PART 4

CARERS AND FAMILIES

INTRODUCTION

4.1 Carers are family members and close friends who carry out a care-giving role for a person with a mental illness. In most cases, a caring family continues to be the most stable resource for mental health consumers throughout a lifetime of stressors, shifting resources and changing clinical services. Even if they do not live with the consumer, concerned family members find services for their ill relative, provide social, financial and emotional support, and serve as a last resort when the system fails. In 1998, it was estimated that there were about 104 500 carers in Victoria looking after persons in the areas of aged care, disability and mental health¹.

4.2 Research into the support and care of people with a mental illness confirms the critical role that families and other carers can play, the demands of care-giving, and the importance of family and carer satisfaction with services². The shift from institutional to community-based delivery of public mental health services has further reinforced the role and importance of carers and families in the treatment of people with mental illness. Victoria’s public mental health service has acknowledged that responding to the needs of carers and families is an essential aspect of effective service delivery³.

4.3 This Part of the report presents the results of focus groups and a mail survey of the perceptions of carers of persons with a mental illness. Despite the most careful of procedures, all surveys involve potential errors that can introduce uncertainty or bias. The methodological approach used in our survey has ensured credibility and appropriateness in relation to intended use. In particular, successful efforts were made to obtain responses from carers who did not initially respond to the survey. Analysis of these late responses indicated little non-response bias.

NEEDS OF CARERS AND FAMILIES

4.4 A review of the international literature indicates that in order for family members and other persons to be effective carers, they require:

• An understanding of mental health services:

• To become aware of what mental health services can and should provide, and how to access these services; and

• To help plan for the future when they are no longer able to provide care;

• Information concerning:

• The early warning signs of mental illness in order to take measures to prevent relapse;

• Medications and other types of treatment; and

• The nature of mental health symptoms in order to create an optimal social and emotional environment for the mentally ill person;

• Training in the management of mental illness:

• To cope with the unusual nature of the symptoms of mental illness; and

• To learn problem-solving approaches to behavioural difficulties created by mental illness;

• Recognition and inclusion:

• Public mental health services need to recognise the importance of family and carer participation in the planning, delivery and evaluation of services; and

• Support services for carers:

• Emotional support to resolve feelings such as grief, loss, anxiety and fear which family members experience. The resolution of emotional problems enhances the capacity of carers to cope;

• Crisis assistance when the person with a mental illness is particularly unwell; and

• Respite care to provide “breaks” from care-giving⁴.

SERVICES FOR CARERS AND FAMILIES

4.5 Under the Mental Health Act 1986, the objectives of the Department of Human Services include:

“To establish, develop, promote, assist and encourage mental health services which minimise the adverse effects of mental disorders on the individual and his or her family and community”.

4.6 The Act requires the Department’s Secretary to:

• support the development of services which assist carers and promote self-help and advocacy for people with a mental illness; and

• facilitate the provision of information, education and support to carers and advocates.

4.7 Victorian mental health policy recognises that carers are important partners in supporting people with a mental illness to live in the community. The 1996 Victorian “Carer Initiative” provided funding for services to work with carers in order to provide them with support, resources, education and respite. Since 1996, service development activities have included the provision of direct carer support as well as assisting mental health practitioners to better understand the needs of, and provide support to, carers and other family members. These activities include:

• Family Sensitive Training for all mental health services;

• Carer Crisis Support Program which provides flexible support to carers to assist them avert or overcome a crisis ($3.1 million in 2002-03);

• planned respite services to provide people with a mental illness and their carers with a change from usual living arrangements ($2.3 million in 2002-03);

• mutual support and self-help services which provide information and advice about mental illness and facilitate carer support groups ($1.2 million in 2002-03);

• carer support workers who work with the Commonwealth Carer Respite Centres to facilitate access to a range of services, including respite and carer support, either directly and/or through community development activities ($440 000 in 2002-03); and

• Koori carer support workers to provide support to family and community members who are caring for people with a mental illness, in order to prevent the breakdown of kinship networks ($500 000 in 2002-03).

4.8 The Department’s Mental Health Branch also supports a biennial conference for carers of people with a mental illness and Carers Week activities.

4.9 As part of enhancing service quality and accountability for services provided to carers, in 1997 the Department commenced an annual survey of carer and consumer satisfaction. The results of the Department’s carer surveys are consistent with other evidence which indicates that, while services to carers have improved in recent years, many carer needs and expectations remain unfulfilled⁵. The Department advises that government policy is to further strengthen support services for carers, as outlined in the Department’s 2002 publication New Directions for Victoria’s Mental Health Services.

4.10 In 2001, the Department commissioned an evaluation of the 1996 “Carer Initiative”. The evaluation noted that data concerning trends in service utilisation by mental health carers was incomplete for programs such as the Carer Crisis Support Program and respite services. The evaluation itself was subject to certain methodological limitations (e.g. a 9 per cent survey response rate, the use of leading questions), and the evaluation’s conclusions in relation to the effectiveness of carer support services should be treated with caution.

IMPACT OF THE MENTAL HEALTH SYSTEM ON CARERS AND FAMILIES

4.11 In order to assess the impact of the public mental health system on carers and families, interviews were undertaken with peak carer organisations, 6 focus groups for carers were conducted in both metropolitan and country venues, and a random sample of 780 carers were surveyed using a mailed questionnaire (338 replied for a response rate of 43 per cent). The survey had a margin of (sampling) error of about ±5 per cent, while error due to non-response was statistically non-significant.

Who provides care?

4.12 Fifty-five per cent of the 338 carers who responded to the survey were the parent of the person with a mental illness, 21 per cent were the husband/wife/partner of the person, 13 per cent were the son/daughter and 8 per cent were the brother/sister of the person. Nearly 75 per cent of carers who responded to the survey were female. Seventy-three per cent of all respondents were more than 50 years of age and 14 per cent were over 70.

4.13 Thirteen per cent of respondents reported being from a non-English speaking background, with less than one per cent being Aboriginal. About half or those surveyed indicated that they were in paid employment. The majority of carers (65 per cent) reported that they lived with the person they cared for.

Time spent caring

4.14 Table 4A shows that carers are highly variable in the amount of time they spend looking after the person with a mental illness, ranging from under 10 hours per week to more then 50 hours per week.

TABLE 4A
time spent by carers looking after the
person with a mental illness
(N = 291)

Source: Victorian Auditor-General’s Office, survey of carers, 2002.

4.15 About one-third of carers reported that they had been in contact with public mental health services for less than 5 years, one-third reported 5 to 10 years of contact, and one-third reported more than 10 years of contact with public mental health services. Eighty per cent of respondents reported that their most recent contact had been within the last 12 months.

Who receives care?

4.16 Survey responses indicate that 61 per cent of those receiving care were male. The majority of persons being cared for were under 50 years of age (84.7 per cent) with 38.8 per cent of persons being under 24 years of age. In addition to their mental illness, 25.8 per cent of persons being cared for also had drug/alcohol use issues, health problems (24.9 per cent), or an intellectual disability (7.8 per cent).

Help received by carers

4.17 Survey respondents were asked to rate how helpful various service providers had been in the last 12 months in helping the carer to look after the person with a mental illness. Table 4B shows that carers most frequently sought help from public mental health service psychiatrists and case managers, but found the services provided by carer associations and support groups more helpful. Some of these associations and support groups receive funding from the Department.

TABLE 4B
carer ratings of SERVICE utilisation and HELPFULNESS
(N = 299)

Source: Victorian Auditor-General’s Office, survey of carers, 2002.

4.18 In their comments to the survey, carers indicated that what they most valued from carer support groups and general practitioners is the ease of access to such services, as well as the information and emotional support they received. In relation to public mental health service case managers, carers most valued their knowledge of the mental health system and the manager’s skill in working with a person who has a mental illness. Carers also indicated that they wanted Area Mental Health Services (AMHSs) to improve carer access to psychiatrists and case managers, provide more information, better emotional support, greater involvement in decision-making and less turnover in staff.

Carer satisfaction with hospital-based mental health services

4.19 Of the carers who responded to the survey, 38.4 per cent indicated that the person they cared for had been admitted to hospital for treatment in the last 12 months. Forty-nine per cent of these admissions were on a voluntary basis and 51 per cent were involuntary. Carer satisfaction with hospital services is shown in Table 4C.

TABLE 4C
carer satisfaction with hospital SERVICES
(N = 130)

Source: Victorian Auditor-General’s Office, survey of carers, 2002.

4.20 In their comments to the Auditor-General’s survey, carers expressed considerable dissatisfaction with the following hospital practices:

• Hospitals not providing carers with information about the person’s mental illness, the medications given and their possible side effects. As one carer said, “If we had known that fainting was a likely side effect of our son’s medication, we would have kept a closer eye on him. As it was he fell over and required stitches for a head wound”;

• Hospitals not actively consulting with carers concerning the diagnosis and treatment plan for the person with a mental illness. As one carer said, “In the past there have been many occasions when hospital and clinical staff have made us feel excluded and misunderstood. There has been some improvement in recent years but a greater effort is required to collaborate with carers”; and

• Patients being discharged from hospital before their mental illness is under control/stabilised. Carers indicated that mental health patients are often released from hospital while they were still very unwell, and carers have neither the training nor the resources to cope with this situation. As one carer said, “When patients are released from hospital too early it is inevitable that the person will relapse and it also puts a huge strain on the family in coping with all this”.

4.21 The above results are consistent with the Department’s own carer satisfaction survey in which carers tend to be the least satisfied with the provision of information by hospitals, the amount of contact carers have with hospital staff and the help carers were given to plan for the time when the person they care for left hospital.

Carer satisfaction with community-based mental health services

4.22 Carers were also asked to rate their satisfaction with community-based public mental health services, focusing on the service used most often in the last 12 months. As shown in Table 4D, carer satisfaction is quite low, with half or less being satisfied with the services they receive.

TABLE 4D
carer satisfaction with community based SERVICES
(N = 313)

Source: Victorian Auditor-General’s Office, survey of carers, 2002.

4.23 In their survey comments, carers reported that outside of normal business hours it was very difficult to get a response from the Crisis Assessment and Treatment Team. While expressing their frustration with the limited access to services, carers also thought that the staff working in public mental health services appeared to be under-resourced and overworked.

4.24 The availability of services in regional areas was also a frequent source of complaint. As one carer said, “Services for the mentally ill in regional Victoria are terrible, especially when a hospital admission is needed. My son has been sent home from assessments by doctors who do not know him, only to be admitted to hospital a few days later in an emergency situation. The incredible stress this places on carers is unacceptable, and the life threatening risk my son has been in is unacceptable”.

4.25 Carers complained strongly about not being consulted by public mental health service staff concerning the treatment plan for the person with a mental illness. As one carer stated, “Mental illness is a family problem and not a consumer problem alone. Services need to listen to and be involved with carers and family”.

Impact of mental illness on carers and family members

4.26 As part of the survey, carers were asked to rate the impact of the person’s mental illness on themselves and their family. As shown in Table 4E, the majority of carers reported that they and their families experienced a number of negative consequences in terms of their level of happiness, their leisure time, their physical and mental health, their personal relationships and their standard of living. This evidence is consistent with the findings of a national survey of carers that was undertaken in 1999 by the Carers Association of Australia⁶.

TABLE 4E
effect of the person’s mental illness on carers and families
(N = 319 AND 297)

Source: Victorian Auditor-General’s Office, survey of carers, 2002.

Services most needed by carers

4.27 As part of the survey, carers were asked to rate their need for different types of services. As shown in Table 4F, carers rated their most important need as being for “education about mental disorders”, and their second most important need as “information about treatment options”.

TABLE 4F
SERVICES most needed by carers
(N = 204)

Source: Victorian Auditor-General’s Office, survey of carers, 2002.

4.28 In their survey comments, carers frequently mentioned that persons with a mental illness often experience difficulty in accessing appropriate treatment and support services.

4.29 Consistent with other research findings⁷, our survey of carers revealed that carers are looking for public mental health services to provide them with information, education, training and support in managing the person with a mental illness:

• “We need education on how to manage daily crisis situations, as well as quasi criminal and fraudulent activity”; and

• “Please understand the most critical time for a carer and their family is at the initial diagnosis stage. This is when support and adequate information and explanation is really needed”.

4.30 Survey respondents commented upon the need for better integration of drug and alcohol services and mental health services. As one carer said, “Patients with both mental health and drug problems fall through the cracks. Mental health say my daughter has a drug problem and the drug service says she has a mental health problem (she has both). Each of the services abdicates responsibility in favour of the other service”.

CONCLUSIONS

4.31 In order to be effective, public mental health services must take into account the important role of carers and families and be responsive to their needs where possible. This has been recognised in the Second National Mental Health Plan and in the Department of Human Service’s own policies and framework for service delivery.

4.32 Audit evidence demonstrates a major discordance between central policy directions and the experiences of carers and families. The survey results show that less than 50 per cent of carers rated community-based services as “helpful” or “very helpful”, with the exception of carer associations and support groups. Similarly, less than 50 per cent of carers reported that they were “satisfied” or “very satisfied” with hospital services, with the exception of admission procedures.

4.33 Carers indicate that they require better information, education, consultation, training and support if they are to effectively fulfil their responsibilities as a carer while safeguarding their own wellbeing.

RECOMMENDATIONS

4.34 We recommend that the Department of Human Services and Area Mental Health Services ensure that:

• Public mental health services are sensitive to the needs of carers and families. This will require carers and families to be included in the development of mental health polices, and clinical staff to actively collaborate with carers and families in the delivery of services; and

• Carers are provided with the information, education, training and support they require to effectively manage persons with a mental illness.

REPONSE provided by Department of Human Services

The Department provides significant funding for carers. Victoria has more paid carer consultants, more carer support and greater carer involvement than other states. Victoria has introduced a number of innovative programs to support carers including carer consultants, carer satisfaction surveys and carer crisis support and respite programs and plans to further improve carer participation and support.

As outlined in the recently released New Directions for Victoria’s Mental Health Services, in 2002-03 the Department will:

• Encourage mental health services to make greater use of carer resources.

• Prepare user-friendly information about mental health services for inclusion in the telephone directory.

• Maintain an up-to-date service directory on the Internet.

• Review other ways of improving mental health information and referral.

• Support research on the needs of carers of people with high prevalence disorders.

A carer information package developed in partnership with carers has recently been completed and is available in all Mental Health Services.

REPONSE provided by Department of Human Services - continued

The carer burden both nationally and internationally is well documented and is acknowledged by the Victorian Government in the recently released New Directions for Victoria’s Mental Health Services.

This is acknowledged by the provision by DHS of a range of services designed to support families and other carers of people with a mental illness. These services include: the carer crisis support program; planned respite care; mental health carer support workers; and mutual support and self-help services.

In recognition of the importance of carers as partners in mental health care, the Department has committed to take further action to encourage the involvement of carers in treatment and care planning. Details of the proposals are in the New Directions Report.

DHS continues to support ministerial advisory groups (that is, the Ministerial Advisory Committee on Mental Health and the Victorian Community Advisory Group on Mental Health) and MHB reference groups/committees that enable carer consultation and participation in the development, implementation, monitoring and review of mental health policy and service delivery. Area Mental Health Services are increasingly involving carer representatives to undertake these activities at a local level, including the funding and appointment of carer consultants by the services.

DHS recently published a resource kit for carers titled Information for Families and Carers of People with a Mental Illness (July 2002).

The new Carer Survey of public area mental health services has been developed in consultation with carers during 2001/02 and will be implemented in 2002/03. The survey includes specific measures of information, access, treatment and support for carers within child and adolescent, adult and aged person’s mental health services.

REPONSE provided by Goulbourn Valley Area Mental Health Service

Para. 4.31

Subsequent to the audit, a number of issues relating to improving sensitivity to the needs of consumers and carers through the implementation of a collaborative project developed by the Goulburn Valley Area Mental Health Service and Mental Illness Fellowship Victoria.

The project was managed by a Project Advisory Committee consisting of carers, consumers and mental health staff. This Committee had, as one of its prime responsibilities, a commitment to ensuring that the recommendations arising from the group process were taken to the GVAMHS management committee for discussion and action.

Outcomes of the project include:

• a number of recommendations regarding policy direction and service delivery;

• managerial support for the aims of the project resulting in changed attitudes of many staff towards carer and family issues;

• a carer consultant has been employed, markedly improving support and information services to carer;

• increased referrals of carers to family support service;

• a range of consumer/carer information materials have been produced including an information kit and an associated information pathway that is to be followed by staff to ensure that carers are informed throughout an episode of care;

• a Consumer and Carer Advisory Council has been established to actively represent the views and perspectives of consumers and carers, make recommendations to the organisation and to comment on outcomes achieved; and

• presentations regarding carer issues have been delivered over radio and in hospital-based and community forums.

RESPONSE provided by St Vincent’s Mental Health Service

Para. 4.29

Provision of information and education for carers is a key concern of our Family and Carer Participation Strategy. We run regular sessions with the active involvement of volunteer carers, our paid carer consultant and our staff. A newsletter for consumers and carers has been started. We view consumer and carer education as integral to any case management process.

Consumer and carer information kits have been developed over the past 2 years. More recently, the role of carers has been highlighted and incorporated and integrated into all areas of service delivery through involvement in treatment plans and policy development. The degree of effectiveness of this is variable, however, and we need to improve further.

¹ Australian Bureau of Statistics, 1998, The Caring in the Community, catalogue number 4436.0.

² Department of Human Services, 1996, In Partnership – Families, Other Carers & Public Mental health Services.

³ Department of Human Services, 1996, The Framework for Service Delivery: Better Outcomes Through Area Mental Health Services; and Department of Human Services, 2002, New Directions for Victoria’s Mental Health Services.

⁴ See: M Leggatt, 2001, “Carers and carer organizations” in G Thornicroft and G Szmukler, Textbook of Community Psychiatry, Oxford University Press; also Mental Health Council of Australia and Carers Association of Australia, 2000, Carers of people with a mental illness – Final report, Commonwealth Department of Health and Aged Care, Canberra ACT.

⁵ For example, see: G Thornicroft and V Betts,. 2002, International Mid-Term Review of the Second National Mental Health Plan for Australia, Department of Health and Ageing, Canberra; and M Bohan, and J Nankervis, 2000, Inclusion & support of family carers: How well are we doing in Mental Health?, VICSERV Conference.

⁶ Carers Association of Australia, 2000, National Survey of Carer Health and Wellbeing” Warning – caring is a health hazard.

⁷ For example, see: Carers Association Victoria, 2000, Carers Speak Out, Melbourne.