The high prevalence of mental disorders in the population is well recognized, and is estimated to be up to 33% annually. The treatment gap, the gap between the numbers of people with mental disorders and those receiving treatment, is also of great concern and a priority for policy makers. In European countries, about 50% of people with major depression and 20% of people with psychotic disorders such as schizophrenia do not receive any treatment. Even among those who receive some mental health care, many do not receive optimal care.
Equally important, however, are trust and a positive experience of treatment and care, which are essential to establish a therapeutic interaction between people with mental health problems and their care team. Without such positive care experience that relies on trust and mutual understanding, mental health interventions cannot be effective for a number of reasons including engagement, concordance and the therapeutic effect of positive relationships. Conversely, consistently negative patient 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, or by healthcare systems as part of quality assurance, applying rating scales designed and validated using a social science framework. Results are mostly satisfactory, although systematic assessments have only been conducted in countries with high investment in mental health. The experience of the care experience of people with mental health problems seen from their own perspective 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 and abuse in care, lack of information and no choice. 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 for of a group of people who were highly vulnerable and failed in exceptional ways 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 worrying. If it is assumed that people working in mental health services aim to do good, it is disturbing that their interventions are perceived as so damaging and insensitive by some of the people with greatest needs.
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 others’ expectations, powers and limitations.
There has been little systematic exploration of the mutual experiences of patients and clinicians and how these interact 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 mental health worker’s perspective of the care process.
In this project, GAMIAN-Europe, in partnership with the EPA aimed to identify the care experience of patients, complemented by the narrative of the mental health service. The two experiences were together in a dialogue, leading to conclusions about desirable actions.
The questions raised in this process include:
- What have been good and what have been negative experiences?
- Is the interaction between patients and mental health workers 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, or does their absence result in a demoralised 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?
Read the report here
A proposal developed by GAMIAN-Europe jointly with the European Psychiatric Association