Findings from the national survey on the experiences of those living with psychosis

National survey findings highlight lack of specialised supports and significant experiences of stigma for those living with psychosis.

Findings from a national survey carried out by Shine, in partnership with Mental Health Reform and the HSE National Clinical Programme for Early Intervention in Psychosis, aimed at gathering information from people with lived experience of psychosis and their family members and supporters, showed significant gaps and highlighted areas for improvement in the provision of dedicated and specialised support services for those living with psychosis. This first-of-its-kind survey in Ireland provides a platform for us to hear first-hand what it is like to experience and seek care for psychosis in Ireland.

The findings of this survey indicate that there are notable differences in the experiences of people attending an Early Intervention in Psychosis (EIP) service compared to those attending a non-EIP team or receiving support through general mental health services. 91% of people who had access to an EIP team reported access to services was ‘easy’ or ‘very easy. However, where people did not have access to an EIP team, only 26% found access to care ‘easy or ‘very easy. Those who accessed EIP (60%) spoke of the positive impacts of having a dedicated keyworker and support from a fully specialised team (43%) as being essential components in their recovery. Respondents referenced the importance of being listened to, understood and supported.

Over 42% of family members and supporters indicated that an increase in dedicated support for those supporting a friend or family member living with psychosis is crucial. Those who participated in family support groups, recovery education, psychoeducation programmes and peer support (through voluntary organisations and programmes such as Shine), praised the benefits of such support to enable them to accompany loved ones in their recovery journeys and jointly gain confidence to manage their lives. In EIP services, 86% reported access to family psychoeducation/ intervention in mental health services, compared to 4% in non- EIP services.

48% of people with self – experience of psychosis called for an increased availability of psychological interventions and alternative therapies for psychosis, such as Cognitive Behavioural Therapy (CBT) to enable them to develop a better understanding of their situation and to support them to take control of their recovery. In EIP services, 95% had access to CBT for psychosis, while this was only 14% in non-EIP services. Those who had access to an EIP team identified the CBT as very helpful and supported their recovery.

One of the key findings from the survey was the significant role that voluntary and community organisations play in providing support to people with self-experience of psychosis and their family members and supporters. Over 40% of all people surveyed had accessed support through Shine with 26% of family members mentioning Shine as the only organisation that they received support in relation to psychosis.

Within national conversations around mental health, the voice of those that experience psychosis and their families and supporters is often under represented. Fear, shame and lack of public education and awareness about more complex and severe mental health difficulties, creates a barrier to speaking out, meaning that psychosis remains a highly stigmatised and rarely spoken about experience. The findings of this survey put the extent of this experience of discrimination into sharp focus.

73.2% of respondents with personal experience of psychosis reported experiencing stigma and discrimination related to their mental health. The highest percentage of participants, 83.2%, reported experiencing stigma through media representation of psychosis, while 73.2% reported experiencing stigma in the workplace. Participants also experienced stigma within their local communities and among family and friends. 55% of survey respondents called for increased awareness and education among the Irish public and within general health services, on more complex mental health issues such as psychosis.

Nicola Byrne, CEO of Shine said; “International evidence has shown that people who experience psychosis deserve and need dedicated, specialised supports and services. We need to demand that current treatments are not good enough and more needs to be done, at a quicker rate, to support people experiencing psychosis”

Patricia McKeever, Regional Mental Health Team Leader with Shine said; “Shine continuously seeks opportunities to raise the voice of individuals and family members who have experiences of psychosis. It is only through asking people about their experiences can we discover strengths and gaps in service provision. Psychosis, as a mental health experience, is not widely understood. People face stigma and discrimination across all aspects of their life, so it was not easy for many of the respondents to speak out. We will continue to work to improve the supports available for individuals and family members who have experience with psychosis.”