Enhancing the occupational therapy role around ‘personality disorder’ and self-harm

In November 2019, a letter with the signatures of 500 occupational therapists was shared with the National Institute of Health and Clinical Excellence (NICE). The signatories also included eminent psychiatrists, academics and the heads of professional associations. The reason for this letter? NICE had advertised for members of a committee to review their guidelines for self-harm. While at least five medical doctors were seen as essential, there was no occupational therapy representation. While initially nothing could change this, concerns were expressed over social media, and within 48 hours, 500 occupational therapists and other professionals expressed the view that this decision was unacceptable. As a result, the Royal College of Occupational Therapy (RCOT) asked NICE to reconsider. Chief executive Julia Scott has called for our profession to be loud and proud. This response showed occupational therapists refusing to be excluded from their core work and utilising social media to organise, unite and amplify their voice. The volume and confidence of this voice meant that NICE relented. Occupational therapists are now represented on the NICE committee to review their guidelines for self-harm.

This demonstrates the importance of occupational therapy input to people who hurt themselves, who are often given the diagnosis of personality disorder. The RCOT was not a signatory of the 2018 Consensus Statement (Mind et al., 2018) on Personality Disorder. The Royal College of Psychiatrists has a position statement (RCP, 2020), but our profession has yet to make its position clear. As of 2015, there were no occupational therapists leading NHS personality disorder services (Dale et al., 2017), and occupational therapists are commonly not invited to apply for these roles.

Something needs to change in order for occupational therapists to become more visibly active in this area of work. Some occupational therapy textbooks promote highly stigmatising views of people with this diagnosis (Nott, 2014), although many curricula now incorporate this into the training of occupational therapists. Since 2015, the evidence base for occupational therapy and its role with people with personality disorder has grown substantially: for example, its role in promoting occupational engagement (Potvin et al., 2019), promoting positive sleep patterns in women with ‘personality disorder’ (Wood et al., 2015) and developing positive daily routines following discharge from hospital (Birken and Harper, 2017). However, the profession needs to examine why we have, in many cases, been unable to establish our role in a defined way.

Experience suggests that it is frequently the things people do that lead to this diagnosis being given. If, through such interventions mentioned above, we are able to understand what goes on for people when they perform everyday tasks, we can apply that same lens to self-harm and suicide. We can see these activities as serving a function rather than ‘bad behaviours’ to be eliminated.

Dialectical Behaviour Therapy (Linehan, 1993) is perhaps the most researched intervention for those diagnosed with borderline personality disorder, and its focus on building ‘a life worth living’, combined with the idea of teaching skills to make this possible, is entirely aligned with occupational therapy practice. Whether we make use of this model or develop other interventions, highlighting that our core skills are aligned with good practice in this area is something we need to be more vocal about.

Birken and Harper (2017), Connell et al., (2018) and others are at work developing and researching occupational therapy interventions in this area, but we need to do more. Perhaps the expertise that we bring to this population is our understanding and adaption of the environment, and promoting occupational engagement. The stigma surrounding this diagnosis is recognised, and it is evident that people will have difficulty functioning in environments where they are labelled deceitful, manipulative and attention seeking (Nott, 2014). One of the ways occupational therapists might contribute in this area is by using the core skills of our profession (Harding, 2016) to identify how a stigmatising social environment undermines functioning and to be explicit in our goal of shaping environments that promote function. For physical health problems, we have no problems in identifying hazards and adapting environments to ensure that people are able to do what they want and need to do. We can be equally confident in challenging language that judges, attitudes that exclude, and interpretations that locate difficulties in a problematic individual. When people use life-threatening ways of coping in restrictive environments, we can be the profession that calls for the environment to change rather than calling for more restriction or medication for individuals. We must be louder and prouder of our expertise in this area where silence could be harmful.

We now have a place in reviewing the NICE self-harm guidelines. We have researchers building an evidence base. We have an occupational therapist on the executive committee of the British and Irish group for the study of Personality Disorder and occupational therapists who vocally campaign on behalf of those with this diagnosis. But what will come next? Before long, someone will step forward to be the first occupational therapist to lead a specialist service. An official or independent occupational therapy position statement on personality disorder will be written. Eventually, occupational therapists will be seen as essential contributors to the work of helping those who struggle with relationships and who cope in ways that can be damaging. Because we understand activity, we can combat the idea that people do things just for attention. Because we understand environments, we can make the changes that need to happen. We can take the opportunities our training prepared us for and take seats at tables that do not currently have our names on. Loud and proud; not for ourselves but because those who are given this diagnosis need our help.