About MARD

The Making a Real Difference report was commissioned by the NIMHE national and regional Directors in June 2004, to develop recommendations for improving Service User and Carer involvement throughout the NIMHE programme. The resulting report was fully endorsed by the Directors and CSIP North East Yorkshire and Humber were tasked with delivering on the recommendations outlined within the report.

The end of the national Making a Real Difference project in no way marks an end to the work to strengthen involvement in the NIMHE programme, but heralds the beginning of a long but significant period of change in the way we all work within the NIMHE programme and the culture that exists within the organisation.

As a result of the Making a Real Difference project, the systems, guidelines, policies and procedures developed in partnership with our stakeholders, will enable the NIMHE programme to develop a systematic approach to involvement. This will ensure that service improvement is being led by example, affording us to utilise not only the expertise of the NIMHE staff teams, but also the huge potential expertise held by people using mental health services and those caring for them. This will help us to fulfil the principles set out in the White Paper, Our Health, Our Care, Our Say - a new direction for community services; which states that "change is to be driven, not centrally, but in each community by the people who use services and by the professionals who provide them." (Tony Blair -January 2006).

The processes and methods followed during the projects and an overview of the resources that have been developed are detailed in the final project report.

MARD products

Throughout the Making a Real Difference project, the policies, guidelines and systems which have been developed and delivered by the work groups were referred to as "products". This term has proved unpopular during the project, however whilst we have searched for a more friendly description, it seems that "Products" remains the most appropriate way to describe the collective term for all of the policies, guidelines and systems produced by the work groups.

We have made the MARD products available on this website under three headings:

1. Policies
2. Guidelines and standards, and
3. Involvement systems.

Visit each section to read more about and download each product.

Acknowledgements

The Making a Real Difference Project Team included:

• Sally Prescott (Project Director)
• Liam Gilfellon (Project Manager)
• Yvonne Pearson (Work Group 1 Lead)
• Di Bardsley (Work group 2 Lead)
• Malcolm Barrett (Work group 3 Lead)
• Barbara Crosland (Work group 4 Lead)
• Mark Leveson (Work Group 5 Lead)
• Reg McKenna (Work Group 6 Lead)
• Ian Porter (Work Group 7 Lead)
• Lizzie Allen (Project support)
• Maureen Mellodew (Communications lead CSIP NEYH)

The project was overseen by a project steering group made up of a diverse group of people with expertise in a specific field. This inluded:

• Steve Shrubb - Director CSIP NEYH(Chair)
• Terry Lewis - Experts by Experience representative (Vice Chair)
• Ed Stanley - Experts by Experience representative
• Ron Peponis - Experts by Experience representative
• Cathy Street - Young Minds representative
• Sally Rogers - CSIP Older persons lead
• Richard Stevens - Voluntary and Community sector representative
• Ranjit Senghera - CSIP Race Equality Lead
• Dr. Jan Walcraft - Independent consultant
• Lu Duhig - National Service Improvement Carer representative
• Yvonne Pearson - Carer Lead representative
• Reg McKenna - Service User Lead representative
• Barbara Crosland - Service User Lead representative
• Lucy Pearce - Carer Lead representative
• Oi Mei Li - Carer Lead representative
• Tricia Nicoll - CSIP Having a Voice national lead
• Sally Prescott - Project Director
• Liam Gilfellon - Project Manager

We would like to thank the HASCAS team who produced the Making a Real Difference Report. This included:

• Karen Newbigging
  
• Rob Hughes
• Tina Coldham
• Dominic Walker
• Lillian Yates
• Patricia Chambers

We wish to thank the following for their support and advice:

• Paddy Cooney
  
• Kate Schneider
• Dean Repper
• Simon Rippon
• Richard Ford
• Jackie Ardley
• Richard Taylor
• Sussannah Rix
• Peter Horn
• Ian McPherson
• Ali Davies
• Melba Wilson
• Kevin Jarman
• Mary Clifton
• Carey Bamber
• Angela Hill
• Nigel Hayden
• Pam Taylor
• Maureen Mellodew
• Rob Hughes

We would also like to thank the following NIMHE Service User and Carer Leads for their support throughout the project.

• Paul Johnson
  
• Malcolm Rutt
• Elaine Leeming
• Tony Kirk
• Simon Foster
• Peter Woodhams
• Sylvia Minshull
• Karen Stuckey
• Sarah Yiannoulou
• Debbie Roberts

Most importantly we want to say a big thank you to the large number of people with experience of mental illness, their friends, families and carers, mental health workers and CSIP staff who have helped inform this document.

Steering Group

The Terms of Reference for the Making a Real Difference Steering Group set out the responsibilities of the steering group and its roles, the project structure and the communication and reporting plan.

The roles and responsibilities of the steering group members can be downloaded below:

• Chair
• Lead Executive Director
• National Programme Director
• Project Director
• Service user and Carer Representatives
• Third Sector Representative
• Work Group Representative

You can also download the project structure diagram.
To download the minutes of the steering group meeting please select 'Meetings and minutes' from the menu on the left.

Meetings and minutes

Minutes from the Making a Real Difference steering group meetings can be downloaded below:

• March 2007
• January 2007
• November 2006
• September 2006
• July 2006
• May 2006
• March 2006
• January 2006
• December 2005
• November 2005
• October 2005
• August 2005
  

Policies

The policies and procedures in this section outline the Care Services Improvement Partnership's and the National Institute for Mental Health in England's overarching corporate commitments to involvement.

• Policy and vision statement on service user and carer involvement
  
  This was developed in response to the perception that the National Institute for Mental Health in England (NIMHE) did not have a clear commitment to involvement that was consistent throughout the organisation
  
  
• An operational policy ensuring involvement is sought in all work programmes
  
  This outlines the expectations that NIMHE has for each and every employee, and explains in detail exactly how; Involvement will be sought in all work programmes; All work will follow the principles of good practice; All work will demonstrate respect for all participants, and promote their dignity, wellbeing and effectiveness.

Guidelines and standards

The guidelines and standards in this section show how we can grow and nurture involvement throughout our practice. These can be adapted and tailored to suit your local circumstances to help improve involvement within your current and future work practice.

• Good practice guidance for all programme leads to employ when involving service users and carers
  
  This guidance has been developed to inform people about best practice, and to grow and nurture involvement within NIMHE and across the health and social care communities. It is a resource for anyone to use as a tool to improve involvement within their current and future work practice.
  
  
• Minimum standards and recommendations supporting the involvement of all diverse and marginalised groups, their service users and their carers
  
  These minimum standards were developed in response to issues highlighted within the Making a Real Difference report outlining how poorly people from groups outside of those of working age adults with experience of accessing secondary care mental health services, are engaged in the NIMHE programme and its activities.
  
  The Minimum Standards are a set of overarching principles which will apply to all NIMHE programmes and activities at national or regional level. They acknowledge the rights of all service users and carers to work with NIMHE, whatever their background. They are also part of a culture change within NIMHE towards a more people-focused approach, built on mutual respect.
  
  
• Good practice guidelines for commissioners regarding how they can support involvement at a local level
  
  These good practice guidelines were developed in direct response to recommendation 5 within the Making a Real Difference report;
  "A key focus for NIMHE should be enabling and supporting service users and carers to be involved in local groups. NIMHE needs to work with commissioners to support investment in the development of local mental health and service user and carer groups"
  
  They provide guidelines for Regional Development Centre (RDC) staff to share with commissioners to enable them to focus on how they support existing and commission new service user and carer led services in the area.
  
  
• Involvement Leadership training recommendations
  
  This report is a compilation of positive training and support practice already delivered within CSIP/NIMHE via the existing leadership programmes. It also looks beyond NIMHE for other similar examples of training courses and support systems for service user and carer leadership. It also sets out a model of involvement, detailing the different levels of involvement within the organisation.
  
  
• Guidelines for Regional Development Centre's regarding payment for involvement
  
  One of the key areas the Making a Real Difference report defined was the development of national payments policy guidance. This would establish some consistency in the way that service users and carers are rewarded and reimbursed for their participation in NIMHE.
  
  The document has been designed to deliver that consistency, by providing a template from which CSIP Development Centres and NIMHE national programmes are able to produce procedures tailored to their own needs.

Involvement

Good Practice Guidelines for involving people with experience of mental ill health and their friends and families who care for them.


The growth of service user and carer involvement has seen people actively involved in many areas including committees and boards, recruitment, training, consultation, research, and monitoring and evaluation. We have developed this guidance to inform people about best practice, and to grow and nourish service user/carer involvement within NIMHE and across the health and social care communities.

This document has headings of key principles with guidance points underneath.
· Be clear
· Be inclusive
• Treat people equally
· Have a positive attitude
• Ensure good communication and information
· Have good physical accessibility
• Adopt a good procedure
· Ensure support is available
• Have resources available
· Create meaningful involvement
• Consider all practical issues - before, during and after
Download the document.

Commissioning

Commissioning guidelines: Supporting involvement at a local level by investing in service user and carer led groups.

These guidelines are to be used by anyone who has contact with commissioners in any of the work they do for NIMHE or on behalf of NIMHE;

• NIMHE staff
• NIMHE Volunteers
• NIMHE board members
• People with experience of mental ill health involved with the NIMHE and the development and delivery of its work programmes.
• Friends and family of people with experience of mental ill health who are involved with NIMHE and the development and delivery its work programmes.
• Strategic commissioners of mental health services
• Local Service user and Carer groups.

These guidelines should be used to develop relationships with commissioners to help and support the involvement of people at a local level.

Download the full report.

Engaging diverse groups

Minimum Standards for Working with Diverse Groups and Communities
One of the strongest messages from the "Making A Real Difference" consultation was the need for NIMHE to promote greater diversity and equality of user and carer involvement. There is a real commitment from people working within NIMHE and CSIP to broaden the range of users and carers who are actively involved within its work. There are also lots of positive examples in Regional Development Centres and National Programmes in engaging with diverse groups and communities. These Standards should help ensure that this good work is spread and built upon.

Who are the Minimum Standards for:
New NIMHE Staff and Volunteers

• All new staff should familiarise themselves with the minimum standards to ensure that they have a full understanding of the expectations NIMHE has for them. Any queries should be discussed with their line manager.
• All new work programmes should be developed in line with the minimum standards.

Existing NIMHE Staff and Volunteers

• Existing staff members should familiarise themselves with the minimum standards.
• Existing staff should ensure that their work programmes achieve the principles expected within the minimum standards, or have a plan in place to do so.
• Any new work programmes should be developed in line with the minimum standards.

People sharing their expertise to inform NIMHE's work

• All people should be made aware of the expectations within the minimum standards so that they are clear about what to expect when they are involved with NIMHE and its work programmes.

NIMHE Boards, Commissioners and Performance Managers (including external stakeholders)

• All NIMHE work programmes should be expected to include plans to achieve the minimum standards.
• All NIMHE work programmes should provide regular feedback with regard to performance against the minimum standards.
• All monitoring and evaluation of work programmes should include measures of performance against the minimum standards.

Download the full document.

Ways of working

Ways of working with diverse groups and communities

The "Making A Real Difference" Report (HASCAS 2005) recommends that NIMHE ensures it has a broad range of ways of engaging with a broad range of people experiencing mental distress, their families and carers. This includes going to where people meet, informal events and focused approaches to ascertaining service user and carer views. By offering more flexible and creative ways of getting involved, NIMHE can engage with a wider range of groups and communities who are currently marginalised within the organisation.

This document gives some general principles when deciding on ways of engaging with users and carers suggests some of the different approaches that can be used. It is not intended as a comprehensive or detailed guide.

For more practical examples of working with users and carers from diverse group, see the forthcoming report from the Pollen Shop/ Valuing People Support Team "Talking to people and building effective partnerships - Engaging people who are traditionally excluded from consultation processes" (CSIP 2006).

Download the full document.

Communication

Guidelines for supporting communication with diverse groups and communities

The Making A Real Difference report (HASCAS 2005) made it clear that NIMHE needs to improve the way it communicates with service users and carers if it is to make involvement more inclusive. The principle suggested was "Will a member of the public who is experiencing mental illness for the first time be able to pick up the document and understand it?"

These guidelines should help all NIMHE staff and associates to think about how they can make information more accessible to different communities and groups. This may be for external communication with a target audience, or internal communication with individual users and carers who are involved with NIMHE.


The Guidelines should be used alongside:

• The Minimum Standards for Engaging Diverse Groups and Communities - Making a Real Difference Resource Pack
• Guidelines for;
  • making events more inclusive
  • Ways of working with diverse groups and communities
• Recommendations for organising Resources to support wider involvement
• The guidelines should also be read and used in conjunction with all of the documents within the ‘Making a Real Difference - Involvement Resource Pack.‘
  

There are no set rules for making information accessible for whole groups of people, because everyone has their own preferred ways of communicating. However, there are some general principles and specific advice that, if followed, should assist with communication. The guidelines are not intended to be either comprehensive or definitive, but instead offer:

• Some suggestions for making information easier to understand for everyone
• Some brief advice for better communication with specific communities and groups

Download the full document.

Making events inclusive

Guidelines for making events more inclusive

The Making a Real Difference report (which was commissioned to review service user and carer involvement within NIMHE) recommended that NIMHE use a broad approach to involving people with experience of mental health problems and their friends and families who care for them, with both formal and informal ways of getting feedback. By paying attention to the timing, venue, information and support available, NIMHE can make its events more enjoyable and effective for a wider range of groups and communities.

The Guidelines should be used alongside:

• The Minimum Standards for Engaging Diverse Groups and Communities (Making a Real Difference Resource Pack)
• Guidelines for;
  • Supporting communication with diverse groups and communities
  • Ways of working with diverse groups and communities (Making a Real Difference Resource Pack)
• Recommendations for organising Resources to support Wider Involvement (Making a Real Difference Resource Pack)
• The guidelines should also be read and used in conjunction with all of the other documents within the ‘Making a Real Difference - Involvement Resource Pack.‘
  

The guidelines refer to "events" or "meetings" for short. This includes any occasion where people are invited to take part by NIMHE e.g. large and small meetings, conferences, interview panels, training, focus groups, and open days. They are intended as a starting point only- when working with a particular group or community, ask for the advice of people from that background when designing an event or other activity.
Download the full document.

Resource implications

Recommendations for organising resources to support wider involvement

The Making A Real Difference Report highlighted the need for NIMHE to improve the way it works with people from diverse communities and background in its user and carer involvement activities.

All of the recommendations and products of the Making A Real Difference project are important.

The underlying principles of this document, based on the Minimum Standards for working with diverse groups and communities are the commitment to:

• Mainstream diversity of user and carer involvement into NIMHE and CSIP's existing structures and activities
• Provide practical support to ensure different communities and groups have real influence across NIMHE at all levels
• Develop partnership working with external networks and organisations with experience of working with diverse communities and groups
  

Resource limitations were cited as a barrier to involving diverse groups and communities in several responses from national programmes and Regional Development Centres. Implementing the products from Making A Real Difference in a way that genuinely engages users and carers from all backgrounds means changing the way CSIP works as an organisation, which has major resource implications. These may include direct financial costs, such as holding an event with a particular community, or putting publicity material into different formats. There are also indirect costs, such as staff time, admin support, training and development.

The Making A Real Difference products are being implemented in a climate of organisational change and financial pressures within CSIP. It is also recognised that CSIP has already committed significant resources to developing its service user and carer involvement programmes. Therefore, the focus of this paper is on making the most effective use of existing resources, with a more strategic focus on strengthening the involvement of diverse communities and groups, and a more rigorous evaluation of how well this is working.

It is also important to remember that many of the Minimum Standards for Involving Diverse Groups and Communities relate to the attitudes of CSIP staff and the culture of the organisation. Implementation of these recommendations is not necessarily about money.

Download the full document.

Leadership training

Leadership Recommendations: Strengthening the support available to people who become involved by making appropriate training available.

This document was written in conjunction with the Commissioning Guidelines for supporting local involvement- Making a Real Difference Resource Pack.The two documents were developed to address recommendations 5 & 11 of the Making a Real Difference report.

Recommendations 5 and 11

The overall aim of our task - commissioning and capacity building
We interpreted our task as being about improving the capacity of service users, carers and families to take part in local, regional or national involvement, service improvement work, self-help support and service provision.

The following leadership recommendations specifically focus on addressing the issues raised in recommendation 11. They are designed to assist NIMHE and its staff in developing training and support packages which will effectively support and build the capacity of people who are involved in NIMHE and its work programmes.

Download the full document.

Payment and reimbursement

Payment and reimbursement policy guidelines
One of the key areas HASCAS identified in their review of involvement within NIMHE was the need to develop national payments policy guidance to establish some consistency in the way that service users and carers are rewarded and reimbursed for their participation.

The payment and reimbursement policy guidance document has been designed to deliver that consistency, by providing a template from which CSIP/NIMHE Development Centres are able to produce policy documents tailored to their own needs.
Download the full document here

Involvement systems-

Communication strategy

Communication Strategy: Enabling and valuing the involvement of people with direct experience of mental health problems and their carers

The purpose of this paper is to set out a communication strategy which enables the full involvement of people living with mental health problems and those who support them, in all aspects of the work of the mental health programme (NIMHE) of the Care Services Improvement Partnership.

This strategy will focus exclusively on how NIMHE communicates with people living with mental health problems and their carers to support and enable their involvement in all aspects of its work.

The communication strategy is a clear demonstration of NIMHE's stated commitment to putting ‘service users, families and communities' at the centre of everything it does. It will include:

1. What it aims to achieve.
2. The principles and values which underpin the strategy and their importance and relevance.
3. A good practice guide to implementation incorporating a quality standards checklist
   

Download the full document.

Involvement Passport

Involvement Passport

The Involvement Passport is designed to address some of the recommendations made within the report. It is a template for providing anyone who becomes involved in NIMHE with all of the information relevant to their role.

The passport also provides two questionnaires which will provide NIMHE with some of the information necessary to monitor and evaluate how well they are involving people.

Who is the Involvement Passport for?

NIMHE Staff and Volunteers who have responsibility for supporting people sharing the expertise and experience of living with mental health problems.

All staff will be responsible for developing a meaningful involvement passport with all people involved in their work programme. This could include

• • Development Centre Directors
  • Deputy Directors
  • Work programme leads
  • Service Improvement leads
  • Project Managers
  • Business Managers
  • Communications Managers
  • Events Organisers
  • Secretarial staff
  • All other staff

All people involved in NIMHE should have an involvement passport as it provides a comprehensive package of information to ensure that everyone is fully informed about the organisation, the work programme / project and the needs of all parties including support and training needs.

Download the full document.

Payment and reimbursement

Payment and reimbursement policy guidelines
One of the key areas HASCAS identified in their review of involvement within NIMHE was the need to develop national payments policy guidance to establish some consistency in the way that service users and carers are rewarded and reimbursed for their participation.

The payment and reimbursement policy guidance document has been designed to deliver that consistency, by providing a template from which CSIP/NIMHE Development Centres are able to produce policy documents tailored to their own needs.
Download the full document here

Staff induction pack

Induction for New CSIP Employees

As a new member of staff working for CSIP, whatever your role, position, length of contract or work programme allegiance, service user and carer partnership will be central to the work you are involved in.

This section will help enable you to develop and maintain constructive partnership working relationships with:
· service users
· carers
• families
· colleagues

· lay people and wider community networks.
As someone working for, or with CSIP, the focus of the work with service users and their families and carers is the development of true and meaningful partnership working. It is essential that those people who use services are viewed as meaningful partners in our work rather than passive recipients of involvement.
In order to achieve this aim, CSIP staff are required to be assertive in their engagement with service users and carers, particularly those from more diverse and ‘hard to reach' groups. Also participating in a manner that respects and values diversity, including age, race, culture, disability, gender, severity of condition, spirituality and sexuality.
If partnership working is to be a reality then your participation in the CSIP training and education programme ‘How to effectively involvement service users and carers' is essential as soon as is possible after starting with CSIP. This training programme has been designed to provide a learning environment, where various issues around participation are explored and good practice promoted.

Click here to read the full document.

Staff training pack

Resource Pack for Trainers and Facilitators

Increasingly mental health service users and carers are being involved within health and social care organisations. Whilst the importance of involvement is recognised sometimes there is a difficulty in translating the commitment into practice.

This training resource has been developed following a report by HASCAS (2004) Making A Real Difference which looked at involvement within the National Institute for Mental Health England (NIMHE) which is incorporated with the Care Services Improvement Partnership (CSIP). Following this report a series of recommendations were made to improve involvement of service users and carers within the work of NIMHE and CSIP.

Although the report looked at developing resources for NIMHE this training resource is applicable to people wishing to engage mental health service users and carers within their work across a range of health and social care settings.

Download the full report

Monitoring and evaluating tools

Monitoring and Evaluating Service User and Carer Involvement

The Making a Real Difference Report highlighted the need for NIMHE to develop a way of monitoring the process and outcomes of involvement. It is with this in mind that the following monitoring and evaluation tools have been produced.

It is expected that each Regional Development Centre will have robust and accountable systems in place for monitoring the processes and systems which embed involvement in all of the work programmes of NIMHE'.

It is important that involvement is a 2 way process of development, ensuring that there are benefits for both the organisation and the people involved in the design, development and delivery of NIMHE work programmes. The monitoring and evaluation tools will enable us to compare outcomes of the involvement experience, as well as measure the impact of involving people. In other words the monitoring and evaluation tools will allow us to monitor what we do, and how we do it. Whilst enabling us to evaluate how well we do it!

The data we collect needs to provide us with both qualitative and quantitative information and the tools within the monitoring and evaluation document have been designed to collect both statistics (quantitative) as well as allowing space for people to tell us their stories and experiences of being involved with NIMHE. This will allow us not only to keep track on the numbers and demographics of people involved, but also how satisfactory the experience of being involved has been.

It is suggested that monitoring is best evaluated by using independent service user and carer groups and/or a buddying systems between CSIP Development Centres to undertake external reviews on a regular basis. This method will provide the truest picture of how well NIMHE and its staff are performing in relation to the involvement of people with experience of mental ill health and their friends and families.

It is suggested that three key areas of the involvement process are monitored;

• Accessing involvement including selection of service users and carers
• Experience of being involved
• Impact/outcomes of involvement

The full document explores how NIMHE and its staff can achieve this by implementing the tools provided.

Monitoring and evaluating tools

Download the Monitoring and Evaluating Service User and Carer Involvement.

The National Mental Health Development Unit (NMHDU) is the agency charged with supporting the implementation of mental health policy in England by the Department of Health in collaboration with the NHS, Local Authorities and other major stakeholders.