Ms Nicola Byrne:

I thank the committee for the invitation to attend. Shine is a national organisation which provides information and support to people affected by mental health difficulties, through individual and group work and recovery education and training. Originally called the Schizophrenia Association of Ireland, SAI, we were established in south Dublin in 1979 by a group of family members and professionals. In 2009, we changed our name to Shine to reflect how we had developed to offer supports to everyone affected by mental health difficulties and their families. We are the only national mental health organisation specifically founded to support all family members.

Shine has two national stigma reduction programmes aimed at promoting change in the societal perception of mental illness. These are See Change and Headline. Some of our projects of the committee may be aware include: the Green Ribbon campaign, which will celebrate its tenth anniversary in 2022, and the national mental health media awards. We acknowledge the hard work and commitment of all involved in progressing this legislation to this stage and we broadly welcome the provisions of the Bill, as outlined in these draft heads currently under consideration.

We believe these changes will improve mental health services and give an amplified voice to service users. Our analysis of the heads of Bill is influenced first and foremost by the voices, personal testimonies and lived experiences of the people we work with. It is also informed by the human rights analysis and is framed under key relevant articles from both the European Convention on Human Rights and the UN Convention on the Rights of Persons with Disabilities, UNCRPD. Shine welcomes the shift in paradigm from one of best interests to one of guiding principles. A lot has been done in this regard but there is still a long road ahead of us. Based on the voices of the people that we work with and quoting the UN special rapporteur, we advocate for a shift that moves away from paternalism, a "paradigm shift that is recovery and community-based, promotes social inclusion and offers a range of rights-based treatments and psychosocial support at primary and specialized care levels".

We emphasise and are keen to discuss in more detail, with testimonies, the following points. The first relates to the family and supporters. People do not exist in isolation. It is vitally important that family members and supporters have supports available to them through the mental health services, independent of any supports being provided to their loved one. With regard to advocates, we believe the role of advocates and advocacy services is not given enough consideration in the heads of Bill and should be further highlighted and elaborated on as it is key if people are to fully exercise their legal capacity.

On seclusion and restraints, these practices are not consistent with the prohibition of torture and other cruel, inhumane or degrading treatment. The guidelines from the UNCRPD support eliminating these practices to protect the security and personal integrity of persons with disabilities who are deprived of their liberty.

With regard to early intervention and community services, it is evident that the promotion of community support mechanisms at the local level can prevent difficulties from becoming more complex. We support the recommendation to include a provision for the right to community mental health services in the amended legislation as this will contribute to a reduction in the number of cases that evolve into more complex mental health difficulties.

On information and knowledge, we strongly believe that information is power. When asked about some of the amendments being put forward in the heads of Bill and the key gaps, a significant number of people told us they were not aware that such a process was taking place. We would therefore like to encourage the development of an awareness raising campaign to provide the Irish public with key information on the upcoming Mental Health (Amendment) Bill and the Assisted Decision Making (Capacity) Act 2015.

With regard to voice and participation, the voice of the service user should be at the core of all planning, both in care and embedded in mental health service delivery. Advocates should participate in the development of the care plan and plans should be developed in a format and language that the person can understand.

With regard to stigma and discrimination, we welcome replacements already made in the heads of Bill such as the replacement of "patient" with "person" and "tribunal" with "review board". However, the people we work with question the use of the term "mental health disorder" to describe their difficulties. There is consensus that the term is degrading, stigmatising and not aligned with human rights principles.

Other areas that we would welcome discussion on include: treatment and consent; the importance of privacy and the impact of the physical environment on recovery; an independent complaints mechanism; culture change and resources; and examples of good care and practice in mental health services. Finally, we note that it was confirmed in an earlier session that the guiding principles that state “the provision of mental health services is subject to the availability of resources” would be removed. These are laid out in the proposed section 84(4) in the context of children and the proposed section 4(9) in the context of adults. However, we ask that this removal form a specific recommendation of the committee. I thank the committee for the invitation to speak today. We are happy to discuss these matters in more detail and to answer members' questions.