Good Morning, my name is Lorraine Walsh, originally from Mayo and living in Galway, I’m married to Gary. I am speaking here this morning in a personal capacity, however, I am always and ever speaking on the behalf of the other 220 families tied up in this situation, when I have an opportunity.
I would like to thank the RCPI for the opportunity to participate in this important event.
So how did I end up here?
In order to give you a context I should probably start back in 2011. I had received an invitation to have a free smear done as part of the Cervical Check programme, I attended my GP in June 2011 for a test, in August I was informed by my GP that the result had come back as low grade pre-cancer cells and that the majority of these revert to normal and that I should not concern myself but that I should come back in 6 months for a repeat smear.
I returned, as is normal practice, the following year for the follow up smear. My GP called me in April 2012 to say that my smear results had come back and that I required a colposcopy. He explained that I had high grade pre-cancer cells and that I would certainly expect to require a Lletz procedure. In May I attended the Colposcopy Clinic and had a Lletz procedure and was given all the relevant information about what to expect and that I would be called back in 6 months for a follow up colposcopy. I went back to work the following day and genuinely thought no more about it, until I got a call in June to ask me to come back for a consultation as the biopsy results had come back and things had progressed.
I still remember the call as clear as if it were today, my heart sank and I just thought ok, don’t blow this out of proportion but I knew there was something amiss. The following Monday I was diagnosed with Cervical Cancer at 34 years of age. I was devastated. I was referred for treatment to the Mater Hospital in Dublin. I had an extremely positive experience there from start to finish. The Consultants and Oncology Nurse Specialists were incredible and made what was a difficult time so much easier. Their kindness, care and expertise was exceptional.
They knew I desperately wanted to have a family and they certainly did their very best to preserve my fertility, I went on to have a cone biopsy and lymph node dissection but didn’t get clear margins so unfortunately I had to subsequently have a radical abdominal trachelectomy, which thankfully resulted in clear margins. The team went above and beyond and I was treated so well. This critical relationship was built on trust, trust of literally handing over my sick body to them and they in turn handing it back healed and fixed. They have become and will always be heroes in my eyes.
So, I was cancer free and most importantly for me, there was still hope, hope of Gary and I having the family we yearned for. Hope can never be underestimated, as it gave us the opportunity to move to the next step which was IVF. I perhaps naively thought that it would be the answer to my prayers and that after all of the fertility preserving efforts that we would have a baby? That did not happen……….. the IVF failed, my ovarian reserve went through the floor and I was advised that chances of success were slim to none. The hope faded and reality hit home. I fell apart and plunged into what I can only describe as a grief filled tunnel that was very hard to escape from, The heartache nearly broke me mentally, I spent many months crying and I was inconsolable, something I struggled with privately as I was too ashamed to show my family and friends that the strong woman I had grown into had literally fallen apart. It was a difficult time.
But what can you do, either you give up on life or you pick yourself up and start again, and thankfully I managed to do just that. I began to come to terms with my loss and altered my expectations of what life had become. Beating cancer physically involved a lot of pain and suffering but was a lot easier than beating cancer mentally. The mental scars and demons are a lot harder to figure out. Cancer for me meant the end of our opportunity to become parents and it was heart-breaking. But as they say time is a great healer and I comforted myself with thoughts of fate and destiny deciding our future and it was a life without children. I have always consoled myself that I have to be thankful that I do have my life. So eventually the dark times subsided and I picked myself up and moved on with my life.
So back to, why am I here?
On 30th April 2018, I got a call to ask me to return to the colposcopy clinic as there had been an audit carried out on my smears prior to diagnosis. What did this mean, I was confused, and of course the media didn’t help with conflicting stories in the press, but accurate or inaccurate it was the only place we were getting information.
I attended Cervical Check Clinic and I was told that the screening cytology prior to my diagnosis was read inaccurately. It had been reported at the time as low grade CIN1 pre cancer cells, but following the review it was reported as high grade CIN3 pre cancer cells. Immediately after this disclosure, followed some explanations about screening and its limitations. Truthfully my mind was blown; I had not heard about these limitations or false positives or false negatives before. I wanted to know the bottom line, what detail did the audit find and did it fall within the limitations of screening or was there negligence involved?
Of course lots of questions ensued from my husband and I, but the limited amount of information supplied as part of the audit was difficult, as it told us very little. This was also difficult for the consultants who were delivering limited information that was inadequate to say the least in trying to explain a delicate situation to women and families that had already suffered greatly through their cervical cancer journey. What did this disclosure meeting tell me, well very little? There was a misreading of my slide prior to diagnosis and they could not tell me if it was negligence or if it fell within limitations of screening. That as you can understand was difficult for me – I just wanted the facts, nothing more or nothing less.
From a patient perspective, for my husband and I, we did not ask for this. We were invited to be told that there was an error in the reading of the smear slide that was taken the year before I was diagnosed and subsequently told that if it was read accurately that it could have had a major impact on my treatment thus avoiding some of the surgery which could have enabled us to have the family we so desperately wanted. This was shocking life changing news for both of us – and yet we were not being told the full facts?
Of course the other disturbing matter that came to light that day was the fact that the information in my own case had been sent to the colposcopy clinic in August 2016 and just put on my file. This information was remarkably not shared and not disclosed to me. It was then explained to me that this information would not have made any clinical difference to my current situation, but it certainly made a difference as to how I was treated and communicated with in getting to that point.
The “what ifs” have crept into my mind since, would it have made a difference to me, would earlier intervention have allowed me to keep some or all of my cervix, thus making my fertility journey a little more straight forward, I will never know.
The other train of thought is, would I have been better off not knowing this information and just continued on with my life? The answer is absolutely, I would have avoided a lot of heartache and upset if I hadn’t learned of this information, but who has the right to withhold information about my life and my body from me? Nobody. Had this CervicalCheck information not emerged in public view, would we be still sending slides to labs that are not accredited and outsourcing to other labs resulting in more slides being misread? This is not just a question for me and others tied up in this debacle, but for all women and wider Irish society.
There are two major aspects to the current debacle that have affected patients both physically and mentally, one being negligence on the part of the labs and the other being non-disclosure of the audit results.
Obviously the major part of any compensation that may result in these cases will be the negligence and the non-disclosure would be less significant. Less significant from a physical point of view of course, but is it less significant from a mental and emotional point of view?
Let me put this scenario to you. Imagine being diagnosed with a life threatening illness, such as cancer, and being told by a doctor that you could potentially die, but that the doctor would do everything in his/her power to make you better. You subsequently get the appropriate treatment and you recover from the cancer. You are ecstatic and forever indebted to the doctor for saving you and giving you your life back. He or she becomes your real life hero! You continue to revisit them for check ups every 3 months and then as the years go by the check ups move to six months and then every year. Every appointment you approach with optimistic caution, am I ok? Is the cancer back? You are relieved that each time that your hero tells you, “no you are fine and cancer free”.
Now just imagine this person calling you back out of sequence of appointments to say, actually I have some news for you, your slides prior to your cancer diagnosis seem to have been misread and this might have meant if they were read correctly that you could have avoided cancer or been diagnosed at an earlier stage. Then he or she goes on to say, that this could have saved you some of the pain and suffering and maybe some of the life changing conditions caused by the treatment that you received, or in some cases for the widowers being informed that earlier intervention could have saved their wives lives. Its gut wrenching news to receive!
On top of that they also tell you that they had this information for a significant amount of time and decided not to share it with you! Now imagine having to return to this person each year to ask them, am I ok, is the cancer back? Are you sure, is there information there you are not telling me, do I know you are telling me everything, the trust has been eroded. How can that trust be rebuilt? I am certainly open to your views and suggestions on this? This is major communications and trust issue, and surely patients are not just about appointments. The doctor patient relationship is so important for all of us – and nothing should ever knowingly happen or be allowed to happen that undermines that relationship.
There are lots of questions and answers still outstanding, we all know that. I accepted a role as patient representative on the CervicalCheck Steering Committee appointed by the Minister for Health for one reason and one reason only. I can’t change the past, I am where I am and I must accept that. I accepted my role to try to help change the future, so that we learn from the errors of the past and move forward to create a better system to serve the women and men of Ireland.
I am not here to point fingers or lay blame, but we must all learn from this and I believe we must all be responsible in taking a proactive approach to situations. It is vitally important to have direction and purpose, without this we lack focus and clarity, a problem that many clinicians were faced with when given the audit results. They were supplied with limited information on the audits and the audit results and forced under duress to disclose this information. Subsequently these disclosure meetings in some cases resulted in poor communication. The clinicians didn’t have the detail that I would assume each patient was looking for, following by questions like, was it negligence in my case or is this a case of the limitations of screening?
The clinicians didn’t know and they had to deliver the ‘don’t know news’ to people who were ill, in shock and vulnerable. And we are now in a situation that we still don’t know the full facts of this debacle. Frustrating I am sure for the Clinicians and heart wrenching and confusing for the patients and families. There are no winners here. I believe it is important for bodies such as the RCPI to support clinicians and give more guidance on policy issues such as Open Disclosure, to push back and demand policy and demand clarity and direction. It doesn’t matter what walk of life you are in, nobody has all the answers, but it’s important to ask the questions and demand the answers for you and for your patients.
I have no doubt in my mind that I would probably not be alive today without the Cervical Check Screening programme and the wonderful clinicians that gave me back my life -but of course I now wonder had my smear been read accurately, would I be at home with my children around me today, or would women like Irene Teap, Emma Mhic Mhatuna and others be alive to see their children grow up.
Some of you will be aware that the 50th Recommendation in Dr Gabriel Scally’s Report suggested that, “The Department of Health should encourage and facilitate a meeting involving the presidents of the Medical Council, the Royal Colleges and their faculties, leaders of other leading medical organisations and representatives of the women and families involved with the cervical screening problems”. On that issue, we at 221+ have now requested that we take ownership of this recommendation. We will be writing to all of the suggested parties with an invitation to come together with appropriate mediation to build these relationships with an ultimate aim of creating a better future for patients and their clinicians.
So finally I want to say that we can’t change the past, but we can be part of changing the future. We can hopefully do this together. In the words of Socrates “The secret of change is to focus all of your energy, not on fighting the old, but on building the new”