Stephen Donnelly (Wicklow, Fianna Fail) | Oireachtas source

Following the debate we had before Christmas, we essentially have three more pieces we are introducing again this evening. The first is mandatory informing of patients of their rights to a patient-requested review before or during screening. The second is mandatory informing of the right to a patient-requested review after screening and that the process needs to be put in place for that, which is contained within the wording. The third then is mandatory provision of information on the process online. Those are the three additional pieces we are seeking to add.

This has been the subject of much discussion. I thank the 221+ group for its engagement and support. Its intent, and that of mine and colleagues, is that the reminder, if you like, would happen at an appropriate time after diagnosis. We could not put it in exactly like that for drafting reasons but I want to be very clear that that is the intent. That is exactly what the Department, patient representative groups and HSE will be designing. I will be writing formally to the HSE stating that is my wish and the wish of the Oireachtas. That is how it will work. Appropriate information that has been designed with patient groups will be provided to inform before or during the screening and then at a reasonable time after diagnosis. We will leave the detail of that to the patient groups, the Department and the HSE to work out. For example, various patient representatives I met who have been through this said they would not have wanted to know during the same meeting in which they got the diagnosis, and that they might have wanted to know one week, one month or six months later. We will leave that to the team in place to decide what is most appropriate and then we can review it. It probably will not be all right the first time around so we will review it. I acknowledge that is what we are going to do. Something that was invoked very reasonably in this Chamber previously was whether this would then pass the Vicky test. Certainly, the letter I received from the 221+ group today suggests that in its view, this combination does pass the test.

Deputy Shortall raised points about complaints and I agree. This opt-out or subclause in the 2004 Act, which the Deputy has in as amendment no. 20, is in a different grouping. I agree; we can come to it later but this is not what this Act is for. There is a separate process going on to look at exactly those kinds of issues, however. It is quite an extraordinary clause whereby a person can make a complaint but not one related to a clinical issue. I agree with the intent, but we will solve it in different way.

I appreciate I am way over time but I will speak now to the main points of this because we did not quite get to them the last time. The new piece we are bringing in this evening includes three subclauses. The amendment provides that the health service provider shall inform the patient of his or her right to a Part 5 review before or at the time of screening. The new patient-requested review has been developed following guidelines, obviously, from the expert review group, ERG, and designed in consultation with the patient groups, including the 221+ group.

It will be mandatory to fully disclose the results of the reviews to patients. It is worth noting that we are doing well on this in Ireland. Very few countries have patient-requested reviews, with only a small subsection of them having mandatory disclosure of those reviews. Very few countries in the world have this combination of patient-requested review and mandatory disclosure thereof.

Before patients participate in the screening programme and have their test, they will be fully informed by the health service provider that reviews are available. The new amendment puts the obligation to inform a patient of his or her right to a review on a statutory basis for the health service provider. On Part 5, we never discussed the patient-requested review the last time, so I will briefly go through this before stopping. I thank the Acting Chair, Deputy Funchion, for her indulgence.

I have set out details of the amendment to the new section 36. I will return to amendment No. 19. I flagged on Committee Stage that I would introduce the amendment on Report Stage to ensure that open disclosure applies to completed patient-requested reviews. The approach is based on the expert reference group report into interval cancers. It was deemed appropriate to follow the group's recommendations regarding individual patient-requested reviews. The amendment we discussed in the debate on 7 December is quite a lengthy document, comprising 21 sections. It is necessary to provide full provision for mandatory open disclosure for patient-requested reviews for cancer screening similar to the provisions already in the Bill for mandatory open disclosure of notifiable incidences. The amendment ensures that open disclosure applies to completed patient-requested reviews of cancer screening.

I am now proposing that a patient-requested review of the patient's cancer screening will be provided for in a new Part 5 of the patient safety Bill. Essentially, this is to differentiate a look-back review from being a patient safety incident in and of itself, which it is not. It is separate from a patient safety incident. The review itself is not an incident and so we have separated it into its own Part in the Bill. This will ensure the current provision for open disclosure of a notifiable incident will be replicated in the new Part. All reviews will have to be disclosed regardless of whether there is a discordance.

The amendment proposed provides for the insertion of a new Part 5 in the patient safety Bill 2019 for the purpose of providing for open disclosure of completed patient-requested reviews of HSE cancer screening services. Such a review will be defined in the body of the Bill and will involve similar statutory requirements to those prescribed for a patient safety incident.

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