Matt Carthy (Cavan-Monaghan, Sinn Fein) | Oireachtas source

I am incredibly disappointed that we are at this point. We have a Bill that should be unifying legislation. We support it in principle. Amendments have been tabled that, in and of themselves, are worthy of support. The difficulty is not so much what is in the Bill but what is glaringly missing, particularly the absence of a statutory duty of candour, from the Bill. Before this debate, I read some sections of Vicky Phelan's book, "Overcoming". I will read a short section of that which is from the period when this first came to the corridors of this House, when Vicky Phelan presented at the Committee of Public Accounts. It reads:

A short time later we found ourselves sitting in front of a row of politicians at the Public Accounts Committee. Me, Stephen and my solicitor Cian.

I was invited to speak first. I cleared my throat. 'If I do die, I want it not to be in vain. I want protocols to be put in place and sanctions for people who make mistakes and that the HSE is overhauled from the ground up, so that people are held accountable and that this will never happen again,' I said.

I told them my story, from the beginning, and everything that had happened over the course of the past year. 'The misdiagnosis in my case has cost me my life. I've got terminal cancer,' I said. I took a deep breath. 'I don't believe I'm going to die but I have to fight for my life every day.'

I outlined three issues that needed to be addressed: open disclosure (how could it be left up to individual doctors to decide whether or not to communicate information to their patients?), patient safety (we needed to rebuild trust in the system, to ensure this would never happen again) and responsibility of senior HSE management who approved the communication strategy regarding the audit results and whether patients were to be told about them (who was ultimately responsible for what had happened?).

'At least I'm still here to tell the tale and that's why I'm fighting with everything in my being ... I swear to God, over my dead body I'm going to keep at this. Simple as that.'

Cian O'Carroll, my solicitor, spoke of the 'coordinated, premeditated plan to deny patients the information'. 'Not in total,' he added. 'The documentation suggests that it was envisaged that some patients would be told of the audit, albeit quite late in the day.'

Those are the words of Vicky Phelan. They are the first challenge that she brought to this House, when she first presented at the Committee of Public Accounts. We have all spoken of our admiration. I do not believe that people of different political parties have any more or less admiration for what Vicky Phelan did in refusing to sign a non-disclosure agreement despite the strong pressure put on her to settle her case. The fact that she refused to do that is commendable. It is still a scandal that there has never been accountability for anybody who tried to force her to sign that non-disclosure agreement in the first place.

She set out, time and time again, what needs to happen, which is clear. In the cases of those people who are the victims of mistakes or whatever else might have happened, the clinician or service provider must be obliged to inform the patient of where an error, mistake or inaccuracy is discovered. It is as simple as that. We have listened to those people who are directly affected by these scandals and hear from them that the amendments the Minister has tabled do not resolve their concerns. He is continuing to tell everybody else they are wrong in their interpretation. It points to a fundamental problem that we have with accountability, transparency and appropriate communications with the people who are at the coalface of mistakes made by the HSE and the health services.

I appeal to the Minister to listen to what is being asked of him. Do not listen to us, since we are only politicians reciting what people have said to us. I ask the Minister to listen to them directly and to please make the necessary provisions so that we can have a Bill we can say, with hand on heart, will actually make a difference. It would have made a difference if it had been in place at the time when Vicky Phelan and others were so badly let down by the State. I make that appeal to the Minister once again because the rights of patients have to be paramount. Of course we understand that there has to be a layer of protection for the services, but there must be also a layer of protection for patients when they are failed. Otherwise, as history has shown us, when one allows a culture to exist which has no accountability for failures, they will continue to repeat themselves.

Before I came into the Chamber this evening, I met some parents who were affected by the organ retention scandal. Daily and weekly, we meet with families and individuals who have been badly let down by our health services. In some cases, it involved simple mistakes, gross errors in others, and extreme gross negligence in others. In all cases, it is hard to pinpoint where anybody is held accountable or where the necessary changes have been made without resistance from the powers that be. I ask the Minister to change that and to write a new chapter tonight by working with the Opposition to ensure we have a Bill we can all be proud of, that this House can be proud of, so that we can collectively say to Vicky Phelan and all those other brave women who told their stories that we heard them, listened, and acted accordingly. Nothing less will be sufficient.

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