Stephen Donnelly (Wicklow, Fianna Fail) | Oireachtas source

I will see if I can talk for an hour and 45 minutes. At this point, I probably do not need to read into the record the rest of the sections, given that colleagues have the full intended speech which covers all of that. We will go through the Bill section by section on Report Stage, if that is okay with colleagues.

I would like to start with a few thank yous. I thank Senators for their contributions today. I also thank patient representatives. This obviously includes Vicky Phelan. Her legacy is broader than this Bill, but it is part of her legacy. As Senators have said, many other patient advocates have worked in the public sphere and more privately over the years to push for these kind of changes. Different patient groups have been involved, including the 221+ group. Without that advocacy I do not believe we would have the Bill we have before us today. We owe a debt of gratitude to patients and patient advocates, in particular. I have worked with quite a number in opposition and in office and they are fearless but are also dealing with very serious medical issues.

John Wall was referenced. John and I worked together closely to bring about an extension to the medical card scheme to make it available to people with a terminal diagnosis for up to two years. John had campaigned tirelessly and I was delighted to be able to introduce that. Not only was John dealing with that, but he was also dealing with the most serious prognosis himself. We owe a real debt of gratitude to the patient advocates who have, over many years, given so much of their time at a time when their health is compromised. I want to acknowledge that.

Senators referenced the Department of Health and the HSE. They come in for a certain amount of criticism, as do I and governments. A little over two and half years into my time in the Department of Health, it is my experience that it is populated by people who care passionately about health care and patients. Does the Department or any of us get it right all the time? We do not, but the overarching philosophy is better and better health care for patients and a strong public health service. The officials who worked on this Bill have put a huge effort into it.

It is also important to acknowledge the work of our healthcare professionals within the HSE. There was a lot of criticism of how certain things were done in response to CervicalCheck. I do not know if all of it was warranted, but a lot of it certainly was. I have had a lot of engagement with screening services and the people involved in CervicalCheck on the mandatory open disclosure parts of the Bill, including Dr. Colm Henry, the chief clinical officer. This is a group of healthcare professionals who dedicate their lives to making things better and better for patients and providing better and better healthcare. The Bill constitutes a significant shift in the culture of our healthcare services, and is one that the clinical leadership has embraced and championed. I want to acknowledge that.

For me, it was important that we arrived here with as much cross-party support as we could get. We worked hard through Committee and Report Stages in the Dáil. There is an openness here. Given the context of the Bill, it is important that a unified message goes out from the Oireachtas that Dáil Éireann and Seanad Éireann stand behind this important change to our health service. I want to thank colleagues for that.

The Bill applies to a much wider context than cancer screening and cervical cancer services. It applies across the health service, including public and private services.However, the genesis of it was what happened in the cervical cancer services and the response from patients, patient groups and the Oireachtas. When we talk about cervical screening and cervical cancer services, it is important to say that this is one important part of a much broader response. Since the cervical screening issue arose, HPV screening has been brought in. It is significantly more accurate than what was being used before. It is going to save yet more lives and is an important addition. We have HPV vaccines. Our colleagues will be aware that we recently launched the Laura Brennan HPV catch-up programme, which is for boys and girls in school who missed the initial offer of a vaccine, and women up to the age of 25. That is in place. A new laboratory in the Coombe hospital is scaling up and has started processing CervicalCheck screening samples. As it scales up its workforce, it will do more and more of that. This state-of-the-art facility is another important step forward.

In regard to informing patients after screening, this is a broad Bill dealing with nursing homes, private healthcare and mandatory open disclosure. For obvious reasons, there has been a great deal of focus on the patient-requested reviews, the clinical audits and the provisions on cancer screening. I will speak specifically to this. The 221+ group wrote to me on the morning we were scheduled to proceed with Report Stage in the Dáil. I was not sure whether we would proceed with Report Stage until I got that letter. The group wanted it to be clear and on the record that the obligation is on the health service provider to inform patients of their right to a patient-requested review. It happens during screening, as it should and patients should know ahead of time. However, we have amended the legislation to provide that patients will essentially get a reminder and that will be a mandatory reminder. My objective and that of the 221+ group is that this will occur after a diagnosis. Exactly when and how is being designed with patient bodies, including the 221+ group. That is being designed in a way that works for patients. Critically, it is intended that the reminder will be sent after a cancer diagnosis, which is when it is probably most important. The process for the design of this ongoing patient-requested review and the detail will be done in collaboration with patient groups. I am writing to the HSE to that effect.

Senator Gallagher sought clarification on various questions. I will run through them now. Will the patient-requested review by done an independent group? Yes. Clinicians will not review their own work. When will patients be reminded of a right to a review? I have just addressed that. The schedule of incidents is not the intended full schedule. Those are the incidents that no Minister for Health can decide to change. The actual schedule will be much broader and will be introduced through regulation in order to keep pace with changes in healthcare, essentially. This means a Minister can add, take away or adjust various incidents as appropriate but does not have the discretion to take from the schedule in the Bill. That would require legislative change. Would apologies through this process of mandatory disclosure be used in litigation? No. This is what we see throughout the world. It is considered best international practice because while everything we are doing starts and finishes with the patient, as it must, we also have to provide a space for clinicians in which they can safely engage and speak with their patients.We talk about a duty of candour. It is important that clinicians can engage with their patients and speak with them openly, without fear of litigation and having to watch what they say. We do not want a situation where a clinician, in good faith, gives a full account of what has happened, and perhaps apologises for that, only for a lawyer then to say “Aha, gotcha, I will use that in court to sue you.” The best international practice in everything starts and ends with the patient but we must create a safe environment for clinicians as well to be open.

As colleagues will be aware, clinicians have become more and more concerned with the increase in medical litigation. We have seen a significant increase in the amounts of money being paid out. Dedicated clinicians are telling me that they are now practising defensive medicine. They do want to do so, but there is now a tangible fear of litigation. It has crept more and more into our healthcare service. We are looking at that and at non-litigious ways of patients being able to be recompensed and so forth. That is the philosophy there. We also have an obligation to clinicians to create a space where they can speak freely.

Would the Bill cover the situation as it pertained to Vicky Phelan and, indeed, to many other women involved in CervicalCheck? The answer is “Yes”. What will happen under this Bill, which would never have previously happened, is whenever there is a diagnosis, the patient will be told they have a right to a review and it will be done in a way that is designed to work for the patient. A patient at that stage may say that they do not want a review. They may say that perhaps they want one in a year or five years but at that moment they need to deal with their health and the cancer diagnosis. The information we have from the HSE is that about half, perhaps 40% to 50%, of patients in the UK say they do not want to know. A patient can change their mind. They can come back to it after a month, a year or three years if they want.

The next question is whether you tell them anyway. Do you have non-anonymised audits? The clear expert advice we have on the clinical audits is to keep them anonymised for this. There are audits done all over the healthcare system all the time, in trauma, cancer services and many other services. All of those reviews are published, which is very important. However, they are anonymised. The advice we have is that in order to have the best learnings and, therefore, the best clinical outcomes for patients, audits have to be anonymised. Some people talked about semi-anonymised audits. However, the advice we got back is that there is no such thing. You can either identify the patient or you cannot. It is quite binary.

The next question arises. If a patient clearly says at that point that they do not want to know, even if you did the non-anonymised audits - which we should not do, but even if we decided to do that - should you then ignore the patient’s wishes and tell them anyway? First of all, you will not know because the audits are anonymised. Certainly, in the meetings I had with patient groups, they were very clear. They said, “If I tell you, as my health service provider, that I do not want to know at this time, then do not go and check, come back and tell me.” We have to respect the patient and what the patient wants. That is why they can come back at any time if they are in space where they want to know and want a patient-requested review.

Essentially, this part of the Bill has two objectives. The first objective is full empowerment and choice for the patient. That is what the patient-requested review will be. I am advised that we will be one of the only countries in the world that does anything like this. The second objective is the best clinical outcomes for patients, which is the programmatic, large-scale audits. That is exactly what we are trying to do here – what is best for patient empowerment, patient transparency and also patient outcomes. Hence, the anonymised programmatic clinical audits and patient-requested reviews.

I think that covers the various issues. Senator Dolan asked who will do the review at the end of two years. That will be up to the Minister, a bit like the termination of pregnancy reviews. For those, I set the terms of reference - do it in a collegiate manner, obviously, if you have any sense - appoint a chair, generally appoint a secretariat and then let them get on with that. Senator Dolan and others mentioned that tomorrow is International Women's Day. In that regard, this is a timely session for a debate on the Bill. It is also Women's Health Week in Ireland, and a lot of important progress is being made. Yesterday, I visited Tallaght University Hospital, where a new specialist endometriosis service is in place. It is part of a new national model of care for endometriosis that has been rolled out over the past 12 months or so. One in ten women will become symptomatic with endometriosis, and until recently, there was next to no care for them. Staff at the hospital told me yesterday that of the women who present to their GP with symptoms of endometriosis as needing care, up to now half of them present ten times to their GP but get no referral. We are working, therefore, with GPs and the Irish College of General Practitioners, ICGP, to put in place training and quick reference guides, just as we did for the menopause. There will also be the five regional hubs for secondary care and the two national hubs, in Dublin and Cork, for specialised care. The Bill is clearly an important part of that.

We will launch something on gestational diabetes later this week. It was a key ask of the Women's Health Group and the Diabetes Society of Ireland that pregnant women would have the availability of retinol scanning for gestational diabetes, and that is something we are putting in place as well. Later this week, we will move on with another phase in the communications and awareness campaigns regarding menopause. A lot is going on and that is one of the positives. It has been supported broadly across the political parties and among Independents. The feedback I received yesterday in Tallaght from the healthcare providers, who were dealing with both endometriosis and the see-and-treat gynaecology clinics, suggested it is having a tangible impact on women's physical and mental healthcare services, waiting lists and so forth. It has been good to see. I thank colleagues for referring to it.

As I said on Report Stage in the Dáil, we are on a journey and the Bill is part of that journey. During its passage through the Houses, there has been robust but important debate, and I echo the remarks about the Senators' Labour Party colleague, Deputy Kelly, who has played an important part in that. He clearly cares passionately about the Bill and is close to those involved. Ours was a useful collaboration.

Today is an important step but it is only one step in getting us where we want to be. Ultimately, the goal is universal healthcare. Test number one will be driving down costs for patients. This morning, I got agreement from the Government to bring a Bill to both Houses in the coming weeks that will abolish adult inpatient hospital charges, which is another important step.

The second test will relate to access. I brought the waiting list action plan for this year to Cabinet earlier today. Good progress is being made. We are all signed up to the Sláintecare targets, essentially that no patient will wait more than ten or 12 weeks for care. Last year, we saw an 11% reduction in the number of people waiting longer than those targets. That equates to approximately 56,000 men, women and children. We have seen a 24% reduction since the peak of Covid, so there has been a large reduction in the number of patients waiting for longer than the ten- and 12-week targets we have set, and our intention for this year is to push that further. Access is far from perfect but it is getting better and we are moving in the right direction.

Critically, the third test will be a great healthcare service, and there are two aspects to that. The one most of us focus on is clinical outcomes, but the second is patient experience, which gets less attention. Typically, modern health services are pretty good at patient outcomes and at applying medicine and science. They are not always as good at the patient experience bit and at recognising that this too is important.That is what this Bill is mainly about. The clinical audit aspect of it is about better patient outcomes but this Bill is focused on the patients in our health service. It is focused on making sure they are listened to and on making sure they are dealt with in an open and transparent way. Inevitably, unfortunately and with the best will in the world, sometimes things go wrong but the Bill seeks to ensure that in those instances there is a mandatory obligation that patients are told about that and that they are told in an appropriate way. The Bill involves one of the elements of universal healthcare that gets less attention, namely, patient experience during our time within our healthcare services. On that, I thank colleagues again for their support and comments.