Service user involvement and personality disorder

(See Chapter 8.)

As highlighted in other chapters, many service users with a diagnosis of personality disorder have complex histories of trauma, abuse, neglect, or loss. These histories often go hand in hand with years of chronic invalidation, rejection, and simply not having their experiences or opinions heard or respected. Some service users with personality disorder have also experienced turmoil or difficulties in their relationships with others, so their interactions with mental health practitioners can often be fraught and problematic. This has often led to individuals being described as ‘difficult to work with’, ‘attention seeking’, ‘manipulative’ or ‘untreatable’, and frequently excluded from services.

Due to these kinds of experiences, many service users may mistrust authority and service providers. For some who do speak up, their feedback or opinions are often minimized or dismissed outright because of stigmatizing or discriminatory views about personality disorder; this serves to perpetuate feelings of invalidation and mistrust on both sides.

It is extremely common for people with personality difficulties to struggle with problems of identity; many people find it impossible to hold onto a sense of who they are. As people progress through treatment, this can become more pronounced; as past coping strategies are left behind, people often ask ‘What’s left?’, ‘Who am I if I’m no longer ‘a self harmer’ or ‘an alcoholic’ or ‘the crazy one?’. Involvement activities can provide a space for people to begin to explore new roles and ways of relating to people. This uncertainty about identity is a core feature of the experience of personality disorder, so there is immense therapeutic potential in providing spaces where this can be experimented with.

Although the growth of authentic and meaningful service user involvement in the field of personality disorder has been problematic, there is nonetheless room for immense optimism when both the concepts of personality disorder and involvement are understood and worked with appropriately. The opportunity for service users to embark upon activities that shape and direct the services they receive promotes inclusion and therapeutic growth in itself. Many service users exceed expectations, not only in terms of their individual recovery, but in their subsequent contributions to services and their ability to sustain work and meaningful activity in the future. The social implications cover numerous areas: pathways back to work or education become realistic; appropriate use of other NHS services provides substantial financial saving; problems with housing and social services can be resolved; offending behaviour is reduced or stopped; and most importantly the quality of life for the user improves dramatically, with new-found social inclusion and a life felt to be worth living.

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