A Card Before You Leave: Participation and Mental Health in Northern Ireland

health and human rights in practice Frank V. McMillan, MA, is a card before you leave: participation Local Development Worker and mental health in northern and Researcher at the ireland Participation and the Practice of Rights Project. Frank V. McMillan, Nicola Browne, Stephanie Green, and Dessie Donnelly Nicola Browne, LLB, LLM, is Research and Policy Officer at the Participation and the abstract Practice of Rights Project. Due to a recent and dramatic rise in suicide and self-harm rates, mental health services have received a high level of attention in the politics of Northern Ireland, result- Stephanie Green, LLB, is ing in the implementation of numerous policies and the publication of many public Local Development Worker reviews on the subject. Critically, these policies have also emphasized and required the at the Participation and the participation of mental health service users in decision making about service design, Practice of Rights Project. implementation, and monitoring. This paper analyzes the experience of a group of mental health service users in north and west Belfast, the Public Initiative for the Dessie Donnelly, MA, is Prevention of Suicide–Greater Shankill Bereaved Families Rights Group supported Local Development Worker by the Participation and the Practice of Rights Project, as they campaigned for policy at the Participation and the change using a human rights-based approach. It considers, first, the group’s use of a Practice of Rights Project. participatory, “bottom-up” approach to set human rights indicators and benchmarks defined by group members themselves as an example of meaningful participation from Please address correspon- an affected group. The paper then looks specifically at one of the group’s issues — dence to the authors, c/o follow-up care — and reveals how the group was able to bring about policy change Participation and the Practice on this issue across Northern Ireland. Finally, it discusses how the group’s experience of Rights Project, 54 York in this campaign has revealed problems with the way that the government currently Street, Belfast, BT15 1AS, engages with mental health service users in Northern Ireland. The article closes by United Kingdom, email: identifying key next steps to be taken as the focus of the campaign shifts to ensuring [email protected]. that active, free, and meaningful participation takes place in accordance with international human rights standards. Competing Interests: All authors are employed by the In the years following the end of conflict in Northern Ireland, north and Participation and the Practice west Belfast experienced skyrocketing rates of suicide and self-harm. In of Rights Project, which sup- a longitudinal study across 426 constituencies in the United Kingdom, ports and works closely with the PIPS-Greater Shankill Brock et al. found significant differences in the suicide rates between Bereaved Families Rights 1991–1997 and 1998–2004 in Northern Ireland. The Belfast North par- th th Group. liamentary constituency’s suicide rate rose from 319 to 11 highest in the UK; the increase in suicide in Belfast West led to a similar increase, th th 1 Copyright © 2009 McMillan, from 259 to 13 highest. Browne, Green, and Donnelly. This is an open access article As a result of this increased suicide rate — and because of some highly distributed under the terms publicized and tragic failures of mental health services — mental health 2 of the Creative Commons has recently received special emphasis in Northern Irish politics. A num- Attribution Non-Commercial ber of government policies and reports published in recent years have License (http://creativecom- highlighted the commitment to reduce the number of suicides and to mons.org/licenses/by-nc/3.0/), improving mental health services of Northern Ireland’s Department of 3 which permits unrestricted Health, Social Services, and Public Safety (DHSSPSNI). non-commercial use, distribu- tion, and reproduction in Critically, these policies also emphasize the importance of active par- any medium, provided the ticipation in making decisions related to mental health by mental health original author and source are service users, carers, and bereaved families. For example, Protect Life, the credited. www.hhrjournal.org volume 11, no. 1 health and human rights • 61 mcmillan et al. DHSSPSNI suicide prevention strategy for 2006– This article uses the “card before you leave” example 2011, came into existence largely as a result of sus- to highlight three points in relation to participation and tained campaigning by families bereaved by suicide; health policy in Northern Ireland. The points, which as such, it lists engagement with mental health service we hope will be useful to others, are as follows: users and bereaved families as one of its core prin- ciples. Another DHSSPSNI document, the Bamford First, the “card before you leave” system illustrates Review, emphasizes “the importance of service users that taking a participatory, “bottom-up” approach and carers as partners in service planning, develop- to human rights indicators and benchmarks can ment, delivery and monitoring” of mental health ser- engender meaningful participation by service users, vices and policy.4 A number of consultative bodies, allowing them to tangibly track the progressive real- including a Families Forum and the Suicide Strategy ization of their rights and make reasonable, targeted Implementation Body (SSIB), were set up to foster recommendations in accordance with human rights user participation and to give mental health service standards. An important aspect of this approach is users a “powerful voice.”5 These policies and struc- that the human rights indicators are defined by ser- tures represented a specific attempt to go beyond vice users rather than by governments. affirming the importance of participation by mental health service users in making decisions related Second, the “card before you leave” system concrete- to their treatment to actually ensuring their ability to ly demonstrates the potential of genuine participa- participate and furthermore encouraging their par- tion to identify and address problems in the delivery ticipation in the overall design, implementation, and of mental health services. Service users themselves monitoring of services. can suggest, define, and monitor tangible changes to mental health services, changes that have the poten- But has this participation actually been meaningful? tial to save lives. Has it enabled mental health service users to influence policy planning, development, delivery, and Third, the group’s work on the issue of follow-up monitoring as required under international human care both points to the existence of structural obsta- 6 rights and local policy standards? cles to meaningful participation from service users and highlights the need for research and change if In this paper, we highlight the work of a group rights-based participation is ever to be mainstreamed of mental health service users, bereaved fami- into health policy. The final section of the paper con- lies, and carers in north and west Belfast. Since siders the experiences of these service users seeking 2007, the Public Initiative for the Prevention of to influence mental health policy in Northern Ireland Suicide–Greater Shankill Bereaved Families (PIPS- and outlines the next steps they plan to take. It is our GSBF) Rights Group has been working with the hope that these steps will be applicable to other activ- Participation and the Practice of Rights Project ists and policymakers who are attempting to increase (PPR) to improve mental health services in Northern meaningful participation of other vulnerable groups. Ireland and to increase service users’ participation in decision making related to their health care.7 This article focuses on one of the group’s recommenda- a bottom-up approach to human rights indicators and benchmarks tions, a “card before you leave” appointment system for mental health patients, which the DHSSPSNI Human rights indicators and benchmarks, set and has since adopted. This intervention was initiated monitored by service users themselves, are central to to ensure that individuals discharged after receiving the approach used by the PIPS-GSBF Rights Group mental health treatment (either in-patient or accident and by PPR. This section introduces the indicators and and emergency services) receive a card with the date benchmarks used in the group’s approach, as well as and time of their follow-up appointment before they the development program that supported them in this leave the premises. Even if the appointment were process. We then describe some of the specific recom- not to take place within one week as required, hav- mendations made by this group through their work. ing a card noting a fixed date and time for their next appointment would ensure that the patient knew that Paul Hunt, former UN Special Rapporteur on the she or he was still connected to services. Right to Health, has emphasized — both in this 62 • health and human rights volume 11, no. 1 health and human rights in practice journal and elsewhere — the importance of human has been working with a number of individuals from rights indicators and benchmarks for the effective the Public Initiative for the Prevention of Suicide implementation of economic and social rights.8 By and Greater Shankill Bereaved Families (formerly highlighting specific issues that need to be addressed “Reaching Across to reduce Your risk of Suicide” in accordance

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