National Survivor User Network Together we are stronger!
National Survivor User Network
Together we are stronger!
By Emma Perry
National Survivor User Network (NSUN) is a service user-led mental health charity. Established in 2007, NSUN was created to give survivors and users of mental health services a stronger voice in shaping mental health policy and services. Our vision is to create a strong, sustainable and influential network of individuals and groups of mental health service users and survivors who are communicating and supporting each other across England. We are a grassroots organisation with over 4,000 individual and 600 group members who are linked with weekly e-bulletins, social media, training and research.
The services we offer stem from our three core aims: networking, capacity building and involvement and influencing. Within these areas our activities include:
Facilitating active links between service user groups and individuals.
Brokering access to service users in order to inform policy makers.
Training and developing individuals and service user groups in leadership, organisational skills and campaigning.
Organising and facilitating community events.
Operating special interest sub-networks such as the Service User Involvement Workers Peer Support Development Group and the Survivor Researchers’ Network.
Our most recent work has included the development of a Members’ Manifesto, the 4Pi Standards for Involvement, and supporting campaigns led by individual NSUN members.
Our manifesto draws on feedback from our AGM (January 2015), the top ten list of issues identified by members in our annual survey (2013 and 2014), and responses from members to a direct request asking what should be in NSUN’s manifesto.
Mental health care accounts for only 13% of the NHS budget and despite a growing need for services funding has been cut for three years in a row. There have been many calls for the government to increase funding for mental health services and promote "parity of esteem" – the legal principle by which mental health is given equal priority to physical health.
Investment in mental health services is vital, but we also believe that “parity of esteem” should not simply apply to the equal treatment of conditions but to the equal treatment of people, which means paying attention to their views.
Across the country, our members continue to report experiences of a mental health system where people face an ongoing battle to exert control and to establish and exercise basic rights.
As such, our manifesto calls on the government to:
1. Make the principle of ‘nothing about us without us’ a reality through effective and meaningful involvement in all aspects of our lives.
2. Reform the Mental Health Act 2007 to make it fully compliant with human rights legislation and ensure that people with lived experience of mental distress are not harmed or abused by restrictive practice.
3. Provide alternatives to medication, and reflect the social model of disability, in better person-centred support.
4. Ensure access to timely and appropriate resources and support.
5. Meet the needs of people with lived experience of mental distress from marginalised communities.
6. Address the injustice and harm that have been caused by cuts to public funding and changes to the benefits system.
7. Recognise and invest in research and training initiatives that are service user-controlled/user-led.
Following the publication of the manifesto we are currently in the process of developing ways in which we can take these messages forward.
National Involvement Partnership: 4Pi Involvement Standards
The 4Pi National Involvement Standards have been developed by the National Involvement Partnership (NIP) project, a partnership of orgnanisations hosted by NSUN. The idea of the project was to ‘hard wire’ the service user and carer voice and experience into the planning, delivery and evaluation of health and social care services.
The 4Pi National Involvement Standards have been developed to be a framework around which to base standards for good practice, and to measure, monitor and evaluate involvement. The framework has been developed by mental health service users and carers and has been designed to enable services, organisations and individuals to think about how to make involvement work well.
Meaningful involvement for us means involvement that makes a difference: it should improve services and improve the mental health, wellbeing and recovery of everyone experiencing mental distress. Good involvement should include the following:
Principles: Meaningful and inclusive involvement depends on a commitment to shared principles and values. This includes valuing the contribution of service users and carers equally to those of professionals.
Purpose: The purpose of involvement should be clear and clearly communicated to everyone involved in the activity as well as the wider organisation.
Presence: A diversity of service users and carers should be involved at all levels and all stages of an organisation or project. The people who are involved should reflect the nature and purpose of the involvement. Service users and carers should have the opportunity to be involved separately as they may have different priorities.
Process: The process of involvement needs to be carefully planned in terms of issues like recruitment, communications, being offered appropriate support and training and payment, so that service
users and carers, including those from marginalised communities, can get involved easily and make the best possible contribution.
Impact: For involvement to be meaningful, it needs to make a difference to the lives or the experiences of service users and carers.
We are asking organisations to support the standards and help to ensure effective involvement that leads to real improvement in our experiences of services and support. If your organisation would like to support the standards, please call the NSUN office or download the Statement of Intent on our website.
Part of our current work has been to support the campaigns of individual NSUN members. For example, Akikur Rahman is working on a collaborative film project in London. He is looking to involve young people with experience of post traumatic stress after being involved in or witnessing a traumatic experience such as gang warfare, home abuse, street violence, racial/religious abuse or attacks.
NSUN member Hannah MacDonald has recently conducted a survey into 45 people’s experiences of inpatient wards across the country. She found that 67% did not feel safe on the ward and 68% had experienced stigma and discrimination from staff members. Over half the respondents reported that their experience on the ward had been negative. Participants recommended that staff needed to spend more time talking with and listening to people. They also highlighted a need for single sex wards, better staff training, more activities and talking treatments. Hannah’s work contributes to a growing body of work that calls for a radical culture shift in relation to inpatient care and we hope that this will inform a more extensive piece of qualitative work on this topic in the future.
You can join NSUN as an individual or a group and membership is free. If you want to find out about our manifesto, 4Pi involvement standards, member campaigns, or any aspect of our work you can visit our website: www.nsun.org.uk
Or you can contact us directly:
Telephone: 0207 820 8982
This article originally appeared in News & Views August 2016.