Pathways of recovery: preventing further episodes of mental illness (monograph)

Empowering consumers and their families and carers through participation and partnerships

Page last updated: 2006

Real consumer and carer participation in the planning and delivery of mental health care is a central feature of relapse prevention. Consumers and their families and carers must be the driving force behind the reform of continuing care through the development and implementation of relapse prevention plans and the service responses that support them. Participation must occur at all levels, which means that consumers, supported by their families and carers, must be actively involved not only in the planning and evaluation of services, but also in the planning of their own treatment and continuing care.

People with mental illness require information and support to enable them to accept and understand their health condition. This information needs to support people to effectively self-manage their mental health, make health care choices, and interact with a variety of services to obtain the clinical and psychosocial support they need. Families and carers require similar information. This means having easily accessible information about mental health, mental illness, and illness management that is available in a diversity of developmentally and culturally appropriate formats. Particularly important in the context of relapse prevention, is understanding early warning signs and the risk and protective factors for ongoing wellbeing.

While 'expert' information is relevant, peer support is critical for many people coming to terms with living with a mental illness. Peer support, for both consumers and their families and carers, can provide essential information, fellowship, role models, mentors and advocates.

Consumers need to become skilled in participating in their own continuing care and ensuring that appropriate service supports are put in place for them. They need to expect that continuing care plans, which incorporate relapse prevention within a recovery focus, will be a routine component of mental health care. The input of consumers and their families and carers to these plans must be recognised as fundamental and thereby legitimised and actively engaged. Plans need to be developed in a timely manner through true partnerships, and the information shared as appropriate and agreed to by the consumer.

Plans must be supported and developed at a number of levels. In-patient mental health services must negotiate effective discharge plans with consumers, their families and carers, as well as with the health and psychosocial support services the consumer will require in the community. Mental health services, more generally, need to support the development of relapse and wellness plans that are reviewed at regular intervals and driven by the changing needs of the consumer.

Crisis plans may also need to be developed depending on the nature of a person's mental illness; in some jurisdictions these have been incorporated in the form of Advance Agreements, which set out the consumer's choices for care and treatment if he or she becomes acutely unwell and unable to make decisions at the time. Advance Agreements are a mental health adaptation of Advance Directives, which are also referred to as 'Ulysses agreements' or 'living wills'. Advance Directives typically apply in palliative care contexts, being a document that is created when a person is well that defines the medical treatment the person wishes to refuse should they become so unwell that they are unable to refuse consent to treatment. They developed in response to technological advances that can keep people alive and are a witnessed document that is legally binding in some jurisdictions.
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There is also need for plans that support and enhance the capacity of people to self-manage on a daily basis and for the longer-term. Plans need to cover daily wellness needs, such as using behavioural tailoring to ensure effective medication use and mapping out daily wellness needs in terms of exercise, nutrition, sleep and social activities. Longer-term plans also need to be made to set out goals that support recovery.

The development of illness management techniques that empower consumers and facilitate communication between consumers and service providers must be prioritised and encouraged. Approaches such as the Expert Patient Program4 have been developed in the United Kingdom to help people with long-term health conditions to be better able to selfmanage their health needs.

Collaborative Therapy is a comprehensive therapeutic framework that provides a tool for empowering consumers and enhancing communication between consumers and services (Castle & Gilbert 2003a, Castle & Gilbert 2003b). It enables consumers, clinicians and other services to work systematically and collaboratively toward optimal mental health outcomes. The approach prioritises consumer participation and continuous improvement. An important component is the Collaborative Treatment Journal, which is a small pocket journal held by the consumer that can be used to chart stressors, early warning signs, supports, and other factors that influence the course and management of their mental health. The journal places the consumer at the centre of their recovery by facilitating communication between themself and the other people and services involved in their continuing care. Randomised controlled trials of Collaborative Therapy are taking place in Victoria, ACT and South Australia (see Gilbert et al 2003). This approach is congruent with 4As, and provides a promising model that can be used to implement relapse prevention within continuing care models for people seriously affected by mental illness.

It is vital that the role of families and carers in relapse prevention be recognised and supported. Family support is essential to preventing relapse and the needs of families, and especially of the children of people with mental illness, must be acknowledged and services put in place to enhance their ability to support consumers while protecting their own wellbeing. Initiatives to include families and carers in treatment and relapse planning are essential. Support and training, for example in recognition of early warning signs, is also important for families and carers. Mental health services must become more responsive to the needs and concerns of families and carers as they often are the first to realise when early intervention needs to take place.

Footnotes

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