Denis Naughten (Roscommon-Galway, Independent) | Oireachtas source

On 18 January 2016, to the shock of many people, myself included, the then Minister for Health and current Taoiseach, Deputy Varadkar, issued a statement to the effect that it would be counterproductive to enshrine open disclosure to patients in legislation. This was the position of the then Minister and of the Department of Health. It represented a major U-turn on the policy that had been pursued up to that point by the then Minister and his predecessor, Senator James Reilly. On 27 January 2016, in response to that announcement, I dusted off a Bill I had been working on and introduced it in the Chamber on First Stage as the Health Disclosure Bill 2016. The aim of the Bill was to provide for mandatory reporting of patient safety incidents. The introduction of legislation in this area was one of my key demands during the negotiations on a programme for Government later in 2016. Forty-four months later, after a lot of persistence, the Minister, Deputy Harris, has brought the Patient Safety (Notifiable Patient Safety Incidents) Bill 2019 before the House. In fairness to the Minister, I must acknowledge his support.

I put it to those who have often criticised the usefulness of new politics, and indeed the usefulness of the participation of Independent Deputies in government, that this legislation is one of many examples of the real difference that many of us have made over the last four years. This legislation will make a real and fundamental difference to the delivery of our health service and the impact of that service on patients. Open disclosure will be embedded in legislation and will become the bedrock of patient safety. I was determined to change this law because, in my dealings with my constituents, I had come across many cases of people being treated appallingly by the health profession. In the four years since I proposed the Health Disclosure Bill 2016, the cervical cancer scandal has reinforced the fundamental need for laws of this nature.

When I was introducing the Bill in question in January 2016, I referred to a recent - at that stage - "survey of doctors conducted by the Medical Council [which] showed that only half would report instances of significantly impaired or incompetent colleagues". I suggested that this was "a damning indictment of the profession and of the culture" that existed in the profession at the time. I continued:

Where there has been irreversible health damage, we need to admit mistakes. We need to outline what we can do to alleviate or rectify the problem and to ensure that if compensation is required, this compensation is paid over without this policy of defence and denial, which exists within our medical profession at the moment.

Sadly, we have seen a reflection of that policy in the cervical cancer scandal. Dr. Gabriel Scally has described the culture within the medical profession. The failure to tell patients the whole truth in a timely manner can be attributed, at least in part, to an attitude of "doctor knows best". During the cervical cancer scandal, there were disgusting attempts to play down the seriousness of the debacle that was unfolding. All of this can be attributed to the culture that existed within the medical profession.

Neither medicine nor midwifery is an exact science. Sometimes the professional judgment of a doctor or a midwife is wrong. This does not mean a person is a bad doctor or a bad midwife. It means that he or she called it wrong. The nature of medicine means that it involves judgment calls. When a mistake is made, it does not necessarily mean that there is negligence. I remind the House that every three minutes, a patient is injured in our health service. This equates to 438 patients a day. A small fraction of these incidents - approximately 60 - end up with a complaint to the HSE and far fewer end up in litigation.

This legislation will radically change the culture within our health service. It is about doctors telling patients that there has been an unexpected outcome and explaining the reasons for that outcome. I know from my dealings with families and patients that it is important for them not just that the mistake is admitted, that an apology is made for it and that measures are put in place to rectify it, but also that they are told what steps will be taken to make sure no one else goes through a similar experience and the mistake is not repeated.

Section 18 of the Bill before the House sets out the structure within which notifiable incident disclosure meetings will be performed. I suggest it is imperative that every patient will have an opportunity to bring a third party with him or her. This needs to be written into the legislation. It is not provided for in the Bill as it stands, but it must be provided for. Section 18 provides that the health services provider will set out the relevant information in a manner that it "considers appropriate". The person or patient may not have the understanding to appreciate the significance of what is being said to him or her. It should be possible for such a person to have someone else with him or her. It is imperative that this is enshrined in law.

I would like to mention something that will be important during the enactment of this legislation, which I warmly welcome. I welcome the broad thrust of it and the detail of it. This Bill is very similar to the legislation I outlined in 2016. I fully support it. I would like the change I have mentioned to be made on Committee Stage. That is one side of it. The other side is the follow-through. We will apologise to patients. We will tell them what has gone wrong. We will tell them what we intend to do to ensure this does not happen again. We will report it to the authorities. However, what will we do to rectify the situation?

I will give the Minister an example that pertains to the Department of Health. He is well aware of this situation. In fairness to the HSE, when a mistake was brought to its attention, it held up its hands and issued an apology to the families of 49 children who were misdiagnosed by the audiology service in counties Roscommon and Mayo. Credit is due to the health service, the Minister and the HSE for contacting those involved to apologise to them. The difficulty is that the system has fallen down with the follow-through on that. That is the next issue that will need to be addressed. In fairness to the HSE, it has now put in place all the health support services that the families of these children have sought. However, the ongoing battle faced by the families as they deal with the Department of Education and Skills on this matter is horrendous. The Department is not providing anything in addition to what is provided to every other child. It is not prepared to make a special case for these 49 children.

I would like to elaborate on the frustrating thing about all of this. Not one of the parents with whom I have been dealing wants to submit a claim. The parents just want the cases of their sons and daughters to be rectified. I have advised them to go through the State Claims Agency because the system we have at the moment sadly means that this is the only way they will be able to move these cases along. For the life of me, I cannot understand why we cannot put a small amount of money aside to provide the intensive support needed by these 49 children now. The State Claims Agency approach that is being pursued instead involves not admitting anything and getting others to prove their case in court. The families in counties Roscommon and Mayo will prove their case in court.

When these children are aged 17 and 18 years, they will receive substantial funds and compensation because of what has been done to them, but that is not much good to them if they cannot function in society. Does it not make much more sense to put a small amount of money aside now and provide the intensive support to those children so that they can fully function in our society in coming years rather than waiting until the end of a long and protracted legal process?

The Minister will know that must raise the matter of no-fault compensation schemes. It has been ongoing, like medical disclosure, for a long time. It is another commitment that is enshrined in the Programme for a Partnership Government. Deputy Harty has already raised it specifically in relation to vaccinations. There is a culture of denial in this country that vaccines in a very small number of cases will cause a severe adverse reaction, yet the State is not yet prepared to acknowledge and accept that even though every other member state in the European Union has such a compensation scheme in place, while we do not. We are forcing those families to go through the legal process to prove beyond reasonable doubt that their child has been damaged by the administration of a particular vaccine. This failure and gross negligence on the State's part in this area is undermining the credibility of our vaccination programme. We are not prepared to admit that there will, in a very small number of cases, be a severe adverse reaction to the administration of a foreign body into a child. By admitting that we can at least move forward and explain to parents that there is a small risk but that there is a far greater risk if they do not vaccinate their child. It is very hard to make that argument when the State continues to bury its head in the sand, as does the medical profession, and they claim that it is 100% safe. No foreign body injected into any human being is 100% safe. It cannot be. Just like the issue before us, it is not that doctors are negligent, it is that adverse reactions happen for one reason or another with the very best medical professionals in the world. Let us accept that it happens and move forward from there. We are doing it with doctors here now, but not with vaccines and that has to change. The matter is exposed by this Bill.

I acknowledge a significant inclusion in this legislation. Private hospitals now come under the remit of HIQA. This was a gaping hole in the regulatory regime here. Sadly, there were incidents in the past relating to private hospitals. Their inclusion in this legislation is very warmly welcomed insofar as it goes. It is very comprehensive. The one weakness that I want to see changed in it is that relating to a patient advocate.

I reiterate that we must introduce a no-fault compensation scheme for the administration of vaccines and end the situation where the families of children affected are forced to go through the courts. The State has admitted liability in the past. Dr. Michael Woods in 1982 offered £10,000 to 16 families where, on the law of probability, someone was damaged by the three in one vaccine. We were able to do it in 1982 but since then we have brushed it under the carpet and denied it ever happened. That must change.

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