Mr. Mervyn Taylor:

Thank you, Chairman, and members of the committee for inviting us here for what I believe is the first dedicated discussion on the wider issues of advocacy. I acknowledge the presence of the chair of our national advisory committee, Patricia Rickard-Clarke, and of the co-ordinator of our legal and financial team, Mary Condell. Sage has its origins in the Leas Cross scandal of 2005. It is ten years ago in May since that dreadful scandal broke in an RTE story. We have had a number of other events since then, such as Áras Attracta, the events in Portlaoise hospital, the investigation of home help abuses in 2011 and other abuses which were highlighted in 2014. We have had reports from HIQA and the Ombudsman's office, both of which have recommended the development of advocacy services in hospitals.

The redevelopment of a support and advocacy service for older people in the last year has coincided with commitments by the HSE to develop a national volunteer advocacy programme as part of a wider response to the Áras Attracta scandal, a recent commitment by the Minister for Health, to which the Chairman referred, to develop a national patient advocacy service and a recommendation by the Ombudsman for the development of independent advocacy services, involving volunteers, in hospitals. There are a number of other organisations, some of which are represented here today, notably the Citizens Information Board and Inclusion Ireland. Together there is a very rich picture of what exists and what is promised to emerge but we now need to take stock and find direction and a framework for development. In some ways, we are dealing with the law of the 46A bus; one waits a long time for one bus and then three come along. We are at the stage of three buses coming along. The question is whether we can get on any of them and if they are going in the right direction.

Fundamentally, advocacy is about voice. It is about the right of a person to have support in expressing their wishes and preferences or to have another person act independently of service providers, family members and systems interests to advocate on their behalf. That is widely recognised in the developed world. Independent advocacy must be distinguished from the work of staff responsible for complaints and from the day-to-day work of professionals and health and social care providers who can advocate on behalf of an individual up to a certain point but beyond that, a conflict of interest can arise.

I will focus on the framework for development, which we have set out in great detail in our opening submission, in short points in this statement. The framework must address some key issues. The first of those is the fragmented and sometimes reactive nature of developments to date and the need for collaboration and co-ordination. There is a need for standards, training, support, recording and monitoring of activities and assessment of outcomes. The latter area is of particular importance. There is a need for a clearly stated rationale for the development of support and advocacy services as part of the wider pattern of response to the health and social care needs of citizens. I stress that advocacy on its own is not a solution. It is part of a wider approach. There is a need for an assessment of the likely resources required to provide effective independent advocacy in the health and social care sector. I say that in particular in the context of the emerging capacity legislation, which in many ways will bring us forward but it will be very challenging for many people.

We have made some specific suggestions. The first is that there should be a process of stakeholder and public consultation to inform the development of future legislation which would guide the development and provision of advocacy services. Things that are really important, which will be stressed by other colleagues during the meeting, include the right of an advocate to have access to people, premises, information and meetings. They exist and are supposedly allowed for in the HIQA regulation, for example, in nursing homes, but they are not in many cases allowed by the care provider.

Services funded from public sources should have, as a clear requirement of that funding, an obligation to provide and promote access to independent advocacy for the benefit of service users. Services funded from public sources should be clear on the requirement to provide and promote access to independent advocacy for the benefit of service users. Those who receive funds should be required to engage in formal structures of co-ordination and collaboration. A process of collaboration and co-ordination could be started by the formation of a liaison group for relevant support and advocacy services in the context of the formation by the HSE of the new inter-sectoral committee for safeguarding vulnerable adults. That is currently at the formation stage. There needs to be an assessment of the desirability of the separate development of support and advocacy services for people with disabilities and for older people. A small piece of independent research should be commissioned to assess the likely resource implications of developing support and advocacy services to an adequate level of provision. We need to address the resource issue. There is a need to develop a public sector volunteering policy and guidelines to ensure that people who wish to make a contribution can do so but, equally, to reassure those who are professionals in their area that there is no attempt to impinge on their role. If we wish to add value by involving citizens in advocacy, we must be clear and have a public sector volunteering policy and guidelines.

As the Minister alluded to earlier in the month, we seek the extension of the jurisdiction of the Ombudsman to include administrative and organisational aspects of clinical care and the simplification and further development of existing complaints system.

We are particularly conscious of the fact that a decision support service will be established under the Assisted Decision-Making (Capacity) Bill. That agency will have considerable potential to act as a catalyst for developing standards and promoting good practice. As part of its brief, it will play a role in developing codes of practice. Therefore, we need to factor in a new entity which is emerging but is not yet there. I hope that it will be in the legislation by the end of the year.

We need some clarification on the role of the recently announced national patient advocacy service because a service was announced last year by the former Minister for Health, Deputy James Reilly. It will now be established by the national patient safety office and the talk is that it will be about information and signposting. It may be a very useful development but it could also be another layer that might make things more complicated.

People should be able to advocate for themselves in advance. Therefore, we need a major public campaign to promote the advantages of advance planning for future life events involving advance health care directives, an enduring power of attorney and the Think Ahead resource which enables people to record key information, wishes and preferences in the event of an emergency, serious illness or death. Financial incentives of different forms, such as tax credits or free legal aid, should be developed to support the initiative. In effect, the State would promote pre-planned self-advocacy for when people are no longer able to speak for themselves.

We believe that the development of an oversight and accountability mechanism, chaired by the Ombudsman, would link the work of independent providers of support and advocacy with the work of the Oireachtas Joint Committee on Health and Children. There is a need for providers to be accountable to the publicly elected representatives of Ireland and, in turn, they should have an opportunity to hear what the issues are for the independent support and advocacy sector.