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SRN Bulletin - Special EditionMeet the new SRN working groupThe Survivor Researcher Network (SRN) aims to provide mental health service users and survivors involved and interested in research a forum for networking, sharing information, and supporting each other. We have recently recruited ten volunteers from across the country to join the new Survivor Researcher Network working group. The new group members are: Sonia Thompson (East Midlands); Stephen Jeffreys (West Midlands); Victoria McGowan (North East); Karen Machin (North West); Mark Dale (South East); Anand Pattni (London); Peter Beresford (East Anglia); Sarah Carr (London); Dina Poursanidou (London); George Boyle (West Yorkshire); Emma Ormerod - SRN Co-ordinator (Warwickshire). Building on the previous work of the SRN, the new working group will be looking specifically at developing a values-based framework for the network, identifying shared values, addressing issues of inclusivity and considering how we work with values in conflict. The group will also consider next steps for the SRN, including options for practical research projects and funding opportunities. In this special edition of the SRN bulletin the working group introduce themselves, consider some of the current challenges for survivor research and tell us their hopes for the SRN. Sonia Thompson - East Midlands "I have been doing research for over two decades - firstly as a Senior Lecturer then as a community activist, thirdly as an Evaluation Manager in a regeneration company and more recently as a consultant. Information is important to make any meaningful change that you want to make in society and the most disenfranchised have the least access to that information. Instead others research them, then they analyse them and come up with conclusions which tend to maintain the status quo. When I do research I am generally in the minority as an African-Caribbean woman with lived experience of mental health issues. I feel glad to be present to help some of the most marginalised voices to be raised and heard. Current challenges for survivor research: How do we make research meaningful to survivors and available to them and anyone else who can help bring about the changes needed to result in improvements to people’s lives? How do we co-opt powerful players and stakeholders into the survivor research movement in ways which are useful to survivors and which avoid ‘professionals’ from taking the lead and changing the nature of the work? How do we integrate complex contextualised life experiences so that they influence all elements of the research process? I hope that SRN can help to do all of the above and become the group that people think of first when they consider research in the area of mental health". Stephen Jeffreys - West Midlands "My interest in mental health related research was stimulated by my experience of being involved in various consultations about cutting mental health day services and the way in which the more quantitative research quoted to justify this contrasted with the experience of myself and other service users I had listened to. I came to see qualitative research as a means of bringing the diversity of individual experience to the attentions of services, commissioners and policy makers. My two main areas of involvement in research have been working as a survivor researcher on mental health and alcohol service projects, and in the team which organised the Suresearch/MHRN research training courses. These were intended to increase the numbers of service users and carers with the knowledge, skills and confidence to participate in research activities. I am secretary of Suresearch and have experience of organising service user groups feeding into the commissioning process in Birmingham. I am looking forward to my involvement in the SRN and its focus on values and inclusivity in research". Victoria McGowan - North East "My name is Victoria McGowan, I’m 31 and live in the North East. I have 4 children and work in the film and cultural sector as a Learning & Participation Assistant. In my spare time I work freelance and volunteer for mental health research and awareness raising projects, these have included Time to Change, Mental Health North East, McPin, local Social Services and for NHS trusts. In these turbulent times we all face common issues of uncertainty not just from Brexit and terrorism but also from austerity. Many people living with mental health issues have felt marginalised and forgotten. These challenges create a mood of anger and disengagement that can be real challenges for survivor research. It is important to make sure that we help to give survivors a sense of empowerment by giving them a voice to shape services and provide constructive feedback, learning from experiences both positive and negative. It is only through research we can truly appreciate the variety of experiences and the uniqueness of individuals. It is my hope that the research network will be a real hub for sharing information, resources and skills in a flexible and informal way that works to the strengths of all those involved and helps peers to feel supported but also challenged". Karen Machin - North West "I’m Karen Machin, based in the NW of England. I’m interested in how, as peer supporters, we use technology. I believe research can push at the edges to encourage the development of the support and understanding that is needed around mental distress, and that must therefore include, and be led by, survivors, service users and carers. I see research as something that can both underpin good practice, to provide the evidence base that is so appealing to commissioners, and also as something that can highlight new areas for consideration, challenging existing assumptions. This needs to include a diverse range of experiences and opinions, and be founded on a values base that emphasises the range of experiences related to this work. I believe a strong survivor researcher network is essential so that together we can encourage opportunities that build capacity to get our voices heard and influence the research agenda". Mark Dale - South East "Hello, I'm Mark from Essex, I'm a Service user and I'm passionate about involvement and research. It is fundamental to involve service users and carers in research to gain a full understanding from people who use services and their family and others. I look forward to working with the SRN and you to make research in mental health the foundation of all services". Anand Pattni - London "Hi all, Anand Pattni, South West London. After a promising career as an analyst/programmer faded (many years ago) I eventually found myself working as a community support worker for an assertive outreach team. After that I became a bank support worker and experienced life on many different wards, including behavioural units, adolescent, learning disabilities, acute wards, right through to eating disorders. I am entirely self taught, and have gained much through personal and life experience. For me, the main challenge for the SRN is to break further away from the current model of mental health care, and give more consideration to the huge body of research surrounding alternative methods, treatments, services and approaches to care – the current approach delivers inappropriate/inadequate treatment that simply alienates too many people. I hope that by embracing a more explorative and holistic outlook, the SRN can lead the way in using client centred ‘Practice Based Evidence’ as a counterbalance to Evidence Based Practice". Peter Beresford - East Anglia "I am a long term user of mental health services and have a longstanding background of involvement in issues of participation as writer, researcher, activist and teacher. I am Co-Chair of Shaping Our Lives, the national service user and disabled people’s network and organisation and Professor of Citizen Participation at the University of Essex. I am committed to taking forward survivor research and mad studies which I believe have a lot to offer each other". Sarah Carr - London "I am Associate Professor of Mental Health Research and Co-Director of the Centre for Co-production in Mental Health at Middlesex University London. I also run my own independent mental health and social care knowledge consultancy. I have experience of mental distress and mental health service use and use this to inform all my work. I am Vice Chair of the National Survivor User Network (NSUN), a former trustee of the LGBT Consortium and a member of the editorial boards of Disability and Society and The Lancet Psychiatry. In 2012 I co-edited the book Social Care, Service Users and User Involvement with Professor Peter Beresford and was a member of the NICE Guideline Development Group for NICE CG136: Service user experience in adult mental health. I am a Fellow of the Royal Society of Arts, Honorary Senior Lecturer at the School for Social Policy, Birmingham University and Visiting Fellow at the School of Social Policy and Social Work at the University of York". Dina Poursanidou - London "I have a background in psychology and education and have been a University-based social science researcher since 2000. My research has spanned a range of fields, such as mental health, education, child health, youth justice, and social policy/social welfare. I started using mental health services in 2008. I had my first major mental health crisis in 1991 when I was studying for a Master’s degree, and a second very severe and enduring mental health crisis between July 2008 and June 2010 which resulted in a 3-month long detention under a Mental Health Act Section in an acute psychiatric ward, as well as in a 2-year period of unemployment. Following this crisis, I worked in two Universities in the north of England as a Service User Researcher. Currently, I am working at the Service User Research Enterprise (SURE) in the Institute of Psychiatry, Psychology and Neuroscience at King’s College London. I have a 3-year Post-doctoral Research Fellowship and I am carrying out a process evaluation of a violence reduction programme on inpatient psychiatric wards using a critical ethnographic approach. Since 2010 I have been involved in mental health politics and I am a member of the Asylum magazine editorial collective– Asylum, the magazine for democratic psychiatry, provides an open forum for critical reflection and discussion of mental health issues". Dina reflects on the current challenges for survivor research and survivor researchers in Academia What are some of the current challenges for survivor research and survivor researchers in Academia [1]? The wider neoliberal political and economic environment where Universities currently operate in England This neoliberal environment has been characterised -among others- by government cuts in research funding, an acutely competitive research labour market and immense pressures to deliver research outputs to funders within tight timescales; these pressures have harmful effects not only for service user/survivor researchers employed by HE Institutions but for researchers within Academia at large; however, the pressures in question are bound to have a particularly adverse impact on the lives of service user/survivor researchers given that the latter are likely a) to have had career disruptions due to mental ill health which put them at a disadvantage within a ruthlessly competitive research labour market, and b) to have a heightened vulnerability to the effects of the stress that the above mentioned pressures generate. Structural and institutional barriers to meaningful service user/survivor researcher involvement in research and employment Temporary, very short-term and part-time research contracts; financial uncertainty/job insecurity; unemployment. Obstacles to career progression – for example, as result of their temporary and very short-term research contracts, service user researchers are not likely to be given lead researcher roles, and they are not afforded the time or the mental space for writing for publication; How many service user/survivor researchers get to be Principal Investigators in research studies? The existence of ceilings even for the most qualified and experienced service user/survivor researchers. Lack of clear career pathways and career development support for junior service user/survivor researchers; How well are junior service user/survivor researchers supported and mentored in their jobs? What about the development, training, support and employment needs of junior service user/survivor researchers? These barriers are not peculiar to service user/survivor researchers as they are faced by researchers (particularly junior researchers) within Academia at large; however, service user/survivor researchers are likely to have a heightened vulnerability to the effects of the considerable stress that the barriers in question generate. Relational and epistemological barriers to meaningful service user/survivor researcher involvement in research and knowledge generation ‘Unsettling relations’ between non service user university researchers and service user/survivor researchers (Bannerji et al., 1991; Church, 1995) Mad knowledge (service user/survivor knowledge) as ‘difficult, troublesome and dangerous knowledge’ (LeFrancois, Menzies and Reaume, 2013; Pitt and Britzman, 2003; Cooper and Lousada, 2005) that is discredited within the Hierarchy of Evidence on the basis of the research values of neutrality, objectivity and scientific distance. Mad knowledge – collective knowledge of traumas and mental pain stemming from engagement with distressing, disturbing, threatening, emotionally disruptive experiences; collective knowledge of ‘unthinkable’, ‘unspeakable’ matters (e.g. madness) – hence difficult, troublesome and dangerous knowledge. Mad knowledge and unsettling relations between non service user researchers and service user/survivor researchers - potentially closely linked? Service user/survivor researchers occupy a liminal identity space in - between academic research on the one hand, and psychiatric survivor activism on the other; A double identity of an academic researcher and a service user/survivor as a transgressive identity that breaks the rules of Academia and hence is often not recognised and valued; Being able to theorise one's own lived experience and blend first person experiential accounts with 'properly academic' (i.e. critically detached, 'objective' and rigorous) commentaries as a transgressive activity; 'The lack of clear boundaries involves transgression and threat' (Jones, 2012) - i.e. transgression and threat as potential features in the relations between non service user university researchers and service user/survivor researchers. SOME HARD QUESTIONS: Are Universities genuinely interested in service user/survivor knowledge and research? How far can the emancipatory and democratic ideals, and the ethical claims to equality, diversity and inclusion underpinning service user/survivor research be reconciled with the markedly hierarchical, exclusionary and largely non-democratic infrastructures, cultures and relations that characterise Academia? How to do collaborative, relational and participatory research work (i.e. service user/survivor research) in Academia when individual success and competition dominate? What are your hopes for the SRN? I hope that the SRN will function as a) an open forum for critical reflection and discussion of issues relating to survivor knowledge and research, and b) a vital source of resources and support for service user/survivor researchers that has the potential to reduce the isolation of survivor researchers, particularly when they work alone and not as part of a group of survivor researchers. I also envisage SRN as taking a genuine interest in the development needs of survivor researchers and enabling them to meet such needs. References Bannerji, H., Carty, L., Dehli, K., Heald, S. & McKenna, K. (1992) Unsettling Relations: The University as a Site of Feminist Struggles, Toronto, Women’s Press Church, K. (1995) Forbidden Narratives: Critical Autobiography as Social Science, London, Routledge Cooper, A., & Lousada, J. (2005). Borderline welfare: Feeling and fear of feeling in modern welfare, London, Karnac Books Jones, N. (2012) ‘Schizophrenia Bulletin, the BJP & the Politics of First-Person Accounts’, Ruminations on Madness, 15 August (http://phenomenologyofmadness.wordpress.com/2012/08/15/schizophrenia-bulletin-the-bjp-the-politics-of-first-person-accounts). Accessed 19 February 2014 Le Francois, B., Menzies, R. and Reaume, G. (eds.) (2013) Mad Matters: A Critical Reader in Canadian Mad Studies, Toronto, Canadian Scholars Press Pitt, A., & Britzman, D. (2003) ‘Speculations on qualities of difficult knowledge in teaching and learning: An experiment in psychoanalytic research’, Qualitative Studies in Education, 16(6), 755-776 [1] I am referring to Academia as this is the context I am employed in as a service user researcher and I am familiar with; I am inclined to think that the points I am making here also apply – at least to a certain extent- to service user researchers who are not employed by HE Institutions. Emma Ormerod - Warwickshire SRN Co-ordinator I'm Emma, the Research Manager for NSUN and I live in Leamington Spa. Part of my research role involves co-ordinating the Survivor Researcher Network. Whether you are a survivor researcher working in an academic environment, or you are new to research and interested in finding out more, I'm looking forward to strengthening and developing the network with you and members of the new working group, so that it fulfils its potential as a place for us to share knowledge, experiences and ideas with each other. As this work progresses, we will be asking for your ideas as to how best to develop the SRN. If you have any thoughts or questions at this stage, or if you would like to write about your experiences of survivor research in the bulletin, please e-mail me. #NSUNthrive10 campaignGet to know NSUN (National Survivor User Network) in 3 minutes here. To enable us to continue to connect, communicate and influence, we need your help. 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