Embed Size (px)
Citation preview
Aus
tral
asia
n Ps
ychi
atry
• V
ol 1
1, N
o 2
•
June
200
3
MENTAL HEALTH SERVICES
180
MENTAL HEALTH SERVICES
Consumer and carer participation in mental health services
Chris Lloyd and Robert King
Objective:
To clarify the meaning of consumer and carer participation inmental health services, to identify reasons why consumer participation isimportant both to consumers and to services, and to discuss barriers to par-ticipation and ways of overcoming these barriers.
Conclusions
: Consumer and carer participation has been promoted as partof the National Mental Health Strategy and has the potential to empowerconsumers and their carers and to improve mental health services. Barriersto consumer participation include professional staff attitudes and resourceallocation. Guidelines are provided to assist services to address these barriersand increase the level of consumer and carer participation in both clinicaldecision-making and service development.
Key words:
carer, consumer, mental health services.
ental health reform has seen substantial changes in the deliveryof services. Initiatives have been directed towards structuralreform of mental health services, improving linkages with
stakeholders and promotion and prevention.
1
There has been an empha-sis on service quality and effectiveness and with enhancing outcomes forconsumers. The National Mental Health Strategy has provided the basisfor improving consumer and carer participation in decision-making,advocacy and outcome measurement.
1
This has been identified as a highpriority area to be maintained and strengthened.
Consumer participation can be considered at the micro and macro level.At the micro level, it means being actively engaged in clinical serviceplanning and treatment decisions. In other words, it is about being apartner in the clinical process rather than being merely compliant withthe clinical decisions made by experts. At the macro level, it meanscontributing to decisions about the way services operate, includingplanning and reform processes. Here the consumer or carer is acting notjust in relation to personal treatment but to broader processes thatimpact on larger groups of consumers and carers. In other words, it is arepresentative role.
Although consumer participation is a worldwide trend for a variety ofservices, there are three good reasons why it is particularly important inpublic mental health services and not just a ‘passing fad’.
1. There are no ‘market signals’ for mental health services. In many otherkinds of service, the market operates as a protective factor against pooror unresponsive service. If people are unhappy with services, they canmove their patronage to that of a competitor. There is little scope forthese kinds of responses to inadequate service in public mental health.All monopoly providers carry a particular burden of consultation tocounteract the licence to be unresponsive.
2. Consumers of public mental health services often have an ongoinginvolvement, and the quality and nature of the services they receivemight have a disproportionate influence on their global quality of life.Public mental health consumers often identify professionals as the
Chris Lloyd
Senior Occupational Therapist, Integrated Mental Health Service, Gold Coast Hospital and Senior Lecturer, Department of Occupational Therapy, University of Queensland, Qld, Australia.
Robert King
Senior Lecturer, Department of Psychiatry, University of Queensland, Qld, Australia.
Correspondence
: Chris Lloyd, Psychiatric Unit, Gold Coast Hospital, 108 Nerang Street, Southport, Qld 4215, Australia.Email: [email protected]
M
Australasian Psychiatry
• Vol 11, N
o 2 •
June 2003
181
people with whom they have the greatest amountof regular interaction and the quality of thatinteraction can have far-reaching effects.
3. Mental illness is often disempowering andundermines confidence and autonomy. The publicmental health service can either reinforce theidentity of the consumer as helpless, dependentand with little to offer or it can provide anenvironment in which the consumer can re-contact or develop capacities for and confidence indecision-making and social engagement.
There exists significant capacity for consumers toinfluence the types of services they receive. However,given the challenges associated with reform, healthservices vary in their ability to incorporate newdirections into current practices.
1
Changing attitudesof health professionals is crucial in adopting partner-ship with consumers. It must be recognized by men-tal health professionals that consumers of mentalhealth services know more than anyone else aboutwhat is needed in the planning, development, andmanagement of their care.
2
This article will explore the challenges of this para-digm shift that is confronting mental health practi-tioners. It is hoped that it will stimulate health-careproviders to reflect on the need for thoughtful, well-reasoned responses to situations that may threatentraditional understandings of practice roles and rela-tionships with consumers.
THE POLICY FRAMEWORK FOR CONSUMER INVOLVEMENT IN SERVICE MANAGEMENT
There are a number of policy documents that guideconsumer involvement in mental health servicedelivery.
National Mental Health Policy
(1992) statesthat positive consumer outcomes are the first priorityin mental health policy and service delivery.
3
Thepolicy suggests that the quality and effectiveness ofmental health services are enhanced if the services areresponsive to their consumers and communities andif avenues are created for participation in decision-making about the development of services and aboutan individual’s own treatment.
3
One of the key objectives of the
Queensland MentalHealth Plan
(1994) is to ensure that mental healthservices deliver high quality care that best meets theneeds of consumers and that is accountable for theefficient and effective use of resources. This was seenwithin the planning context of the establishment offormal consumer advisory processes at all levels toensure participation of consumers and carers in men-tal health service evaluation and planning.
4
The
Ten Year Mental Health Strategy for Queensland
(1996)again emphasizes formal consumer advisory processes
and a push towards the adoption of a consumer-focused service programme.
5
The
Second National Mental Health Plan
(1998) has,as one of its key priorities for future activity, thedevelopment of partnerships in service reform anddelivery. This plan states that consumers, familiesand carers who are key stakeholders must be in aposition to influence decisions on all aspects ofmental health services and have adequate resourcesand be assisted to do so.
6
The
National Standards for Mental Health Services
(1996) are outcome orientated with an emphasis onthe end result for consumers and carers.
7
In thisdocument, Standard 3 is about consumer and carerparticipation and it is stated that consumers andcarers are involved in the planning, implementationand evaluation of the mental health service. There areseven criteria related to this Standard, which coverssuch things as policies and procedures, undertaking arange of activities that maximize consumer and carerparticipation in the service, training and support,reimbursement, roles and responsibilities andrepresentation.
7
Another document of interest put out under theNational Mental Health Strategy is on education andtraining partnerships in mental health (1999).
8
Inpart, this document discusses why service usersshould be involved. That is, the founding principle ofservice user involvement in all aspects of mentalhealth services is the notion of participation: theright of people to be agents within the services thataffect their lives. This report emphasizes that healthprofessionals need to learn about and value the livedexperience of consumers and carers.
Enhancing Rela-tionships between Health Professionals and Consumersand Carers
provides an overview of current issues,policy and initiatives that impact on consumers,carers and health professionals and their ability towork in collaboration.
9
MAJOR CHALLENGES IN MAINTAINING OR EXPANDING CONSUMER PARTICIPATION
Government policy makes it very clear that mentalhealth services need to adopt a consumer-focusedservice delivery model. However, there appear to be anumber of barriers or obstacles that have impactedupon the extent to which this has taken place.
Perhaps the most significant factor relates to theattitude held by mental health professionals. SANEAustralia argued that iatrogenic handicap caused bystigma reinforced by health professionals needs to berecognized as a problem and should be addressedthrough ongoing consultative engagement with con-sumers and carers about their experiences.
10
Aus
tral
asia
n Ps
ychi
atry
• V
ol 1
1, N
o 2
•
June
200
3
182
Acknowledging personal prejudices is a difficult issuefor professionals. This is particularly the case when itis associated with attitudes to treatment that seemaltruistic or benign. There is a fine line between theexercise of appropriate care and concern and commu-nicating the message that people with mental illnessare unable to make decisions about their own well-being. Professionals may hide behind concepts suchas ‘duty of care’ to actively discourage consumer self-determination.
Taking a symptom management approach to servicedelivery often results in the person being treated asan illness and not as a person. This approach makesit difficult to focus on empowerment, strengths,client-focused care, participation, and recovery. Formany people, these are quite new concepts and arehard to adopt. These new models challenge oldconstructs. New models require professionals toexplore personal concerns over shifts in control, inboundaries, and in the therapeutic use of self.
Staff in mental health services have traditionallybeen in a position of power and consumers have beenpassive service recipients. In addition, there has oftenbeen a reluctance to include family members or carersin service provision. Carers have not been viewed asa partner with the consumer and service provider andtheir role is minimized in professional service deliv-ery.
11
Carers for the most part assume the majorburden of caregiving and are experiencing undueresponsibilities and pressure in their caring roles.
11
Nationally, carers have expressed extremely lowlevels of satisfaction with service provision in keysupport areas, such as accessing personal informa-tion, emotional and social support, information andeducation, and consultation by professionals.
11
Carersoften see service providers as again hiding behind anapparently benign ethical principle – in this case,confidentiality – to justify not including them inservice planning processes. It must be acknowledgedthat there will be occasions when there are realconflicts between the wishes of consumers and carers,and professionals may view this as a reason formaking autonomous and unilateral decisions.
Although subtle forms of prejudice and paternalismare undoubtedly factors in inadequate partnershipwith consumers and carers, practical considerationsare likely to be equally important. Mental healthprofessionals are already required to consult widely aspart of working in a multidisciplinary team and theirclinical accountabilities are often complex. Key deci-sions may be made in team meetings or in discussionswith senior professionals rather than in consultationwith consumers. Consulting with consumers andcarers as well as with professional colleagues mayintroduce a degree of complexity that clinicians judgeto be inconsistent with the time they have at theirdisposal.
In summary, collaboration involves commitment ofsignificant amounts of time to a process that is bothethically and logistically complex.
RECOMMENDATIONS FOR STRATEGIES TO CONSTRUCTIVELY RESOLVE STAFF RESISTANCE
Resolving staff resistance is particularly difficult andhas to be worked on from a number of differentfronts. Some strategies include the following:
●
Building collaboration and partnership con-siderations into the core clinical accountabilityprocesses. In practice, this means that consultantpsychiatrists and team leaders must overtlyand routinely enquire about collaboration andpartnership processes with both consumers andcarers in routine review meetings. The multi-disciplinary team must be involved in discussion,not just of clinical interventions but of strategiesto enhance partnership.
●
Making collaboration and partnership indicatorsa key feature of performance appraisals. Profes-sional seniors and team leaders must be preparedto undertake chart audits and in particularexamination of individual service plans todetermine not only whether the formalities ofpartnership, such as consumer signed plans, havebeen observed but also whether the spirit of collab-oration is evident in the form of consumer-appropriate language and appropriate detailing ofobjectives and strategies.
●
Establishing working parties to work on specificaspects of consumer and carer participation.This is particularly timely with accreditationand the push for quality activities and theexpectation that mental health services complywith
National Standards for Mental Health Services
.Therefore, it is important to be aware of therelevant policy documents and use yourknowledge of them to support the need forconsumer and carer participation.
●
Establishing programmes and different activitiesthat consumers can participate in so that staff cansee the contributions of consumers first hand.
●
Forming strong links with the non-governmentsector – they can be a powerful ally in assertingpressure on the mental health service to increaseconsumer and carer participation.
●
Staff education and training – staff require trainingin new models of service delivery and these needconsumer input so that they can gain a deeperappreciation of the lived experience of consumers.
Australasian Psychiatry
• Vol 11, N
o 2 •
June 2003
183
PRACTICAL WAYS OF INVOLVING CONSUMERS AND CARERS
There are a number of ways to involve consumers andcarers in the delivery of mental health services. Thiswill occur at different levels and may range fromeliciting consumers’ and carers’ views on informationprovided by the service to having them involvedin and directly responsible for aspects of servicedelivery. Implementation actions may include thefollowing.
Promotional material
Newsletters and leaflets are used to provide consum-ers with information about services, programmes andaccess. Consumers have a role to play in ensuringthat the information that is provided is jargon-free,clear and concise and is user-friendly.
Service plans
A key shift in new models has been the focus ofworking with people and identifying what they wantfrom their involvement with the mental health serv-ice. Consumer participation in the development ofplans for their treatment and care promotes thedevelopment of a partnership between the consumerand the mental health service provider. Plans shouldbe free of jargon and clearly document consumer andcarer objectives and priorities. Plans should presentnegotiated solutions to difficult issues such as ‘unre-alistic’ objectives, concerns about risk and tensionsbetween consumer and carer priorities. When mutu-ally satisfactory solutions are not possible, the pointsof difference should be clearly presented.
Evaluation
Evaluation of what we do is important in ensuringthat we are best meeting the needs of consumers andproducing quality services. Opportunities should betaken to maximize consumer and carer involvementin the needs analysis and in the monitoring andevaluation process of all the services and programmesthat are undertaken by the mental health service.This feedback provides valuable information aboutwhat is working well, what requires changes and howservices are delivered. While it may be difficult toinclude consumers and carers in general clinicalreview processes such as multidisciplinary team meet-ings, consumer and carer representatives can andshould be included in the quality assurance processesof the service.
Consumer and carer surveys
Regular surveys in the inpatient unit and in thecommunity with both carers and consumers shouldbe conducted to determine areas where service deliv-ery could be improved. Telephone surveys and satis-faction surveys are two means by which thisinformation can be obtained. This information canbe used as a basis to establish a working party to
progress suggestions that have been identified.Surveys must be judged not on the fact that theyhappen but on response rate and success in elicitingconcerns and providing a basis for service improve-ment. Surveys that have low return rates and blandresults are little more than tokenism. From time totime, an independent telephone survey should becommissioned. Consumers are often better able toarticulate issues by telephone than by mailed surveyand are more willing to speak openly to someonewho is not part of the service.
Consumer and carer forums
Public meetings or forums with consumers and carersshould be held on a regular basis. This works both toupdate consumers and carers about the service and togain their feedback about issues or concerns that theymay have and ideas they may have as priorities forfuture action.
Committee membership
Committees responsible for decision-making abouthow the mental health service runs and for makingdecisions about future directions for service deliveryneed to have mechanisms in place to ensure that theconsumer and carer voice is represented. An exampleis having a consumer and carer consultant sit on thecommittee and having consumer and carer feedbackas a regular agenda item.
Staff and consultants
In some instances, staff positions may be created forconsumers to work as project officers, for example,to coordinate implementation of consumer and carerparticipation. Alternatively, consumers and carersmay be hired as consultants to provide specializedconsumer-focused advice and training to service pro-viders. Advice may focus on policy, management andquality of service to mental health service providers,service review and development, and quality andservice audits for providers.
Staff training
Having consumer and carer input into the ongoingtraining courses for mental health professionals willassist them to understand the lived experience ofconsumers and the impact that the illness has had ontheir lives. Training aspects may include education inrecovery principles and skills for people who experi-ence mental illness, training in recovery competen-cies for mental health workers, providing training fortrainers in the recovery approach, and lectures andworkshops about mental health issues.
Promotion, prevention and early intervention
Key themes in the
Second National Mental Health Plan
are promotion, prevention, and early interventionfor mental health. Consumers place importance onthis approach to mental health issues rather thanwaiting until a situation requires action be taken.
6
Aus
tral
asia
n Ps
ychi
atry
• V
ol 1
1, N
o 2
•
June
200
3
184
This provides many opportunities for staff and con-sumers to work together on projects to assist in thedevelopment of initiatives that improve or enhancethe mental health and well-being of individuals andcommunities.
Research and evaluation
It is necessary that mental health services are able todemonstrate to individual consumers, carers andother service providers that the work undertakencontributes to better outcomes for the consumerswho use the service. Consumers need to be consultedabout what research questions they would likeanswered and participate in the research process. Forexample, they might have input into survey design orassist in conducting the research carried out fromwithin the mental health service.
Programme development
It is important to be able to ascertain the domainsthat are of particular importance to different consum-ers so that these can be addressed in interventionsdesigned to promote recovery.
RECRUITING AND RETAINING CONSUMER AND CARER REPRESENTATIVES
Services need to be active in recruiting consumersand carers for representative roles within the service.This means letting people know that consumer andcarer representation is welcomed, and providing apoint of contact and opportunities for induction intothe role. If the service takes a rather passive approach,it will find that those who put themselves forward arethe more outgoing or aggrieved. These are importantpeople and must be nurtured but services should alsoendeavour to identify and recruit ‘low profile’ peoplewho have a real interest in service development.
Beyond recruitment, the most important thing isto give consumer and carer representatives supportand to provide opportunities for ongoing educationand training. The consumers and carers need to feelvalued and that they have a meaningful role to play.It is important to respect the consumer’s comfortlevel and not require them to do things that maycause them feelings of discomfort.
At the micro level, mental health consumers andcarers, like many of the professionals that they areinvolved with, often have little experience in eithersharing decisions around their treatment or in healthplanning. Collaboration is therefore a learning pro-cess for both. At the macro level, consumers and
carers need to have the opportunity to learn abouthow decisions are made and how they can effectivelycontribute. Consumers and carers require assistancefrom professionals to negotiate the system, todevelop skills, and to have ongoing support. Thiscould include supervision, a clear statement of rolesand responsibilities, clear lines of accountability, andaccess to resources.
CONCLUSIONS
Mental health consumers have a unique contributionto make to the improvement of the quality of mentalhealth services. The significance of their uniquecontributions stems from the expertise they havegained as recipients of mental health services. Theircontribution should be valued and sought in areas ofprogramme development, policy formulation, pro-gramme evaluation, research, quality assurance, andeducation and training of mental health servicesstaff. We suggest that it is time to move beyondpaying lip service to consumer and carer participationand actively explore strategies to increase their partic-ipation in a meaningful way.
REFERENCES
1. Commonwealth Department of Health and Aged Care.
Promotion, Prevention andEarly Intervention for Mental Health – A monograph
. Canberra: Mental Health andSpecial Programs Branch, Commonwealth Department of Health and Aged Care,2000.
2. Psychosocial Rehabilitation Journal. Report of a World Health Organization (WHO)meeting on consumer involvement in mental health services.
Psychosocial Rehabili-tation Journal
1990;
14
: 13–20.
3. Australian Health Ministers.
National Mental Health Policy.
Canberra: AustralianGovernment Publishing Service, 1992.
4. Queensland Health.
Queensland Mental Health Plan
. Brisbane: Queensland Health,1994.
5. Queensland Health.
The Ten Year Mental Health Strategy for Queensland
. Brisbane:Queensland Health, 1996.
6. Australian Health Ministers.
Second National Mental Health Plan.
Canberra: MentalHealth Branch, Commonwealth Department of Health and Family Services, 1998.
7. Australian Health Ministers’ Advisory Council’s National Mental Health WorkingGroup.
National Standards for Mental Health Services.
Canberra: AustralianGovernment Publishing Service, 1997.
8. Deakin Human Services Australia.
Learning Together. Education and TrainingPartnerships in Mental Health
. Canberra: Commonwealth Department of Health andAged Care, 1999.
9. Mental Health Council of Australia.
Enhancing Relationships Between HealthProfessionals and Consumers and Carers – Final Report
. Canberra: CommonwealthDepartment of Health and Aged Care, 2000.
10. Sane Australia.
Sane Mental Health Report 2002–03
. Melbourne: Sane Australia,2002.
11. Mental Health Council of Australia and Carers Association of Australia.
Carers ofPeople with Mental Illness – Final Report
. Canberra: Commonwealth Departmentof Health and Aged Care, 2000.
