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Learning from Experience Involving service users and carers in mental health education and training National Institute for Mental Health in England NIMHE West Midlands Trent Workforce Development Confederation mhhe A good practice guide Jerry Tew, Colin Gell and Simon Foster mental health in higher education

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Learning fromExperience

Involving service users and carersin mental health education

and training

National Institute forMental Health in England

NIMHE West Midlands

TrentWorkforce Development Confederation

mhhe

A good practice guide

Jerry Tew, Colin Gell and Simon Foster

mental health in higher education

ISBN number 0-9541709-2-X

This document was written by Jerry Tew, Colin Gell and Simon Foster onbehalf of the Mental Health in Higher Education project, NIMHE WestMidlands and Trent Workforce Development Confederation

It can be accessed online at: www.mhhe.ltsn.ac.uk ,www.trentconfed.nhs.uk, www.nimhe.org.uk and www.nimhewm.org.uk

November 2004

© Higher Education Academy/NIMHE/Trent Workforce DevelopmentConfederation

All rights reserved. Apart from any fair dealing for the purposes ofeducation and training, research or private study, criticism or review, nopart of this publication may be reproduced, stored in a retrieval system,or transmitted in any form or by any other means, graphic, electronic,mechanical, photocopying, recording, taping or otherwise, without theprior permission in writing of the publishers.

For further information contact:

Jill AndersonSenior Project Development OfficerMental Health in Higher EducationCentre for Social WorkUniversity of NottinghamUniversity ParkNottingham NG7 2RD

[email protected]

www.mhhe.ltsn.ac.uk

Contents

1

Acknowledgements......................................................................................................... 3

Executive Summary ....................................................................................................... 4

How to Use the Guide ................................................................................................ 5

1 Introduction ................................................................................................................. 61.1 Purpose of the guide .........................................................................................................6

1.2 Who is the Guide for? ....................................................................................................... 6

1.3 Link with the National Continuous Quality Improvement Tool .....................................7

1.4 Language and terminology .............................................................................................. 7

1.5 Service users and carers: commonalities and differences of experience ....................... 8

2 Setting the Scene .................................................................................................. 92.1 How do students learn about mental health? ................................................................9

2.2 Why involve service users and carers? ............................................................................10

2.3 What do students think about it? .................................................................................. 11

2.4 What is in it for teaching staff? ......................................................................................12

2.5 What is in it for service users and carers? .....................................................................13

2.6 Implications for facilitating use of self in practice and education ..............................14

2.7 Incorporating user and carer input as distinct and complementary perspectives .... .14

3 Spectrum of Involvement ..............................................................................153.1 Direct delivery of learning and teaching .......................................................................16

3.2 Course / module planning ..............................................................................................21

3.3 Programme management ..............................................................................................23

3.4 Recruitment and selection of students .........................................................................24

3.5 Practice learning .............................................................................................................26

3.6 Student assessment .........................................................................................................27

3.7 Course evaluation ...........................................................................................................29

3.8 Service users and carers joining courses as participants ..............................................30

2

4 Initiating and Sustaining Involvement ................................................ 324.1 Getting started (or getting moving again): what are

the barriers and how can we overcome them? ............................................................... 32

4.2 How to get started – one approach ..................................................................................34

4.3 Representativeness and diversity ...................................................................................... 35

4.4 Changing the culture of a course ..................................................................................... 35

4.5 Building capacity for service user and carer involvement .............................................. 38

4.6 Funding ............................................................................................................................... 39

4.7 Infrastructure for support, training and supervision .......................................................40

4.8 Employment and contracting ............................................................................................ 43

4.9 Payment, expenses and other practicalities .................................................................... 44

4.10 Checklist for service users and carers preparing to become involved ............................47

5 Evaluating Progress .............................................................................................485.1 The experience of service users and carers .......................................................................48

5.2 The experience of students ................................................................................................51

5.3 The Ladder of Involvement ................................................................................................53

5.4 Taking all aspects of involvement into account: a more detailed scoring system ........55

6 Conclusions and Recommendations ................................................... 57

Appendix A: The Authors ................................................................................. ....... 59

Appendix B: Reference Group ....................................................................... ....60

Publications and References ........................................................................ .....61

3

Acknowledgements

This Guide has been made possible throughfunding from the National Institute for MentalHealth in England (NIMHE) West MidlandsRegional Development Centre, TrentWorkforce Development Confederation andthe Mental Health in Higher Education Project(mhhe). The Guide owes much to fieldresearch on service user involvement inconjunction with Suresearch (in particular byStewart Hendry, Donna Ryan, Tony Glynn andMarion Clark), and to carers who took part infocus group research, in conjunction withCarers in Partnership. It draws on materialsdeveloped by Premila Trivedi and on the paper‘Overcoming the barriers’, based on aworkshop facilitated by Thurstine Basset at themhhe event ‘Paying more than lip service: userinvolvement in learning and teaching aboutmental health in higher education’.

Mental Health in Higher Education (mhhe) is acollaboration between the Higher EducationAcademy subject centres for Health Sciences &Practice; Medicine,Dentistry & VeterinaryScience; Psychology and Social Policy & SocialWork. Subject centre involvement in initiatingand sustaining this work has beenappreciated.

This guide owes its existence to the manypeople who contributed examples of currentinitiatives. Details of those not, for reasons ofspace, included here are available on themhhe website: www.mhhe.ltsn.ac.uk.

We would also like to acknowledge thecontribution of all those who providedconstructive feedback and comment on thefirst draft of the guide whose names are listedin appendix B; Mel Ashford and John Allcockwho provided valuable support withproofreading; as well as the very many peoplewho helped to shape this Guide in importantbut less formal ways.

Editorial GroupThe authors were involved in steering thisproject, along with:

• Jill Anderson, Senior Project DevelopmentOfficer, Mental Health in Higher Education

• Hilary Burgess, Learning and TeachingAdviser, Social Policy & Social WorkNetwork Centre of the Higher EducationAcademy

• Barbara Crosland, User InvolvementWorker, West Midlands NIMHE

• Joe Curran, Project worker, NationalContinuous Quality Improvement Tool

• Duncan Henderson, Mental health Lead,Birmingham and the Black CountryWorkforce Development Confederation

• Roslyn Hope, Director, NIMHE NationalWorkforce Programme

Editor:Jill Anderson

4

If service delivery is to be characterised by anethos of partnership, then such partnershipsmust also form the foundation of mentalhealth education. By virtue of their directexperience of mental distress and ofprofessional responses (helpful and unhelpful),service users and carers have valuableknowledge and expertise to offer. Theirinvolvement has the capacity to enrich thelearning of students, offering a morestimulating and challenging educationalexperience – and one which can equip studentsto practise more effectively.

Many courses are keen to progress with serviceuser and carer involvement, althoughsometimes at the early stages of the process.Increasingly, this is something that will beexpected by professional bodies andcommissioners, as national strategies such asthe Ten Essential Shared Capabilities are rolledout across the mental health workforce.

Effective progress requires a broad strategy toinvolve service users and carers in all aspects ofthe educational process (not just coming in forone or two teaching sessions). This may involveService users and carers in:

• direct delivery of learning and teaching

• course / module planning

• programme management

• recruitment and selection of students

• practice learning

• student assessment

• course evaluation

• joining courses as participants

ExecutiveSummary

Achieving meaningful involvement dependson:

1. establishing a culture which considers theviewpoints and contributions of serviceusers and carers to be of equal value toacademic and professional perspectives

2. developing an infrastructure to recruit,support and give training to service usersand carers

3. paying service users and carers at a fair rateand in ways that do not undermine theirfinancial security

4. valuing and encouraging diversity: makingsure that minority experiences andviewpoints are included

5. having a strategy for taking forwardinvolvement that is supported bymanagement, professional bodies andother key stakeholders. This must includeappropriate funding.

The Guide contains a general introduction tothe topic and, drawing on a range of currentinitiatives, pointers towards good practice inrelation to each of the components of effectiveinvolvement. A range of evaluation tools areoffered which may be useful in chartingprogress and identifying the next steps to betaken.

5

How to usethe guide

This Guide aims to be comprehensive andcontains some general discussion andbackground information, some specific tips andideas, and a range of examples of currentpractice. Other examples and relateddocuments will be made available on theMental Health in Higher Education website:www.mhhe.ltsn.ac.uk, where you can also logexamples of your own.

In order to gain an overview of the topic, somereaders may find it helpful to read the Guidefrom start to finish. However, we expect thatmany will use the Guide for reference, eitherindividually or within teams, and will dip in toparticular sections as and when required.Pointers to good practice are highlighted forease of reference.

Readers who are using the Guide as acompanion to the National Continuous QualityImprovement Tool for Mental Health Educationmay prefer to start with Section 5 and thenrefer back to those Sections which explainparticular points in more detail.

1 Introduction

6

1introduction

Achieving meaningful involvement of serviceusers and carers is a journey of discovery. There isno ‘one size fits all’ model that will work for allprogrammes in all localities. What works for aparticular course will emerge out ofcommitment, dialogue and hard work byteaching staff, service users and carers. We hopethat this Guide may provide some useful pointersto make this process easier.

Some programmes have yet to start the journeyand are looking to see what might be the mostappropriate first step for them. Others may havestarted down the road and be keen to do morethan simply invite service users and carers alongfor a one hour 'user’ or ‘carer’ slot each year. It isincreasingly recognised that service users andcarers can and should be involved in all aspectsof planning, delivering, assessing and evaluatingmental health education and training.

This Guide seeks to build on the experiencegained so far by a wide range of programmes,on recent research conducted in conjunctionwith Suresearch (Tew et al, 2003) and Carers inPartnership (2004), and on guidance developedfor the training of Primary Care Graduate MentalHealth Workers (Gell, 2003). Whilst intended tobe comprehensive, it recognises that practice inthis area will continue to evolve. There is scopefor further work, in particular around theinvolvement of service users and carers fromBlack and Minority Ethnic groups; and othercurrently underrepresented groups such asyoung people and older service users and carersand those who are in touch with primary careservices. Further thought needs to be given tothe issues raised where education is delivered ininterdisciplinary contexts. It is hoped that otherswill take this guidance as a starting point, refineand build on it.

This Guide is first of all intended for lecturersand course directors in UK higher educationwith involvement in either pre- or post-qualification courses in the following areas:

• nursing and professions allied to medicine,including occupational therapy andphysiotherapy

• social work

• psychology

• medicine and psychiatry

• Primary Care Graduate Mental HealthWorkers and other new designations ofmental health workers

• interprofessional programmes andprofessionally non-affiliated programmessuch as the Certificate in Mental HealthWork.

Beyond this, it is hoped that the Guide willalso be a valuable tool for all those who play apart in making user and carer involvement inmental health education a reality, in particular:

• users of mental health services

• carers

• lecturers and course directors in othersubject areas within higher education

• trainers and managers in Trusts, localauthorities and non-statutory organisationswho provide accredited in-house mentalhealth training programmes

• commissioners of mental health educationand training (such as WorkforceDevelopment Confederations/ StrategicHealth Authorities)

• NIMHE Regional Development Centres

While it is not specifically targeted atworkplace-based NVQ / SVQ, induction orother such training, it may nevertheless havesome relevance in these contexts.

1.1 Purpose of theGuide

1.2 Who is the Guide for?

7

While it is hoped that this Guide will be avaluable point of reference in its own right, ithas also been designed specifically toaccompany the National Continuous QualityImprovement Tool for Mental Health Education(NCMH, 2003). This provides a mechanism forprogrammes to review their mental healthteaching.

It was developed by the Northern Centre forMental Health with support from the NIMHENational Workforce Programme, in response toa national mapping exercise of mental healtheducation and training which found that:

• mental health education tended not to belinked to the national policy agenda

• service user and carer involvement, at alllevels, was not generally established

• there was variation in the assessment of theimpact of training.

Although the Quality Improvement Tool coversa number of aspects of performance, user andcarer involvement is seen as central if studentsare to learn the values, knowledge and skillsthat are most relevant to practice.

Where it is being rolled out to highereducation programmes it has the potential tobe used as a lever for change - both internally,to help overcome barriers within educationprovider organisations, and externally topromote productive dialogue betweenproviders and stakeholders such as service useror carer groups and Workforce DevelopmentConfederations/ Strategic Health Authorities. Itis hoped that the Quality Improvement Toolwill become integrated into routine qualityenhancement processes, and its use bereviewed in the regular DevelopmentalEngagements undertaken by the QualityAssurance Agency.

1.3 Link with the National Continuous Quality ImprovementTool

1 Introduction

There are variations, across different settingsand disciplines, in the language conventionallyused; and people may be more comfortablewith some terms rather than others. For thepurposes of this Guide, the term ‘mentalhealth’ is taken to refer to a state of mentalwellbeing, and ‘mental distress’ is used to referto a significant departure from this state. Theterm ‘service user’ is used to denote clients,patients, survivors or people with livedexperience of mental distress, and the term‘carer’ is used to denote relatives or friendswho play an important role in supportingpeople experiencing mental health difficulties.The term ‘student’ is used to denote peoplewho are receiving education or training,whether at pre- or post-qualification level, in-service or within an academic institution. Theterm ‘teaching staff’ is used for lecturers,trainers, practitioners or others who areregularly involved in the organisation anddelivery of education or training. We dohowever recognise that people’s roles canoverlap – students and teaching staff may alsobe service users or carers. The term ‘practice’ isused to denote direct work with service usersor carers.

Some terms, such as ‘Approved Social Worker’,may be specific to the legal or service contextof particular countries within the UK. For thesake of clarity, alternative terms are notincluded in the text. However, the educationalissues, and the practical issues to do withmaking progress in service user or carerinvolvement, are likely to be very similar acrossthe UK.

1.4 Language andterminology

1 Introduction

8

In the development of this Guide, soundingswere taken among groups of service users andcarers who had experience of involvement ineducation and training. People were askedwhether they felt it would be best to have acombined guide, or separate documentsdealing with the participation of service userson the one hand and carers on the other. Theoverwhelming response was that, as therewere many more experiences of commonalitythan difference, a combined guide would workbetter. Nevertheless, service users and carersmay have genuine differences in perspective,and this need to be acknowledged within theeducational process (see Section 2.7).

Service user and carer involvement ineducation and training has evolved at differentrates. There are currently more examples ofgood practice relating to service user than tocarer involvement. It is hoped that thisdisparity will diminish in the future asprogrammes look to developing service userand carer involvement, together and inparallel, as part of a single strategy

1.5 Service users and carers: commonalitiesand differences of experience

9

2Setting theScene

In this section we outline the training routesfor mental health professionals in highereducation. We consider, from a range ofperspectives, the arguments for involvingservice users and carers in mental healtheducation. Finally, we discuss how carer andservice user perspectives may be seen asdistinct and complementary.

2.1 How do students learn about mental health?

Many students first learn about mental healthwithin vocationally oriented academicprogrammes located within universities andcolleges that offer higher education levelprogrammes. These typically lead to anacademic qualification (Diploma in HigherEducation, undergraduate or postgraduatedegree) and an award from or registration bya professional body (e.g. Nursing andMidwifery Council, General Medical Council,General Social Care Council).

Typically, such programmes include a taughtacademic element and an element of directpractice, and students have to achievespecified standards in both elements in orderto obtain their qualification. Manyprogrammes are delivered in some form ofpartnership with Trusts, local authorities andother providers of mental health services thatoffer the settings for the practice element ofthe programmes.

Within most current forms of qualificationtraining, mental health is part of a broadergeneric programme (for example, qualifyinglevel training in medicine, occupationaltherapy, physiotherapy, clinical psychology orsocial work). Mental health may constitute adesignated specialist pathway (as in pre-registration nursing), or may be taught as aspecific module or sequence undertaken by allstudents.

Once qualified (as a doctor, social worker etc.),many students will undertake accredited post-qualification training that is specific to mentalhealth – and increasingly these courses may beorganised on an interprofessional basis. Theseprogrammes may be located within HigherEducation Institutions, or in people’sworkplaces (e.g. Trusts or local authorities), butgenerally involve some form of partnershipbetween the two in order to provide anappropriate mix of academic and practiceinput, and to provide a further qualificationthat is accredited both academically and byrelevant professional bodies.

An exception to this training route ispsychology, where students complete anundergraduate degree which generally has nopractice element, and then obtain relevantpractice experience; before proceeding to apostgraduate course in clinical psychology,which contains both academic and practiceelements and leads to the recognisedprofessional qualification.

Recently, with the goal of broadening themental health workforce, new designations ofworker have been developed (Primary CareGraduate Mental Health Worker; Support,Time and Recovery Worker, etc). A variety oftraining routes for these workers are beingestablished, which may involve some form ofpart-time university or college based learningtogether with assessed practice in theirworkplace.

2 Setting the Scene

10

2 Setting the Scene

Changing service contextand value baseThe National Service Framework for MentalHealth proposes that “service users … shouldbe involved in planning, providing andevaluating education and training” (DoH,1999, p.109). This reflects a fundamental shiftin the culture of mental health services. Therehas been a tendency to reproduce a divisionbetween ‘us’ and ‘them’, in which it is assumedthat practitioners, educators and students aresomehow different from people with directpersonal experience of mental distress, eitheras service users or as carers. Professionaleducation has been founded on a value basewhich assumed that practitioners needed to be‘experts’ who imposed their frames ofunderstanding and their methods ofintervention upon service users and carerswho, almost by definition, were seen as lackinginsight or capacity to discover their ownsolutions.

Within the current culture of mental healthprovision, a different value base is emerging,based on principles of partnership betweenpractitioners, service users and carers (seeNIMHE Cases for Change, 2003). Each is seen asbeing able to offer their own valuablecontribution in terms of developing a moreholistic understanding of mental distress andits impact, and as having the potential to beactively involved in working towards recovery.

If service delivery is to be characterised by anethos of partnership which values the expertiseof service users and carers, then it is becomingincreasingly recognised that such partnershipsmust also form the foundation of mentalhealth education. Working in Partnershipappears as the first of theTen Essential SharedCapabilities that have been set out by theNational Institute for Mental Health in Englandas the underpinning framework for thetraining of the whole mental health workforce(Hope, 2004).

In making ideas of partnership a reality forstudents, the medium must be congruent withthe message: it is the process of education thatis likely to be more powerful than its contentin shaping the attitudes and capabilities of thepractitioners of the future.

Knowledge and skillsThe potential educational benefits of serviceuser and carer involvement may go beyondinstilling a value base of mutual respect andpartnership. Through their direct experience ofliving with mental distress, and increasinglythrough their active involvement in research,users and carers are developing a knowledgebase of immediate relevance to mental healthpractice.

At times, this may be complementary to theknowledge base that is currently taught – forexample suggesting additional dimensions toan assessment so that it encompasses thefullness of a person’s life, recognises strengthsand highlights issues that may make a majordifference between being able to keep well orsuffering some form of relapse.

At other times, user and carer knowledges maybe challenging of existing ‘professional’orthodoxies and the power bases that upholdthem. For example, service user trainers maywish to promote alternative survivormovement models to shed light on mentaldistress, increase understanding of risk andpromote recovery. Entering into these debateswithin an ethos of mutual respect may becrucial in driving forward user-centred forms ofprofessional practice. As Thomas and Brackenargue, in reflecting on their own training aspsychiatrists: “Some of the knowledge weacquired during our training has been ahindrance. How we work clinically todayevolved painfully and fortuitously … partlyfired by the critical observations of serviceusers” (1999, p.14).

As well as introducing their own perspectives,service users and carers can play a crucial rolein helping to prioritise the most importantareas of knowledge and understanding tofocus on in a particular course. For example, inplanning the training of the Primary CareGraduate Mental Health workers, service usersidentified what they saw as the key areas thatstudents should cover. Many of these would beapplicable to all mental health training (Gell,2003).

Service users and carers have a uniquecontribution to make to training in coreprofessional skills, such as listening,communication, empathy, advocacy andoffering counselling or advice. Insufficientweight has in the past been given to these inprofessional training and, where they havebeen taught ‘in the abstract’ without directguidance and feedback from service users andcarers, students may fail to learn about what isof most importance in establishing therapeuticpartnerships. The immediacy of input fromservice users and carers is likely to mean thatstudents taught by users and carers will beequipped to work in a more effective orqualitatively different way than those taughtabout relating to users and carers.

Learning outcomes andservice outcomesResearch into service effectiveness across thecare sector has shown that the directinvolvement of service users, both in individualdecision making and in service planning, canresult in improved service outcomes (see, forexample, Carpenter and Sbaraini, 1997).Although research is currently less available onthe longer term practice outcomes of involvingservice users and carers in students’ education,it is likely that the same principles apply.

We would therefore expect such involvementto help to produce practitioners who arecapable of delivering improved (and morerelevant) outcomes for service users and carers- through working alongside them to identifyproblems and solutions, developing theircapacity to manage mental health difficulties,and enabling them to chart their own journeytowards recovery. However, unless innovationsin education and training are mirrored bydevelopmental support to the organisations inwhich the students undertake the practiceelement of their training, and in which theysubsequently work, new capabilities may belost because they are not used.

Research indicates that, when user and carerinvolvement is properly planned andsupported, it can be very highly valued bystudents, some of whom describe theirexperiences in positively ‘life-changing’ terms.Sessions devised and led by user or carertrainers may be described as, at the very least,‘refreshing’ and sometimes (perhaps somewhatto the chagrin of other teaching staff) as thebest input of the entire course. Some specificcomments include:

11

2 Setting the Scene

It taught meto value other(different)people in adeeper waythan before –understandingthisemotionallyrather thanjustintellectually

You rememberwhat they sayand how theyfeel, and they

say things thatyou would never

have thoughtof… It is goodthat they pull

you up and say“what about

this?”

We learnt morefrom the service

users than wedid out of

lessons as it wasthem saying how

they felt, theyspoke with suchfeeling and we

really got torelate to them

This sessionhas made me

more awareabout the

sort of nurse Iwould like to

become inthe future

2.3 What do students think about it?

12

Developing effective forms of service user andcarer involvement is not easy, especially if thishas to be done on top of one’s existing workcommitments. It takes time, not least to buildgood working relationships with users andcarers. It requires a willingness to look again atcourse philosophies, teaching methods andlearning and assessment strategies. Also itrequires a humility that allows teaching staffto give up any vestiges of a superior ‘expert’status based on ‘knowing best’.

Inevitably, engaging with such changes canfeel risky and there can be anxieties thatthings could go badly wrong, perhapsaffecting the credibility of the course, oradversely impacting on the mental health ofcontributors. There may be concerns aboutcontributors having a particular ‘axe to grind’.However, experience has shown that, as longas service user and carer involvement isproperly planned and supported (see Section4), such fears have not been borne out inpractice (Tew et al, 2003).

In fact, the pay-offs for teaching staff can beconsiderable in terms of job satisfaction andprofessional development. Differentperspectives and ways of thinking can injectnew life into course content that may havebecome rather boring and repetitive. Staffwho no longer hold on to a practitioner rolemay find themselves much more in touch withcurrent issues in mental health services; andthis may address some of the issues raised in arecent report on lecturers’ clinical activity(Ferguson et al, 2003). Teaching staff maylearn new knowledge, skills and ideas from theservice users and carers with whom they areworking, and benefit from ongoing andconstructive challenges to their value base.They may also discover that service user andcarer colleagues are able to offer personal andprofessional support which differs from thatreceived from other teaching colleagues.

In such ways, partnership working can berevitalising, stimulating and supportive – justas it can be for practitioners who are able toadopt this approach in their practice:

2 Setting the Scene

2.4 What is in it for teaching staff?

It has brought a newdimension to my own

teaching, greatlyenhanced the students’

learning experience and Imyself have learned more

from working with userand carer trainers than I

can easily express

It makes it feel more likeit is not just them and us,and that we are tryingto worktogether

Service users and carers may wish to becomeinvolved in the field of education for a widevariety of reasons. For some, it may be a caseof wanting to give something back, inrecognition of what they feel they havereceived from services. Others may wish to telltheir story to a wider audience. This may ariseout of a positive experience of services or,conversely, repeated experiences of not beingable to tell their story within the services thatwere supposed to be there for them. Othersmay be motivated by a desire to bring aboutchange in professional practice, so as toimprove the quality of services that they andothers receive in the future.

Taking on a positively valued role in educationand training may contribute to a person’s self-esteem, enhancing their process of recoveryand / or capacity to support others (Masters etal, 2002 p.312). Dialogues with peer educatorsmay lead service users and carers to have abetter appreciation of professional perspectives(as well as the other way around): a deeper,more balanced and understanding doctor-patient relationship was seen to result fromresearch into user involvement in the teachingof undergraduate psychiatry (Walters et al,2003).

For some people, involvement may provide astarting point towards ongoing employment(and perhaps qualification) either in the fieldof education, consultancy, or mental healthservice provision; or in the broader world ofwork. (Re)entering employment is a keypriority for many service users, and evidenceshows that it can be positively beneficial forthose with long-term mental health problems – particularly where this can be flexiblytailored to their level of capacity at a givenpoint in time (Sayce, 2000).

Some comments from service usersand carers include:

This is the first timethat having mental

illness was anadvantage

You said that thiswould not be atherapy group, but Ihave found it verytherapeutic

It was a very rewardingexperience and I would

recommend it toanyone

It has been catharticfor me and part of myrecovery; the chanceto raise issues and getprofessionals toreassess their workingand thinking from aservice user point ofview

I have valuedbeing given anopportunity to

have a voice asa carer

2.5 What is in it for service users and carers? ‘

‘13

2 Setting the Scene

be overlooked by services. And service usersmay sometimes feel that carers take over toomuch.

Overall, many service users and carers wouldsay that they have more issues in common thanthose that are different. Most are very willingto work collaboratively in education andtraining contexts, so long as they reserve theright to have their differences; and to usethem to develop students’ understanding.

14

In the past, people with personal experience ofmental distress have faced discrimination whenapplying to mental health programmes asstudents, and for jobs in mental healthservices. This is slowly beginning to change;and now life experience, as either a serviceuser or a carer, is beginning to be seen asvaluable resource.

The explicit involvement of service users andcarers in education can pave the way for bothstudents and teaching staff to be more openabout their own experiences, and for these tobe valued and used as a resource within thelearning process. In turn, this may enable thedevelopment of more effective and user-centred forms of practice. These issues arecurrently being explored by the Mental Healthin Higher Education project.

There can be a tendency for service user andcarer perspectives to be 'lumped together' as ifthey were one and the same. In practice, theremay be many areas where users and carersagree and share common experiences - butthere are also other areas where theirexperiences and viewpoints may differ. Bothusers and carers tend to value those servicesand practitioners willing to work in partnershipwith them and value their strengths andknowledge about what works best inpromoting or sustaining recovery. However,carers have needs in their own right, which can

2.6 Implications for facilitating use of self in practice and education

2.7 Incorporating user and carer input as distinct and complementary perspectives

2 Setting the Scene

Pointers towards goodpractice• Right at the start, there should be an

opportunity for joint planning betweenusers and carers involved with a particularcourse or module - to identify areas wherethey may wish to work together and thosein which they will ‘agree to disagree’.

• Professional lecturers should not usepotential for difference of perspective as abasis for ‘divide and rule’, or to imposetheir own agendas on what should bepresented.

• There may need to be a balance betweensessions in which service users and carersinput together (or it does not matterparticularly whether input is from a serviceuser or a carer), and the creation ofparticular slots within the curriculum tolook at carers’ or service users’ experienceseparately.

• Where perspectives may differ, studentsneed to be enabled to integrate bothwithin their work – perhaps through casestudies or problem based learningapproaches.

• Service users and carers may not wish to beinvolved in the same way. Ask them howthey want to deal with this.

15

3Spectrum ofInvolvement

Service users and carers have the potential tomake a major contribution, not just to directdelivery, but to all aspects of the educationalprocess, and we suggest that this should be anexplicit goal of programmes.

In this section, we will look at each aspect ofinvolvement in turn, suggesting some pointersto achieving good practice, starting with directinvolvement in teaching. We will then move onto consider involvement in course planning,programme management, student recruitmentand selection, practice learning, assessment andevaluation. Finally we will turn our attention tothe role to be played by users and carers onthe other side of training ‘fence’, as courseparticipants.

Each section is illustrated, where possible, byexamples of where service user and carerinvolvement has been, or is in the process ofbeing, implemented. These are offered asexamples of current practice, in the spirit ofthis Guide that there is much to be learnedfrom experience. In following up theseexamples, please bear in mind thatprogrammes and people change and practicemay alter with time.

We have attempted to keep examples brief.Each is accompanied by details of a contactperson from whom more information can beobtained. In addition, further informationabout these and other examples, and updatedcontact details, will be made available on themhhe website. If you have other examples toshare, please get in touch, via the mhhewebsite feedback form www.mhhe.ltsn.ac.uk.or by post (see address on inside front cover).

3 Spectrum of Potential Involvement

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“We initially made the assumption thatprofessionals can deal with the impact andemotional content of our testimonies, andthere was no need to ensure their safety andability to deal with what we had to say.Clearly this is not necessarily the case, andover time we realised that some peoplefound it extremely difficult to respond orreact to what we had said. In some instancesthis led to complete silence in trainingfollowing HUG members’ testimonies. Wetend to live with so much pain and distress,and learnt to speak about it very openly andhonestly – not appreciating that what wasnormal for us, could be very distressing andperhaps shocking for other people (this wasparticularly so in the case of self-harmtraining). Consequently, we made a numberof changes to our training, includingestablishing ground rules to cover allparticipants, a clearer focus on the learningaims of the participants and taking time to‘set up’ training, for instance, explanationabout its aims, what we can and cannotachieve/deliver, ensuring safety to askquestions etc.” Further information about the HighlandUsers Group is available athttp://www.hug.uk.net/ or contact EmmaThomas at [email protected]

Although this is the most common area forinvolvement, it can still feel daunting topotential presenters. It can also feel immenselyrewarding if it goes well – a chance to beheard and an opportunity really to influencethe attitudes and professional practice ofstudents. Many people have started bystanding up at the front of a teaching sessionand telling their stories. However, it must berecognised that this can be stressful, in thatthe material within the stories can be verypersonal and painful. People will need to feelsupported.

A crucial factor in determining how receptivestudents may be to service user and carerviewpoints is the degree to which the rest ofthe teaching team reinforces a value base ofmutual respect between teaching staff,students, service users and carers. This mustallow for challenge to traditional modes ofpractice and take direct experience seriously asa source of knowledge and understanding.

It is disrespectful to service users and carers ifthey are left having to carry their messages ontheir own, and it is unlikely that effectivelearning will take place. It is similarlydisrespectful to students if service users orcarers take out their anger about poor serviceson a captive audience of students. This isunlikely to foster among students theconfidence or the capability to work inpartnership in the future. The Highland UserGroup has given some thought to this. Theircomments relate to the training ofprofessionals but are equally applicable to pre-registration education:

3.1 Direct delivery of learning and teaching

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Increasingly, contributors are finding thattelling their stories within a user or carer ‘slot’may be only one of a number of ways ofcontributing to teaching and learning.

For example, they may:

• invite students to reflect on their ownexperience so that they can begin toempathise with what it is like to be aservice user or carer. During discussion, thepresenter can link students’ feedback torelevant material from their ownexperience or from that of other peoplethat they know.

• be involved in devising problem or enquirybased learning materials to enablestudents to get to grips with issues forthemselves - and then act as consultants orresource people to the groups as they workthrough the task.

• work alongside students as they learnlistening, communication, counselling andother skills. This could involve settingexercises, playing roles and offeringfeedback.

Not all direct delivery has to be face-to-face.Service users and carers may:

• work with students in web baseddiscussion groups or act as e-basedconsultants for problem or enquiry basedlearning.

• be commissioned to make a video or awritten piece about a particular issue orexperience. Art produced by people withlived experience of mental ill-health isincreasingly accessible for use in teaching.Service users and carers could devisequestions for discussion following thevideo or other input and be involved infacilitating this discussion via an e-learningor distance learning package.

Pointers towards goodpractice

• Service users and carers may welcomeopportunities to develop their confidenceand expertise as educators, perhaps bytaking part in ‘training the trainers’workshops or programmes. This may includework on presentation and assertivenessskills, and also input around interactive andstudent centred educational strategies (seeSection 4.7).

• Users and carers with experience in traininghave a crucial role to play in helping others,who may be newer to this area of work, tounderstand their rights and responsibilitiesand to devise strategies for coping withboundaries (e.g. responding to questionswhich may be inappropriate).

• There may be a need for teaching staff tohave opportunities for training andreflection to enable them to respondpositively to the challenges to traditionalapproaches that embracing user and carerinvolvement can bring (see Section 4.4).Students will also require some preparation.

• Making plenty of time for service users,carers and teaching staff to get to knowone another will pay dividends in terms ofeffective delivery of teaching.

• Jointly led teaching with other teachingstaff may be effective in integrating userand carer perspectives within the overallcourse content, while also demonstratingpartnership in practice. However, if they areto work, these sessions need to be agenuine collaboration of equals.

• Service users and / or carers may wish todevise and deliver their own sessions ormodules.

• Most people prefer the support of aco-presenter – either another service user orcarer, or a member of teaching staff thatthey know well.

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Remember- Discuss fully with people what they want to contribute and how they want to do it.

- Ensure that minority viewpoints and experiences are reflected in the teaching – for examplethose of service users from Black and minority ethnic groups or lesbian and gay people.

- Check what support and training people want before their contribution.

- Consider how people can get feedback on their contribution.

- Treat service users and carers as equal contributors. Ensure that payment rates are the same asfor other visiting lecturers (see Section 4.9).

Trainers from Leeds Voluntary Sector MentalHealth Forum and ‘Experts by Experience’have devised and run training session in‘anti-discrimination and mental health’ forundergraduate medical students at LeedsMedical School. These look at the waystigma is all around us, how it feedsprejudice and leads to discrimination.Efforts are made to encourage students toengage with the training on a personal,emotional level, not just intellectually. Sothey are challenged to look at their ownexperience of distress and mental health,their own prejudices and what positivemeasures they can take when they becomedoctors. Contact: Barry [email protected] or Phil Green c/[email protected]

In Barnet, a local service user group (BarnetUser Voice) has been involved in recurrentcycles of workshops to teach interview skillsto doctors training in psychiatry at the seniorhouse officer (SHO) level. Trainees report thatthey are using their experience in everydayclinical practice; and colleagues from otherdisciplines that they have noticed animprovement in trainees understanding ofthe psychological world of patients. Recently,a confidential group has been established inwhich trainees can discuss their own feelingsand responses without users present. Formore information contact George [email protected]

At Middlesex University, the RichmondFellowship Diploma in Community MentalHealth includes a module on “the serviceuser experience”, designed and delivered byservice users. Further information about thiscourse is available on the mhhe websitewww.mhhe.ltsn.ac.uk or from: Peter [email protected]

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Direct involvementacross the disciplines

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A carer and service user are both involved intraining for approved social workersprovided by the South West TrainingConsortium. The carer input consists of anawareness-raising session during the firsttaught part of the programme, duringwhich issues of confidentiality anddifference of opinion are explored. A followup session, during the second block ofteaching, has an explicit focus on “thenearest relative” and draws on trainees’experience on placement. The service userand carer liaise but deliver their inputseparately, and deliberately not “back-to-back”. User and carer input has increasedover time at the request of the trainees, andnow encompasses assessment, based on anextended interview with a service user andnon-related carer. An opportunity to shadowa more experienced trainer at the outset isprovided and users and carers are activelyencouraged to sit in on, or participate in,any session of the programme that theychoose. For further information contactStella Harris [email protected]

A very helpful range of examples of userinvolvement in social work training (notspecifically mental health related) can befound in the Social Care Institute forExcellence knowledge review on “Involvingservice users and carers in social workeducation” (Levin, 2004) and the report“Learning and Living together” (GSCC/SCIE,2004) – both available at www.scie.org.uk

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Involvement intraining -something different

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Scenarios• In the medical school at the University of Leeds, a series of

workshops was held to consider how service users could mosteffectively be involved in facilitating student learning ofcommunication skills. Through a project, funded by the HigherEducation Academy Subject Centre for Medicine, Dentistry andVeterinary Science, people with lived experience of mental distresshave been involved in devising "simulated patient roles". Theyhave also been involved in helping students to develop theirawareness of their own vulnerabilities and needs, and skills inlooking after themselves; breaking down some of the stereotypesabout how doctors and patients differ. They will be helping todeliver these inputs into student learning and assessment duringthe next academic year. Contact: Penny [email protected]

• A one-day accredited training event for GPs brought together usersand carers to present their experience. Adopting a morecollaborative approach the following year, the organisers devisedscenarios for the GPs, users and carers to explore together. Forfurther information, contact David Shiers,[email protected]

• At Sheffield Hallam University a group of mental health serviceusers and carers has been developing case studies forinterprofessional action learning sets (both face to face andon-line) Contact: Helen Armitage [email protected]

Art and Creative Writing• Premila Trivedi designed and runs a creative writing course for

occupational therapy staff (4 half day sessions over a four monthperiod); describing this as “the most exciting bit of training I haveever done, allowing me and other users to use our own copingmechanisms (ie creative writing) to educate OccupationalTherapists”: Contact: [email protected]

• Aidan Shingler has provided training for professionals using slides ofhis “Beyond Reason” exhibition – an exploration of schizophrenia inpictures and words. Aidan can be contacted via his website:http://www.beyondreason.org.uk/

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Drama• A short, humorous play about a group of

patients in a psychiatric unit was writtenand performed by a survivor group. AnOpen University tutor, who saw the playand recognised its potential as a teachingresource, helped to obtain funding forproduction of a video for use in a newOpen University Mental Health course,Challenging Ideas in Mental health. Forfurther details contact: Terry [email protected]

• The TELL (Training, Education, Listeningand Learning) Group in Lisburn, NorthernIreland is made up of service users andprofessionals, working together to achievechange. Members use their experiences,expertise and knowledge to providetraining in mental health awareness whilealso endeavouring to begin to tacklestigma. Group members devise role playsthrough talking about their ownexperience, what they have founddifficult, what has worked well and whatmight be done differently in the future.These are then used in training sessionswith students, mental health professionalsand others. Recently the group workedalongside a playwright and anactress/director to develop skills which willfurther enhance their ability to usecreative approaches in their training.Contact: [email protected]

An e-learning module• Under the UK Healthcare Education

Partnership, a team from City Universitycollaborated to produce an e-learningmodule on user and carer involvement.Details can be found on the UK HEPwebsite: www.ukhep.co.uk. The authorsof the module have now beencommissioned to produce a similar moduleon user and carer involvement in primarycare for the Graduate Primary CareMental Health Worker programme.Contact: Ian Light [email protected] orJulie [email protected]

A panel of experts byexperience• The CAPITAL project has been involved in

training multidisciplinary teams ofworkers in West Sussex, using thePsychosis Revisited materials (Bassett et al,2003). An “interview panel” was set up inwhich the director of CAPITAL interviewedtwo other service users. Studentssubmitted additional questions on post-it-notes which were vetted and groupedduring a break in the session. For furtherinformation, contact Mark [email protected] or see the casestudy at www.mhhe.ltsn.ac.uk

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From the ‘early days’, when service users andcarers were only involved in planning theirown sessions, we have now moved to asituation where it is more common for serviceusers and carers to participate as members ofthe teaching team that will design and deliveran entire module or programme.

Where courses are already running, it may notbe feasible to ‘go back to the drawing board’and make radical changes. However, there maybe possibilities for incremental developments,and service users and carers can be fullyinvolved in taking these forward. Furthermore,when programmes come up for revalidation, orwhere there are major changes in externalrequirements, this can be used as anopportunity for more far reaching consultationwith service users and carers as keystakeholders.

One issue that needs to be clarified from theoutset is what value is going to be attached touser and carer perspectives. Are they going tobe seen as:

A. additional viewpoints that merit somelimited consideration alongside theestablished ‘professional’ approaches thatform the core of the programme

B. equally valid perspectives to be introducedas part of a critical dialogue betweendifferent (and potentially competing)viewpoints, or

C. setting the core agenda and value base forthe whole module / programme, so thatthey influence how all inputs arepresented?

While A may be seen as a useful starting point,we would suggest that only B or C form thebasis of good practice.

It can also be helpful if service user and carerinvolvement is part of a spectrum of externalinput, which also draws on the experience, andperspective of practitioners.

3.2 Course / module planning

Pointers towards goodpractice• Where is the planning done? Is it in an

environment which feels comfortable toservice users and carers? Practicalities likeoffering people lunch, having regularbreaks and not making meetings too longcan make a big difference.

• Who is involved? Do service users or carersfeel like a small minority within theplanning team or is representation moreequal? Being the only service user / carercan feel intimidating unless there havebeen opportunities to get to know othermembers of the teaching team very well.This may be compounded if the service useror carer is also the only Black person oryoung person in the room. Do service usersand carers have back-up and support froma wider reference group or user / carer runorganisation?

• What do service users and carers feel it isimportant to cover within the overallbreadth of the course? Every aspect ofteaching and learning should incorporatethe experience of users and carers even ifthey are not directly involved in a particularsession or event. Service users and carershave begun to be consulted about thecontent of national training programmes,and this needs to be reflected at the locallevel.

• Do service users and carers have full accessto library, IT, photocopying, administrativesupport and other resources that areavailable to other members of the planningteam?

• Service users and carers should be involvedin developing reading lists that lookbeyond traditional material and include thegrowing literature that has been producedby, or in conjunction with, service users andcarers.

Remember: Always consult with service usersand carers from as early a stage as possible,and make them equal partners

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Content of training - Service user views• What did service users feel should be included in the training of the

new Primary Care Graduate Mental Health Workers? For furtherinformation about a recent consultation contact Colin Gell [email protected] or see the mhhe website www.mhhe.ltsn.ac.uk

• At the University of Nottingham a service user group, Making Waves,was commissioned by the School of Nursing to makerecommendations about the pre-registration mental health nursingcurriculum. The group met five times and produced a report whichincluded recommendations about the content of teaching. Fundinghas now been obtained from the university teaching and learningdevelopment fund to take this initiative forward in the form of thePINE project (Participation in Nursing Education). For moreinformation, contact: [email protected] or Torsten [email protected]

• Service user and carer representatives, including people withexperience of mental health services, were consulted at the planningstage of the new social work degree and their recommendationswere a key influence in the development of the requirements forsocial work training (Levin, 2004)

Involvement in course planning• A reference group advises on user and carer input into the North

East Approved Social Work Programme. It meets three to four timesa year at the base of one of the service user groups. Attempts havebeen made to involve all parties at each stage (e.g. reporting back toprogramme management board on developments/suggestions made)so that “there is a shared sense of ownership in moving forward”.For further details, contact Jeanie Molyneux,[email protected]

• At the University of the West of England, carers have been involvedin development of the new MSc in mental health and BSc in acutein-patient care as well as in contributing to the pre-registrationnursing programme. Contact: Chris Chapman [email protected]

• In the School of Nursing at the University of Southampton, a userreference group was established to contribute to the design, deliveryand evaluation of pre- and post-qualifying mental healthprogrammes. This included representation from many user and carerorganisations. For further information, contact Steve Tee [email protected]

To ensure that a programme is user and carerfocused it can be very helpful for service usersand carers to be involved in its management.This may suggest the need to review currentpractice. The meetings of many conventionalmanagement groups can, to an outsider, seemlengthy, boring and impenetrable. Moves tomake processes more transparent and easy tounderstand may actually be of benefit to allinvolved.

As an example, it may be useful to establishperiodic strategy and decision-makingmeetings, separate from the day-to-dayrunning of a course, and to prioritise serviceuser and carer involvement in those. It may behelpful to look at decision making processes toensure that, however unintentionally, they donot reproduce bad experiences service usersand carers may have had elsewhere in themental health system e.g. of beingmarginalised, patronised or ignored.

As a general rule, there should always be morethan one service user and carer involved and itwould be preferable if a group of people couldbe involved (perhaps on a rota basis), therebybringing a wide range of experiences to therunning of the programme and not puttingtoo great a burden of responsibility on to oneperson. Involvement in programmemanagement often evolves from engagementin direct teaching:

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3.3 Programme management

Involving children andyoung peopleAt Anglia Polytechnic University, youngpeople have been involved in delivery ofteaching on a new BSc (Hons) and MScprogramme on child and adolescent mentalhealth. An initial approach was made to alocal advocacy group run by MIND whereservice users were already involved insupporting other children and young peoplewith mental health problems. The nature ofthe advocacy service, and its orientation tothe needs of young people, meant that theinitial meeting had to be scheduled out ofworking hours at a weekend. A key factor inthe success of this project was ensuring thatthe young people had a sense that this was“their show” and an opportunity to influencepractice. It is intended that involvement indirect delivery will now lead on tocontribution to the programme managementcommittee.

Contact: Steven Walker [email protected]

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There is a growing acknowledgement ininterview criteria, across all disciplines, of theimportance of both academic ability and‘people skills’. Yet service users continue toexpress concern about the values and attitudesof some of the staff they encounter in practice.The active involvement of service users andcarers in interviews, alongside academics andpractitioners, can significantly enhance anassessment of how a potential recruit relatesto other people.

An additional benefit of involving service usersand carers in recruitment and selection is that,right from the start, potential students can seehow the experience of service users and carersis valued. This can serve as an effective way ofadvertising the value base of the programme,and of moulding the attitudes andexpectations of students. Where places oncourses are offered without interview, as is thecase in some programmes, the involvement ofservice users and carers at open days is ofparticular importance.

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Pointers towards goodpractice• Involve service users and carers in discussing

course management structures and how meetingswill operate. How will decisions be taken, forexample? If there is disagreement, how can it beensured that service users and carers will notalways feel outvoted or over-ruled?

• Discuss with service users and carers how theywish to contribute to meetings. Would theywelcome a user and carer “spot” on the agenda,and/or a chance to contribute to all areas of thediscussion? Pre-meetings for service users andcarers can be a real help in enabling people to‘get up to speed’ and consult with each other onany issues or concerns and how these will beraised in the meeting itself

• Other management group members may needsome training in involving service users andcarers. Local service user, advocacy and carergroups can be a valuable source of advice,training and information about current issuesfor service users and carers.

• Consider where and when a meeting is to beheld. Have people been given sufficient notice?Is 9 o'clock Monday morning or 4 o'clock Fridayafternoon really the best time? Does a meetingreally need to last three hours without a'comfort break'? Will the room feel comfortableto service users and carers?

• Papers for meetings - are they too difficult toread and too long? Are there other ways thatinformation can be given?

• Put in place agreed arrangements for follow upsupport for people to debrief where meetingsmay have been heated or difficult.

• Would it be possible to employ a service user orcarer as a joint module / programme co-ordinator?

Involving service users inprogramme management.• The recently launched COMENSUS project

at the University of Central Lancashire willinvolve a range of service users in allaspects of learning and teaching includingprogramme management. For moreinformation contact Mick [email protected] or EileenJohnson [email protected]

• At Oxford Brookes University, a group ofservice users will be established to adviseon all aspects of training across all areasof health and social care For moreinformation contact Bill [email protected]

• At City University service users and carersare involved in teaching and as membersof the programme management teams inmental health nursing and inter-professional practice in health and socialcare. For more information contact PatrickCallaghan [email protected]

3.4 Recruitment and selection of students

Remember• Always ask service users and carers how

they want to be involved.

• Practicalities like offering people lunch, ensuring accessibility of the venue, having regular breaks and not making meetings too long can make a big difference.

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Pointers towards goodpractice• Wherever possible, service users and carers

should be involved in the whole process ofrecruitment and selection from how thecourse is publicised, through to the short-listing and interviewing of students.

• In order for participation to be coherentrather than tokenistic, service users andcarers need to be partners in drawing upclear selection criteria in advance andcontributing to shortlisting meetings. Theremay be a need for open debate and widerconsultation at this stage.

• Be creative in exploring with people howthey might be involved both in ‘paper’selection processes and in individual orgroup interviews – e.g. they may wish to beinvolved in drawing up agreed interviewquestions, but not in acting as interviewers,although they might wish to participate asobservers.

• Joint briefing and training sessions shouldbe provided for service users, carers andteaching staff to help them to worktogether effectively. These should includeinput on equal opportunities and clearpolicies on confidentiality.

• If the involvement of users and carers inselection processes is to be meaningful,they should be equal members and theiropinions given equal value. If there aredifferences of view, there must be a clearunderstanding of how these will beresolved in a way that gives equal weightto all members of the selection team. Onepossible approach is to give eachparticipant an individual right of veto, aslong as this is linked to the previouslyagreed selection criteria.

Remember:It is important to ensure that the group ofpeople involved is inclusive of the diversity ofpotential candidates, with regard to race,gender etc.

Examples of involvingpeople in recruitment & selection• In the social work department at the

University of Birmingham, a panel ofservice users and carers is involved in theselection of all students. For more information [email protected]

• In the West Midlands service users andcarers are on the steering group and willbe involved in the selection of trainees forthe new doctoral training programme inClinical Psychology. For more information contact Helen Dentat [email protected]

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Practice learning provides the idealopportunity for students to explore how tobuild constructive partnerships with serviceusers and carers, and to learn about mentaldistress, and problems of daily living, fromthose with immediate and direct experience.How well this works out in practice candepend on the ethos of the placement setting– are practice supervisors and other teammembers modelling a genuine commitment toworking with people, rather than performinginterventions upon them?

Over and above maximising the opportunityfor students to learn from, and with, those forwhom they are providing a service, it isimportant to explore how other service usersand carers may also input into their practicelearning – perhaps as consultants or mentors.

This may involve a joint approach betweenHigher Education Institutions and the Trustsand other agencies where students undertaketheir practice. In some instances this may bemade easier where service users and carers arealready actively involved in service delivery –for example as consultants within assertiveoutreach teams, or in running support groups.In other instances, a course may takeresponsibility for training up service users andcarers in supervision skills so that they canwork alongside practice supervisors insupporting the students’ learning.

3.5 Practice learning Pointers towards goodpractice• Are service users and carers involved in the

training and continuous professionaldevelopment of practice supervisors? Are thereother mechanisms for ensuring that they are‘on message’ in relation to partnershipworking?

• As well as having to demonstrate any specifiedpractice competences, students should alwayshave explicit learning objectives focused ondeveloping their ability to work in partnershipwith service users and carers – demonstratingattitudes, values and people skills in line withthe Ten Essential Shared Capabilities (Hope,2004).

• Is there any possibility of students havingsome of their practice learning experiences ina service user or carer run organisation, or ina setting (such as a voluntary organisation) inwhich service users and/or carers play asignificant role in setting the direction of theservice?

• Where students are placed in moreconventional settings, could they have somesupervision or consultancy from service usersand carers – perhaps in the form of a groupsupervision session in which they present anddiscuss their work. There would need to bestrict safeguards to ensure confidentiality – byanonymising material and / or by involvingservice users and carers from a different locality.

Remember: Individuals and carers who are receiving serviceshave an absolute right to a service that is tailoredto meet their needs and not the learning needs ofa student.

Involving people in practice learning- where is it happening?We did not find it easy to find examples of theapproaches outlined above, but there are clearexamples of work which has potential fordevelopment.

Client attachment

The idea of “client attachment” (Turner et al,2004) allows student nurses to gain practiceexperience through forming therapeuticattachments with individual users of services,

rather than through a series of location basedplacements. The above paper describes a pilot projectthat evaluated client attachment with preregistrationstudent mental health nurses. Using semi-structuredinterviews, the researchers identified the students’,their supervisor’s, and the service users’ experiences.Most participants agreed that students were able tolearn relevant and appropriate skills, and toconsolidate experience - increasing motivation,autonomy, organisational skills, and confidence. Whilstnot having a specific focus on the role of service usersand carers as educators, this approach has clearpotential for the closer involvement of users of servicesand carers in supporting students’ learning.

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Pointers towards goodpractice• Students should be made aware how users

and carers will be involved in theirassessment and the rationale for this.

• Organise preparation and training sessionsfor service users and carers, including jointsessions with other teaching staff (egmoderation exercises where they are goingto be formal markers). Value the particularskills or perspectives that they bring.

• Service users and carers should be involvedin devising assessment strategies and settingcriteria as well as providing feedback orundertaking marking

• Role-plays, practice portfolios, accounts ofproblem or enquiry based learning, orassignments which relate to students’developing value base and professionaldevelopment may lend themselvesparticularly well to feedback or assessmentby service users and carers.

• At least initially, service users and carers maytake longer to undertake marking – and thiswill need to be allowed for.

• Offer support – particularly when peoplemay feel the need to give negativefeedback. Can they easily seek advice and /or a second opinion? Rather than workingin isolation, can timeslots be arranged inwhich service users and carers can undertakemarking together, perhaps alongsideteaching staff?

• Universities and professional bodies mayneed to revise criteria for the appointmentof external examiners in order to open theway for service users and carers withexperience of assessment to be appointed.

Remember:Always consult service users and carers about how they want to be involved.

3.6 Student assessment

A useful first step is for service users andcarers involved in the programme tocontribute feedback on students’ academic orskills-based work. Alongside this, those whoreceive direct services from a student onplacement may be invited to contributestructured feedback on particular areas of thestudent’s capability, attitudes or skills. Otherteaching staff can then take this feedback intoaccount in giving a final mark. If this approachis used, there is a need to ensure that people’sviews are taken seriously and that this is not atoken exercise.

Arrangements for obtaining feedback inplacement settings need to ensure thatstudents do not feel that they have toappease service users and carers in order toreceive a positive assessment, and service usersand carers feel safe to give honest feedback inthe knowledge that it will not affect theservice they receive. One model would be forthe practice assessor to ask specific questionsthat focus on values and skills (and notwhether they were ‘nice’). These questionscould be devised in conjunction with serviceuser and carer consultants, to ensure that theyare relevant and understandable.

This could be the first step in a process inwhich some service users and carers, withappropriate training, may become markers intheir own right – perhaps marking jointly inthe first instance. Within some disciplinesthere is a long history of non-academics(usually practitioners / clinicians) markingstudents’ work – and this has worked wellwhere marking guidelines are clear. Similarprinciples could be applied in relation tobringing on service users and carers asmarkers. With a suitable level of experience,service users and carers might ultimately beable to contribute a valuable perspective asexternal examiners.

Such progress may entail overcoming certainbarriers – in terms of reviewing formalacademic regulations and procedures, and interms of exploring attitudes on the part bothof teaching staff and of service users andcarers themselves.

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At the University of Birmingham users havebeen involved in providing feedback onstudents’ portfolios of evidence submittedfor a module on User Participation andRecovery on a master's degree in communitymental health. Training is provided for theuser markers, along with opportunities forthem to come together with students toexplore the learning outcomes for themodule and how they might be evidenced.For further information contact Diane [email protected]

Jewish Care obtained funding fromCCETSW in April 2001 for a project toexamine the costs and benefits of serviceuser involvement in the assessment ofcandidates for the Certificate inCommunity Mental Health. User assessorswere involved in designing assignments,reading them and (in three way meetingswith the student and accredited assessor)providing feedback. Both assessors andcandidates found service user feedbackhelpful and it contributed to learning onall sides. The project was steered by aconsultant, Fran McDonnell, and had a verythorough approach to selection, training,support and payment of service users. Awider reference group of service usersdecided on the selection criteria andappointment process for user assessors. Theinitiative is now in its third year. Forfurther details, contact Erica [email protected] [email protected]. A full report on this project is available onthe good practice guide section of themhhe website www.mhhe.ltsn.ac.uk

A model for involving service users inclassroom work was set up and subsequentlyevaluated in 1998 (Wood and WilsonBarnett). The method involved collaborativeclassroom activities with students, userrepresentatives and lecturers to explore thedynamics of an assessment recentlyundertaken by a student in practice. ContactJanet Wood [email protected]

At City University a project has been set upto consider how users and carers can mosteffectively contribute to assessment. IanLight would be interested in hearing fromothers with an interest in developing goodpractice in this area: [email protected]

The MIND Day Centre in Hereford hasbeen used as a placement for studentnurses from University College Worcestersince 1996. Service Users are involved inproviding feedback on the student’splacement as it proceeds. Service users areasked: how they got on with the students;whether they felt listened to and how thiswas demonstrated; whether they felt thattheir experience was understood; whetherthe student followed through on whatthey had said that they would do; whetherthey ever made the service user feeluncomfortable. Feedback from the overallmembership is collated by “memberrepresentatives”, cross-referenced with theAssessment of Practice criteria statementsand contributes to the overall assessmentat the end of the student’s placement. For further details, contact: Phill [email protected] or Julia [email protected]

Users and carers asAssessors

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In many instances, evaluation consists ofstudents completing satisfaction questionnairesand / or taking part in group discussions at theend of a module or course. It would bestraightforward for service users and carerswho have contributed to the module / courseto take part in such an evaluation process.

Contributors could be invited to completequestionnaires about how they experiencedtheir involvement (see Section 5.1) and to takepart in discussions with students and teachingstaff. Alongside this, students could be askedto comment specifically on how they saw theintegration of service user and carerperspectives within the course / module, andon the ‘added value’ to them (if any) of havingservice users and carers involved in theirlearning (see Section 5.2).

There may be a desire to go beyond this andevaluate outcomes – what difference hasservice user or carer involvement made interms of students’ subsequent practice? Has itequipped students with values and capabilitiesthat are relevant for practice within a modernmental health service? And has it deliveredoutcomes in terms of the values, attitudes and‘people skills’ that are most valued by serviceusers and carers (see Barnes et al, 2000)?

To take this forward, commissioners andproviders of mental health education wouldneed to work with service users and carers andother stakeholders in determining the criteriato be used to evaluate programme outcomes(Forrest & Masters, 2004). Once these areagreed, service users and carers could play avital role in evaluating the extent to whichthese outcomes are achieved. There is nowconsiderable research expertise around serviceuser and carer evaluation of services (Rose,2001). This could potentially be applied toevaluating how courses impact on students’capabilities in practice.

3.7 Course Evaluation Pointers towards goodpractice• It can be valuable for service users and carers who

contribute to the programme to give regularfeedback on process issues as the course isprogressing

• If outcomes in terms of students’ practice are tobe evaluated, service users and carers may needtraining in research / evaluation methods toenable them to be involved. Growing numbers ofservice users and carers are involved inmonitoring and evaluating mental health services,and may prove a valuable resource.

• If service users and carers are suggestingimprovements or changes, how will programmesdeal with this?

• How is any external evaluation going to beresourced? Who will have access to and beexpected to read reports – for example,commissioners, professional bodies involved inaccrediting courses and, in higher education, theQuality Assurance Authority (QAA)?

Service user involvementin course evaluation• Service users are involved in evaluation of courses

on the Nursing Programme at the University ofSouthampton For more information contactSteve Tee at [email protected]

• At City University carers and service users areasked to participate in regular sessions toevaluate modules/programmes for nursing andinter-professional practice in health and socialcare. For more information contact PatrickCallaghan at [email protected]

• A research project at Imperial College aimedto compare the impact of teaching deliveredby professionals with that delivered by serviceusers on undergraduate medical studentattitudes to mental ill-health. What began asresearch has now been incorporated into thecurriculum. Contact: Mike [email protected]

• The SUITE training the trainers initiativeincludes training for service users inmonitoring and evaluation of training. ContactSteph [email protected]

Support tostudents withexperience ofmental distress• Students in Mind is a new project which

will recruit, train and support studentvolunteers to support other students whoare experiencing mental distress. Theservice will act as a stepping stone toother services:www.studentsinmind.org.uk

• On the social work programme at theUniversity of Bristol, thought has beengiven to development of a support groupfor students experiencing mental healthproblems, run by an external facilitator.Joan Langan would be interested inhearing from others considering similardevelopments. Contact: Joan [email protected]

• The website of the Oxford Student MentalHealth Network has links to a number ofuseful resourceshttp://www.brookes.ac.uk/students/services/osmhn/as does the briefing paper recentlyproduced by the National Disability Team(Wray, 2004) available fromhttp://www.natdisteam.ac.uk

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In the preceding sections, we have talked aboutservice users and carers contributing to theprovision of teaching and learning in a varietyof different ways. It is equally important toencourage service users and carers to take partin the learning, as students or courseparticipants.

Whereas, in the past, students with abackground of direct experience of mentaldistress often faced discrimination when seekingto enrol for mental health courses orprofessional training routes, such experience isnow starting to be seen as a positive asset bymany programmes – both in terms of thestudent’s ability to comprehend mental healthissues, and in terms of their potential capabilityas a practitioner.

As a response to the Special Educational NeedsDisability Act 2001, there is a growingawareness within higher education of the needsof students with mental health problems and arange of support structures are developing inresponse to this. There is now a legal obligationto ensure access and make ‘reasonable’adjustments for such students – and failure todo so could result in legal challenge. Suchadjustments may include having a friend orcarer to accompany them in teaching sessionsduring periods when they may feel a littleunwell or under-confident, making adjustmentsto assessment strategies so as to minimise stressand anxiety, or ensuring that they can accessstudent counselling services should they need to.However, a potential area of discrimination thatcan remain relates to the criteria used withinoccupational health checks, where these arerequired for particular forms of professionaltraining.

In addition to enabling service users and carersto participate as students working towards arecognised qualification, it may be possible toinvite them to join in the learning process ofparticular modules or sessions. Theirparticipation in exercises and discussions may bevaluable as a first step to build up confidence

3.8 Service users and carers joining courses as participants

and understanding before enrolling on a moreextended course of study. Just as important maybe the benefits to other students in learningfrom their knowledge and perspectives andexperiencing how to ‘do’ partnership at firsthand within the learning peer group. Thisapproach has a unique potential to break downbarriers between ‘us’ and ‘them’ – or to preventsuch divisions occurring in the first place.

Joiningcourses/modules asparticipants

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Pointers towards goodpractice• Literature and other information about

courses should positively encourageapplications from service users and carers

• Regular contact should be made withuser/carer networks and service providers tomake it clear that participation by serviceusers and carers is welcomed.

• If someone with a declared mental healthdifficulty is showing interest in a particularcourse, ensure that they are given as muchencouragement as possible, and that theyare informed about what specific forms ofassistance or adjustment they may expect.

• Effective support may involve close liaisonand joint working between support servicesin Higher Education Institutions andservices or support systems outside.

• People may need periods of 'time out'?How can any time lost be made up?

• Be imaginative in considering howparticular sessions or modules of aprogramme may be opened out to serviceusers and carers as participants, withouttheir having to enrol for a qualification.They should be provided with a Certificateof Attendance – which may prove helpful ifthey later wish to apply to join a moreextended course of study.

• If service user or carer participants are notgoing to receive a recognised qualificationor award, or some other tangible benefit,they should receive payment for their time.Funding for this may be sought, fromsponsoring Trusts or local authorities.Alternatively, funding may be available bylinking in to wider social inclusioninitiatives that encourage widerparticipation in education or seek to enablepeople with disabilities to gain access toemployment.

• All teaching staff, including user and carertrainers and external practitionercontributors, need to be made aware thatthere may be students / participants whohave direct experience of mental distress –and they need to make sure that this isrespected and valued.

Remember:Ensure that service user and carer participantsare treated as equals: no discrimination!

Moving On• Moving On is an informal group of people

who have used or worked in mental healthservices who undertook ‘training the trainers’programme together funded throughNorthern Birmingham Mental Health Trust.Having experienced the liberation ofbreaking down barriers within the group,Moving On successfully negotiated withBirmingham Social Services that local serviceusers were offered places on in-houseIntroduction to Mental Health and ASWContinuing Professional Development courses,and would be paid for their time as thiswould not lead to any recognisedqualification for them. An ASW participantdescribed this as her first experience of‘genuine partnership training’. It allowed theexploration of complex practice issues withina learning group where everyone was, firstand foremost, a human being, and was notdefined by their label as user or professional.For more information, contact StewartHendry [email protected]

• A number of programmes, such as theRECOVER programme, and the OpenUniversity modules “Mental Health andDistress” and “Challenging ideas in mentalhealth,” actively encourage the involvementof service users as participants and have giventhought to how to recruit and support them.For more information contact Di Bailey(Recover programme) [email protected] Jeanette Henderson (Open University)[email protected]

• At the School of Nursing at the University ofSouthampton a “cooperative enquiry“between nursing and social work studentshas been established. For further informationcontact Steve Tee [email protected] or readthe case study written by Steve and TinaColdham on the mhhe websitewww.mhhe.ltsn.ac.uk

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4 Initiating and Sustaining Involvement

In this section, we explore some practical stepstowards achieving sustainable service user andcarer involvement – including how toovercome some of the common barriers facedby individuals and by organisations. We alsolook at some of the infrastructure andpracticalities that may need to be sorted out ifinvolvement is to be effective.

4.1 Getting started (or getting moving again): what are the barriers and how canwe overcome them?

Teaching staffSome of the most common barriers may be:

1. isolation

2. lack of information

3. inertia – it can feel a lot easier to carry onwith familiar ways of doing things

4. the existing culture of the course and / orthe institution may feel hard to challengeor change

5. lack of time to reflect, discuss and plan

6. lack of resources

How to overcome these:

1. Being a lone voice trying to bring aboutchange can feel a very daunting position tobe in. It can be vital to seek allies –identifying those colleagues who may seemmore favourably disposed towards embracingservice user and carer involvement and/orseeking out colleagues in different disciplines,or those working in other institutions.Bringing up these issues, formally orinformally, within professional networkmeetings may be a useful source of support.

2. We hope that this Guide will provide someuseful information. Beyond this, a number ofuseful articles, reports and guidance notesare listed in Section 7.

3. A sense of inertia may be driven by fears andanxieties – what might one have to lose interms of respect and status, and will one findone has the skills and approach necessary towork alongside service users and carers? Itmay also be driven by ongoing pressure ofwork, burn-out and stress. These may beserious issues for teaching staff irrespective ofwhether they are working alongside serviceusers and carers – it is just that any potentialinnovation is likely to bring these issues to ahead.

4. There may well be aspects of the existingculture of the course or institution whichseem resistant to change. This is discussedmore fully in Section 4.4. In general, it maymake sense to start small – negotiatinglimited opportunities to pilot new ways ofworking, and trying to identify potential‘easy wins’ where benefits may be relativelystraightforward to establish. Thoroughevaluation of these limited successes maythen be used to make the case for more farreaching change.

5. Within the context of competing demands ontime, it may be hard to carve out sufficienttime to think about developing service userand carer involvement. However, as thisexpectation is increasingly placed on courses,managers may be willing to support somereallocation of duties in order to allowcommitted individuals to take this forward.

6. There are likely to be resource implications.However, small sums of money can go a longway in inviting the first service users andcarers to come on board and begin to make ameaningful contribution.

Service users and carersSome of the most common barriers may be:

1. isolation

2. lack of confidence and self-belief

3. feeling ‘blitzed’ by jargon

4. lack of understanding of learning andteaching strategies

How to overcome these:

1. It can be crucial to have the support ofothers – e.g. joining (or forming) a user orcarer group or network. Mental healthTrusts, local authorities, MIND, Rethink orother voluntary organisations, or NIMHERegional Development Centres may havedetails of support or training groups thatalready exist locally.

2. While contributing to education andtraining may not suit everyone, a surprisingnumber of service users and carers, from allsorts of backgrounds, have found that theyhave something valuable to offer. Most ofthese, at the outset, would not havebelieved that they would subsequently beable to do what they have done. Anopportunity to talk to an ‘old hand’,perhaps through a support group or atraining session, can be an inspiringexperience. Specific training aroundassertiveness and presentation skills, andaround different approaches to teachingand learning, can also be particularly helpful(see Section 4.7).

3. Unfortunately, in any field, people can tendto develop their own specialist language orshorthand – and this can feel very excludingto an ‘outsider’ coming in. Educators needto recognise this, start to use less jargon andexplain what they mean better. They mustalso encourage service users and carers toask (and keep asking) what particular termsor abbreviations mean until they areunderstood by everyone.

4. User and carer involvement means thateveryone involved will have to find newways of delivering learning. No-one has allthe answers and everyone is on a steeplearning curve together. Experience ofreceiving services or supporting others canbe valuable in coming up with imaginativeand creative ways of facilitating students’learning.

Course managers Some of the most common barriers may be:

1. competing pressures and priorities

2. uncertainty in leadership due to lack ofpersonal experience of service user andcarer involvement in education

How to overcome these:

1. Key into the ‘top-down’ levers for changein terms of policy guidance (including theNational Service Framework) andworkforce development strategies. Thesecan be used to justify the importance ofservice user and carer involvement as apriority.

2. Find (or recruit) ‘champions’ who have theexperience, links and personalcommitment and support them in workingup proposals and leading change withincourse teams. Alternatively, employ serviceuser or carer consultants to facilitate thedevelopment process.

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• a commitment not to use power positionswithin hierarchies or organisations as abasis for forcing through decisions ormaking it appear that certain opinions orperspectives are more valid than others

• agreeing language that feels comfortableto everyone to use. This may involve givingpermission to challenge any form of‘jargon’, and any terms which individualsmight find demeaning or oppressive (andthis may include commonly used terms suchas ‘personality disorder’). However, it mustalso be recognised that getting too hungup on ‘politically correct’ language can getin the way of making progress onsubstantive issues.

3. In devising a strategy, it may be helpfulboth to identify longer term goals andsome shorter term ‘easy wins’ – somechanges that could be implementedrelatively easily in order to start the ballrolling, such as identifying particularteaching sessions or modules where userand carer involvement could be particularlyvaluable. It may also be helpful to identifywhat may be specific barriers to change(e.g. budgets), and explore how these maybest be overcome within the local context.

4. Employing service user or carer consultantsto work with a programme may beparticularly effective in breaking downcertain sorts of barriers – particularly wherethere is a need for attitudinal change, orfor more information about how thingsmight be done, based on experienceelsewhere.

5. In time, the Steering Group – in terms of itsrange of representation and its way ofoperating - may provide a prototype onwhich to base more inclusive managementstructures for the programme as a whole.

4 Initiating and Sustaining Involvement

For those programmes which have yet toinvolve service users or carers, making the firststep can seem quite daunting. Otherprogrammes may have made some progressbut have run out of momentum. Here aresome suggestions:

1. Set up a Steering Group to devise andimplement a strategy that is tailored to thespecific needs to the course and thelocality. To be effective, such a group mayneed to comprise:

• a senior representative of the managementof the course (perhaps the Head of School,Academic Dean or Training Manager). Itmay help in terms of freeing up theirparticipation in the process if this persondoes not automatically have to take onresponsibility for chairing the group.

• members of teaching staff who areparticularly enthusiastic about championingservice user and carer involvement

• service users and carers – drawn from alocal group or forum, or via personalnetworking

Practice educators and student representativesmay also be involved

It is likely to work best if there are roughlyequal numbers of management / staff andservice user / carer members. For service usersand carers, the ‘Noah’s Ark‘ principle can becrucial – being the lone voice among a sea ofunfamiliar faces can be a particularlydisempowering experience. Therefore havingone or two interested ‘reserves’ can be veryuseful so that they can step in if someone isunwell or otherwise committed.

2. Before working up a strategy, it can beimportant to discuss and agree the basic‘groundrules’ which will underpin howpeople will work together. These mayinclude:

• a commitment to value equally everyone’sexpertise, whether it is derived fromexperience as an educator or from directexperience of living with mental distress

4.2 How to get started – one approach

Historically, one way in which individual serviceusers and carers have been disqualified bypowerful vested interests is to argue that theyare not representative because they aresomehow not like ‘typical’ service users orcarers (perhaps because they have found theconfidence to speak up for themselves). Thistest of representativeness is discriminatory as itis not applied to other potential contributors –a social worker does not usually have to justifythat they are representative of social work ingeneral in order to be allowed to offer theirinput.

Increasingly, service users and carers are able tobase their contributions, not just on their ownexperience but also on the findings from userand carer research, a growing literature ofpersonal accounts, and by actively finding outabout others’ experiences, for example byliaising with patients’ forums and carersgroups.

However, often without realising it, certainservice user and carer organisations can tendto encourage one ‘sort’ of user or carerviewpoint rather than another, therebyimplicitly discriminating against those whoseexperiences may differ from the majority.

Research shows how wider forms of socialinequalities impact on the mental health field(Pilgrim and Rogers, 1999; Tew, in press).Women, people from Black and minority ethniccommunities, and lesbian and gay people maybe more likely to be diagnosed with mentalhealth difficulties. They may also be treated inways that are experienced as particularlyoppressive or disrespectful, and which ignoretheir specific needs and identities. As aconsequence, such groups may be morereticent about becoming involved in educationand training – and are also often under-represented within local service user or carergroups.

Similarly, within the mental health system,there can be particular stigma attached toparticular diagnoses – so, for example, peoplewith ‘personality disorder’ may have beenmade to feel unwelcome within services, andalso potentially within service user groups.

While the popular image of higher educationand professional training may be one ofopening minds and exploring potential, it cancome as quite a shock for service users andcarers to encounter structures and institutionswhich may be strongly hierarchical, with built-in pecking orders. Within such cultures therecan be resistance to letting go a little of the‘expert’ role.

Similarly, despite their potential access to moreenlightened perspectives, educational settingsmay not always be free of stigmatising ordiscriminatory attitudes. Service users may beperceived by some as ill (all the time),unreliable or even dangerous. This can bereinforced by a medical/biological model ofmental health. Carers may be seen as negativeand critical of professionals, or as causing manyof the problems faced by service users.

Despite this, there may be members ofteaching staff who are profoundlyuncomfortable with such exclusionaryattitudes, and are looking for internal andexternal support in changing the culture toone that is more inclusive and welcoming. Thiscan come about through developing workingrelationships with services users and carers.

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4.3 Representativeness and diversity

4.4 Changing the culture of a course

What is essential is to work towards setting upnetworks and structures that support all sortsof service users and carers to become involved,particularly reaching out to those whose voicesmay tend to be excluded (see Section 4.5). Thismay involve working with (or setting up)specific support groups or networks for thosegroups who may otherwise feel excluded oralienated from the mainstream, and givingthem the confidence that their experience willbe valued by courses and by students.

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Statement of ValuesWe would recommend that teaching staff andcourse managers enter into an open dialoguewith service users, carers and otherstakeholders as to what should be the valuebase of the programme. This can be seen as adevelopment of the statements of coursephilosophy that may be familiar within highereducation – but one which includes explicitstatements of how the expertise of serviceusers and carers is to be valued within theethos of the programme.

It may be important to draw togetheracademic ideas around educational philosophywith aspirations towards partnership withservice users and carers that may be developedin local service delivery organisations, or bylocal user and carer groups. Useful startingpoints could be the NIMHE Statement ofValues and the work undertaken by theNIMHE/Sainsbury Centre Joint WorkforceSupport Unit on “Ten Essential SharedCapabilities” (Hope, 2004). It may be betterthat programmes develop their own Statementof Values, rather than following some externalblueprint, as it is the process as much as thefinal product which develops ownership.

A good values statement will be clear and easyto read, perhaps only one or two paragraphsin length, in order to be easily replicated as aposter, handout or inserted into futuredocuments.

Procedures andConventions Particularly in higher education, there are arange of procedures and conventions whichmay need to be revisited if the perspectivesand expertise of service users and carers arenot to be marginalised or excluded. This mayapply, in particular, to the conduct of:

• validation / revalidation of courses

• accreditation / reviews of courses byprofessional bodies

• examination or assessment Boards

• forums for course management

Viewed from the outside, many of these canseem to operate in ways that are somewhatarcane and overly bureaucratic; perhaps withcomplex forms of point-scoring that do notseem to relate to the real issues, or collusiveprocesses which prevent certain issues beingaired. Just being invited to join as arepresentative in existing meetings andprocesses can feel dispiriting and excluding toservice users and carers, and can be ineffectivein providing proper scrutiny from a service useror carer perspective.

Therefore, within such forums and structures,decision making processes may need to bemade more transparent and open, andappropriate ways need to be devised ofinvolving service users and carers as partners.Such changes may be of benefit to allparticipants and result in more effectivescrutiny and decision making.

4 Initiating and Sustaining Involvement

Involvement inprogramme validation At the University of Central England, serviceusers were involved in validation of thesocial work programme. Some were involvedin preparing the course documentation,whilst others were recruited from serviceuser organisations as members of thevalidation panel, along with representativesfrom the University, both external to andwithin the faculty from which the course tobe validated originates. Panel members playthe role of “critical friend”, reading andconstructively criticising coursedocumentation. Service users were felt tohave had a very valuable role to play in thisprocess – raising concerns about terminologyfor example, resulting in greater conceptualclarity for students. It is intended that carersas well as service users will be represented inany future validation processes. Contact:Robert Dolton [email protected]

Enabling teaching staff toown progress towardsservice user and carerinvolvement – and engage in changingattitudes and practicesPeople generally do not respond well to beingtold that they have got it all wrong, or tohaving a new way of thinking imposed uponthem. Effective change tends to occur whenpeople are enabled to find new ways forwardthat work for them and build on aspects oftheir existing knowledge, experience andexpertise. If new ways of working are owned,they are more likely to be sustained anddeveloped.

A very practical way forward may be toarrange developmental sessions, or even ‘awaydays’, for course teams. It may be helpful toemploy service user or carer consultants asfacilitators for some of these. Options include:

• initial sessions to provide an opportunityfor teaching staff to explore and sharetheir aspirations, while also identifyingparticular anxieties or barriers to progress.

• ‘getting to know each other’ sessions inwhich teaching staff, service users andcarers join together in exercises that helpthem to get out of prior roles andencounter each other as human beings. Forthis to work wellthere needs to be a senseof safety for all participants. A degree offun, as well as more serious dialogue is alsohelpful.

• task based sessions for teaching staff,service users and carers – for exampleworking together to produce a Statementof Values

• ongoing reviews of progress, perhaps usingthe National Continuous QualityImprovement Tool (see Section 5.3), tovalue what has been achieved and identifyboth next steps and longer term goals.

Course teams may find themselves underpressure to develop in response to otherrequirements or opportunities – e.g.developingstructures for interprofessional learning,moving over to problem or enquiry basedapproaches, or developing a new curriculum inline with the changing requirements ofprofessional bodies. Rather than seeing serviceuser and care involvement as an unhelpfuldistraction in the face of such challenges, onecan choose to see it as a key resource inmeeting them.

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What is already going onin the area?Trusts, local authorities and, more recently,NIMHE Regional Development Centres (inEngland) have played an active role inpromoting, co-ordinating, supporting anddeveloping service user and carer involvementin mental health services at all levels.

A capacity buildinginitiativeIn the North West of England an initiative isunderway to share best practice in theinvolvement of service users and carers inmental health training and develop a networkof people interested in an inclusive approachto training and education.

Contact: Janice [email protected]

This is often achieved through establishinglocal service user and carer forums, which maybe supported by paid workers who may havedirect experience as users or carersthemselves.

Forums carry out many functions which varyfrom locality to locality. They may be able to:

• provide access to service users and carersto support the development of the course

• provide a link between the wider body ofservice users and carers and those whobecome involved in training andeducation

• provide ongoing links that encourage newservice users and carers to becomeinvolved with the course

• support service users and carer lededucation and research initiatives.

Alongside such forums, there may be a rangeof local organisations run by, or in partnershipwith, service users and / or carers, such as:

• campaigning and media groups

• self help organisations such as HearingVoices Networks, Manic DepressionFellowship, etc

• voluntary / independent sector serviceproviders, such as local MIND or Rethinkgroups

• groups and networks providing research,training and / or consultancy

Even in areas where there has been a lot ofactivity, service users and carers experienced intraining may become ’the usual suspects’,approached to be involved in everything.

In many localities, service user involvement inmental health services is as yet more fullydeveloped than carer involvement, with moreof an existing infrastructure to support it.However, in some localities, the reverse may betrue.

Whatever capacity may have already beendeveloped in a given area, there is likely to bea large untapped resource of people whowould potentially be interested and have a lotto offer, but who are not connected to anyexisting group or network.

Finding out and makingcontactEducators may get best results by approachingexisting forums and groups on their ownterms, perhaps asking to attend as a visitorand giving a presentation about what theyaim to achieve by involving service-users orcarers. Some knowledge of local politics withinthe networks can be helpful in smoothing theprocess of building up contacts.

It is important to recognise that peopleinvolved in existing organisations and groupsmay not have seen involvement in educationand training as a major priority or interest.Many will have a commitment to improvingservices or changing attitudes, but may nothave thought that they could make a directcontribution to professional education as away of achieving this. Even if members of agroup are not personally interested ineducation, they may know of others whowould be – so existing organisations can be asource of good networking opportunities.

4 Initiating and Sustaining Involvement

4.5 Building capacity for service user and carer involvement

When making initial contact

• invite people to ‘dip their toe in the water’– perhaps to meet for an informaldiscussion before discussing any furthercommitment

• be prepared to meet with people on theirterritory and respect their interests,agendas and aspirations

• be clear about payment for time andexpenses

Reaching out to newpeopleSome courses have tried advertising in the localmedia to attract service users or carers whomay not be linked in to existing groups ororganisations. This has tended to have limitedsuccess as a one-off strategy, but may havemore potential if linked to a series of newsfeatures on mental health issues and serviceuser and carer involvement. That might raiseawareness and interest, and promote a positivesense of what service users and carers havealready achieved.

More successful strategies tend to be based onpersonal contact and word of mouthcommunication. Approaches may be madethrough assertive outreach teams, day services,voluntary organisations, and so on.Practitioners can be invited to raise the ideawith service users or carers they are workingwith, or it may be possible to convene openmeetings at venues that are comfortable forservice users or carers – perhaps resourcecentres or local community facilities.

Many trusts and social services departmentshave mailings which can be used to send outflyers or posters inviting service user and carerinvolvement. Flyers should emphasise thatexpenses will be reimbursed, that people canbe paid for their time in ways that do notaffect their benefits, and that support, trainingand opportunities for skill development will beoffered. A small event, to welcome all thoseinterested and give them the chance to meeteach other may be appropriate.

In reaching out, it may be important to targetgroups of service users or carers whose voicesare under-represented, such as people fromBlack and minority ethnic groups, lesbian andgay people and others. Specific strategies mayneed to be adopted, for example workingclosely with community organisations lesbianand gay switchboards or advice services.

Teaching staff can be hard to get hold of, sopeople will need to know how best to makecontact. We suggest that direct line numbersare given - if possible, with times when thecontact person will actually be there. Anyvoicemail or answering machine should givethe contact person’s name and, if possible, awarm greeting in their own voice. Pleasefollow up calls quickly as people may quicklylose interest or confidence.

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4.6 Funding

It must be recognised that effective service userand carer involvement will have fundingimplications, particularly in the short termwhile capacity is being developed andinfrastructure put in place. This issue is startingto be acknowledged at government level; forexample, the Department of Health is currentlyproviding a limited amount of fundingearmarked to support user and carerinvolvement in the new social work degree inEngland.

In the longer term, there may be potential forlimited savings. Some ‘conventional’ teachingstaff may be freed up for other duties asservice users and carers provide more input. Setagainst this will be the cost of providing asupport and training infrastructure to sustainservice user and carer involvement, and tobring on new people as current contributorsmove on. Overall, there is likely to be a needfor some recurrent increase in funding.

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It is possible that some service users and carerswill already have relevant experience ineducation or training – or in other fields such asadvocacy work which have provided transferableskills. Such people may be able to ‘come up tospeed’ relatively quickly and slot in to teachingteams where these are ready and willing to workalongside service users and carers on a basis ofpartnership and equality.

At Levels 2 and 3 of the Ladder of Involvement(see Section 5.3), such an approach may justabout suffice – although programmes may findthemselves increasingly reliant on a limited poolof contributors, with the potential disadvantagesthat brings.

For programmes that are aspiring to developfurther towards Levels 4 and 5, it is crucial toestablish the necessary infrastructure to:

• develop capacity – so that sufficient numbersof service users and carers can be recruited toenable wider representation of minorityperspectives and become less reliant on thewilling few.

• achieve sustainability – to continually bringon new people to take the places of thosewho, for whatever reason, decide to move on.

For the majority of service users and carers,entering the world of education and training willbe a new departure. The impact of mentaldistress, the social stigma attached to it and, forsome, the responses they have received frommental health services, may have resulted in lowlevels of confidence; and perhaps also unresolvedfeelings of anger and resentment.

To be effective teachers, people need to developthe confidence that they can be experts,particularly on the basis of this very experience.They also need to learn how they may use theirexpertise to contribute to students’ learning in avariety of ways.

4.7 Infrastructure for support, training and supervision

Alongside this, teaching staff need to developtheir awareness of the potential of service usersand carers, and their skills in nurturing andencouraging this. They also have a crucial rolein establishing, and modelling to students, avalue base of respect and partnership. Failure todo this will leave service users and carers feelingvulnerable and under-valued, and students lesslikely to take their contributions seriously.

More specifically, people are likely to need:

• personal support, encouragement andhelp to develop confidence

• skills training – from basic assertiveness tohow to deliver a presentation or lecture

• specific knowledge relevant to theeducational process, including differentapproaches such as problem basedlearning.

• opportunities for de-briefing, feedbackand supervision, especially when they areinvolved in direct delivery or supportingpractice learning. This may be particularlyimportant if there are instances ofhostility or overt conflict betweenstudents and service users or carers, orwhere sessions trigger other strongemotions.

Service Users Involvedin Training andEducation (SUITE)South London and Maudsley NHS Trustemploys job-share Education and TrainingAdvisors to ensure that service userinvolvement is embedded in all trainingdelivered and commissioned by the Trust,and at all levels. This includes ensuring that“professional non-user” trainers embed auser perspective (informed by consultationwith users, user-focused research userwritings, videos and creative work) in theirpart of the training, to consolidate andvalidate the users’ contributions. The work iscarried out under the auspices of SUITE(Service Users Involved in Training andEducation), established in May 2003, whichalso provides a Training the Trainers course.Contact: Steph [email protected]

4 Initiating and Sustaining Involvement

A Strategy forinvolvementThe School of Community Health at NapierUniversity in Edinburgh has a user and carerinvolvement strategy. A development workerhas been appointed to support and trainusers of mental health services and carerswho contribute in partnership to design anddelivery of the curriculum for pre-registrationnurses. The Partnership process recognisesthat service users and carers and serviceproviders are best placed to say whatqualities and skills mental health nursesrequire and should therefore work togetherwith lecturers in the design and delivery ofthe curriculum. Partners are involved in allstages of the planning process, decisions aremade jointly and reviews and changes areundertaken jointly. Service users and carersare involved in nurse education indirectly(materials, written accounts),as recipients(observers, learners in the classroom), directly(trainers, assessors) and strategically(planning). Development of a "partnershipagreement" is being explored and,recognising the challenge of taking accountof a range of different interests andperspectives, external supervision for theworker has been built in.

Contact: Lynne [email protected]

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This may be enabled in a variety of ways,possibly in combination:

• Supporting and facilitating peer supportgroups and networks

• Providing train-the-trainer programmes –possibly leading to some form ofaccreditation

• Mentoring or 'buddying' for new recruitswith more experienced user / carer trainersor members of teaching staff.

• Service users or carers working in pairs tooffer each other mutual support andfeedback.

• Supporting service users and carers inaccessing mainstream educational provisionto gain skills and qualifications relevant totraining and adult education (e.g. City andGuilds adult education qualifications)

• Setting up opportunities for giving andreceiving feedback, involving service usersand carers, teaching staff and students.These would need to be structured so thatall parties feel valued and their viewpointsrespected – and could form part of thecourse (or module) evaluation process.

Remember: A good place to start is to askservice users and carers about their ownsupport strategies – what works for them.

Support / developmentworkersTeaching staff may not necessarily be the bestpeople to do outreach and capacity buildingwork, or to provide support and training toservice users and carers. Much of this may bemore effectively facilitated by designatedsupport / development workers; ideally peoplewith direct experience as a service user orcarer. A useful exploration of the role of theservice user development worker wascommissioned by the Northern Centre forMental Health (Mills, 2003).

Development workers may be directly attachedto Higher Education Institutions or trainingproviders, as at Napier, or they may becommunity based and linked to local serviceproviders, voluntary organisations and serviceuser or carer run organisations.

At a regional level, in England, most NIMHERegional Development Centres havedesignated workers with responsibility fordeveloping service user and carer involvement.They may be able to offer support and ideas -and possibly also useful networks for supportand development workers in educationalsettings.

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4 Initiating and Sustaining Involvement

SUITE runs a “Training the Trainers”initiative, commissioned by South MaudsleyMental Health Trust (SLAM) Training andEducation Department and accredited by theOpen College Network (OCN). The coursecontent, length of session and regularity isdecided by the users/carers themselves andfacilitated by user trainers. The overall aim isto encourage participants to design a coursethat is specific to them and then to run it(with payment) for staff or users. Contact: Steph [email protected]

Anglia Polytechnic University has a longhistory of recruiting, preparing andsupporting people in training. Regularempowerment sessions are held to getpeople involved with follow-up training thetrainers events. For further informationcontact Tim Schafer [email protected]

In Derby, funding has been obtained fromthe Institute of Leadership in Management(ILM) for development of a qualificationentitled “The Award in Health and SocialCare Consultancy”. This is thought to be thefirst formal bespoke qualification for serviceusers wishing to become consultants andadvisers and was run for the first time in2004. Contact Mike O’Sullivanmichael.o’[email protected]

In response to a request from the Shaw Trustto develop a training course in presentationskills for service users, a programme wasdeveloped at the Lincoln site of theUniversity of Nottingham school of nursing(Hanson & Mitchell, 2001). This has now runseveral times, equipping people withpresentation skills and the ability tonegotiate a training brief. For moreinformation contact Brenda [email protected]

Training for Trainers (T4T) is an innovativeresource aimed at equipping more people,including service users and carers, withmental health training skills. It is availablefrom the Mental Health Foundation MentalHealth Trainers Network website:www.mhtn.org.uk and from PavilionPublishing www.pavpub.com

The Distress Awareness Training Agency(DATA) set up the Experts by ExperienceTrainers Forum runs a training the trainerscourse for service users who practice theirskills on the induction programme atManchester mental health and social caretrust. Contact: Rose [email protected]

In the West Midlands the SURESEARCHservice user network, along with variousmembers of staff from the University ofBirmingham, provides training for people tobe involved in education and research. Formore information contact Ann Davis [email protected]

Preparation andsupport fortrainingHere are some initiatives which aim to prepareservice users and carers to become involved.

Ad hoc and temporary arrangements betweenprogrammes and individual service users orcarers may be a necessary first step along theroad to involvement. However, if thisinvolvement is to become credible andsustainable, it needs to be put on a firmer andlonger-term footing. Two models haveemerged for doing this.These are not mutuallyexclusive:

Model 1: directemployment of serviceusers and carersFrom the point of a service user or carer, beingoffered a permanent position as a member ofteaching staff can be potentially attractive,particularly if there can be flexibility aroundworking hours.

Advantages:

• Equal status with other members of theteaching team

• Access to all the resources of the institution(e.g. research infrastructure, libraries and ITservices)

• If more than one person is appointed, theremay be opportunities for mutual support

• Continuity. No need for a programme orservice user group to scrabble around eachyear to find who is available to contribute

• Opportunities for sustained developmentof skills and confidence

Potential drawbacks:

• Harder to sustain the independence ofservice user and carer viewpoints – theremay be a danger that they becomeabsorbed into the culture and attitudesprevailing within the institution

• Some people may need periodic time off inorder to manage their mental distress orcare for others, and it may be hard topredict when that will be. This can be hardto manage within conventionalemployment contracts – but is notimpossible given some goodwill andcreativity. For example, it may be possibleto have flexible part time contracts whichoffer a regular income and specify the totalnumber of days to be worked per annum,but allow days to be ‘banked’ to allow forperiods of time off as required.

• The institutional environment may notoffer the sort of support and supervisionthat people need, and this may contributeto people’s mental health difficulties. (N.B.These issues may impact similarly on othermembers of teaching staff – so action toaddress this may be of benefit to all)

• Service users and carers may still feel thatthey are treated as ‘second grade’ membersof staff

It has been recognised that some service usersand carers recruited to work in mental healthservices, or in mental health education, havefaced particular stresses and difficulties, such aslack of support, isolation, continually having tofight in order to have their viewpoints heard,or simply being deluged with more work thanthey can cope with. The publication ‘Strongerthan Ever – a report on the first nationalconference of survivor workers’ (Snow, 2002)suggests some ways of overcoming barriers inthis area.

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4 Initiating and Sustaining Involvement

4.8 Employment and contracting

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Model 2: contracting withindependent user / careror voluntaryorganisations, or withself-employed serviceusers and carersIn order for investment in the training ofservice users and carers to be worthwhile, bothfrom the point of view of the peopleconcerned and those who may have fundedtheir training, then longer term rollingcontracts offer considerable advantages.Without such a guarantee of continuity,people may be reluctant to make the effort inthe first place, or may drop out as soon asthere is uncertainty as to when the nextteaching opportunity will arise.

Advantages:

• Maintains independence of service userand carer viewpoints

• Flexibility in allowing individuals tocontribute on a basis that suits them –from offering a few days each year tohaving much more intensive involvement

• Opportunities for contributors to arrangecover for each other if they feel unwell orneed to care at short notice – especially ifthey are part of training groups ornetworks

Potential drawbacks:

• Less reliable source of income – a crucialfactor for some service users and carerswho may be considering whether or not itis financially safe for them to come offbenefits

• Service users and carers may still feel like‘outsiders’ who lack equality or status

• Institutions may be less ready to offeraccess to learning resources

• Service users and carers who are skilled atcontributing to teaching and learning maynot always feel competent in relation toadministration or accounting – whether interms of managing self-employment or co-running a training group

Rather than expecting individuals or collectivesto manage their own financial administration,it may be helpful to see if this function can betaken on by an existing voluntary organisationwith the relevant accounting, contracting andpayments infrastructure, and willing to hostsuch activity as part of their wider charitablepurpose.

4 Initiating and Sustaining Involvement

4.9 Payment, expenses and other practicalities

Whatever the level of involvement, is essentialthat service users and carers are paidappropriately for their participation. Paymentshould be made for all types of involvement -not just direct delivery, but also attendance atconsultation and planning meetings. Indetermining what would be a fair rate of pay,the following guidelines may be helpful:

• If the payments are for attendance atmeetings or consultation events,presentations, consultancy or trainingevents, it would be appropriate to pay thesame rate as would be offered by Trustsand local authorities for similar work.Indicative scales for such payments havebeen produced by NIMHE West Midlands(2003).

• Where service users and carers arecontributing directly to teaching andlearning – in developing materials, directdelivery or assessing students’ work – theyshould be paid on the same basis as otherexternal contributors. Higher EducationInstitutions tend to have a standard VisitingLecturer hourly rate.

In order to encourage people to come forwardfor “training the trainers” and otherpreparatory initiatives, it may be helpful tooffer a small payment for their time as well ascovering their expenses.

For those who are reliant on benefits, it maybe helpful if certain practical strategies can beadopted. For example:

• Instead of paying out one lump sum for apiece of work (which may exceed a person’spermitted earnings threshold for a week),spread the payments over a longer period –e.g. paying for preparation time on aweekly basis, rather than including this aspart of an invoice on completion of thework

• Some people prefer that payments do notgo to them individually, but to a localgroup or a voluntary organisation of theirchoice.

Such strategies may require carefulpreparatory work with finance departments.Any institution which seeks to involve peoplewho are vulnerable and who rely on benefitsas their sole income has a duty of care – so it isimportant to liaise with local tax and benefitoffices to ensure that arrangements do not cutacross regulations, and ensure that no serviceusers or carers run the risk of losing theirbenefit entitlements (and/or prosecution forfraud) through agreeing to contribute to aprogramme. It may be helpful to work closelywith colleagues in other disciplines or in otherinstitutions locally in order to share practiceand arrive at common approaches.

For a fuller discussion of these issues andpractical advice, see Scott (2003) and Levin(2004). Listed below are policies that havebeen developed by some organisations – butwe cannot confirm that these comply with allcurrent and future regulations. In developinglocal policies, IT IS IMPERATIVE THAT THEY ARECHECKED OUT WITH LOCAL BENEFIT OFFICES.

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4 Initiating and Sustaining Involvement

Making payments

There may be practical problems aroundmaking payments to service users and carersfor both the institution and the individualconcerned. For all contributors, it is importantto make claiming payments as straightforwardas possible, and this may entail working closelywith finance departments to develop newprocedures:

• Devise a simple form that people can fill in,rather than asking for an invoice

• Do not automatically deduct income taxand require people to claim it back if theyare self-employed or below the minimumearnings threshold - instead offer theoption of a disclaimer which thecontributor can sign to take responsibilityfor their own tax and National Insurance.(N.B. This may not be possible for thosewho are making regular contributionsthroughout a course. Institutions mayrequire such people to have a contract ofemployment and to receive paymentthrough the normal payroll system).

For those who have chosen to become self-employed or to work as part of a traininggroup, it can be vital to ensure that claims forpayment are turned around quickly – failure todo this may result in people having to give upand go back on benefit.

Users and carers often rely on benefits. Manyreport the benefit system to be inflexible andunpredictable. To avoid uncertainty andpotential loss of benefit, they may prefer thatweekly earnings are set below the figure thattheir particular benefits allow them to earn(this may vary from £20 per week to as muchas £72 per week).

At a National level, the inflexible andpotentially punitive response of the benefitssystem towards those who are not capable orready to undertake full-time work has beenrecognised as a major issue that preventspeople with mental health difficultiesundertaking work on a more limited andflexible basis. It is most unfortunate that thishas not been adequately addressed in theGovernment’s report on Mental Health andSocial Exclusion (Office of the Deputy PrimeMinister, 2004). This is likely to remain thegreatest single impediment to building thelevel of capacity among service users and carersnecessary to deliver the Government’s ownvision for professional education and trainingin mental health.

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Paying people to beinvolvedThree examples of policies relating topayment for involvement come from:

Nottinghamshire Healthcare NHS Trust [email protected]

NIMHE West Midlands Contact:[email protected]

NIMHE Eastern Contact:[email protected]

Hull and East Riding Community Health NHSTrust has produced a code of practice for paidservice user and carer involvement in mentalhealth services.

Contact: Bill Davidson [email protected] orDiane Heywood [email protected]

Most of the initiatives referred to in this guidehave experience of developing systems forpayment of users and carers.

The Faculty of Health and Social Care at theUniversity of the West of England has forsome time had a procedure for paying usersand carers who contribute. Programme staffwork closely with a local user/voluntaryorganisation to recruit user-trainers andpayment is made through that agency. Forfurther information contact Stewart [email protected]

The Richmond Fellowship employs a range ofservice user trainers on its Diploma inCommunity Mental Health course atMiddlesex University, with well establishedprocedures for payment. For moreinformation contact Peter [email protected]

4 Initiating and Sustaining Involvement

ExpensesMany service users and carers are surviving onbenefits or low incomes. Whatever practice isestablished in relation to making payments, onevital practical step is to develop the facility topay people’s expenses in cash on the day thatthe expense is incurred. Without this, peoplemay find that they cannot turn up at a meetingor a teaching session because they simply cannotafford the bus fare on the day.

Again, this may require negotiating with financedepartments new rules and procedures for thedisbursement of petty cash.

TravellingSome service users and carers may haveparticular difficulties in relation to travelling.They may need someone to travel with them orthey may be unable to use public transport andneed a taxi – so the flexibility to pay additionalexpenses may be required. For those who drive,thought may need to be given to the availabilityof free parking spaces close to the teaching ormeeting room.

Recruitment, selectionand contractsIn the first instance, it is likely that recruitmentwill be via personal contacts, word of mouth andany databases of service user and carer trainers.held locally

However, particularly if service users and carersare being recruited to substantive teaching postsor employed on regular contracts, it becomesimportant to institute fair and open processesfor selecting people for particular roles, based ona clear specification of what is required, withdue attention paid to ensuring equality ofopportunity.

In order to give opportunities to new peopleentering the field as well as those who are moreestablished, it is helpful to specify a range ofroles which service users and carers canundertake, some more demanding of experienceand prior training than others.

Where service user or carer input is viaindependent training groups, this needs to beon the basis of contracts, which clearly specifyexpectations and responsibilities of both parties.Ideally, contracts should be for more than a year,with a built in process for evaluation andrenewal – and a facility to terminate thecontract if either party is not able to deliverwhat was agreed at the outset.

The following checklist (based on one devised byPremila Trivedi, an experienced user trainer) maybe useful to give out to all service users andcarers as part of their preparation forinvolvement in a programme. It can be amendedto take account of local differences and whetherit is being distributed by the institution itself orby a service user or carer group.

9. Think carefully and discuss with othermembers of the course team how best toget these messages across – e.g. researchevidence, people’s stories, interactiveexercises and role plays, sharing your ownexperience.

10. Be clear about which personal experiencesyou are prepared to share with students inorder to facilitate their learning (and whichnot!) - and try to stick with that. Don’t bepressurised into discussing things whichdon’t feel safe for you.

11. Spend time planning and preparing so youare clear and confident about what youwant to contribute

12. Anger is OK and necessary sometimes, buttry and stay focused - remember yourinvolvement is about encouraging people(students and teaching staff) to changetheir practice – not about having a go atthem!

13. Don’t beat yourself up if you have an off-day or if you feel you did not perform verywell.

14. Don’t beat yourself up if people becomedefensive, don’t listen, remain inflexible orare just plain ignorant! You can’t changethe world all at once. Be willing to reflecton how you might (or might not) wish todo things differently next time.

If you are involved in student selection orassessment:

15. Think about what values, attitudes,personal qualities, knowledge or skills youwould expect students to be able todemonstrate. Discuss these with othermembers of the course team (don’t letyourself be fobbed off if you thinksomething is important).

16. Think carefully and discuss with othermembers of the course team how best toassess these.

Everyone:

Are you clear what you are being invited todo, how much you will be paid for it, and howyour expenses will be reimbursed? If you relyon welfare benefits, have you had advice as tohow any earnings may affect these? Do youneed help with arranging care or any otherpracticalities?

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4.10 Checklist for service users and carers preparing to become involved

Looking after yourselfand making a differenceA checklist for service users and carerspreparing to become involved in mental healtheducation and training

1. Recognise your own expertise, and all theskills and talents you as an individual canbring. Believe in yourself and what you aretrying to do.

2. Allow yourself time to build up yourconfidence and skills – start small and growgradually.

3. If possible, work alongside another serviceuser or carer or have someone else youtrust there to support you.

4. Have you got support systems in place? Areyou able to get support from friends andallies, or from service user or carer supportgroups and networks? What support isbeing offered to you by the programme,and is this enough?

5. Don’t let the professionals over-use you –it’s your right to say no.

6. Only contribute to education and trainingif you get something out of it.

7. Be aware of issues of (in)equality anddiversity and try to make sure that theexperience of members of differentminority groups is not overlooked.

If you are involved in planning and/or deliveryof teaching or in programme management orevaluation:

8. Think what it is that you want students tolearn. Decide what key messages orlearning points you are trying to get across(it’s very easy to get side-tracked!)

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In order to reflect on the level of service userand carer involvement a particular programmehas achieved, and what could be the nextstage in its development, it may be helpful toevaluate progress in a systematic manner.Many courses will be conducting evaluationsusing the National Continuous QualityImprovement Tool for Mental HealthEducation (NCMH, 2003) – and this Guide isintended to be used alongside it in relation toservice user and carer involvement. The Ladderof Involvement and the scoring systemoutlined here may also be used separately ifthis is more appropriate.

While this Quality Improvement Tool is likelyto be used mainly within higher education,other providers of training and education mayalso find it helpful. It is designed to promote aconstructive process of dialogue anddiscussion, both within course teams and morewidely with other stakeholders involved with aprogramme, to see how relevant a course maybe to meeting the challenges of preparingstudents to work in a modern mental healthservice. It encourages honest self-evaluation ofprogress in relation to local circumstances.

This Guide may be used in conjunction withthe Quality Improvement Tool in helping toframe the agenda for internal course reviewsand planning forums, and for widerstakeholder events. Within such events it mustbe recognised that courses may not always bein a position to advance in isolation. Theremay be issues of developing capacity amongservice users and carers that can only betackled through joint strategies involvingeducation providers, service providers, userand carer organisations, WorkforceDevelopment Confederations / StrategicHealth Authorities and NIMHE RegionalDevelopment Centres.

5EvaluatingProgress

5 Evaluating Progress

5.1 The experience of service users and carers

Based on Premila Trivedi’s ‘Involvometer’, weoffer a simple questionnaire to check out howservice users and carers may have found theirexperience of involvement.

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5 Evaluating Progress

Service user and carer experience of beinginvolved in Mental Health Education andTraining

InstructionsWhich area(s) of work you been involved in (please tick)

Direct delivery of learning and teaching

Course / module planning

Programme management

Recruitment and selection of students

Practice learning

Student assessment

Course evaluation

Other

Now, consider each of the statements below and score each on a scale of 0-5, where:

0 = not at all 1=a little bit 2=sort of3 =acceptable 4=good 5= definitely

Before

1. I received full information before starting the work. …….

2. The information was easy to understand and all jargon was explained. …….

3. It was clear why they wanted me to be involved. .……

4. I had a useful meeting with the co-ordinator (or other member of the teaching team) before starting the work. …….

5. All practical details, e.g. payment, access needs, support etc were sorted out before the work started. …….

During

1. The work was interesting. …….

2. It felt OK to ask when something was not clear or when I was getting lost. …….

3. The room/setting felt comfortable and not intimidating. ........

4. The other teaching staff were polite and friendly towards me. …….

5. The other teaching staff treated me with respect and listened to my views. …….

6. It was possible to disagree with the other teaching staff and still to feel OK. …….

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5 Evaluating Progress

7. The students were polite and friendly towards me. …….

8. The students treated me with respect and listened to my views. …….

9. It was possible to disagree with the students and still to feel OK. …….

10. I felt my input was being taken seriously and I was having an effect. …….

11. I knew whom to go to for support if there were any difficulties. …….

After

1. I had the chance to discuss the work and how I felt it had gone when it was over. …….

2. I felt my contribution made a difference. …….

3. I received balanced and constructive feedback in relation to what I had contributed. …….

4. If I received payment, I received it simply and quickly. …….

NOW add up all your scores and see how positive your particular experience of Service User and Carer Involvement was!

TOTAL SCORE = …….

0-25 = unacceptable – urgent action required

26-50 = adequate – but need to look at making the experience better

51-75 = good

76-100 = excellent!

Please include anything else you would like to tell us, or anything that you would like us to pass onto the programme concerning service user and carer involvement.

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5.2 The experience of students

Along similar lines to the ‘Involvometer’, asimple questionnaire for students wouldprovide useful evaluative feedback.

Student Experience of Service User andCarer involvement in Mental HealthEducation and Training

InstructionsIn which aspects of your learning have service users and carers beeninvolved (please tick)

Direct delivery of learning and teaching

Recruitment and selection of students

Practice learning

Assessment of student work

Other

Now, consider each of the statements below and score each on a scale of 0-5, where:

0 = not at all 1 =a little bit 2 = sort of3 = acceptable 4 = good 5 = definitely

Before

1. I was informed in advance that service users and carers would be involved in delivering or participating in the course. …….

2. It was explained to me why service users and carers would be involved. .……

3. User and carer involvement fits with the overall philosophy and values of the course. …….

5. All practical details, e.g. payment, access needs, support etc were sorted out before the work started. …….

During

1. I felt that service users and carers were treated with respect and were listened to. …….

2. I felt that service users and carers treated me with respect and were willing to listen to my point of view. …….

3. I felt their input was being taken seriously and was having an effect. …….

4. I enjoyed my contact with service users and carers on the course. …….

After

1. Through their involvement in the course, I have come to see service users and carers as people who have a lot of valid knowledge and ideas. …….

2. Having service users and carers involved has given me new insights, knowledge and understanding. …….

3. Having service users and carers involved has changed the way I will work in my practice. …….

NOW add up all your scores and see how positive your particular experience of Service User and Carer Involvement was!

TOTAL SCORE = .…..

0-25 = unacceptable – urgent action required

26-50 = adequate – but need to look at making the experience better

51-75 = good

76-100 = excellent!

5 Evaluating Progress

Please include anything else you would like to tell us, or anything that you would like us to pass onto the programme concerning service user and carer involvement.

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5.3 The Ladder of Involvement

In some instances, especially when setting up anew programme, it may be possible to embedfull-scale service user and carer involvement inall areas from the start, together with theinfrastructure necessary to support this. Moreusually, especially when developinginvolvement within existing programmes, itmay be more realistic to start with smaller scaleinitiatives and work progressively towardsgreater service user and carer involvement.

Whichever approach is taken, it may be helpfulto be able to rate progress in relation to theLadder of Involvement (see over). Based on aframework adapted from Goss and Miller(1995), this underpins the evaluation processesset out in the National Continuous QualityImprovement Tool for Mental HealthEducation.

In Sections 2 and 3 of the Quality ImprovementTool, service users and carers who are involvedwith the course are each invited to give thecourse a score for, respectively, service user andcarer involvement. It is hoped that the scoringwill arise out of reflection and dialogueinvolving members of the teaching team andcourse management - but it is ultimately forservice users and carers to decide on theappropriate score.

In broad terms, moving one step up the laddermerits an additional score of 5, up to amaximum score of 20 corresponding to fullpartnership. This provides a clear and simplebasis for rating the stage that a course mayhave reached, and hence identifying what maybe the next stage of its development.

Please note: The version of the Laddershown overleaf has been

developed from thatincluded in the first edition

of the Quality ImprovementTool. Following a piloting

phase, the Tool is currentlyin the process of revision.

For further details [email protected]

Tel 01623 819370.

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LADDER OF INVOLVEMENTLEVEL 1: NO INVOLVEMENTThe curriculum is planned, delivered and managed with no consultation or involvement of serviceusers or carers.

LEVEL 2: LIMITED INVOLVEMENTOutreach and liaison with local service user and carer groups. Service users / carers invited to ‘telltheir story’ in a designated slot, and/or be consulted (‘when invited’) in relation to course planningor management, student selection, student assessment or programme evaluation. Payment offeredfor their time. No opportunity to participate in shaping the course as a whole.

LEVEL 3: GROWING INVOLVEMENTService users / carers contributing regularly to at least two of the following in relation to a courseor module: planning, delivery, student selection, assessment, management or evaluation. Paymentfor teaching activities at normal visiting lecturer rates. However, key decisions on matters such ascurriculum content, learning outcomes or student selection may be made in forums in which serviceusers / carers are not represented. Some support available to contributors before and after sessions,but no consistent programme of training and supervision offered. No discrimination against serviceusers and carers accessing programmes as students.

LEVEL 4: COLLABORATIONService users / carers are involved as full team members in at least three of the following in relationto a course or module: planning, delivery, student selection, assessment, management orevaluation. This is underpinned by a statement of values and aspirations. Payment for teachingactivities at normal visiting lecturer rates. Service users / carers contributing to key decisions onmatters such as curriculum content, style of delivery, learning outcomes, assessment criteria andmethods, student selection and evaluation criteria. Facility for service users / carers who arecontributing to the programme to meet up together, and regular provision of training, supervisionand support. Positive steps to encourage service users and carers to access programmes as students.

LEVEL 5: PARTNERSHIPService users, carers and teaching staff work together systematically and strategically across allareas – and this is underpinned by an explicit statement of partnership values. All key decisionsmade jointly. Service users and carers involved in the assessment of practice learning. Infrastructurefunded and in place to provide induction, support and training to service users and carers. Serviceusers and carers employed as lecturers on secure contracts, or long term contracts establishedbetween programmes and independent service user or carer training groups. Positive steps made toencourage service users and carers to join in as participants in learning sessions even if they are not(yet) in a position to achieve qualifications.

5 Evaluating Progress

As is explored in previous Sections of thisGuide, there are a number of distinct aspectsto developing service user and carerinvolvement :

1. Broadening the scope of participation intomore areas of the educational process,from direct delivery through to programmemanagement, student assessment, and soon (see Section 3)

2. Inclusiveness of the course culture –changing the terms of involvement so thatin any area of activity, service users andcarers are able to become increasinglyequal partners, participating in setting thelearning agenda and influencing keydecisions about direction and outcomes(see Sections 4.1-4.4)

3. Developing an infrastructure to buildcapacity and provide support and trainingfor service users and carers who arecontributing to programmes (see Sections4.5 and 4.7)

4. Developing an infrastructure for employingor contracting with service users and carers(see Sections 4.8-4.9)

In practice, some courses may find that they donot fit neatly with the descriptors for any onelevel on the Ladder of Involvement as they aremaking progress faster in some areas than inothers. For instance, in terms of the scope ofinvolvement, a course may be heading towardspartnership in relation to course design anddelivery, but no progress have been achieved inrelation to involvement in assessment. Anothercourse may be exemplary in terms of putting inplace the necessary infrastructure for makingpayments, contracting and providing supportand training to service users and carers, butmay be struggling when it comes to changingthe culture among teaching staff so that thereis little effective collaboration within thedelivery of teaching and learning.

Therefore, in order for there to be a morecomprehensive evaluation of progress across allareas, and for the final score out of 20 toreflect fairly what a course has achieved, somecourses may choose to adopt a more detailedscoring system that takes these four areas intoaccount. A framework for doing this is set outon the next page – and this may provide auseful set of prompt questions for service usersand carers in helping them to work out howthey should rate the course.

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5 Evaluating Progress

5.4 Taking all aspects of involvement into account: a more detailed scoring system

1 SCOPE OF INVOLVEMENT OF SERVICE USERS AND CARERS

� Programme management� Recruitment and selection of students� Course/module planning � Direct delivery of learning and teaching� Practice learning� Student assessment� Course Evaluation� Service users joining courses as participants

Score of 1 for meaningful involvement in relation to each of theseSCORE: …./8

2 INCLUSIVENESS OF THE COURSE CULTURE

Select which statement best describes the current level of development:

Service users / carers consulted but decisions made elsewhere Score 2

Participation in some decision making forums Score 4

Real partnership based on written statement of values Score 6

SCORE: …./6

3 CAPACITY BUILDING, SUPPORT AND TRAINING

Select which statement best describes the current level of development:

Outreach and liaison with local service user and carer groups. Score 1

As above with some regular training, supervision and support offered to contributors. Score 2

Ongoing programme of induction, support and training, probably via designated support / development worker Score 3

SCORE: …./3

4 INFRASTRUCTURE FOR EMPLOYMENT OR CONTRACTING

Select which statement best describes the current level of development:

Payment at least at recommended rates for meetings and consultation events. Expenses paid in cash on the day. Score 1

Payment for teaching and assessment related activities at visiting lecturer rates. Short term and temporary contracts only Score 2

Either users / carers employed on permanent basis or longer term contracts with independent training groups or self-employed trainers. Score 3

SCORE: …./3

TOTAL SCORE: …./2056

5 Evaluating Progress

A More Detailed Scoring System

57

As will be seen from the foregoing discussion,achieving effective service user and carerinvolvement involves a significant commitmentof time, along with relationship building,strategic planning and problem solving skills;and all of this needs to be underpinned byappropriate funding and an infrastructure forsupport. The potential benefits of providingstudents with opportunities to learn from thepractical knowledge and insight of serviceusers are, however, immeasurable – ensuringthat, as future members of the mental healthworkforce, they are equipped with thenecessary values, attitudes and skills and amind-set of working in partnership.

Beyond this, working in this way offers thepotential for more personal benefits, both forteaching staff and for service user and carercontributors. A sense of excitement and astimulation of ideas can result from processesof dialogue and sharing. This can help teachingstaff to keep in touch with current practiceissues “on the ground”, and encourage awillingness to rethink received wisdom. Forservice users and carers, the experience ofbeing listened to and taken seriously, and ofmaking a contribution that is valued, can boostself-esteem and help towards recovery.

Although there is already much good practicein this area, initiatives will remain in relativeisolation until user and carer involvement canbe embedded into the routine processes ofcommissioning, contracting and managementof mental health education and training. It isto be hoped that the National ContinuousQuality Improvement Tool, together with thisGuide, may contribute towards bringing thisabout.

6Conclusions andRecommendatioIns

6 Conclusions and Recommendations

58

Recommendations1. Programmes should start by devising a

clear written statement of partnershipvalues, as an element of their coursephilosophy, and indicate how these will beapplied and upheld. These should besigned up to by all stakeholders andcontributors.

2. In dialogue with service user and carers,programmes need to formulate a writtenstrategy for developing service user andcarer involvement. This may usefully beshared with commissioners and otherstakeholders. Ideally, this should contain anexplicit aspiration to work towardsdeveloping involvement in all aspects ofthe programme, including studentrecruitment, selection and assessment, andcourse planning, management delivery andevaluation. A designated person should beidentified with responsibility for taking thisstrategy forward. Progress can beevaluated using the National ContinuousQuality Improvement Tool for MentalHealth Education.

3. Commissioners and/or programmes shouldidentify ring-fenced monies for thedevelopment of service user and carerinvolvement – either by making the casefor additional funding or through top-slicing existing budgetary allocations. Thesemay then be used to fund thedevelopment of an infrastructure tosupport service user and carer involvement– perhaps including the establishment ofsupport / development worker posts.

4. Each programme should select a model forsupporting user involvement that isappropriate to its needs. This may involvecreating staff posts for those with serviceuser and carer experience, or contractingwith independent training groups orconsultants. Whichever model is chosen,consideration will need to be given tostructures to induct, train and provideongoing support to those service users andcarers who become involved in education,and to accrediting such training. Thoughtwill also need to be given to how existingstaff can best learn to work effectively inpartnership with service users.

5. Priority should be given to developingcapacity among service users and carers –encouraging more people to becomeinvolved - with a particular focus onensuring that minority viewpoints are fullyrepresented, such as those of women,members of Black and minority ethniccommunities, and lesbian and gay people.

6. NIMHE Regional Development Centresand/or Workforce DevelopmentConfederations / Strategic HealthAuthorities may wish to consider providing(web-based) directories of service user andcarer groups and networks; and possiblyalso lists of service users and carers withexperience of contributing to educationand training. This would facilitatenetworking between users and carersinvolved in training and, together withongoing opportunities to share examplesand experience, could save muchduplicated effort by programmes. Similararrangements could be considered in otherparts of the UK.

7. In line with social inclusion strategies(Office of the Deputy Prime Minister, 2004),further progress needs to be made inadapting welfare benefit regulations tomake it possible for people with ongoingmental health difficulties to undertakework on a limited and flexible basiswithout jeopardising their entitlement tobenefits. If benefits were reduced simply inproportion to hours worked (if any) eachweek, rather than a person’s entireentitlement to benefits being removed, afar larger number of people would be ableto make meaningful contributions tomental health education and training.

6 Conclusions and Recommendations

59

Jerry Tew is a Senior Lecturer in the School ofSocial Work at the University of Central Englandwhere he has collaborated in setting up jointmental health teaching for social work andnursing students which has substantial inputform service users and carers. He is the subjectadvisor for social work on the steering group ofthe Mental Health in Higher Education Project(mhhe) and is on the Executive of the SocialPerspectives Network for Modern Mental Healthwhich is linked to the National Institute forMental Health in England (NIMHE) and theSocial Care Institute for Excellence (SCIE). He is amember of Moving On, a training groupcomprising people who have experience of usingor working in mental health services, and is anassociate of Suresearch.

Colin Gell has been active in service userinvolvement since 1986. He is a founder memberand worker with the Nottingham AdvocacyGroup, one of the first user-led organisations inBritain. He has worked with a number oforganisations developing service userinvolvement, including the Centre for MentalHealth Services Development, Sainsbury Centre,Trent Region Health Authority, University ofBirmingham, Mental Health Task Force, Instituteof Applied Health and Social Policy at KingsCollege London and the Direct Payments inMental Health national pilot. He has recentlybeen involved in the consultation andproduction of guidelines for service userinvolvement in the training of the GraduatePrimary Care Mental Health workers, and iscurrently working with NIMHE East Midlandsand the Trent Workforce DevelopmentConfederation. He is the Co-ordinator forSuresearch network, a Midlands based networkof service users involved in research andeducation.

Simon Foster works for Carers in Partnership, acarer-led initiative supported by NIMHE WestMidlands and Rethink. Carers in Partnershippromotes the carers' voice in the way mentalhealth services are planned, set up and run inthe West Midlands region.

Appendix A:the Authors

60

Appendix B:ReferenceGroup

Reference group The following people provided comment onthe first draft of the guide:

John Allcock

Marion Clark

Anne Cooke

Nisha Dogra

Grainne Fadden

Ann Fitzgerald

Debbie Green

Sharon Greensill

Stewart Hendry

Phil Lister

Joel McCann

Mick McKeown

Damian Mitchell

Penny Morris

Anne O’Donnell

Jane Roe

Wendy Roodhouse

Brenda Rush

Judy Scott

Patience Seebohm

Rose Snow

Premila Trivedi

Susan Walsh

Helen Wenman

Kim Woodbridge

Peter Wright

Please note that a more comprehensive reading listof articles and publications relating to user andcarer involvement in mental health is available fromthe Mental Health in Higher Education website:www.mhhe.ltsn.ac.uk

Barnes, D., Carpenter, J. and Bailey, D. (2000)Partnerships with service users in interprofessionaleducation for community mental health: a casestudy. Journal of Interprofessional Care 14:2 pp.189-200.

Basset, T. (1999) Involving service users in training.Care 7:2.

Bassett, T., Cooke, A. & Read, J. (2003) Psychosisrevisited: a workshop for mental health workers,Brighton: Pavilion Publishing

Beresford, P. (1994) Changing the culture: involvingservice users in social work education. London:CCETSW.

Campbell, P. and Lindow, V. (1997) Changingpractice: mental health nursing and userempowerment. RCN Learning Materials on MentalHealth. London: Royal College of Nursing.

Carers in Partnership (2004) mhhe Focus Group forCarers 8:12:03: Report of discussions. Redditch:NIMHE West Midlands Regional DevelopmentCentre

Carpenter, J and Sbaraini, S. (1997) Choice,information and dignity: involving users and carersin care management in mental health. Bristol:Policy Press.

Coupland, K, Davis, E. and Gregory, K. (2001)Learning from life. Mental Health Care 4:5.

Crepaz-Keay, D., Binns, C. and Wilson, E. (1997)Dancing with angels: involving survivors in mentalhealth training. London: CCETSW.

Department of Health (1999) National ServiceFramework for Mental Health. London: Departmentof Health.

ENB (1996) Learning from each other. London: ENB.

Ferguson, K, Owen, S and Baguley, I (2003) Theclinical activity of mental health lecturers in HigherEducation Institutions. Report prepared for the NHSMental Health Care Group Workforce Team.

Forrest, S. & Masters, H. (2004) Evaluating theimpact of training in psychosocial interventions: astakeholder approach to evaluation – part 1, Journalof Psychiatric and Mental Health Nursing, 11, 194-201

Forrest, S., Risk, I., Masters, S. and Brown, N. (2000)Mental health service user involvement in nurseeducation: exploring the issues. Journal ofPsychiatric and Mental Health Nursing 7 pp.51-57.

Gell, C (2003) Involving service users in the trainingof graduate primary care mental health workers.Nottingham: Trent Workforce DevelopmentConfederation.

Goss, S. and C. Miller (1995) From Margin tomainstream: Developing user and carer centredcommunity care. York, Joseph Rowntree Foundation.

GSCC/SCIE (2004) Living and Learning Together,London: SCIE

Hanson, B. & Mitchell, D. (2001) Involving mentalhealth service users in the classroom: a course ofpreparation. Nurse Education in Practice, 1, 120-126

Hastings, M. and Crepaz-Keay, D. (1995) Thesurvivors’ guide to training Approved SocialWorkers. London: CCETSW.

Hope, R. (2004) The ten essential sharedcapabilities: a framework for the whole of themental health workforce. London: Department ofHealth

Levin, E. (2004) Involving service users and carers insocial work education. London: Social Care Institutefor Excellence.

McAndrew, S. and Samociuk, G. (2003) Reflectingtogether: developing a new strategy for continuoususer involvement in mental nurse education.Journal of Psychiatric and Mental Health Nursing 10:616-621

McDonnell, F. (2002) Report on Project to involveservice users in assessment of candidates for theCertificate in Community Mental Health Care.London: Jewish Care / CCETSW

Manthorpe, J. (2000) Developing carers’contributions to social work training. Social WorkEducation 19:1

Masters, H., Forrest, S., Harley, A., Hunter, M.,Brown, and Risk, I. (2002) Involving service usersand carers in curriculum development: movingbeyond ‘classroom’ involvement. Journal ofPsychiatric and Mental Health Nursing 9 pp.309-316.

mhhe (2003) Workshop report: Paying more than lipservice. User involvement in learning and teachingabout mental health in higher education.www.mhhe.ltsn.ac.uk/news/derby.asp

61

PublicationsandReferences

62

Mills, B. (2003) The role of the service userdevelopment worker in the North East, Yorkshireand Humberside, Durham: Northern Centre forMental Health.

Molyneux, J. (2001) Report on service users’ andcarer’s involvement in the ASW programme.Newcastle: University of Northumbria.

Molyneux, J. and Irvine, J. (2004 forthcoming)Service user and carer involvement in social worktraining: a long and winding road? Social WorkEducation.

Morgan, S and Sanggaran, R. (1997) Client-centredapproach to nurse education mental healthpracticum: an enquiry. Journal of Psychiatric andMental Health Nursing 4 pp.423-434.

NIMHE (2004) The Ten Essential Capabilities forMental Health Practice: Shared Capabilities for allMental Health Workers, London: National Institutefor Mental Health (England)

NIMHE (2003) Cases for Change: User involvement.Leeds: NIMHE

NIMHE West Midlands (2003) Guidance Paper –Payments of service users and carers. Redditch:NIMHE West Midlands Regional DevelopmentCentre.

NCMH (2003) National continuous qualityimprovement tool for mental health education.York: Northern Centre for Mental Health.

Office of the Deputy Prime Minister (2004) Mentalhealth and social exclusion: Social Exclusion Unitreport. London: Office of the Deputy PrimeMinister.

Pilgrim, D. and Rogers, A. (1999) A sociology ofmental health and illness (2nd ed) Buckingham:Open University Press.

Read, J. (2001) Involving to empower MentalHealth Today December 2001.

Reynolds, J and Read, J. (1999) Opening minds: userinvolvement in the production of learning materialson mental health and distress. Social WorkEducation 18:4 pp.417-432.

Rose, D. (2001) Users’ voices: the perspectives ofmental health service users on community andhospital care. London: Sainsbury Centre.

Sainsbury Centre (2000) The capable practitioner.London: Sainsbury Centre.

Sayce, L. (2000) From psychiatric patient to citizen:overcoming discrimination and social exclusion.Basingstoke: Macmillan.

Scott, J. (2003) A fair day’s pay: a guide to benefits,service user involvement and payments. London:Mental Health Foundation.

Secker, J., Grove, B. and Seebohm, P. (2001)Challenging barriers to employment, training andeducation for mental health service users: theservice users’ perspective. Journal of Mental Health10:4 pp.395-404.

Snow, R. (2002) Stronger than ever. Manchester:Asylum

Thomas, P. and Bracken, P. (1999) Putting patientsfirst. OpenMind 96 pp.14-15.

Tew, J. (ed) (in press) Social Perspectives in MentalHealth: Developing social models to understand andwork with mental distress. London: Jessica Kingsley

Tew, J, Townend, M and Hendry, S. with Ryan, D.,Glynn, T and Clark, M. (2003) On the Road toPartnership? User Involvement in Education andTraining in the West Midlands. Redditch: NIMHEWest Midlands Regional Development Centre.

Took, M (1997) Voices of experience: promoting theinvolvement of mental health service users andcares in interprofessional training. London:CCETSW.

Turner, L., Callaghan, P., Eales, S. & Park, A. (2004)Evaluating the introduction of a pilot clientattachment scheme in mental health nursingeducation, Psychiatric and Mental Health Nursing,11, 414 -421

Walters, K., Buszewicz, M., Russell, J. and Humphrey,C. (2003) Teaching as therapy: cross sectional andqualitative evaluation of patients’ experiences ofundergraduate psychiatry teaching in thecommunity, British Medical Journal, vol. 326, p. 740.

Wood, J and Wilson-Barnett, J. (1999) The influenceof user involvement on the work of mental healthnursing students. NT Research 4 p.271.

Wray, M. (2004) Briefing: supporting students withmental health difficulties – useful resources,Chelmsford: National Disability Team

Publications and References

A partnership between Mental Health in Higher Education (mhhe), NIMHE WestMidlands and Trent Workforce Development Confederation.

Mental Health in Higher Education aims to increase networking and the sharing ofapproaches between all involved in learning and teaching about mental health across

the disciplines and professions in UK Higher Education. A project of the HigherEducation Academy, with funding from the Department of Health (section 64), mhhe is

based in the Centre for Social Work at the University of Nottingham.

For further copies of this guide, contact,Mental Health in Higher Education

Centre for Social WorkUniversity of Nottingham

University ParkNottingham NG72RD

or email mhhe using the website feedback form www.mhhe.ltsn.ac.uk

Medical Illustration Service, Derby Hospitals NHS Foundation Trust. (10.04/G100049)

National Institute forMental Health in England

NIMHE West Midlands

TrentWorkforce Development Confederation

mhhe