This document outlines a project to develop national standards for meaningful involvement of service users and carers in health and care services. The project will be led by four partner organizations representing service users and carers. It aims to promote user-carer leadership, empowerment, and a vision of "nothing about us without us." By establishing standards and infrastructure, the project seeks to hardwire the direct experiences of users and carers into services to make them more responsive and cost-effective.

1. Partnership working
4PI: standards of involvement
Sarah Yiannoullou
07778 659 390

2. Partners:
• NSUN: the National Survivor User Network
• Afiya Trust
• Social Perspectives Network
• Mental Health Foundation

3. Project Summary
This service user-carer-led project will develop national standards and an infrastructure for
involvement, securing their adoption. It will promote user-carer leadership - targeting marginalised
groups - and will promote resilience, empowerment, innovation, transformation and improvement,
realising the vision “nothing about us without us”. This will lead to more responsive and cost effective
services.
It will ‘hard wire’ the user-carer direct voice and experience into health and care services. The project
will develop the evaluated NIP work, share good practice, centralise resources, strengthen existing
networks and build an infrastructure that connects and coordinates. It will benefit service users, carers
and professionals.
Theme & Priority
Theme 1: Personalisation and Choice of Care and Support. Priority 1.
Priority 1: The involvement of service users, patients, carers and the public in decision making is at the
heart of the modernisation of the NHS, and is now a central theme of national and local policy. The
National Involvement Partnership (NIP) aims to bring together experience, expertise and evidence to
provide a structured approach to influencing health and care service improvement that is service user
and carer led, taking forward the vision of 'no decision about me without me'.

4. Principles
Purpose
Presence
Process
Impact
4PI

5. Our Vision
Our vision is of a future where there is ‘nothing
about us without us’:
• where effective and meaningful involvement in all aspects of
our lives builds resilience and changes people’s lives;
• where there is genuine partnership working between mental
health services, professionals, service users and carers, based
on agreed and shared outcomes; and
• where this partnership of expertise works towards common
goals of respect, recovery, choice and control for each and
every individual who comes to use mental health services.

6. Historical References, Resources and
Experiences
• Previous work for Dept of Health, NIMHE, CSIP, NMHDU
• Two Literature reviews: of involvement and of
involvement tools and guidelines
• Reports:
– ‘Dancing to Our Own Tunes’ – Jayasree Kalathil 2008 (reprint
2013)
– ‘A Review of Values-based Commissioning in Mental Health’ –
Emma Perry, Jo Barber & Elizabeth England, 2013
– ‘On Our Own Terms’ – Jan Wallcraft and others, 2003
– ‘Unlocking Service User Involvement in Forensic Settings’ –
WISH 2011
• Consultations (by NSUN in 2012/13)
• Pilot site events and Leadership programmes

7. Special Mentions…
• Making a Real Difference (MARD) materials
(NIMHE/CSIP)
• ‘On Our Own Terms - Users and survivors of mental
health services working together for support and change’
– Jan Wallcraft with Jim Read and Angela Sweeney, 2003.
London: Centre for Mental Health.
• Dancing to Our Own Tunes: Reassessing black and
minority ethnic mental health service user involvement –
Jayasree Kalathil, 2008 (reviewed & reprinted 2013)

8. Principles
Involvement
for Influence
Purpose
Impact
Process
4PI Standards
for
Involvement

10. 4PI: Involvement for Influence
Principles:
– Meaningful and inclusive involvement starts with a commitment to shared
principles and values; start by sharing your principles and values.
Purpose:
– The purpose of involvement needs to be clearly stated and communicated
with everyone involved.
Presence:
– A diversity of service users and carers should be involved at all levels and at
all stages; the people who are involved need to reflect the nature and
purpose of the involvement.
Process:
– The involvement process needs to be carefully planned to make sure that
service users and carers can make the best possible contribution
Impact
– Any involvement needs to make a difference to the lives or the experiences
of service users and carers.
– We recommend a cycle of learning and development

11. A Cycle of Learning and Influence
PLAN
DO
STUDY
ACT

12. Overarching themes
• Power
• Diversity and equality
• Principles and values
• Commitment to change
• Barriers and challenges

13. Next Steps…What does
implementation look like?
• Sign-up
• Online resources
• Self-evaluation tool
• An implementation guide, route-map or
pathway ?
• Evaluation of the project
• A continuation bid