BACKGROUND

About 1% of the population are diagnosed with schizophrenia during their lifetime. Many people with schizophrenia living in high income countries benefit from continuous treatment and care (1). However, the treatment gap, the gap between the numbers of people with mental disorders and those receiving treatment is still high for people with schizophrenia, even in developed Western countries, where it has been estimated that between 15% and 50% of people with schizophrenia do not receive treatment (2).  However, even among those who receive some mental health care, the majority do not receive optimal care. Of particular concern is the high proportion, about 50% of people with schizophrenia who discontinue treatment after the first or second appointment and up to 70% during later stages of care, hindering their recovery (3,4).

The therapeutic relationship is crucial in the care process, especially for conditions that require long-term support for patients such as schizophrenia (5).  A positive experience of treatment and care is essential to establish a therapeutic relationship between people with schizophrenia and their care team. Such a positive care experience relies on trust and mutual understanding, requiring empathy, comprehensible information, good access and acceptable interventions, sustained over time.  Conversely, a negative care experience is a key marker of service failure and needs to be picked up by healthcare systems.

Patient experience in the literature is mostly measured by professionals such as psychiatrists and psychologists, applying rating scales designed and validated from a professional and social science framework perspective (5,6). Results mostly report satisfaction with care, although systematic assessments have only been conducted in countries with high investment in mental health. Reasons for low adherence are mostly attributed to patient characteristics (3,4). However, the experience of the care experience of people with mental health problems based on personal narratives is not so well explored. When available, such feedback tends to be more anecdotal, often reporting negative experiences that talk about misdiagnosis, over-prescribing, coercion, lack of information and no choice (7). Such patient experiences can be summarized as an intense feeling of disempowerment and the absence of patient centered care. Although such patient narratives are emotionally authentic and describe deeply personal experiences, there is a question whether such experiences as described by ‘mental health service survivors’ are representative, or specific only to a self-selected group of people who were highly vulnerable and failed by the system.

The discordance between the experience of many patients and the aims of mental health services, as expressed in mission statements and personal beliefs of care workers is striking and disconcerting.  It can be assumed that people working in mental health services aim to do good for the patients coming to them for help, so it is perplexing and disturbing that their interventions are perceived as so damaging and insensitive by some of the people with greatest needs. This is particularly so for people with schizophrenia, who are often very vulnerable, relying heavily on care and support.

Mental health care can only be effective if patients and mental health workers can develop trust that will reduce fear and enable the establishment of a therapeutic relationship. This will require an understanding of each other’s expectations, powers and limitations (8).  

Most research has been conducted from the perspective of either patients or clinicians. There has been very little systematic exploration of the experiences of patients with schizophrenia and clinicians and how these interact and develop throughout the care process. Mental health care would benefit from a better understanding of hopes and objectives, decision making processes, successes and frustrations from both the patient and the psychiatrist’s perspective of the care process, and actions that could prevent or reverse such negative experiences.    

OBJECTIVES

GAMIAN in partnership with the EPA is proposing a project that will identify the care experience of both patients with schizophrenia and psychiatrists. The experiences will be brought together in a dialogue, leading to conclusions about desirable actions.  

The questions this process will raise include:

• What have been good and what have been negative experiences?
• Is the interaction between patients with schizophrenia and psychiatrists lacking a foundation of trust, leading to a cycle of disrespect, fear and coercion?
• What interventions might have facilitated a positive process?
• Does psychiatric care have the tools and resources to offer adequate care for many of its patients? Does their absence result in a demoralized workforce giving up hope?
• Is there sufficient system support for the psychiatric workforce from sectors such as social care, housing and employment, limiting scope of interventions to medical care, enabling holistic care?
• Has training and education prepared the mental health workforce adequately?
• What interventions would support patients to gain optimal benefit from treatment and care?

A proposal developed by GAMIAN-Europe jointly with the European Psychiatric Association