Ms Deirdre Lillis:

I thank the committee for the opportunity to speak. I have worked in independent advocacy for more than 25 years. I currently work as an advocacy co-ordinator with the Social and Health Education Project, a community development and training organisation. We provide advocacy support to all disabled people, including people who use mental health services. Critical changes will need to happen if we are to move towards a more humane and human rights-based legislative mental health framework. That is supported by what has been said during this meeting regarding the importance of the UN convention, the special rapporteur, the WHO reports and our assisted decision-making legislation.

I want to raise two points that relate to being a voluntary patient and the protection of my liberty. If I am admitted as a voluntary patient and I remain a voluntary patient, yet I am not allowed to leave, as I have witnessed in my work primarily because people have nowhere to go, I have no protection of my liberty and I am deprived of my liberty. This does nothing to protect my human rights. I do not think the Mental Health Act addresses this. I have witnessed the issue of the intermediate person being of particular concern when a person may be doubly labelled, or diagnosed as having both an intellectual disability and a mental health difficulty. To address this in the current legislation, which is not fully enhanced in regard to human rights, there needs to be access to independent advocacy to support the human rights of the person. I have witnessed service providers struggling to address this matter and the value of independent advocacy in challenging this deprivation of liberty and supporting a person's wish to leave.

Draft safeguarding legislation has been mentioned. It is hoped this might address the matter in some way, although I hold reservations about the paternalism in the general scheme of the Bill. There appears to be no progress on this, only the addition of this intermediate person, and while I fully accept this will afford some access to redress and respect of rights, as other speakers have said, the voluntary position is very similar regardless of the judgment on a person's lack of capacity. I have grave concerns this will not be used because a person requires treatment in an approved centre but rather because people have nowhere to go. I have witnessed cases of people having stayed in units for more than ten years in this position, and I cannot begin to imagine what that must be like.

As regards the statutory right of access to independent advocacy, if I am detained under the Mental Health Act, I should have a statutory right of access to independent advocacy besides the right of advocacy to legal representation. Legal representation, unless it is provided in such a way that fully comprehends a human rights-based approach to mental health that involves going beyond the confines of the medical, does not suffice. Any situation in a civilised world which means that a person is deprived of liberty because of his or her health warrants access to independent advocacy support to ensure our voices will be heard and our rights respected. We have a responsibility to respond to the UN convention and to develop our legal framework to honour our ratification of this convention. Other jurisdictions have embedded a statutory right to independent advocacy in their mental health legislation for many years, and with this comes the requirement to resource independent advocacy adequately. I carry some reservations because, if it is resourced to support a statutory right only where a person is involuntarily detained, that is not good enough. Scotland has overcome this in legislation by making independent advocacy a statutory right for a person at any point in the mental health system.

Those aspects are important to remember at this moment, but the bigger question is when we will move from the inhumane actions of coercion and control in the name of treatment. This legislation is being reviewed in the context of improving a system that we already have and that already fails us in respect of human rights. How can we go beyond the scope of this limited and medicalised model in this legislation? I do not think we can, but the smaller steps would go some way to getting us there. If we enact legislation in the spirt of human rights, this Act should not exist, although that is not going to happen today or tomorrow. We now have legislation that provides a human rights framework to address our health needs, namely, the Assisted Decision Making (Capacity) Act 2015, which we hope will finally replace the Lunacy Regulation (Ireland) Act 1871, in 2022. If, at times, we may need extra support to speak for ourselves about decisions being made about our health and our lives, this Act affords us that support. Why, therefore, do we need the Mental Health Act? Wherever and whenever we are trying to make informed decisions about our own lives in systems where power is inequitable and professionals are not listening, access to independent advocacy is of critical importance in supporting that process.