The Mental Capacity Act 2005 and Patient Participation in Decision Making: A Community Engagement Project Janet Lawrence Mental Capacity Act/Safeguarding Adults Practitioner Mary Partridge Lead Nurse for Safeguarding Adults

Overall Aim of the Paper To provide an overview of a community engagement project to increase public awareness of how the Mental Capacity Act 2005 (MCA) supports patient participation and shared decision making

Learning Outcomes For delegates to have: An overview of the MCA principles and its relevance to patient participation and shared decision making An awareness of how a community engagement approach has been successfully applied to promote public awareness of the MCA in a diverse community Knowledge of the benefits of utilising service user involvement and a multi-agency approach to facilitate and promote patient empowerment, autonomy and choice in healthcare decisions

Project History The MCA – five key Principles Embedded in the protection and safeguarding of vulnerable adults A nurse-led project responding to unmet needs in Birmingham Maximising health and social care decision making for patients and carers to increase public awareness in Birmingham of how the MCA supports healthcare decision making Overall aim to increase public awareness in Birmingham of how the MCA supports healthcare decision making

MCA Principles A person must be presumed to have capacity Individuals must be supported to make their decisions A person should not be treated as unable to make a decision because they make an unwise decision A decision made or act carried out on behalf of a person who lacks capacity must be made in their best interests The best interest decision must be the least restrictive way in valuing the person’s rights and freedom

Shared Decision Making…? “Shared decision making will become the norm; no decision about me without me” (Department of Health, 2010) “I have spoken to an Imam about MCA and he feels this needs to be widely aired as he himself has been dealing with families arguing about who has the authority to act on behalf of an elderly relative” (service user, Birmingham) Two million people in England and Wales are believed to lack capacity to make decisions for themselves with an estimated six million people providing care for those who lack capacity (Social Care Institute for Excellence, 2009) People with learning disabilities making major decisions were routinely deemed unable to make decisions and unwise decisions were often taken as incapacity (Norah Fry Research Centre, 2008) There is a need for increased awareness to Black Minority Ethnic communities of the MCA. “Decision making” and “capacity” are too complex for people to engage. “The Act is up there and people are somewhere else” (Mental Health Foundation, 2008)

Targeting Unmet Need to Promote Shared Decision Making Community engagement: ‘community engagement’ is a process of community involvement with decisions that impact them. It can provide a framework and strategy for the planning, development and implementation of health projects Establishing a model Project proposal Funding Building community capacity Achieving health outcomes

The Community Engagement Approach

Outcomes and Indicators Aim 1: Public awareness of the Principles of the MCA increased Aim 2: Public access to MCA resources increased Public awareness of MCA rights increased Aim 3: Patients and carers feel confident to participate and challenge healthcare decision making Their healthcare decision making experience is improved Three MCA workshops (40 people per workshop including 20 service user group representatives) Increased enquiries to OPG in Birmingham Increased access or ‘traffic’ – webhits to Trust website Distribution of MCA resources Increase in confidence to participate and challenge decision making

Stakeholder Engagement and Steering Group Service user involvement Patient and Public Involvement team Office of the Public Guardian Legal services The Pension Service NHS staff Local authority staff Independent Mental Capacity Advocacy (IMCA) Service Local GPs

The Workshops…

Feedback… Delegates: “Positive and friendly – a genuinely public centred event” “A very good workshop” “Informative” “Very educational” “Very good. Really enjoyed the session” “I think more workshops like this are needed” Stakeholder and Panel Members: “Thank you for inviting the Office of The Public Guardian to participate in your workshops. A very rewarding experience” Quality Review Manager – The Office of the Public Guardian “I found it really informative and forged some excellent contacts. I feel I have a much more rounded perspective of an individuals autonomy in their own decision making from many different perspectives” Partnership Support Manager, The Department for Work and Pensions “I really enjoyed the afternoon and also the opportunity to listen to the other speakers” Solicitor “A very good programme” Birmingham City Council

A Carers Story From an early age, Mrs A cared for her mother who had challenging behaviour as a result of a combination of mental health issues. Although her mother passed away two years ago, through her knowledge of the Mental Capacity Act and by registering herself as her mother’s ‘Lasting Power of Attorney’, Mrs A was able to ensure that her mother got the care she needed – something she now believes added years onto her mother’s life…

Progress and the Next One to Two Months Four workshops delivered 154 delegates attended – patients, carers and community groups Delegate diversity – age, ethnicity, gender and disability 32 MCA Champions 2,800 resources distributed 2,300 web hits on Evaluation and final report in progress – interim results show an increase in learning and confidence for delegates to apply the MCA during consultations Dissemination

Moving Forward Mental Capacity Champions – to champion the Act and help people find out more information should they need it by distributing the resources and signposting Continued partnership working – ongoing opportunities to build capacity and capability within the organisation and community Further opportunities – to link in with other relevant health and social care agendas and campaigns, for example NHS Summary Care Records and other service user groups

Thank You for Listening...any questions? Mary Partridge – Lead Nurse for Safeguarding Adults Janet Lawrence – Mental Capacity/Safeguarding Adults Practitioner