WELCOME TO ALL FELLOW CAMPAIGNERS for DISABILITY RIGHTS - a pan disability blog connecting my work with, EQUAL LIVES, the National Survivor User Network (NSUN) and the Survivor History Group.

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Thursday, 15 July 2010

Starting to lay NSUN Myths

This posting is for those interested in NSUN's activities and status on the Survivor History Discussion Forum.

One of NSUN's values is complete transparency. In a management committee meeting soon after I joined in November 2009, discussion about the proposed new website included decisions that we would publish everything, including financial accounts on the new website, the crap website we have now (and no, I don't know its origins) doesn't satisfactorily allow this.

The company building the new website has dragged its feet scandalously and expensively (£12,000) and they still haven't delivered (I voted against this company and the steep expenditure but was outvoted).

So I think the best thing to do to start with is to post Sarah's (Yiannoullou - our one and only manager) report to funders here.


The work of NSUN has continued to expand since October 2009. There has been 50% increase in membership and two Network publications have been produced, providing updates on the progress of the network and information and features on members and current issues. NSUN is now incorporated as a company and has completed the registration process with the Charity Commission. We are currently waiting for a Charity number to be issued.

In the last quarter NSUN has had some staff changes and recruited new management committee members, further details are included in the body of the report.

Partnership work has resulted in two significant developments, continuation of the National Mental Health Development Programme partnership contract and the Department of Health Strategic Partner Programme partnership. The contracts have a combined value of £100,000. NSUN also went through to the second stage of the City Parochial Fund application process and has other applications in progress ready to be submitted when the Charity registration is complete.

It is encouraging to see that NSUN is being recognised by others as a credible and valuable organisation.

As the hosting arrangement with Together nears its final stage we are confident that NSUN is ready to meet the challenges and take on the responsibilities of an independent organisation.


1.Management Committee Page 1

2.Strategic planning Page 2

3.Independence Page 2

4.Finance and fundraising Page 2

5.Staffing Page 4

6.Venue Page 4

7.Membership and capacity building Page 5

8.PR and website Page 5

9.Special projects Page 6


BME report

Forensic mapping

Regional development

Service user training network

Service User Involvement Workers Peer Support and Development Forum

10. Project and partnership work Page 8

11.Monitoring and evaluation Page 8

12.The months ahead Page 8


1. Income and Expenditure report

2.NSUN budget

3.Evaluation report January 2010 – March 2010

1Management Committee

NSUN has four new Management Committee members who were recruited by the Chair and an independent panel between October 2009-March 2010. The membership of the Management Committee will be continually reviewed to ensure diversity and geographical representation requirements are met. The Management Committee meet every two months and a Finance Subcommittee (The manager, Treasurer and Operational Accountant) are meeting monthly as from 17.3.10.

Current Management Committee members:

Tina Coldham – Chair

Anne Beales – Treasurer

Carolyn Anderson

Alistair Cameron

Mike Cox

Sue Haworth

Clare Ockwell

Kath Lovell

Ian Muhammad

Angela Hill stepped down December 2009 due to personal commitments.

New members have completed a skills audit and signed the Conflicts of Interest paper.

Information and guidance has been shared with the Management Committee to ensure roles and responsibilities are understood when NSUN is fully incorporated.

2 Strategic planning

The Management Committee developed a strategic plan in 2009 against the Mission and Aims in the original structure and the Comic Relief bid. Costs associated with activity were included at the suggestion of the funders in April 2009.

The plan is currently being reviewed with Pilotlight who are supporting NSUN’s business planning work. NSUN has been allocated three ‘Pilotlighters’ who are professionals from the private sector matched with us following the assessment of our needs.

A development day was held with NSUN staff and Management Committee members 16.2.10.

3 Independence

The Management Committee formally decided that a charity limited by guarantee would be most appropriate and relevant to enable NSUN to fulfil its Mission, Aims and Objectives. Through LawWorks, an independent charity that facilitates the provision of pro bono legal advice, the services of Gibson, Dunn & Crutcher LLP were secured. The Memorandum of Articles and Articles of Association have been drawn up.

NSUN is now a registered company. Company number: 7166851

Charity registration has been applied for and we are waiting for a Charity number to be issued.

4 Finance & Fundraising

4.1 Financial management

The results for 2009 project a carry forward surplus of  £59,264 that will go towards financing the budget for 2010. The budget for 2010 shows a balanced budget.

Appendix 1: NSUN Income and Expenditure report

Appendix 2: NSUN budget

Soka Kapundu has been employed as an Operational Accountant for 2 days a month

His ongoing role is to ensure:

SAGE computerised system is set up.

Financial systems set up and are implemented fully and the financial records are accurate.

Training the Administration and Finance Coordinator to prepare her for the transference of the financial systems and processes from Together and for her to administer the SAGE system on a day-to-day basis.

End of year reconciliation of the petty cash accounts.

Work with staff to ensure that year-end accounting procedures are carried out including bank reconciliations, balance sheet reconciliations and liaising with any auditor as required so as to ensure that statutory requirements are fulfilled.

Transferring all NSUN financial records and reports

Producing financial accounts separate from those of Together.

Amma Djan was appointed as Administration and Finance Coordinator 1.5.08. Amma left NSUN 26.2.10. Mulimba Namwenda has been appointed as the temporary Admin and Finance officer.

The financial tasks of this role include:

Processing and entering financial data using the SAGE system

Working with Operational Accountant to produce income and expenditure reports for funders and the Management Committee including forecasts and revisions

Working with Operational Accountant to carry out balance sheet reconciliations, and complete year finance reports and liaise with the auditors

Managing the petty cash account

Placing orders with suppliers, recording and paying invoices

Raising invoices

4.2 Financial separation from Together

NSUN has negotiated a staged process with Together to move towards complete financial independence. A schedule for the transfer of funds has been agreed. 70% of NSUN funds will be transferred 1.4.10, then 20% 30.4.10 with the final payment being made 30.6.10.

All invoices dated up to 1.4.10 will appear on Together’s ledger. A detailed transaction list will be provided by the end of the first week of April and bank reconciliation is required by Together by 21.4.10.

4.3 Fundraising and business

4.3.1 The Management Committee identified the following priority areas for fundraising last year:

Capacity building

Regional development

Specialist areas e.g. forensic; BME; young people

Promotion of NSUN to a wider audience

Communications and membership management

Research into training needs of users/ survivors

The Fundraising Strategy has been reviewed and updated.

NSUN is submitting bids, tenders and/ or currently negotiating grants from potential funders ranging from national mental health agencies through to the private sector on the understanding that these will contribute considerably to core funding.

4.3.2 Disappointments: A joint tender with the Mental Health Foundation and Open Minds for service user involvement work/networking in the London Borough of Newham and two funding applications for BME work (Rayne Foundation and The Equality and Human Rights Strategic Funding Programme 2009/10) have been unsuccessful.

4.3.3 Successes: Since October 2009 we have attracted £105,000 of business.

The service user and carer involvement contract with the National Mental Health Development Unit (NMHDU) will continue into 2010-11. NSUN is the lead organisation of a coalition of organisations that includes; Afiya Trust, Attend, Equalities National Council, Mental Health Foundation, Social Perspectives Network, Together. The contract is estimated at a value of £80,000.

NSUN is one of the partners that joined the successful coalition (led by the Mental Health Provider Forum) that applied for Department of Health Third Sector Strategic Partner Programme for 2010-11. Each partner will receive £15,000 over 2010/11.


NSUN was asked by the Mental Health Foundation to lead on a piece of pan London service user led research ‘Exploring what role service users with experience of the Care Programme Approach think CPA can play in supporting Recovery’. This contract has a value of £10,000.

NSUN reached the second stage of the City Parochial Fund application process. The decision has been deferred for further information to be gathered on the following:

The links of the regional work into the overall strategy of NSUN

Additional evidence of the value of existing networks

The internal capacity of NSUN to deliver the work

Further applications (Esme Fairbairn, John Ellerman, Santander Trust, Lloyds TSB, Network for Social Change, Lankelly Chase) are being prepared for NSUN to apply using its own Charity number.

5 Staffing

A full staffing review will be undertaken as NSUN becomes independent. As the work of NSUN increases the demands on time and levels of expertise have increased. The communications work is the area that needs the most immediate attention.

A supervision structure is in place and other development opportunities are arranged in line with responsibilities and job roles, such as training, action learning sets and coaching.

5.1Staff contracts

Sarah Yiannoullou was recruited as the permanent full time NSUN Manager 2.3.09.

Amma Djan was appointed as Administration and Finance Coordinator 1.5.08. Amma has left NSUN 26.2.10 to go travelling.

Mulimba Namwenda has been appointed as the temporary Admin and Finance officer. When full independence from Together has been finalised the post will be advertised for a permanent appointment.

Phil Partridge was appointed as the NMHDU Project Coordinator7.12.10 on a nine-month contract. This post will continue along with the NMHDU contract to April 2011.

5.2 Consultancy contracts

Soka Kapundu has been employed 2 days a month as the Operational Accountant since April 2009.

Showket Ali provides IT support on a sessional basis.

Rachael McGill provides fundraising advice on a sessional basis.

Dorothy Gould facilitates the Service User Involvement Workers Peer Support and Development Group every two months.

6 Venue

The Afiya Trust continues to sublet office space to NSUN. The arrangement continues to facilitate opportunities for joint working. The Afiya Trust is currently reviewing their accommodation arrangements and NSUN will be included in any decisions regarding change of premises. NSUN will be interviewed by the accommodation consultants, who have been charged with assessing the needs of Afiya and partner organisations interested in sharing premises. The proposal is for a community hub model where a number of groups and organisations would share resources and back office functions.

7 Membership & capacity building

7.1 Since October 2009 membership on the NSUN web-based database has increased by 66% from 341 to 516 members. Regional membership in the South East and North East adds another 300 to this figure. NSUN is looking at ways of estimating its reach beyond the signed up members as groups that are counted as one member on the database may (or may not) disseminate NSUN information to their respective members.

A membership recruitment plan has been drawn up to address how we are aiming to increase the membership, by when and by how much, this will be implemented alongside the website development.

7.2 Hard copies of the second Network publication have been sent to all exiting members and contacts and are being used as a recruitment and promotion tool. Members were invited to provide profiles on their work and contribute to the main feature story.

7.3 The website is now populated with an increased number of template documents and links developed in response to requests and enquiries and also examples of good practice people have shared with us. The sharing of information will be a function built into the redesigned website.

7.4 Visits are planned on a regular basis (a minimum of one per month) to ensure existing members and potential members have face-to-face contact.

Talks and presentations have continued to; raise the profile of NSUN, strengthen relations with existing members and recruit new members, these include:

BME Leadership programme participants

HUBB – Havering Service User Group

Involving Essex – Essex Service User Group

Dancing To Our Own Tunes Planning event

London Development Centre – Service Users Reference Group

New Beginnings – City and Hackney Service User Group

Mental Health Providers Forum – Service User Reference Group

Oldham Users Forum

Poole Mental Health Forum

SlaM Changing Minds programme participants

Stand To Reason

SUTRA (Service User Training and Research Association)

Time To Change/Open Up

Users In Partnership – West Midland service users network


7.5 E-newsletters and e-bulletins are used to disseminate; information that members and other organisations want to share, events and conferences, funding opportunities and current policy developments. This has also included requests for involvement in projects and consultations from organisations, for example:

ADAPT: Action for Dignity and Privacy in Treatment




Care Quality Commission

Department of Health


Hearing Voices Network

London Development Centre

Medicines and Health Products Regulatory Agency

Mental Health Provider Forum

Mental Health Foundation


National Mental Health Development Forum

Patient Opinion

Sainsbury Centre

Shaping Our Lives

Time To Change


World Health Organisation European Project

8 Public Relations and Website development

8.1 The Management Committee is aware of the need to cater for people who do not have access to the Internet on a regular basis if at all.

The NSUN hard copy publication Network was produced Summer 2009 and Spring 2010 and sent to all members and contacts.

8.2 The bi-monthly e-newsletter is sent to all members and contacts and a weekly/fortnightly e-bulletin is sent with more current information and immediate news and announcements.

8.3 The leaflet is being redesigned to reflect where the network is now and provide a clearer picture of what the network is and how to join. Content and design is being agreed so it can be printed with the new Charity number.

8.4 In late 2008, early 2009 the updated website improved the ease of use and quality of content. Positive feedback has been received however the functionality and capability of search options on the website is limited due to improvements being made on the original site and not redesigned.

8.5 The redesign of the website is now going ahead following a thorough consultation period. Options on approach and website design companies have been explored before agreeing a contract with Tic Toc. Recommendations from the Communications Strategy, formal feedback via the communications questionnaire and informal feedback from visitors to the site have contributed to the design brief being drawn up and sent to prospective website designers. This included ideas and information about the various ways the website can become more interactive for members and include consultations; feedback on national policy as well as our own organisation; an active ongoing invitation for ideas, useful documents, good practice, sophisticated search and link options etc. NSUN is now in the scoping stage of the project and the estimated date for the new website to go live is May 2010.

8.6 Conferences/events

NMHDU events

NSUN organised the Service Users event 1.2.10 and a Carers event 11.2.10. Follow up events are planned for May 2010.


A second joint conference with Pavilion was held in Manchester 19.11.09 following the same format at the first held in March 2009.

Pavilion offered 10 free places to users and NSUN subsidised 20 places plus expenses and subsistence. A second joint conference with Pavilion is being held in Manchester 19.11.09.

Afiya Trust

NSUN supported 3 regional events with the Afiya Trust and facilitated workshops at each of the events. This was an ideal opportunity to promote the network through local BME networks and communities, strengthen relations and recruit new members. The events were held in London 23.9.09, Liverpool 30.9.09 and Birmingham 1.10.09 and were themed around the New Horizons consultation.


NSUN facilitated a workshop at Together’s Personalisation event 18.11.09 in partnership with the National Mental Health Development Unit.

World Class Mental Health Commissioning 2009 - Making an Impact?

NSUN presented at the event and ran a workshop 19.10.09. The focus was on the need for standards and guidance for involvement in commissioning.

9 Special Projects

9.1 BME Report

The “Dancing to our own tunes report:: Reassessing black and minority ethnic mental health service user involvement” was launched 24.3.09.

Catch-a-Fiya was commissioned to take forward the recommendations in the report. A planning event was held 8.7.09 and a Steering Group has been set up. The first meeting of the TOOT (To Our Own Tunes) Steering Group took place 21.9.09 and subsequent meetings have been held.

Members of the steering group come from Leeds, Bristol, London, Milton Keynes, Brighton and Hove, Manchester and represent the issues of different communities including Chinese, Asian, African, Caribbean and European. Members are paid a consultancy fee for the work and travel is reimbursed. NSUN and Catch-a-Fiya are working on joint funding applications to continue the work.

The work is on target against the original goals set at the beginning of the 12 months. The partnership is working well and the Charter and Business Plan will be presented at the final steering group in May.

9.2 Forensic Mapping exercise

Women in Special Hospitals (WISH) have a project called VAST – Voices> Actions> Solutions> Together which aims to influence a range of policy in practice. WISH has developed a data collection instrument to find out what mechanisms are in place for user involvement in special hospitals and to gain information about how they impact on clinical governance, policy and practice. NSUN commissioned WISH to undertake a comprehensive information gathering and analysis consultancy on the current situation in order to provide an evidence base for this work. Unfortunately progress has been affected by staff absence within the organisation. This work is being reviewed with WISH to decide if completion is possible or we look for another organisation. We have assurance from WISH that the analysis will be completed during April as the CEO is directly responsible for this work now. Tina Coldham the NSUN Chair, and the WISH CEO Joyce Kallevik, will be meeting very soon to discuss the report format and to discuss opportunities to forward the report recommendations.

9.3 Regional networking

North East

NSUN agreed a one-year contract with Mental Health North East 20.9.09. Membership is currently 200. A regional event is planned for 30.4.10 following 3 sub-regional meetings in March 2010. An application to the Northern rock Foundation and other local sources are being discussed with local partners. The report from the region December 2009 stated ‘visibility and awareness of NSUN has increased dramatically’

South East

NSUN agreed a two-year contract with Canterbury and District Mental Health Forum 1.6.09. Media Action Training and regional events are planned for 2010. Additional funding is being sought to sustain the work beyond May 2011.

West Midlands

Discussions have not progressed since October 2009 due to local issues and staffing difficulties with the lead organisation Users In Partnership. This will be approached again in the coming months when appropriate to those based locally.

North East

Following visits and the event in Manchester at the end of 2009 ideas and views on regional network have progressed in this region. Potential funding sources are being researched and key people will be brought together to explore possibilities of partnership working.


A number of partnerships and proposals have formed the basis of pursuing a pan London network. This has included Social Perspectives Network approaching NSUN to support he City Parochial Fund project work engaging BME and LGBT communities and personalisation across London, the South London and Maudsley Foundation Trust Changing Minds programme that works across 20 areas across London (Well London funding), the demise of the London Development Centre Service User reference group and individual requests for strategic coordination and Leadership training. NSUN has applied to City Parochial Fund for funds to coordinate this work and create an infrastructure that would service the networking activity across London.

9.4 Service Users Survivors Training Network

Discussions have progressed with the existing Service Users Survivors Training Network (SUSTN). A training audit will be undertaken to inform priority areas. The NSUN manager attended the UKAN AGM 1.9.09 and the SUSTN event 9.9.09 to discuss how the work can be developed in partnership, then facilitated a meeting 27.10.10 to discuss NSUN hosting the SUSTN website and undertaking a national training audit. A proposal has been submitted by Developing Partners. Funds need to be identified to take this work forward.

9.5 Service Users Workers Peer Development/Support Forum

At the request of members NSUN did further research into the value of a national forum for people who have lived experience working in service user involvement roles. Following the initial interest a questionnaire was sent out asking what people wanted from such a meeting. The first meeting was held 29.9.09. There was strong agreement that the group should continue on a two monthly basis. A meeting was held 10.2.10 and another is planned for 15.4.10. Issues to date

Funding is being sought to continue this support network. HASCA has provided free meeting space at the Kings Fund.

9.6 Peer2Peer

Service user led groups and organisations that are involved or interested in providing peer-led services have met together to explore collective purchasing and commissioning in relation to Personalisation and radical system reform. This work is being done in partnership with the Peer Support Development Manager at Together.

Members of the group include; Berkshire NHS Foundation Trust (Berkshire), Borough Wide User Forum (Greater Manchester), CAPITAL (West Sussex), Catch-A-Fiya, Enfield Mental Health Service Users Group (Enfield), Health is Wealth (South London), Leeds Survivor Led Crisis Service, Reading Resource Centre, SHILPS (Merseyside/ Cheshire), Southwark Mind & Healing Waters (London), West Lancaster Peer Support Group (West Lancashire), Together and NSUN. The group has met twice 4.11.09 and 25.2.10 and is now called Peer2Peer. It meets again 3.6.10.

10 Project and partnership work

10.1 Department of Health Third Sector Strategic Partner Programme

Mental Health strategic partner.

Coalition with; Afiya Trust, Mental Health Foundation, Mental Health Providers Forum, Mental Health Helplines Partnership, Mind, NSUN, Rethink, Sainsbury Centre

10.2 National Mental Health Development Unit (NMHDU)

Service User and Carer Involvement contract.

NSUN is the lead for a coalition of organisations that includes; Afiya Trust, Attend, Equalities National Council, Mental Health Foundation, Social Perspectives Network, Together

The partnership has been embedded with monthly steering groups, monitoring progress and informing the work plan and developments. The respective networks/contacts of each partner has guaranteed the reach of the project beyond what existed.

The NMHDU Coordinator was recruited started 7.12.09. The baseline report with structured recommendations for systematic monitoring of involvement and the first stage of the independent impact evaluation were completed by the end of January 2010.

A database of service users and carers who were involved in various NMHDU work streams totalled 58 at the beginning of the project (August 2009); the database now holds 185 names. There have been two events and two information bulletins since December 2009. NSUN has been asked to cost and plan work up to March 2011 and continues to receive requests from NMHDU for specific consultative input, such as involvement in establishing a national carers work stream and how the service user and carer perspective can drive the national Personalisation agenda.

10.3 Mental Health Foundation

Exploring what role service users with experience of the Care Programme Approach (CPA) think CPA can play in supporting Recovery.

The proposal describes how the National Survivor User Network will explore the effectiveness of the CPA process in promoting the individual recovery approach, which has been advocated by people with direct experience of using mental health services. The project will be led by people who have direct experience of mental health services and will be designed to ascertain the views of a diverse section of the mental health community population across London. The work will start April 2010.

10.4 South London and Maudsley Mental Health Trust (SlaM)

Changing Minds Programme: Sharing Network (London)

NSUN has facilitated two sessions in partnership with SlaM 21.1.10 and 10.2.10. It is planned that this work will feed into and link with the London network and wider Service User Survivor Training Network.

10.5 Service User Survivor Training Network (SUSTN)

Training network, training audit and website hosting

SUSTN has approached NSUN to support the work and development of the network and host the existing website. The training audit will be conducted in partnership with Developing Partners and SUSTN members when funding is secured.

10.6 Together

Peer led services network Peer2Peer.

See 9.6

11 Monitoring and Evaluation

11.1 The final Evaluation Framework was produced by Sara Burns at Triangle Consulting December 2008 and the evaluation process and timetable was reviewed and revised 15.4.09 and reviewed again 15.10.09. An action plan was drawn up and an initial evaluation report was completed for the period March – June 2009.

11.2 Quarterly reports have been produced for the periods July – September 2009, October – December 2009 and January – March 2010. More detailed information about activity and communications are included in the quarterly reports.

11.3.1The 2010 annual evaluation will be conducted April 2010 using the questionnaire format recommended in the Evaluation Framework.

Appendix 3

12 The Months Ahead

As membership increases and NSUN becomes independent we need to manage the demands of a growing network. Continual and clear communication is essential and the redesign of the website will consider all of the identified needs and options to create an accessible, interactive and responsive site.

Internal systems need to be robust and fit for purpose. NSUN systems need to be more efficient and sophisticated, proposals to increase capacity have been discussed with the Management Committee and a full staffing review will provide evidence for a proposal and funding applications post April 2010.

An evaluation of NSUN and ‘lessons learnt’ has been proposed. This will feed into/be part of a planned summit which will address where the service user movement is now and where it wants to be in the future.


City Parochial Fund - London network

Esmee Fairbairn Foundation Main Fund application

Lankelly Chase Foundation

Lloyds TSB Foundation

John Ellerman Foundation

Internal systems (infrastructure)

Review of computer systems, equipment and contracts

Accommodation review


Staffing structure review

JD’s prepared

Staffing proposal to MC

Recruitment for permanent Admin and Finance worker


I've had to just edit out the actions for this year because this was in frames and Word document frames won't translate on my machine. You can also see my other opinions about NSUN on my previous posting of 15th June. I understand it was taken note of. I also opposed the Department of Heath connection but 'I was a lone voice crying in the wilderness.' (you have to say this aloud in a heavy welsh accent!)

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