NSUN network for mental health is an independent, service-user-led charity that connects people with experience of mental health issues to give us a stronger voice in shaping policy and services.

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Summary of project work

Projects/work areas

1. British Institute of Human Rights (BIHR)

NSUN was one of 24 organisations participating in the 2010-2013 Health and Human Rights Innovation project. Following this project BIHR was successful in securing funding for a further three years for the Care and Support: A Human Rights Approach to Advocacy project 2014-2017. NSUN was invited to be one of three partners. The focus of the work is to improve outcomes for people using services who have mental health and/or capacity issues. Three mapping and training sessions for NSUN staff and members were held in March. The proposal focuses on achieving better individual patient outcomes and broader organisational change through an approach of:

  • Human rights leads in partner groups based in several English regions, strengthened by network development and learning setts
  • A training and capacity-building programme, including  information support and testing of resources, for staff in partner groups
  • A training and capacity-building programme, including  information support and testing of resources, for service users at partner groups
  • Open access learning opportunities for local third sector groups
  • Dissemination, learning opportunities and forward planning for partners and local decision-makers

NSUN is also producing e-legal briefings explaining individual journeys through complaints systems and exploring the possibilities of taking legal action. A volunteer is leading this work.

2. Care Quality Commission – Mental Health Act Annual Report Advisory Group

NSUN has been a member of the Advisory Group since 2012 and was involved in the production of the 2011-12 report. NSUN was asked to have a formal role in facilitating service user input into the 2012-13 report and supported wider input and reference to service user led work such as the CPA and Recovery research with a recommendation included for all ‘detaining authorities and service commissioners to consider (the checklist) for use locally’ p38. NSUN presented at the report launch 29 January 2014 and continues to be a member of the Advisory Group. The next meeting is 6 May.

3. Commissioning

3.1. Primary Care Mental Health Leadership Programme

NSUN was invited to deliver sessions on the Birmingham and Cambridge (Birmingham University) and London (UCL Partners) cohorts. Four sessions were delivered on:

  • Service User and Carer Perspectives on Mental Health
  • Service User and Carer Perspectives on Quality in Commissioning
  • What service users want from commissioners
  • Project Presentations

3.2. Joint Commissioning Panel - Mental Health (JCPMH)

The Joint Commissioning Panel for Mental Health (JCPMH) is co-chaired by the Royal College of Psychiatrists and the Royal College of General Practitioners. It is collaboration between seventeen leading organisations including NSUN, that aims to inspire commissioners to improve mental health and wellbeing, using a values based commissioning model. The JCPMH has produced a series of guides, which provide a description of what a ‘good’ service configuration should look like, supported by scientific evidence, service user and carer experience, and case studies of best practice. NSUN facilitated the wider involvement of service users and carers in some of these publications, which are available on the JCP website.

3.3. Hackney Commissioning Support

Since 2011, NSUN was commissioned by Hackney’s council and primary care trust to facilitate discussions with mental health service users and groups within the City and Hackney area to advise, steer and eventually lead, on the commissioning of the voluntary sector services. NSUN worked with Hackney Social Care Forum (HSCF) who mapped and contacted existing service user led organisations in Hackney asking them to take part. NSUN facilitated five City & Hackney service user workshops 2012-2013 that led to the creation of the People’s Network in partnership with Social Action for Health. NSUN was invited by City and Hackney Clinical Commissioning Group to present a proposal to further develop City & Hackney Peoples Network. £12,000 was awarded to produce a Recovery Guide, support the People’s Network and facilitate wider involvement.

3.4. NHS England Strategic Clinical Network

NSUN negotiated a contract to provide advice and guidance around patient and public involvement for the Mental Health Clinical Commissioning Group leads across London.  The work includes attending the London Strategic Clinical Network meetings and the London CCG Mental Health Lead meetings and training on 4Pi National Involvement Standards to London CCGs.

3.5. North West London Mental Health and Wellbeing Transformation Board

The Board oversees the commissioning of mental health services for North West London and includes governance of the two mental health foundation trusts – West London Mental Health NHS Trust and Central and North West London NHS Foundation Trust. NSUN has been commissioned by the Board to recruit ‘experts by experience’ to establish an alliance of 32 advisors from each of the eight boroughs (Brent, Ealing, Hillingdon, Hammersmith and Fulham, Kensington and Chelsea, Westminster, Harrow and Hounslow). The alliance of people will be temporarily named the Mad Republic and will be supported by NSUN to ensure that the 4Pi National Involvement Standards underpin the project and are used as the quality assurance framework. Drawing from Values-based Practice and Values-based Commissioning, MAD Republic will collaborate to establish co-production at the individual, community , operational and strategic levels of commissioning and provisioning of non-stigmatising care and support for emotional wellbeing across North West London. Experience-based Co-design and Participatory Research will be used. NSUN will be working in partnership with the West London Collaborative to deliver this work. This involves gathering experiences from people who have experience of services and staff through in-depth interviewing, observations and group discussions, identifying key 'touch points' (emotionally significant points) and assigning positive or negative feelings. A short edited film is created from the interviews of all involved in service redesign. This is shown to commissioners, service staff and people with lived experience, conveying in an impactful way how people experience the service. Staff and people with expert lived experience are then brought together to explore the findings and to work to identify and implement strategies and activities that will improve the service or the care pathway. Participatory video offers an inclusive way to investigate emotional health and gives credence to ‘service user’ and/or ‘survivor’ controlled research with service providers and commissioners. It embeds a process that places control of representation in the hands of the represented.

Project deliverables include:

  • Establishing and supporting Service User Alliance Council to advise MHPB (Minimum of 3 per CCG Area) 
  • Service user and carer presence within the MHPB exercising advanced decision making at all levels.                             
  • NWL Creative Leadership Programme, evaluation and report.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                            
  • Experienced based Co-Design (EBCD) video report.  Demonstrable positive change in culture, ethos and diversity of service users and carers involved. 8 case study illustrations of 4Pi National Involvement Standards in practice in NWL.            

3.6. Values-based Commissioning (VbC)

NSUN was commissioned to lead a review and produce a report of VbC in the West Midlands. This was followed by a wider piece of work to produce a more accessible guide on VbC. A series of workshops (involving over 30 people) were held in Hackney, Leicester, Newcastle and Birmingham to support the development of the guide. The report Influencing Mental health Services: A guide to values-based commissioning was published May 2014. Further funding is being sought to build on the previous work with local commissioners and the service user expert reference groups. This will be mapping and tracking how the guide can be used in practice, development of case studies and working towards designing and delivering training in this area to affect system change.

4. Dancing To Our Own Tunes (DTOOTs)

The recommendations from DTOOTs form an important part of NSUN’s work and the charter and guidelines for partnership working (p17-18), have informed the 4Pi National Standards for Involvement. There is no one place where information about organisations, projects and activities that focus on the involvement of people from racialised communities is available. NSUN is developing a framework for mapping black and minority ethnic mental health service user involvement across England. Through this exercise, and in line with the Dancing to Our Own Tunes recommendations, we will:

  • Make available a clearer picture of the work that is underway in improving community mental health and influencing mental health policy.
  • Document the work of black and minority ethnic groups and organisations, acknowledging achievements, sharing ways of working and start a process of mutual learning and support.
  • Incorporate the learning into all work, creating a theory and practice of user involvement in mental health which truly reflects the diversity of viewpoints and ways of working.
  • Identify specific needs for capacity building and leadership development in line with NIP’s stated objectives.

5. Department of Health:

5.1. National Involvement Partnership: Involvement for Influence; Influence for Involvement

The NSUN led National Involvement Partnership (NIP) three year project, funded by the voluntary sector IESD grant ended March 2015. The 4Pi National Involvement Standards were formally launched at the AGM and Members’ event 29 January. Work will continue to promote them and obtain sign up from local and national organisations and bodies. Over 30 organisations have signed up to the standards to date. The main report and companion documents have been published and disseminated.

5.2. Department of Health (DH): Strategic Partner programme

NSUN is one of seven mental health charities that advise the DH on policy and disseminates DH information. In the 2015-2016 programme, NSUN is being funded to work on two projects that focus on involvement and influencing.  

  • Integration: Mapping emerging areas of positive practice in integrated care linking primary and secondary and mental and physical health effectively.  Creating a visionary benchmark of the elements that should exist in positive practice.
  • Mental Healthwatch: Dissemination of the Mental Healthwatch handbook. Sign up of over 150 individuals and 50 local Healthwatch. Three Mental Healthwatch training sessions have been delivered to the East Midlands Healthwatch regional network.

6. Disability Action Alliance

NSUN is a member of this cross sector network of organisations and a member of the steering group. The Disability Action Alliance was set up by the Office for Disability Issues (ODI) and brings together disabled people’s organisations with organisations from the public, voluntary and private sectors, to work in partnership to deliver actions at a national and local level based on the priorities from the 2013 Fulfilling Potential: Making it Happen report. NSUN chairs the Commissioning sub-group that aims to encourage commissioners to ‘commission for inclusion’ – improving awareness and understanding of service commissioners in involving disabled people in developing and commissioning services, and improving opportunities for DPULOs to win service contracts – on a national and local scale.’  This is being progressed through working with the Commissioning Academy and the Public Service Transformation Network (PSTN). Two sessions are available for delivery of training with the Commissioning Academy and a review will be undertaken of the PSTN resources to identify possible gaps in information and what we can add.

7. Healthwatch England

NSUN facilitated a focus group and wider consultation for Healthwatch England’s special Inquiry into Unsafe Discharge, looking into what happens to people when they are discharged from a hospital, care home or secure mental health setting. The focus group gathered views from people who self-harm, are at risk of harm and feel suicidal to hear about their experiences of discharge and learn how things could be improved. NSUN also promoted and attended the Healthwatch England Unsafe Discharge National Enquiry Listening event. Mental Healthwatch training has been delivered in negotiation with Healthwatch England to regional Healthwatch networks.

8. Involvement Workers’ Group

The Involvement Workers’ group started in September 2009 and is designed to provide peer support and input for involvement workers with lived experience of mental distress. Fourteen people who come from across the country are members of the group with a regular attendance of 6 at the quarterly meetings. A review of the group was undertaken at the end of last year to determine the feasibility of the group and to what extent t was meeting people’s needs. A main theme for respondents was the importance of the group as a channel for sharing information, knowledge and expertise, issues and concerns, helpful practice, successes and dilemmas. The national perspective was also valued and the group is recognised as a useful platform for raising issues at a strategic level. Most importantly, the support and decrease in isolation and meet with other involvement workers with lived experience of mental distress and of the mutual understanding which stemmed from this shared experience.

9. Interrelate

NSUN is a member of Interrelate, which is an international coalition of mental health service user / consumer leader organizations and individuals. It was launched in Canada in 2007 at the International Initiative for Mental Health Leadership. Interrelate connects members from 9 different countries who share a wealth of expertise in mental health, gained either through lived experience, education, work or often a combination of all three. Regular skype meetings are held every month and every 16 months, Interrelate members participate in the IIMHL international exchange along with other mental health leaders from all over the world. In 2014 IIMHL was in Manchester and NSUN and Together jointly hosted Consumer Leaders and Peer Support exchange and organised the Service User Leadership and Peer Support Festival.

10. Involvement Payments

Lankelly Chase has provided some funding for NSUN to work with Judy Scott, an independent consultancy in the current incapacity based benefit system and future Universal Credit together with employment law for:

  • organisations that support people who are moving from incapacity benefits into work
  • public agencies that involve service users and carers in health and social care services, research and training

An updated Involvement Payments policy will be produced and made available to members and stakeholders who are affected by payment for involvement. This will include the proposed changes to the the treatment of reimbursed expenses and notional earnings for involvement where people are in receipt of Incapacity Benefit or Carer’s Allowance - delayed from April 2015 to 1 July 2015. For other benefit groups reimbursed earnings for involvement are now ignored and notional earnings not applied where involvement is with research, charities, education or the DWP. 

11. Members’ Campaign

NSUN is supporting individual members to plan and organise their own campaigns based on their personal experiences of using and needing mental health services. The first Member’s Campaign was launched at the end of 2014. Hannah MacDonald developed the ‘Safe wards: call for experiences on psychiatric inpatient wards’ campaign. NSUN supported Hannah to prepare and present on ward safety to the West London Collaborative in January and is collating responses for a report in May. A call for a new Members’ Campaign will go out at the end of May.


12. Members’ Manifesto

NSUN’s manifesto draws on Soap Box presentations and feedback from our AGM and Members’ event (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. The manifesto calls on the next 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.

13. Mental Health Alliance

NSUN continues to be a member of the Mental Health Alliance, which is a coalition of  organisations from across the mental health spectrum working together to advocate for fair implementation of the Mental Health Act in England and Wales. Last year work included lobbying for a review of the Mental Health Act Code of Practice and contributing to a collective response on the Supervised Community Treatment chapter. NSUN produced its own response to the Mental Health Act (1983) Code of Practice consultation. Current work is focusing on future Mental Health Act reform. NSUN is a member of the working party which is planning the potential of an Alliance survey on future reform of the Mental Health Act – a visionary piece of work exploring the future vision for a Mental Health Act in England and Wales.

14. Mental Health and Housing

The Mental Health Provider Forum (MHPF) commissioned NSUN to support the Mental Health and Housing / Housing Models: Examples of Innovative Practice and Design project via the National Mental Health and Housing Forum. NSUN organised and co-facilitated three focus groups in March with local user-led groups in Newcastle, Hertfordshire and Hackney to ensure that the views and experiences of people who have experience of supported living/housing, influence and support development of responsive solutions and innovations. NSUN produced reports and presented findings at the National Mental Health and Housing Forum meeting 18 March.

15. Mindapples

NSUN is working with the University of York on a study funded by Comic Relief ‘Outcomes of mental effectiveness training for people with experience of using mental health services’. NSUN was invited to recruit people who currently access mental health services (or have accessed them in the past) to take a course delivered by MindApples on wellbeing, mental effectiveness and resilience. 50 people were recruited to take part in one of the two programmes (24 sessions). Mindapples is a social enterprise which promotes mental health and well-being. Mental Effectiveness at Work is a training programme designed by Mindapples which aims to help people to look after their minds and become more effective in their working lives. It will be adapted for people with experience of using mental health services with the aim of improving well-being, self-efficacy, resilience and knowledge of mental effectiveness.

16. Ministerial Advisory Group – Mental Health (MAG)

NSUN has maintained a place on the main group following a review and continues to work with the five service user and carer representatives. An open meeting was held in May to enable other members to meet the representatives in advance of the summer MAG meeting and agree the key messages. The last meeting of the MAG was held 26 February and the future of the meeting will be determined after the general election by the new government.

17. National Development Team for Inclusion (NDTi)

NDTi was successful in securing a bid for their Access to Advocacy project. NSUN was asked to provide some promotional services to distribute a questionnaire and establish an advisory group. NSUN has also been asked to be the mental health partner for the ‘Research for Impact: Disabled people programme, which will offer funding of £5 million for up to five years with a focus on strategies for independent living and a greater voice for disabled people. NSUN is also a partner on the Mental Health and Co-production project funded by Esmee Fairbairn. The aim is to demonstrate increased understanding of coproduction in the mental health sector, particularly amongst those responsible for service delivery, and through use of new materials, new evidence that people who use mental health services feel more involved in decision making.  A series of three coproduction workshops will be designed and delivered to develop materials. This work will model coproduction in its delivery. After adapting the framework in response to this, market and promote the framework in the mental health field. We envisage particularly engaging with the NHS Confederation’s mental health network, the Association of Directors of Social Services and a range of user organisations.

18. North East Together (NEt)

NEt is the network for people with lived experience of mental distress living in the North East of England. The network provides the opportunity to meet for support, to exchange information and come together to influence what happens in mental health services across the region. NSUN has supported networking across the North East since 2009. A positive and respectful working relationship has been established and provides a strong link to local experiences. NSUN will become the formal host of NEt from 17 May which includes supporting the Co-ordinator Mish Loraine. NEt set up the Welfare Reform Action Group (WRAG) and created a Mental Health Manifesto that supports the national NSUN Members’ Manifesto.

19. Parity of Esteem: DH Stakeholders Group and BACP Call for Evidence

The DH Stakeholders Group was established February 2014 to inform the work of the NHS England Programme Board on Parity of Esteem. The Parity of Esteem programme has been developed to co-ordinate and support the NHS England teams who are contributing to delivery of the NHS Mandate ambitions on parity of esteem. The programme is comprised of five work-streams. This programme aligns with key accountabilities from Government, including the Mandate, the mental health action plan and the mental health crisis care concordat. The five programmes are as follows:

  • Data, information and intelligence
  • Development of commissioning skills and capabilities (including financial incentives)
  • Improving clinical services
  • Improving crisis care
  • Improving physical health for those with serious mental illness

NSUN also promoted and contributed to the British Association for Counselling and Psychotherapy (BACP) call for evidence: Psychological Therapies and Parity of Esteem.

20. Peerfest 2014/2015

NSUN led the Creative sub-group for the 2014 event in November and had a stand. The event was attended by 150 people and showcased a range of peer led initiatives around the country. Mind is considering tendering out the planning and delivery of Peerfest 2015.

21. Peer Led Peer Support Collaboration

NSUN is a member of a seven way partnership that includes; Afiya Trust, Mental Health Foundation, Mental Health Providers Forum, Mind, St Georges University and Together. The partnership is currently seeking funding to develop grass roots work in identifying the key characteristics of peer support and protection against professionalisation. The collaborative was established to forward the implementation of peer support from the perspective of people with lived experience.

  • Vision: To preserve and promote authentic peer led peer support for all
  • Mission: To ensure peer led peer support is a leading force in mental health policy and practice

A joint statement has been produced setting out the core principles. The collaborative continues to meet on a quarterly basis.

22. Peer2Peer

NSUN has supported the development of Peer2Peer, initially as a member of the steering group that brings together service user led groups who provide peer support and peer brokerage. Following a proposal to NSUN about the future hosting of Peer2Peer from the chair, NSUN has become the formal host of Peer2Peer. A new website has been launched and further funding is being sought.

23. Restraint and Restrictive Practice guide

NSUN is working with Mind to produce a short guide for people with lived experience who want to be involved in influencing local mental health services’ approach to physical restraint and other restrictive practices. Over the last year, new national guidance ‘Positive and Proactive Care: reducing the need for restrictive interventions’ has been published, the Mental Health Act Code of Practice has been updated along similar lines, and NICE (the National Institute for Health and Clinical Excellence) is updating its guideline. NSUN facilitated the recruitment for the Expert Advisory Group and two focus groups with people who have experience of being restrained or subject to other restrictive practices such as seclusion.

24. SCIE Co-production Network

NSUN is a member of the SCIE Co-production Network, which meets twice a year with additional project and programme meetings as and when needed. The website launched on is an online source of advice for adult social care. The next SCIE Co-production network meeting is being held in November.

25. Service users’ experience of recovery under the 2008 Care programme Approach

The report was launched February 2013. It describes how effective service users find the 2008 Care Programme Approach in promoting recovery as they understand it. The report includes a checklist of good practice recommendations for professionals. This has been printed and promoted separately as a follow up piece of work. At the North East London NHS Foundation Trust (NELFT) Research and Development 12th Annual Open Day our poster submission won second prize. A Checklist of Good Practice and Good Practice Principles for General Practitioners has been printed separately for easy reference and use. The report and good practice guidance continues to be promoted. The Checklist of Good Practice was recommended in the Care Quality Commission Mental Health Act report 2012/2013.

26. Survivor Researchers’ Network (SRN)

NSUN became the host for SRN following a request from the Mental Health Foundation and the agreement of the existing members. A survey was conducted with the people on the original membership list and NSUN members who expressed an interest in research. Over 200 members expressed an interest in the continuation and development of the network and 61 people completed a survey. The survey explored the reasons for being involved in research, the range of experience and skills people had, areas of interest and the support and expectations of SRN. A report of the findings was considered by a working group and aims and objectives of the network were agreed. The aim of SRN is to provide mental health service users and survivors involved and interested in research with a forum for networking, sharing information and supporting each other, to set standards and promote good practice in user/survivor research in mental health. Service user research is under-resourced and under recognised. NSUN has now published three significant studies over the last three years: Dancing to our own tunes: reassessing black and minority ethnic mental health service user involvement, A review of values-based commissioning and the Service-users‘ experience of recovery under the 2008 Care Programme Approach. Increasingly we are being approached by research organisations and educational institutions about potential joint working

Business as Usual

Office management and finance

NSUN has a full time Office Manager and Administrator and some office support from volunteers. The back office and administration, governance, human resources, finance and fundraising supports the day to day running of the organisation.

Networking and Communications

NSUN has a Communications Co-ordinator who manages the website and produces the weekly ebulletins. All staff attend meetings and undertake networking activity on an ongoing basis. The team attended over 70 meetings and events over the last six months. 82 meetings and events were organised by NSUN and 27 presentations delivered to an estimated combined total of over 1700 people.

Consultants

NSUN has a number of service user/survivor consultants that support core business and project work as and when required and/or for their particular expertise.

Approaches and frameworks

NSUN has established a number of theoretical and practical approaches to all work undertaken.

  • 4Pi National Involvement Standards
  • Values-based Commissioning
  • Experience-based Co-design
  • Participatory and Qualitative Research (post-structuralism)
  • Working with marginalised and mulita-disadvantaged communities