomy at that stage. I was due to come back on 1 August for a hysterectomy.
At that stage alarm bells were ringing and I thought, "Jesus, is it cancer or is it not?" I was waiting for this call. That was 15 July. Two days later he rang me. He had the results of this biopsy and it was cancer. He said, "We're going to go ahead with the hysterectomy on 1 August, but in the meantime I'm going to send you for an MRI scan just to be sure there hasn't been any spread outside your cervix." If the cancer is contained within the cervix, a hysterectomy would sort everything out and there would be no need for chemotherapy or radiation. I went off for my MRI scan a week later on 22 July.
On 29 July, I went to Kevin Hickey for the result and my husband came with me to that appointment. Dr. Hickey told me that unfortunately the cancer was showing up as having spread outside my cervix. It was highlighted in two lymph nodes. He said that at that stage, the hysterectomy was off the table because once it spreads outside the cervix, the cancer is graded much higher. He was then going to send me for a PET scan to see if it had spread any further and whether they might see small metastases. I went for my PET scan and that came back. Luckily enough, at that stage, it was only in two lymph nodes. However, the treatment plan had changed from a hysterectomy, for which I had planned at that stage, to radical chemotherapy and radiation. I was then passed to the oncology team and put under a radiation oncologist. For people who do not have cancer, it is hard to understand. You have all these oncologists and some people are under radiation oncologists while others are under medical oncologists, depending on the primary treatment. In my case, I was having radiotherapy five days a week and my primary oncologist was a radiation oncologist, namely, Dr. Lorraine Walsh. If you are attending primarily for chemotherapy, you have a medical oncologist. Dr. Lorraine Walsh was my lead oncologist and Dr. Kevin Hickey was the gynaecologist.
I started my treatment at the start of September 2014 and it was five weeks of hell. That is the only way to describe it. I was told that type of treatment is not prescribed for everyone. I am sure Stephen will attest to that as Irene Teap had the same type of treatment. It is usually prescribed for younger women who can tolerate it. It is five days a week of radiation and one full day of chemotherapy. It is all day from 8.30 a.m. until 6.30 p.m. and you are literally green coming out of it. At the time, I was coming home to two small children. My son was only three and my daughter was eight. It was very difficult and I was in bed for two or three days, unable to move and vomiting. It is a horrible experience and one I would not wish on my worst enemy. It was very difficult. On top of the treatment, you have to put up with all of the side effects. You are very sick and are given tablets to deal with that. You cannot sleep because you are on steroids to deal with the chemotherapy. It is a vicious circle. Luckily, I did not lose my hair. I like my hair and that was one good thing. People can call it vanity if they want but it was important to me because my son loved my hair.
It was a horrendous experience. The worst part of it, which no one really explains, was to come. I am sure Stephen will say the same. It was the brachytherapy, which is internal radiation treatment. After the five weeks of hell, you get a two-week break and they then bring you in for internal radiation treatment called brachytherapy. They literally insert an applicator up inside you. They knock you out for this. It was three times in a week and a half. There were three epidurals in a week and a half. They then irradiate whatever is left up there. Whatever is left inside you is literally melted together. I have no ovaries, womb or anything at this stage. It is all melted together. That is supposed to cure you. Those two weeks were the worst part of it. I had my last treatment on my 40th birthday so that was really lovely. At the end of it, I had an MRI scan. They leave you alone for a few months to recover and it takes that long. I had an MRI scan in February 2015, which showed there was no evidence of disease. I was relieved. I cannot say I was delighted because I was still sick and in recovery from the effects of the treatment. I had no evidence of disease and they told me that was great.
The next step was to bring me in every three months for two years because I was very high risk. I was stage 1B2 in terms of my original diagnosis in 2014, but because it had spread outside the cervix into lymph nodes, I was staged much higher in treatment terms. One is staged like a stage 3 cancer because once it spreads to the lymphatic system, there is no telling where it is going to go. They have to keep a very close eye. I was being seen every three months after I finished my treatment. One goes between the gynaecologist and the oncologist every three months. I had complained consistently of back pain after I finished my treatment, however. Looking back at my medical notes, which we got when I went through my court case, I was glad to see that I was not making this up. I complained consistently at the appointments of back pain but nobody really took much notice. They just kept saying it was a normal post-radiation effect. One trusts the doctors and assumes they know what they are doing and, as such, I believed them. I got to my two-year timeline and I thought that was good. They say that if you get past the first two years, you are doing really well. The next step after that is five years when you are really flying it. Obviously, I have not got to the five years and am back now with terminal cancer. I barely got to the four years, to be honest.
When I went back to Kevin Hickey for my check-up in September 2017, I was not feeling any worse than usual. I was fine and had no reduction in my energy levels. However, I had this lower back pain. The previous year, 2016, I booked myself into Barringtons Hospital privately for an ultrasound because I had this tugging sensation in my abdomen. I thought I had pulled a muscle or something as I was weight-lifting at that stage and trying to get back into exercise. However, it did not clear up so I went for the ultrasound. It could not explain the tugging and came back as normal. As such, I did not think anything of it. When I went to Kevin Hickey in September, I told him about the usual back pain and this tugging sensation in my abdomen. I had a pelvic exam, an internal exam, and he did not find anything wrong at that stage. Everything looked normal as far as he was concerned. He told me he would send me for a scan just to be sure. At that stage in September, when I had this meeting, I still did not have cancer. That is important to bear in mind with what I was told then.
I went for a scan in November and that was when I found out cancer was back. Once I went through the whole round of MRIs and PET scans, I found out, just after Christmas, that my cancer was back and was literally up my body. It is in my paraaortic lymph nodes so it is in a chain all around my aorta. It is touching off all my organs. Approximately five lymph nodes are forming a 10 cm mass around my aorta. All of one's vital organs are around there. Part of it is touching off my kidneys, my lungs and my liver. As such, I am not a candidate for surgery or radiation. All they would offer me was palliative chemotherapy. I went to see my radiation oncologist on 12 January this year and was told the only option open to me was palliative chemotherapy. No other treatment was available. If I took the palliative chemotherapy option, I had 12 months and, if I did not, I had six months to live. I pushed her to find out the timeframes as she was not willingly going to tell me. That is where I am at the moment with a terminal diagnosis.
I will rewind a bit to that meeting I had with Dr. Hickey in September 2017 when he sent me for the scan to find out what I know now, that I have terminal cancer. He told me then that he wanted to have a chat with me about the audit the cervical screening programme had carried out. He told me audits are carried out as a matter of routine when women are diagnosed with cervical cancer. That triggers a check. When a woman is diagnosed with cervical cancer, CervicalCheck will look at her screening history to see if there was anything which might have been missed. The smear which diagnosed my cancer was in 2014. My previous smear was in May 2011, eight weeks after the birth of my son, and I had been told it was normal. When they retested it, he told me, there was now a query about the smear. He did not actually say it was cancer at that meeting, he just said there was a query and that I may have had cancer or the starting of cancer, pre-cancer, in 2011.
When I was in with him in September, I was not in a state of mind to take this any further for two reasons. First, I was cancer-free as far as I was aware. That changed two months later. Second, as a family my husband and I had a lot of medical issues to deal with for my daughter who has a congenital disorder. Last year, in 2017, she had two full tonic-clonic epileptic seizures in school, which came out of nowhere. It is a result of her congenital toxoplasmosis diagnosis, which led to a reactivation. Basically, she has a parasite living at the back of her eye. I was diagnosed when I was pregnant and she was treated for 12 months when she was a baby. We went through the early intervention programme.
She had a stroke effect on her left-hand side. We had awful problems with her. She is basically blind in one eye. She has 70% vision in the other eye but we thought we had dealt with it. We were very lucky that she was not brain damaged and that she was not blind. We were very happy that she was doing really well in school. All of a sudden this kicked off in 2016 but it is all because of puberty. She has hit puberty, she is nearly 13. We went back down the whole rollercoaster of medication for her. She was now on anti-epileptic medication as well as medication to treat her condition. She nearly lost her eyesight during the summer of 2017. We had to take her to Moorfields Eye Hospital in the United Kingdom. She had to have laser surgery.
I had enough going on at that stage without trying to get my head around knowing that I probably had cancer in 2011 so I did not take it further in September. When I found out in November I knew at that stage that I was going to have to do something but I waited until I knew what my treatment plan was. There is all this waiting with scans, going from MRI scans, to PET scans to treatment plans. When they told me it was terminal I was trying to get my head around it but I was not going to accept a terminal prognosis and went to research other options at that stage.
By the time I went to see the medical oncologist about options for the palliative chemotherapy I had insisted on a biopsy because I wanted to be 100% sure this was the same cancer I had, not a new cancer because the treatment would be different. On 19 January I was waiting to have my biopsy. Myself and my mother were sitting in a treatment room waiting for a bed, as you do with the HSE. We were there for about four hours. I was very bored. I had my file because it had been sent up with me from admissions. I started looking through it. I still had not made the decision about whether I was going to go further legally about this missed smear. As I was going through my file I noticed this letter from CervicalCheck and when I read it I could see the smear test date, 24 May 2011. This is the report that CervicalCheck sent back to my gynaecologist on the review of my smear from 2011. The original report stated no abnormality detected, NAD. The review was query squamous cell carcinoma.
At that stage alarm bells started ringing in my head because Mr. Hickey was very vague in September and just said that there was a query, that there may have been a question about me having cancer in 2011 but this was in black and white, quite clear, this is cancer. I then noticed at the end of the page that this was page 2 of two of this report. I work in administration so I notice these things even though it is tiny, page 2 of two. I was sitting there asking my mother "Jesus, where's page 1?". Mam said "Ah sure it's probably just a cover page." I said, "Well, yeah, but from who, to who and when was it dated?" because at that stage I started questioning when this was sent. When I thought back to the conversation with Mr. Hickey I assumed that the audit had been carried out just that year, in 2017. I took a photo of that and anything else in my file and straightaway started researching medical negligence solicitors. I contacted Cian O'Carroll on 30 January, I was in his office and that was the start of me taking my court case. We requested files then from CervicalCheck and that was the start of all this coming out.
I was not affected by the delay in being told that my cancer went back to 2011 and make no mistake about it, I had cancer in 2011 - it was not pre-cancer, it was cancer. The misdiagnosis in my case, and I know this is not the case for other women in this audit, has cost me my life. I have got terminal cancer. I do not believe I am going to die but at the end of the day I am going to have to fight to live for the rest of my life and go from one treatment option to another until I find something to cure me but I should not be in this position at all, if my cancer had been picked up on that smear where there were plenty of cancer cells, there is no question from the expert cytologist on my legal team. The person looking at my smear sample either was not competent or did not look at it at all because it was full of cancer. It is not that there was a small little bit of cancer on the slide, it was full of cancer. I could have been one of the women, like Irene, Stephen's wife, who was not given the chance to find out and was not given the chance to fight. Stephen is here on her behalf. At least I am still here to tell the tale. That is why I am fighting with everything in my being not only to live but to get to the bottom of this because it is a disgrace that we have been put in this position.
There are three issues, first, open disclosure, which did not happen in my case, too little too late. Mr. Hickey told me in September 2017 about this audit. When we got the correspondence back through disclosure we found out that this audit was carried out in October 2014 on my smear. I was diagnosed in July 2014. It took a full two years to decide to communicate this to clinicians so it was July 2016 before CervicalCheck communicated my particular case to my gynaecologist. Then there was 15 months of correspondence between the head of CervicalCheck and my gynaecologist about whose responsibility it was to tell me, 15 months of them deciding "You tell her", "No you tell her" before he finally told me in September 2017.
People will say it would not have made any difference at that stage because I already had cancer but I know the type of person I am, and Stephen will tell you the same about Irene, I would want to know that. They should have told me that. That is my information. I am the patient. It is my information that was hidden from me. I would probably have asked for more scans if I had known "Jesus hang on a minute here, I don't have cancer only since 2014, in fact it's going back a further three years." We know with cervical cancer the longer you have it the worse your prognosis. That would have made me be more on top of my gynaecologist and oncologist and look for more scans and maybe it would have been picked up a little sooner and I would not be in this position.
Patient safety is another issue. Why were serious errors highlighted by these audits not treated as patient safety incidents? In the briefing note sent to the Minister with regard to my case before it went to court, Jerome Coffey gave a written opinion to say that my mistake was not a patient safety issue. I would like to know does Jerome Coffey, who is the head of the National Cancer Control Programme, NCCP, still believe this to be the case now that there are 18 women dead and 209 women involved. If it is his view is he the appropriate person to be in charge?
The other question I have is who are the senior management team who approved this communication strategy which has come out? We have seen various iterations of it in the press over the past few days. Who approved this communications strategy and who decided it was okay not only not to tell the clinicians but not to tell the patients? Why was the HSE more worried about being sued by the labs, such as Quest, than communicating the information on incorrect or misread smears to patients? That fills the gap for us, to know that in the two years between my audit and the communication I received from my gynaecologist there was a full 12 months of wrangling between the HSE and one of these labs about disclosing information to clinicians never mind patients. Where is the open disclosure in this instance? Who stood over these contracts?
My questions are about open disclosure, patient safety and the labs. With regard to the labs, who stood over these contracts where patient safety and open disclosure were not considered to be important issues? When you think of the legal wrangling they were having with these labs where the labs were basically saying their contracts stipulated that the clinicians were not to be told because these were for educational purposes. The reason my case went to court and I had to give evidence, and it went on for four days, was that the lab was insisting on a confidentiality clause because this was agreed as part of its contract with the HSE. They are the two big issues I see with the labs. I want to know who stood over these contracts, if they were reading them. Patient safety and open disclosure were clearly not included if you read through their stipulations. How can anyone stand over that and give these people contracts?
I think that is it.
If there anything else I need to say, the big thing for me is patient safety. I am not interested in revenge. That is not what I am here for. I want to see accountability and I would like to see a legacy that this will never happen again to any woman, man or child in this country. This is not just an issue for women. This is affecting men and children who are without their wives and their mothers. I never want to see this happen again. If I do die, I do not want it to be in vain. I want to make sure that protocols put in place, that there are sanctions for people who make these mistakes and that they are held accountable. The HSE should be overhauled, and I mean overhauled from the ground up, so that people are held accountable and that this will never happen again in any shape or form.
