Service user involvement and co-production publications Publications by the members of the national survivor user network (NSUN), network for mental health, on user involvement and co-production Expand The case for co-production Charter and Guidelines for Partnership Working between Generic and Black and Minority Ethnic User/Survivor-led Organisations (TOOTS)Dancing to our own tunes by Jayasree KalathilMaking user involvement work by Peter BeresfordOn our own terms by Jan WallcraftStrategies for living: user led research into strategies for living with mental distressUser involvement - a brief literature review by Alison Faulkner Ethnic Inequalities in Mental Health: Promoting Lasting Positive Change - A Consultation with Black and Minority Ethnic Mental Health Service Users
Healthy Lives (2017) Improving physical health services for people diagnosed with serious mental illnesses Expand Healthy Lives Project Improving physical health services for people diagnosed with serious mental illnesses This is a user-led study which the Healthy London Partnership mental health programme commissioned NSUN to undertake. We asked: What physical healthcare experiences do people with serious (enduring) mental illness diagnoses have? What are their needs? What improvements in commissioning and in services are needed? You can download the full project description as well as the reports it produced: Project outline Healthy Lives Project Full Report 2017 Healthy Lives Project Executive Summary 2017
Unlocking Service User Involvement Practice in Forensic Settings (2011) NSUN commissioned WISH to conduct a review of involvement practice in forensic settings. Expand NSUN commissioned WISH to conduct a review of involvement practice in forensic settings. The resulting report has now been published. Many NHS and independent sector forensic units are failing to provide adequate and meaningful opportunities for service user involvement. This is the conclusion of a review carried out by WISH on behalf of NSUN and published in October. Just under half (74) of the 154 secure psychiatric hospitals identified in the survey returned the questionnaire. The responses showed low levels of user involvement and a widespread lack of robust structures that would give service users a meaningful say in how services are designed and delivered. In only 55% of NHS hospitals was there a member of staff with specific responsibility for service user involvement. The most common type of forum for service user involvement was the weekly community meeting (96%), followed by the patient’s council (47%). The issues dealt with were mainly day-to-day concerns, such as smoking, activities, food, and the ward environment. Many units lacked any mechanisms for feedback or to evaluate effectiveness of these forums. The report makes several recommendations – not least that all forensic hospitals should have a designated service user involvement lead post, and a senior manager with specific responsibility for user involvement. NSUN says forensic units also need clear guidelines on good practice and mechanisms for ensuring feedback and assessing the effectiveness of user involvement structures and forums. NSUN will use the survey findings to bid for funds for further research into embedding user involvement in forensic settings. An implementation plan will set out how the recommendations will be taken forward. To find out about WISH please visit https://www.womenatwish.org.uk/ Document by this project: Forensic report
Values-based commissioning (2014) Partnership project around supporting people with lived experience to gain proper input into the commissioning of services they use. Expand What is commissioning? Commissioning is the process of making sure that health and care services meet the needs of the population in each local area. Commissioners set priorities and organisations are selected to provide health services for local people. NSUN seeks to improve service user involvement by supporting people with lived experience to gain proper input into the commissioning of services they use. Values-based commissioning Traditional commissioning relies on scientific and research evidence to make decisions about what kinds of services should be prioritised and paid for. This can overlook the experiences and opinions of people who actually use the services, so what’s provided might not meet people’s needs. In ‘values-based’ commissioning, the views and experiences of people who use services have equal weight to the scientific and research evidence. “Values-based commissioning is a practice where everyone becomes equal partners. Service users, carers, clinicians and managers all become part of the commissioning model regarding mental health. There’s joint ownership and there’s no power issues really. So, services users and carers have more of a say in what goes on in the services they receive”. (Service user and carer) We know that this is far from the reality in many places at the moment. Many people aren’t happy with the mental health services in their area and some have had poor or even traumatic experiences. Values-based commissioning could be your chance to have a say and change services for the better. Telling commissioners how it feels to be on the receiving end of services and suggesting improvements could make a real difference to health services and the people who used them. Output: Influencing Mental Health Services, guide to Values Based Commissioning (NSUN in partnership with Mind). Values based commissioning report
Peer Support: Working with the VCSE Sector (2020) NSUN, AMHP and Mind have jointly produced a thought-piece outlining how voluntary, community and social enterprise sector (VCSE) organisations can meaningfully contribute to the provision of peer support in mental health; and offer practical examples of the diverse ways in which this is already happening. Expand We argue that the knowledge, skills, experience and resources of the VCSE sector are valuable in establishing a network of peer support within and across local communities and outline the benefits of creating links and working in partnership between NHS peer support and local VCSE organisations, with some examples of good practice. As a thought piece, the document is designed to be thought-provoking and offer perspectives on critical issues regarding Peer Support Workers and the wider health and social care system. This work has been commissioned by Health Education England with the aim of making a helpful contribution to understanding, planning and expanding the presence of Peer Support Workers in health and care settings. You can read the report, written by Alison Faulkner, here.
Remote and Online Peer Support Resource (2020) Over the past months, collaborative working has shown that we have shared experiences of what works. This resource, for anyone involved in providing peer support, outlines best practice, tips, and information about remote support, including the move back to face to face. Expand Mind, Get Up Set Up, NSUN, Bipolar UK and Together for Mental Wellbeing came together to host forums over the pandemic with peer supporters, and the resource is an output from these sessions, capturing shared learning. In the resource, we consider: Values and principles of peer support Getting there: remote and online options Managing the online space Facilitation skills Safety and security Creative ways of connecting Wellbeing Returning to face-to-face and other options The information will be helpful to any groups and organisations who operate models of peer support. You can read the free resource, written by Alison Faulkner, here. You can download a Word document version of the resource here.
Keeping Control (2020) These resources are for anyone who has experienced abuse, victimisation or hate crime directed at them because of their mental distress or psychiatric diagnosis. Expand Keeping Control What to do if you have experienced abuse or hate crime Resources for mental health service users and survivors These resources are for anyone who has experienced abuse, victimisation or hate crime directed at them because of their mental distress or psychiatric diagnosis. They are based on research carried out at Middlesex University. The aim is to share some of our research findings with you and to give you ideas and suggestions about what you can do if you have experienced this kind of abuse. Listen to interviews Alison Faulkner: NSUN · Interview with Dr Alison Faulkner, Survivor researcher and trainer Sarah Carr: NSUN · Interview with Dr Sarah Carr FRSA, Senior Fellow in Mental Health Policy Tina Coldham: NSUN · Interview with Tina Coldham, Mental Health User Consultant, Trainer & Researcher Christine Khisa: NSUN · Interview with Christine Khisa, Peer Researcher Ian Loynes: NSUN · Interview with Ian Loynes Chief Executive SPECTRUM Centre for Independent Living CIC c Read the report By Alison Faulkner. Available in English, Urdu, Gujarati, Arabic, and Bengali. An easy-read version is also available. We have organised the report in four parts: What people told us What people found helpful What you can do if you have experienced abuse or believe you have been a victim of hate crime Sources of help Download the report English (for a plaintext version click here) Gujarati (for a plaintext version click here) Arabic (for a plaintext version click here) Urdu (for a plaintext version click here) Bengali (for a plaintext version click here) Easy-read (for a Microsoft Word version click here) c More about Keeping Control: This resource is based on research carried out at Middlesex University by Dr Sarah Carr, Dr Trish Hafford-Lechfield, Dr Alison Faulkner, Dorothy Gould, Christine Khisa, Claudia Megele, Rachel Cohen. Research papers published from this research can be found at: https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.12963 and https://onlinelibrary.wiley.com/doi/pdf/10.1111/hsc.12806 This resource is based on independent research funded by the National Institute for Health Research School for Social Care Research (NIHR SSCR).
Informing a Decision Guide for Psychological Treatments for Depression (2020) Expert by Experience consultation in partnership with The University of Essex and Shaping Our Lives. Report by Alison Faulkner. Expand Background: The National Institute for Health and Care Excellence (NICE) produces evidence-based guidance and advice for health, public health and social care practitioners. NICE has been working on a new depression guideline for several years. The NICE guideline for depression is a very long and technically complex document. NICE acknowledges that treatment decisions should be made in discussion with patients and that patients should be given a choice. But there is currently no evidence-based patient-centred information resource (or “guide to patient choice”) which could support patients to take a fully informed role in understanding their options for psychological therapies and discussing these with their GP. The aim of this consultation was to inform the development of a guide to choice in psychotherapy (specific to depression). It was funded by the University of Essex ESRC Impact Acceleration Account. This was a user-led consultation, intending to form part of a larger study to be conducted in collaboration with partners from the University. The conduct of the consultation was led by Alison Faulkner and Premila Trivedi on behalf of NSUN and Shaping Our Lives, both of which are user-led organisations, with the aim of starting with the voices, views and experiences of people with lived experience of psychological therapy for depression. Process: We used focus groups and individual interviews to help to identify the outcomes, evidence and benefits of psychotherapy most valued by potential clients/service users, as well as the barriers and the information that people would find useful before embarking on therapy. This is a first step: the consultation has informed a more detailed funding application for developing the guide. Findings: Engagement and drop-out with psychological treatment services in the UK could be improved with greater involvement, choice, flexibility, patient empowerment and better information. We think that a decision guide (or ‘Patient Decision Aid’) for people wanting psychological therapy for depression could support and enable greater involvement and choice and should be developed collaboratively with people with lived experience. Our consultation findings suggest that a decision guide for this purpose should be based on information and treatment outcomes prioritized by service users in order to support ‘personalised care’ and fully informed decision making. Read the report: Read and download the report as a pdf Read and download the report as a plaintext word document
What Do User-Led Groups Need (2020) The findings of research to understand what challenges user-led mental health organisations face, and to explore what might help user-led organisations delivering mental health support to meet their aims and sustain and develop their activities. Expand What Do User-Led Groups Need? Read the report: pdf version Read the report: MS Word version This report, by Mark Brown and Emma Ormerod, is the result of 19 interviews commissioned by the National Survivor User Network (NSUN) with community organisations and groups using lived experience to deliver mental health support in England. These interviews took place in August 2020. The objective of the research was shaped by NSUN’s role as a national network of user-led mental health organisations and its experience of delivering a micro grants programme to support user-led community groups and organisations to deliver mental health related activity in the context of the first national pandemic lockdown in 2020. The research looked to understand what challenges user-led mental health organisations face, and to explore what might help user-led organisations delivering mental health support to meet their aims and sustain and develop their activities. This report contains a number of observations from the interviews carried out and a number of testable hypotheses for future action. This work was funded by a grant from City Bridge Trust. Key findings: User-led organisations carrying out work to support the mental health of their communities are community organisations serving the needs of their communities and as such often have more in common with their communities than they do with statutory or large charity provided mental health services. They are from their communities, not additions to it. User-led organisations and groups carrying out work to improve the mental health of their communities can often be better understood as ‘under the radar’ or mutual aid groups than as replacements or adjuncts to NHS, local authority or charity services. User-led organisations and groups can feel that their target cohort is too specific to attract the attention of funders interested in whole community change, even when the size of the funds required to meet the needs of that cohort are minimal. Making a big change to a small number of people does not feel like an easy sell. User-led organisations and groups often have purposes or aims which are specific both to the needs of their community and specific to the improvement or support of mental health. The combination of these specific focuses can make the securing of useful advice and funds for activities frustrating. User-led organisations and groups vary in their requirements for resources and funds, but many struggle to secure core resources and funds to deliver what their community needs. Smaller user-led groups and organisations rely upon relationships to deliver their mission, both within their own group, with the people within their community they support and with their wider community. External pressure to move away from their core aims can put these relationships at risk. User-led groups and organisations are often doing what no other body or service is doing in their community. This direct support is a form of systems change, where local or national systems are currently failing to meet the specific needs of their community. User-led groups and organisations that have grown from racialised or marginalised community may define themselves and their lived experience in terms of their community experience primarily, even when their activities support the mental health of their community. User-led groups and organisations often exist at the hard end of the social determinants of mental ill-health and may define their mission more in terms of alleviating the results of those social determinants rather than in terms of theories of change related to the result of reducing negative social determinants. They are making change in the here and now. User-led groups and organisations delivering support and opportunities to improve mental health can feel outside bodies, including funders, do not understand what is specific about their work and the context in which it takes place and as such struggle to communicate the value of what they deliver. User-led groups and organisations may feel themselves to have few local allies or peers with which to share, discuss and develop ideas and partnerships, especially where the mental health elements of their work are not widely recognised as important within their wider community. 17th December 2020