The experiences of adults with complex mental health seeking support for their mental health

This thesis explores the experience of adults with complex mental health (CMH) seeking support for their mental health in primary and secondary services. CMH is an umbrella term for people who may struggle with their relationships with other people, regulating their emotions, frequent changes in mood, post-traumatic stress disorder (PTSD) or experience high levels of psychological distress. They may also experience long periods of depression or anxiety. Sometimes they have a diagnosis of ASC or ADHD alongside CEN. This thesis allowed for an in-depth qualitative exploration of the barriers and facilitators for help-seeking for individuals who may identify as having CMH. The literature review aimed to explore two questions: 1) What are the experiences of individuals with autism, ADHD or complex emotional need when accessing care for mental health distress or diagnosis? 2) Are the barriers or facilitators to being able to engage in care similar or different across the conditions? Method: A search was conducted in three databases (Web of Science, Scopus and PsycInfo) for peer-reviewed studies that explored the experiences of adults with autism, ADHD or CEN when accessing services for psychological distress or diagnosis. Search terms were created using the SPICE search strategy tool. Results: Thematic synthesis of 17 papers identified three themes and eight sub-themes. The themes included an “untidy parcel” representing how participants were made to feel by services and how services felt to them; “the words don’t come” and “needing better connections”. Conclusions: The results showed that there were similarities across the conditions with similar experiences of the diagnostic process and difficulty accessing psychological therapy due to inflexible referral process. Participants expressed a need for continuity of care and better collaboration with services. Practitioner Points: More nuanced understanding of how ASC, CEN and ADHD impact on a person’s ability to engage in healthcare would improve the experience. Awareness of local services that may be helpful for individuals post diagnosis. Ensuring that reasonable adjustments are made for sensory differences and social interaction difficulties. Allowing for flexible services that meet the needs of the individuals with collaboration over treatment options. Empirical study: Objectives: This study aimed to better understand the experiences of adults with complex mental health as they access primary care services. It sought to further understand how they made sense of their of predicament and psychological distress. Method: This study used a qualitative design with reflexive thematic analysis. Nineteen participants with complex mental health were interviewed using a semi-structured schedule. They were recruited via their GP practice following a planned recruitment strategy devised by the research team which included search terms for the following diagnoses CEN, PTSD, ASC and ADHD. Results: Three themes and eight sub-themes were identified. Participants expressed a desire to understand why they felt the way they did. They brought insight to their predicament and wanted to develop a trusting collaboration with their clinicians. Continuity of care was seen to be important for developing a connection to their care provider and flexible services that accommodated reasonable adjustments for different access needs was important. Conclusions: Overall, the study provided further evidence that those with complex mental health are currently underserved in the NHS. Novel insight into their health literacy questioned the assumptions that those with complex mental health lack insight, rather it gave evidence that services need to collaborate effectively with service users to enable better communication. Practitioner Points: Stigma around complex mental health is still present and felt by service users, being aware of this and addressing it will be helpful. Those with complex mental health often have a history of trauma, introducing trauma-informed care will help services be more welcoming and will benefit staff’s well-being too. Ensuring that reasonable adaptations are made for service users will facilitate their access to healthcare, this can be things like continuity of clinician or flexible booking systems that take into account the functional impact of their lived experience. Fostering continuity of care and allowing time for true collaboration over treatment options.