Ms Nicola Byrne:

While the right to confidentiality and privacy of the patient must be protected at all times, it is vitally important that family members and supporters have guidance and support mechanisms available to them through the mental health services. These mechanisms should be established to provide ongoing supports to family members and supporters both before and after admission, as family members and supporters can feel particularly isolated and vulnerable at these critical times. Family members and supporters could access information and share opinions and concerns via an allocated key worker, we would suggest, who could then communicate with the multidisciplinary team where appropriate, and particularly where concerns regarding risk to self or others are raised.

We also welcome the allocation of advocacy services that support family members and supporters. Family members and supporters are often the only primary care that people can access yet they are left outside the door in all of the planning, interventions and decisions. There is a need to move to the "shift left" concept identified in Sláintecare and plan for appropriate inclusion of those who support people with lived experience, not just in crisis but in recovery and wellness. The role of the authorised officer is very important to enable families to stay in their role and to continue beyond admission to have a positive relationship with their loved one. This needs significant investment and buy-in. For example, in a survey we did this week we found that 74% of respondents were not aware of the authorised officer role under the Mental Health Act.

Here are some of the testimonials shared by people who use Shine's services in respect of the engagement of family members and supporters in care, treatment and recovery plans. One person said that better family involvement and representation is required and indeed necessary for the care of the patient. It is unacceptable that there is no provision for family attendance or representation at hearings that review patient retention in hospital under the Mental Health Act. This needs to be amended to include family members in such reviews and hearings. The person says that families should be heard at such forums. Another person said that as a family, they found it hard at times because they could be left out or not informed about their loved one's care. The person understands that because of patient confidentiality, families are not told everything but when the loved one had to come home while still suffering with psychosis, those times were hard. The person really thinks there should be more support for families and they should be kept better informed about their loved one's status during their care. Another person said that more family involvement in patient care is vital to the patient treatment and care plan and asked how care in the community is to progress without the family involvement and support. Better balance is required between patient confidentiality and the family's or next-of-kin's knowledge and understanding of treatment plans. Next-of-kin should be updated on treatment plans and should assist in discharges from hospitals. Another person said it is extremely important that the family knows what is going on as it is a huge part of the person's life. Essentially family should be kept more up to date when any problems are seen. The process should be more collaborative all round.

Article 14 of the UNCRPD, liberty and security of the person, provides:

1. States Parties shall ensure that persons with disabilities, on an equal basis with others: a) Enjoy the right to liberty and security of person;

b) Are not deprived of their liberty unlawfully or arbitrarily, and that any deprivation of liberty is in conformity with the law, and that the existence of a disability shall in no case justify a deprivation of liberty. 2. States Parties shall ensure that if persons with disabilities are deprived of their liberty through any process, they are, on an equal basis with others, entitled to guarantees in accordance with international human rights law and shall be treated in compliance with the objectives and principles of the present Convention, including by provision of reasonable accommodation.

Article 15, freedom from torture or cruel, inhuman or degrading treatment or punishment, provides:

1. No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment. In particular, no one shall be subjected without his or her free consent to medical or scientific experimentation.

2. States Parties shall take all effective legislative, administrative, judicial or other measures to prevent persons with disabilities, on an equal basis with others, from being subjected to torture or cruel, inhuman or degrading treatment or punishment.

I will leave it at that.