Jillian van Turnhout (Independent) | Oireachtas source

I thank the Chairman and that issue probably motivates me in this regard because the issues of end-of-life care and independent advocacy are my entry point into this issue and are why I wished to be present today. During the end-of-life hearings, members discussed these issues and I came up with three Cs about consent, choice and control. One issue I do not believe has arisen today is that while one talks about independent advocacy, individuals often do not know what choices they have and are rarely given that list of choices. It is felt that, somehow telepathically, they will know for what they must ask or what they need. There must be greater exploration of how this can be ensured. There has been good work, such as that raised by Mr. Mervyn Taylor in respect of the Think Ahead resource and advance planning, part of which is to help people to equip themselves with knowledge regarding the language, because it is very different. However, there must be discussion on ensuring the individual is aware of what he or she can ask for, rather than thinking after the event that perhaps he or she should have asked for it.

In addition, as a children's rights advocate, I often talk about the best interests of the child and the need always to act in the child's best interests. However, in this area, one must discuss best interests versus preference and sometimes, preference must win. This is what must be and an issue that must be discussed is how does one ensure this is balanced in order that one does not always act in the medical best interests of an individual if so doing actually neglects the strong preference the individual may have. At the heart of this issue is the question of how to ensure a proactive, timely and appropriate response before even getting to a complaints mechanism. It is a question of how to ensure, within each setting, that the response is there.

The issue of statutory powers has arisen and I believe Mr. Paddy Connolly mentioned the personal advocacy service. That was established under the Citizens Information Act 2007 butt has not been commenced. A question I have, in particular for the National Advocacy Service for People with Disabilities, is whether it is prevented from accessing people or from acting on their behalf because of the lack of statutory powers for advocacy. This is an issue for the Joint Committee on Health and Children and I would ask the question of all the representatives present because they all have raised the issue of statutory powers. Do the witnesses believe this has prevented them from acting on behalf of people? I believe it has but that belief is based on anecdotal evidence acquired from sitting in a nursing home and looking at the situation around me, where I have seen many individuals who have no visitors and for whom nobody comes in to act on their behalf. If somebody does come in, it is only for a friendly chat and is not an advocacy service. How can we ensure that such an advocacy service is in place?

As for particular questions, how does the Citizens Information Board know the advocates from the National Advocacy Service for People with Disabilities are reaching the people with disabilities who require advocacy the most? How can we ensure those people who are in the community are being reached? As we are trying to move away from congregated settings in some cases, how can we ensure these services really are reaching everybody?

The HIQA standards require advocates to be available for those living in community houses. However, the inspection reports very often look only at whether an advocacy service was well advertised. How do we know, beyond being well advertised, that a service is really engaging with people and that individuals have access to it? Deputy Kelleher has raised the issue of where to go. I would add to this by asking whether, when they go there, people's expectations will be achieved. We have these great posters saying "Come and talk to us," but if the organisations and the advocacy service do not have any statutory powers, is it fair on the individual? Should we be beefing it up?

Does the National Advocacy Service report its findings to the HSE? Perhaps we could prevent further cases if some of the lessons learned achieved at local, regional and national levels were reported on. That would be a big issue for me.

Another important issue is holding people accountable for their actions or inaction. In issues of child protection, I often say I would only hold people accountable for doing nothing. When people take action, if they can account for the action they are taking I will give them that. We do not always know how things are going to pan out. We need to ensure that the HSE and individual facilities can be held accountable, that there is transparency and that they will respond in a timely manner to all types of complaints and representations. I would be particularly concerned about lower-level complaints, concerns or representations that an individual may have.

The role of the family is extremely important in advocating for those who cannot speak up. On the other hand, I would suggest a little caution based on anecdotal evidence. I have witnessed family members who do not regularly visit but will come in and feel they need to create a bit of a storm, maybe to assuage their own guilt. We have to have that balance, and that is where regular visiting and understanding the individual are important. I would go back to the issue of consent, choice and control for the individual. It is his or her life and, as much as possible, anything we do should be focused on that individual, whether he or she is in a nursing home, a hospital, a congregated setting or his or her own home.