National Conference Assisted Decision Making- Challenges and Opportunities for health and social care professionals

February 22nd 2016

Hogan Suite, Croke Park,

10.00 a.m. – 4.00 p.m.

Background:

The Assisted Decision Making (Capacity) Act was passed by the on Thursday 17th of December 2015. This Act applies to everyone and has relevance for all health and social care services.

Key features of the Assisted Decision Making (Capacity) Act: • It applies to everyone and to all health and social care settings. • It provides for the individual’s right of autonomy and self-determination to be respected through an Enduring Power of Attorney and an Advance Healthcare Directive – made when a person has capacity to come into effect when they may lack decision-making capacity. • It provides for legally recognised decision-makers to support a person maximise their decision making powers. • It places a legal requirement on service providers to comprehensively enable a person make a decision through the provision of a range of supports and information appropriate to their condition. • It abolishes the Wards of Court system.

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• It provides for a review of all existing wards to either discharge them fully or to transition those who still need assistance to the new structure. • It repeals the Lunacy regulations governing the Ward of Court system. • It establishes a Decision Support Service with clearly defined functions which will include the promotion of public awareness relating to the exercise of capacity by persons who may require assistance in exercising their capacity. • The Director of the Decision Support Service will have the power to investigate complaints in relation to any action by a decision-maker in relation to their functions as such decision-maker.

Health and Social Care context:

The Assisted Decision Making (Capacity) Act will have significant implications for health and social care providers in the provision of safe person-centred care based on respecting the individual rights of each person. In response to these implications the HSE is establishing a National Assisted Decision Making Steering Group to develop a programmatic response to the legislation to ensure effective compliance and implementation. This group will be established by the end of February 2016 and will be supported by an Independent Chair. One of the principle roles of this steering group is to develop a code of practice applicable to the health and social care context and to input into the development of other codes through the Decision Support Service (a new service to be established under the Act) and Department of Health. Other roles include: • The development an Assisted Decision Making (ADM) education and training implementation plan for health and social care services • The development of an ADM information and communications plan for health and social care services • The development of an Advanced Healthcare Directive Implementation plan for health and social care services

Conference 2016

This conference is being organised through the HSE Quality Improvement Division on February 22nd 2016 in Croke Park, Dublin to create an awareness of the Act, its implications, challenges and opportunities for health and social care professionals. The Conference is aimed at managers and staff who are involved in planning, managing or delivering services to patients, service users or

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clients across health and social care settings. It brings together key Irish and UK experts to inform staff and managers about the legislation and to explore the impact this Act will have on current practice

Conference Details:

10.00 a.m. Welcome, Opening statement, Chair of morning session- Dr. Philip Crowley, HSE National Director, Quality Improvement Division

10.10 a.m. Key note speaker- Ms. Patricia Rickard-Clarke, Solicitor, Former Law Reform Commissioner and Chair of the National Advisory Committee of Sage (Support and Advocacy for Older People)

11.10 a.m. Questions

11.30 a.m. Coffee break

11. 45a.m. Key note speaker- Dr. Siobhán O’Sullivan, Chief Bioethics Officer, Department of Health

12.15 p.m. Questions

12.30 p.m. Implications of the legislation for service users, service providers and families- perspectives:

• , Manager, Sage -Support and Advocacy for Older People • Paddy Connolly, CEO and Sarah Lennon, Training and Development Officer, Inclusion • Dr. David Robinson, Consultant Physician in Geriatric Medicine, St. James Hospital , Dublin

12.50 p.m. Questions, Comments

1.00 p.m. Dr. Philip Crowley- Closing remarks

1.05 p.m.- 2.00 p.m. Lunch

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2.00 p.m. Opening remarks- Ms. Justice Catherine McGuinness, retired of the of Ireland and Chair of the Forum on End of Life of the Irish Hospice Foundation

2.10 p.m. Key note speaker- The Hon. Mr. Justice Baker, Judge of the of Justice (Family Division) England and Wales

3.00 p.m. Panel Discussion and questions from the floor with Ms. Patricia Rickard-Clarke, Dr. Siobhán O’Sullivan, The Hon. Mr. Justice Baker, Mr. Paddy Connolly and Ms. Sarah Lennon, Inclusion Ireland, Dr. Rosarie McCarthy, National Disability Authority , Ms. Patricia Gilheaney, Chief , Mental Health Commission, Dr. David Robinson, Consultant Physician facilitated by Ms. Justice Catherine McGuinness

3.50 p.m. Closing remarks- Ms. Justice Catherine McGuinness

4.00 p.m. Close

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Biographies of speakers and contributors:

The Honourable Mr. Justice Baker

Mr. Justice Baker was appointed as a High Court judge assigned to the Family Division in November 2009. In April 2011, he was appointed Family Division Liaison Judge for the Western Circuit. In that capacity he has been heavily engaged in the creation of the single . He also sits in the Court of Protection and is currently involved in the regionalisation of the work of that court. Since his appointment, he has delivered reported judgments on many topics including care proceedings, international child abduction, surrogacy, mental capacity and medical treatment. He is the Editor-in- Chief of the Court of Protection Law Reports.

Prior to his appointment, as Jonathan Baker QC, he was a leading member of the Family Bar with a particular interest in the law relating to children. He was called to the Bar in 1978 and was a member of Harcourt Chambers for 29 years. He took silk in 2001 and was elected Head of Chambers in 2004. During his career at the Bar, he appeared in many reported cases, culminating in Re I, the first family case in the Supreme Court and his last case at the Bar.

Mr. Paddy Connolly

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Mr. Paddy Connolly is Chief Executive Officer of Inclusion Ireland. He has twenty years experience in management in the private and voluntary sectors. Prior to Inclusion Ireland Paddy served for 14 years as the Chief Executive Officer of Cairde, a HSE funded not-for-profit organisation which developed rights-based approaches to ethnic minority health inequalities. He has detailed knowledge and experience in managing organisational change; managing conflict in organisations; human resource management; managing uncertainty; strategic management; and the Irish political and policy system.

He holds a Bachelor of Arts in Management and a Masters in International Relations. He is also certified in workplace, commercial, family mediation and is a certified conflict coach. He has worked as a mediator and conflict resolution specialist.

As part of All Hallows/DCU management programmes Paddy developed and delivered a change leadership programme which aimed to connect systems thinking with change leadership taking cognisance of the unconscious processes at play in the workplace. The programme aimed to support leaders in the community & not-for-profit sector to develop their strategic leadership capacity so that the organisations they lead can drive progressive change.

Dr. Philip Crowley

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Dr. Philip Crowley is National Director of Quality Improvement with the HSE since January 2011. Philip is a doctor who trained in General Practice and then worked for five years in Nicaragua, Central America developing chronic disease care programmes and working with grassroots community organisations in health development. He then worked in the NHS in Newcastle upon Tyne and worked with marginalised communities, professional groups and the health service to tackle health inequalities. He has trained in public health medicine and has worked for 6 years as Deputy Chief Medical Officer with the Department of Health and Children until taking up his current post. Philip continues to work as a GP part-time in an inner city Dublin practice.

Ms. Patricia Gilheaney

Ms. Patricia Gilheaney was appointed Chief Executive in October 2011 following a period as Interim Chief Executive since December 2010.

She joined the Commission as the first Director of Standards and Quality Assurance in October 2003 and led the development and implementation of the regulatory system for mental health services in accordance with Part 5 of the Mental Health Act 2001 (‘the 2001 Act’). This included the development of the first set of national safety and quality standards for mental health services in Ireland entitled A Quality Framework for Mental Health Services in Ireland in accordance with the Commission’s mandate under Part 3 of the 2001 Act ; Rules for specific interventions as laid down in Parts 4 and 6 of the 2001 Act and Codes of Practice for the guidance of persons working in mental health services.

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Patricia has contributed to the development of the national mental health policy Vision for Change (2006) and Connecting for Life, the National Strategy to Reduce Suicide 2015-2020. She was a ministerial appointee to membership of the Expert Group established to review the Mental Health Act 2001.

Ms. Sara Lennon

Ms. Sarah Lennon is the training and development officer with Inclusion Ireland. Sarah Lennon’s educational background is in law and equality studies with training and assessor qualifications. Sarah has worked for many years in the areas of disability, equality and social and legislative change. Sarah has worked with Inclusion Ireland since 2006 and prior to that time she worked in vocational training for people with disabilities. Inclusion Ireland’s campaigning work relating to capacity and decision making legislation has dominated Sarah’s work to date and she led it’s campaigning work in that area. Sarah has worked on Inclusion Ireland’s training work and authored information booklets such as the popular ‘Who Decides & How; Making Medical Decisions’.

Dr. Rosarie McCarthy

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Dr. Rosarie McCarthy is a Senior Policy and Public Affairs Advisor at the National Disability Authority (NDA). The National Disability Authority is an independent statutory body established to provide information and advice to the Government on policy and practice impacting on the lives of people with disabilities. The NDA strategic priorities include a specific focus on the inclusion of people with disabilities in mainstream society and to have a valued role in the community. Rosarie has worked for a number of years in the area of assisted decision-making and has been the lead in developing and providing NDA advice to the Department of Justice & Equality in this area.

Ms. Justice Catherine McGuinness

Ms. Justice Catherine McGuinness is a former judge of the and former President of the Law Reform Commission. During the 1980s she represented Dublin University (Trinity College) in Seanad Eireann. At present she is a member of the Council of State and is of Údarás na hOllscoile Gaillimh (NUIG). She is also Adjunct Professor of Law in NUI .

Catherine was born in Belfast and educated there and in Dublin. She was called to the bar in 1977 and to the Inner Bar in 1989. She was the first woman judge to be appointed to the bench in 1994. She has been a member of a number of State and public boards. She led the Kilkenny Incest Inquiry and was a leader in the movement for the constitutional rights of children. At present she is Patron of the Irish Foster carers’

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Association and of the Irish Refugee Council, and Chair of the End of Life Council. She was for many years a member of the General Synod of the Church of Ireland and is Chancellor of the Dioceses of Dublin and Glendalough. She is a Trustee of the Irish School of Ecumenics.

She has honorary degrees from National University of Ireland, Dublin University (Trinity College), the University of Ulster and HETAC. Her main outside interest is choral singing and she has been a long-term member of the Culwick Choral Society.

Dr. Siobhán O’Sullivan

Dr. Siobhán O' Sullivan is the Chief Bioethics Officer at the Department of Health and is responsible for drafting policy advice and legislative instruments on bioethics related issues. From 2002-2010, Dr. O’Sullivan was Director of the Irish Council for Bioethics, an independent and autonomous body to consider the ethical issues raised by developments in science and medicine. She is currently a member of European Group on Ethics in Science & New Technologies, an independent, multidisciplinary body advising the European Commission in connection with Community legislation or policies. She is designated representative of the Irish Government to the Council of Europe Committee on Bioethics (DH-BIO) and former member of the Bureau of the DH-BIO (2012-2014).

She is a member of the National Living Donor Ethics Committee, responsible for drafting the Ethical Framework for living organ donation in Ireland. She was a member of the steering committee for Transposition of EU Directive 2010/45/EU on Quality of Organs for Transplant in Ireland. She has also served on the Irish National Advisory Committee for the National Organ Donation and Transplantation Office. She is a former member of the Advisory Council for Science, Technology and

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Innovation, the Irish Government’s high-level advisory body on Science, Technology and Innovation (STI) policy issues. She received her Doctor of Medicine from Karolinska Institutet, Stockholm in 1998 and hold a Masters in Healthcare Ethics and law.

Ms. Patricia Rickard-Clarke

Ms. Patricia Rickard-Clarke is a solicitor and former Commissioner of the Law Reform Commission.

She is Chair of the Law Society’s Mental Health and Capacity Task Force and Chair of the Third AGE’s National Advisory Council, SAGE, Support and Advocacy Service for Older People. She has recently been appointed the independent chair of the National Inter-Sectoral Committee for Safeguarding Vulnerable Adults. She is a member of the Council of the Hospice Foundation and of its Think Ahead Project Advisory Group of the Forum on End of Life and a member of the Council of the Royal College of Physicians of Ireland.

Over the years she has contributed to a number of national and international publications, the latest being a contribution of the Irish section on International Protection of Adults which was published by Oxford University Press in 2015.

Dr. David Robinson

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Dr. David Robinson is a consultant geriatrician in St James' Hospital, Dublin. He is also a senior lecturer at Trinity College, Dublin and a Fellow of the Royal College of Physicians of Ireland. He graduated from Trinity College, Dublin in 1996 and completed his basic and specialist training in Queensland, Australia and the South Dublin Geriatric Training Scheme. He was the first Watts Clinical Fellow in the Mercer's Institute for Research on Ageing where his MD thesis examined vitamin B12 deficiency and its relevance to falls and cognition. He undertook a Masters in Healthcare Ethics and Law which examined the ethics of the Fair Deal legislation. He also has an interest in comprehensive geriatric assessment in the acute setting.

Mr. Mervyn Taylor

Mr. Mervyn Taylor is the Manager of Sage – Support & Advocacy Service for Older People. Mervyn was Director of M.S. Ireland, CEO of the MS Care Foundation, Manager of Planning & Organisation with the National Social Service Board (now Citizens Information Board), and European Development Manager for a consortium of IT companies. From 2006 – 2012, Mervyn was Manager of the Hospice Friendly Hospitals (HFH) Programme and from 2009 was Project Manager for the Forum on End of Life and of its flagship project ‘Think Ahead’. He also managed the pilot project for

12 | Page the HFH Programme at Our Lady of Lourdes Hospital in Drogheda, from 2004-2006, which won a ’s Public Service Excellence Award. Mervyn holds a BA and MSc (Community Health) from , has studied Creativity & Innovation with the Open University and Leadership with Cranfield University School of Management.

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