East Sussex Borderline Personality Disorder Rapid Needs Assessment December 2013

Transcription

1 East Sussex Borderline Personality Disorder Rapid Needs Assessment December 2013 Miranda Scambler Public Health Practitioner Suzanne Daniel - FY2 Doctor in Public Health Jason Mahoney Programme Manager - Joint Commissioning Jane Thomas - Consultant in Public Health 1

2 Contents Page Executive Summary Key Facts and Figures 3 Issues and Gaps 4 Recommendations 4 1. Introduction 1.1 Context Methodology Defining Personality Disorder National Policies and Guidance 8 2. National Evidence 2.1 Defining Borderline Personality Disorder Causes of Borderline Personality Disorder Prevalence of Borderline Personality Disorder Hospital Admissions Risks associated with Borderline Personality Disorder Diagnosis of Borderline Personality Disorder Treatment of Borderline Personality Disorder Care Pathway for Borderline Personality Disorder Local Evidence 3.1 Prevalence in East Sussex Prevalence in Lewes Prison Special Services for Borderline Personality Disorder Borderline Personality Disorder in urgent and acute care services Hospital Admissions Services that include provision for personality disorder Sussex Care Pathway for Personality Disorders Future Need Service Provision in Other Areas Service user, Provider and Carer Voice Evidence of Effectiveness and Best Practice Conclusions Recommendations 49 2

3 Executive Summary CURRENT POPULATION Key Facts and Figures There are an estimated 377,400 people aged living in East Sussex, a 7.5% increase over the last decade. PERSONALITY DISORDER NATIONALLY National prevalence estimates for borderline personality disorder (BPD) are % of the population aged 16 and over. Women aged are estimated to be about 4.5 times more likely (1.4%) than men aged (0.3%) to be diagnosed with BPD. Three quarters of all hospital admissions for those with personality disorder diagnoses are for BPD. 78% of all in-patient borderline personality disorder cases in the UK are diagnosed in women. Life expectancy for those with personality disorder is significantly shorter than the general population. National evidence shows there is a lack of service provision for people with personality disorder. PERSONALITY DISORDER LOCALLY There are currently an estimated 1,900 adults aged 16+ with BPD in East Sussex. We would expect to see approximately 1,350 females and 550 males with BPD locally. In comparison to our ten nearest statistical neighbours East Sussex has the third greatest rise in estimated BPD since 2003 (8.3%). The number of men with BPD who are on remand at Lewes prison is estimated to have increased by 3.5% over the last 5 years. Over one third of the prison population for whom there are records reside in East Sussex, indicating that the prevalence of BPD within prison will impact on service demand upon release. Since 2010/11 there have been 998 hospital admissions for 479 people with disorders of adult personality and behaviour, representing a 53% increase over the last three years. Since 2010/11 there have been a lower number of admissions for year olds than expected, and a greater number of admissions for year olds. Over the last year, hospital admissions for males who have personality disorder has increased out of line with national rates. Across all trusts admissions are three times more likely to be non-elective (emergency) than elective. BPD is the most prevalent of all personality disorders for those admitted to hospital (6.5 times more prevalent than any other type). In line with nationally, women admitted to hospital are 4 times more likely to have BPD than men. There is a clear association between hospital admissions of people with personality disorder and deprivation. By 2020 the age group with the highest prevalence for BPD in males (55-74 years) is expected to increase by 13.6%, and for women an increase of 12.5% is expected. 3

4 The overall population of adults with BPD is expected to increase by 1% by GAPS IN SERVICE PROVISION Issues and Gaps A 2007 needs assessment on adult mental health across Sussex found specialist services for PD to be underdeveloped and recommended these should be developed. West Sussex and Brighton and Hove have developed these services but this has yet to be developed in East Sussex. There is a lack of community provision for personality disorder in East Sussex in comparison to similar areas. Due to the numbers of people who are estimated to have PD in the county, both in the general and criminal justice populations, there is likely to be a significant unmet need currently. There is no specialist crisis service for people with BPD in East Sussex. INFORMATION NOT CURRENTLY AVAILABLE Similarly to mental illnesses there is no direct medical test to diagnose personality disorder and difficulties diagnosing are compounded by the amount of information needed on personal history in order to assess personality traits. There are a very high number of unknown admissions types from Sussex Partnership NHS Foundation Trust (SPFT) indicating that there is a need for improved recording methods. Information on those who have been discharged from hospital and community provision for most frequent users is currently being collated. RECOMMENDATIONS SERVICE RECOMMENDATIONS: It is recommended that preventative interventions are needed, particularly to address the relationship between high incidence of personality disorder and those within the criminal justice system. Early interventions that address emotional intensity should be specifically targeted towards young people entering the criminal justice system and first presenters to primary care. It is recommended that a community personality disorders service should be developed as part of a holistic, whole-system approach. The service should provide a range of therapeutic activities which are available to members, aligned to assessed need. The STEPPS programme should form a part of this alongside a community programme of activities and support. The service should provide mentoring and/or volunteering opportunities for people with lived experience of borderline personality disorder. This approach should be patient centred and where possible involve the individual s wider network of support. It is recommended that crisis services could be improved by: o Developing the mental health crisis service to be more inclusive of the specific needs of people who have personality disorder, including signposting to IRIS and community personality disorder services where appropriate. o Investigating appropriate space for a small number of crisis or respite beds. TECHNICAL RECOMMENDATIONS: It is recommended that data collection of information regarding adults with personality disorders, and borderline personality disorder in particular, is improved in the following ways: o A joint approach between health, social care, police, criminal justice system, voluntary sector and service users is further developed. 4

5 o There is agreement across services on the specific traits indicating borderline personality disorder and how this is systematically coded. o There is regular collation of the feedback from service users regarding outcomes to better inform policy and practice across mental health and community services. It is recommended training is needed locally to enhance knowledge and skills of those supporting people with borderline personality disorder. RECOMMENDATIONS FOR FURTHER INVESTIGATION BY COMMISSIONERS: It is recommended further research is needed on the impact borderline personality disorder has on the health and wellbeing of people in East Sussex, particularly with regards to known risks such as substance misuse and risk of self-harm. It is recommended, in line with NICE guidance, there is further investigation into the amount of drug treatment being prescribed for BPD currently by GPs or Mental Health Services as there was not the scope within this work to investigate this nationally recognised issue. It is recommended further information is needed into the reasons for high repeat hospital admissions for people with personality disorders. It is recommended Information on those who have been discharged from hospital and community provision for most frequent users that is currently being collated should further inform this needs assessment. 5

6 1. Introduction 1.1. CONTEXT The Quality, Innovation, Productivity and Prevention (QIPP) Programme aims to improve the quality and delivery of NHS care while reducing costs. A service review was completed as part of the East Sussex QIPP programme recommended there should be a review of the impact of Borderline Personality Disorder on existing services, and consideration of how services could be significantly improved within existing resources. This Borderline Personality Disorders report will form part of that review. The focus of this work will primarily be services commissioned by Clinical Commissioning Groups (that is, tiers 1-3 detailed on P20). Locally there are no services commissioned specifically to work at these tiers. Personality Disorders were first defined by the American Diagnostic and Statistical Manual of Mental Disorders as diagnosable diseases in Previous estimates of prevalence in the United Kingdom are thought not to be widely applicable as research tended to involve poorly standardised assessment tools and small study populations which were not representative of the general population. 2 More recent analysis by the Department of Health in the United Kingdom suggests that between 5% and 13% of the population have diagnosable personality disorder 3, with approximately 4%, some two and a half million people, who could benefit from professional help. 4 This report will give an overview of the main literature around Borderline Personality Disorder, arguably one of the most prevalent types of Personality Disorder. It will look at how to define personality disorder; prevalence of personality disorder; classifications of different types of personality disorder; causes of personality disorder; diagnosing personality disorder, both national and local services and interventions for personality disorder METHODOLOGY The review uses best evidence, national and international literature, and local evidence to: a) Consider the initial literature search and any additional relevant guidance. b) Set out expected number of East Sussex cases. c) Set out current cases based on available data. d) Set out service provision and pathways. e) Evaluate the suitability of care pathways in relation to best practice and local evidence. f) Compare services in East Sussex with other areas in the South of England. g) Identify gaps in provision and where more efficient use of resources might apply DEFINING PERSONALITY DISORDER (PD) In mental health, the word personality defines the set of characteristics or traits than make each person an individual, including the ways we think, feel and behave. 5 Personality Disorder (PD) has proven a difficult term to define but there is general agreement that the term refers to behaviours opposing commonly held expectations of what is normal, which varies according to what is considered normal in different contexts. 7 The traits of PD behaviours are long standing characteristics noticeable from childhood or early teens. 6 1 National Institute of Mental Health (2007) Science Update: National Survey Tracks Prevalence of Personality Disorders in U.S. Population 2 National Institute of Mental Health (2007) Science Update: National Survey Tracks Prevalence of Personality Disorders in U.S. Population 3 Coid, J., Yang, M., Roberts, A. et al. (2006) Violence and psychiatric morbidity in a national household population a report from the British Household Survey. 4 Easton, M. (26 November 2009) Struggling with Personality Disorder: The Way We Behave, BBC News Website (accessed December 2009) 5 Bailey, S and Shooter, M - co-editors (2009) The Young Mind: an essential guide for parents, teachers and young adults. Bantam Press. 6

7 These behaviours can: make it hard to control feelings; can hinder coping strategies, make it difficult to sustain relationships, cause difficulty in interpreting social clues and can cause distress to the individual and/or to others. 6,7 Over recent years the World Health Organisation (WHO) 8 and the American Psychiatric Association 9 have both tried to provide a definitive definition of personality disorders, and these are the two most widely used definitions by health professionals today: The WHO produced the International Classification of Mental and Behavioural Disorders Definition (ICD-10) defining personality disorder as: a severe disturbance in the character, logical condition and behavioural tendencies of the individual, usually involving several areas of the personality, and nearly always associated with considerable personal and social disruption. Alternatively, The Diagnostic and Statistical Manual of Mental Disorders (DSM-V) is based on personality traits, or enduring patterns of perceiving, relating to, and thinking about the environment and oneself, and defines a personality disorder as: 'an enduring pattern of inner experience and behaviour that deviates markedly from the expectations of the individual s culture, is pervasive and inflexible, has an onset in adolescence or early adulthood, is stable over time, and leads to distress or impairment'. To date researchers have not identified a qualitative distinction between normal personality functioning and personality disorder 10 and as such both classification systems for personality disorder have little explanation of diagnosing presence versus absence of each personality disorder, so people do not fit neatly into just one given category. 11 However, the DSM-V guide to personality diagnosis recognizes that certain patterns of personality problems seem to be shared by fairly large numbers of people, and by identifying these patterns we can develop ways of helping that can be used wider than on an individual basis. 12 The three clusters of PDs (Figure 1) include ten classifications of PD: 6 Mental Health Foundation Website (2003) Personality Disorders an overview. 7 BBC Health (May 2009) Disorders/Conditions: Personality Disorder. (accessed 2013) 8 World Health Organisation (1992) The ICD-10 Classification of Mental and Behavioural Disorders: Clinical Descriptions and Diagnostic Guidelines. Geneva: WHO. 9 American Psychiatric Association (1994) The Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition () 10 Livesley WJ. Diagnostic dilemmas in classifying personality disorder. In: Phillips KA, First MB, Pincus HA, editors. Advancing DSM. Dilemmas in psychiatric diagnosis. Washington: American Psychiatric Association; pp Tyrer, P. & Bateman, A.W. (2004). Drug treatment for personality disorders. Advances in Psychiatric Treatment, 10, Bailey, S and Shooter, M - co-editors (2009) The Young Mind: an essential guide for parents, teachers and young adults. Bantam Press. 7

8 Figure 1: DSM-V Personality Disorders Grouped into Three Clusters CLUSTER A (odd/eccentric) CLUSTER B (dramatic/erratic) CLUSTER C (anxious/fearful) Paranoid Antisocial Avoidant Distrusting and suspicious interpretation of the motives of others Disregard for the violation of the rights of others Socially inhibited feelings of inadequacy, hypersensitivity to negative evaluation Schizoid Borderline Dependent Social detachment and restricted emotional expression Unstable relationships, self-image, affects, and impulsivity Submissive behaviour, need to be taken care of Schizotypal Histrionic Obsessive-compulsive Social discomfort, cognitive distortions, behavioural eccentricities Excessive emotionality and attention seeking Narcissistic Grandiosity, need for admiration, lack of empathy Preoccupation with orderliness, perfectionism and control (Source: British Psychological Society, Alwin et al, 2006) A number of recent reviews 13,14 have found widespread dissatisfaction with the classification of personality disorders in the previous editions of the DSM which has led to a recommendation for future research into a hybrid-trait-specific model which would retain six of the 10 personality disorder (PD) types: Borderline PD; Obsessive-Compulsive PD; Avoidant PD; Schizotypal PD; Antisocial PD and Narcissistic PD, each identified by a specific pattern of impairments or traits NATIONAL POLICIES AND GUIDANCE Managing Dangerous People with Severe Personality Disorder, Proposals for Development (1999) 16 This Home Office paper discusses existing models, services and approaches, and sets out the lack of treatment available for those people with severe PD who present a danger to the public. Personality Disorder: No Longer a Diagnosis of Exclusion. Policy Implementation Guidance for the Development Of Services For People With Personality Disorder (2003) 17 The National Institute for Mental Health in England (NIMHE) produced policy implementation guidance for the development of services for people with personality disorder. This document confirmed that PD services should be part of the core business of mental health trusts and suggested that specialist multi-disciplinary PD teams should be established for people with PD in significant distress, with difficulties or complex needs and the development of specialist day patient services in areas with high morbidity from PD. 13 Bernstein DB, Iscan C, Maser J. The Boards of the Directors of the Association for Research in Personality Disorders and the International Society for the Study of Personality Disorders. Opinions of personality disorder experts regarding the DSM-V personality disorders classification system. J Pers Disord 2007; 21: Pull C. The classification of personality disorders: crouching categories, hidden dimensions. European Psychiatry 2011; 26: American Psychiatric Association (May 2013) About DSM Home Office (1999) Managing Dangerous People with Severe Personality Disorder, Proposals for 17 Department of Health (2003) Personality Disorder. No Longer a Diagnosis of Exclusion. Policy Implementation Guidance for the Development of Services for People with Personality Disorder. London: Department of Health. 8

9 Breaking the Cycle of Rejection: Personality Disorder Capabilities Framework (2005). 18 This document, produced by NIMHE set out a framework to support the development of the skills enabling more effective working between practitioners and people with personality disorders and to support local and regional partners to deliver appropriate education and training. In conjunction with the 2003 guidance this has led to an NHS commitment to enhance and improve its service for PD. The Bradley Report (2009) 19 was a six-month independent review of the extent offenders with mental health problems or learning disabilities could be diverted from prison and what the barriers were to this. This review highlights need for the early identification of people with mental health problems or learning difficulties entering the criminal justice system and found that custody may exacerbate mental illness and may not be the right environment for such people to be in and outlined potential for appropriate and timely intervention. Borderline Personality Disorder: The NICE guidance on treatment and management (2009) 20 is based on best practice and systematic reviews of best available evidence. 21 The main guidelines are: Psychological treatment, especially for people with multiple co-morbidities or severe impairment (or both) should include an explicit and integrated theoretical approach, structured care in accordance with this guideline and supervision by a therapist. Twice weekly sessions should be considered or this should be adapted to the persons need. Long term psychological interventions should be used for BPD (over three months in duration). Drug treatment should not be used specifically for BPD. People with BPD should not be excluded from any other health or social care service. It is important to build a trusting relationship and work in an open, engaging and nonjudgemental manner: people would often have experienced rejection, abuse and trauma. Care should be person-centred and people with BPD should have the opportunity to make informed decisions along with their healthcare professional about their care and treatment. Work in partnership and actively involve people with BPD in finding solutions, encouraging consideration of different treatments/life choices and considering consequences of their choices. Discuss any changes with the person (and their family and carers if appropriate) beforehand and make sure changes are structured and phased as this may elicit strong emotions. Ensure care plans support work with other care providers during endings, referrals and transitions and that crisis service provision is available. Community Mental Health (CMH) services should be responsible for routine assessment, treatment, and management. 18 Department of Health (2006) Personality Disorder Capacity Plans London: Department of Health. 19 Department of Health (2009) Lord Bradley's review of people with mental health problems or learning disabilities in the criminal justice system 20 National Institute for Health and Clinical Evidence (2009b) Borderline personality disorder: treatment and management. NICE Clinical Guidance 78, developed by the National Collaborating Centre for Mental Health 21 Kendall, T., Piling, S., Tyrer, P., Duggan, C., Burbeck R., Meader, N. and Taylor, C. (2009) Borderline and antisocial personality disorders: summary of NICE guidance. In British Medical Journal, Vol 338: January

10 CMH teams should develop comprehensive multidisciplinary care plans with service users which should be shared with their GP. They should identify roles and responsibilities for service providers and user, short term treatment aims, long term goals and a crisis plan. Mental Health Trusts should develop cross-discipline specialist PD services with expertise in diagnosis and management of BPD to: provide consultation and advice to primary and secondary care, provide assessment and treatment for people with complex needs, offer expert diagnostic services to general psychiatric services, ensure clear communication within and between services, work with Child and Adolescent Mental Health Services to develop transitions to adult services, oversee implementation of NICE guidance, develop training programmes for diagnosis, treatment and management, and monitor service provision. The Offender Personality Disorder Strategy 22 (2011) Key Principles are that: The personality disordered offender population is a shared responsibility of (National Offender Management Service (NOMS) and the NHS; Planning and delivery is a whole systems pathway approach across the criminal justice system and the NHS from conviction, sentence, and community based supervision and resettlement; Offenders with PD at high risk of serious harm to others are primarily managed through the criminal justice system; Treatment and management is psychologically informed and led by psychologically trained staff; that it focuses on relationships and the social context in which people live; Related Department of Education and Department of Health programmes for young people and families will continue to be joined up with the offender PD pathway to contribute to prevention; Experiences and perceptions of offenders and staff inform service design and delivery; The pathway will be evaluated focusing on risk of serious re-offending, health improvement and economic benefit. From these principles an offender personality disorder pathway is implementing new arrangements for the assessment, management and treatment of offenders in prison and the community. Services are primarily targeted at men who present a high risk of serious harm to others and women who present a high risk of committing further violent, sexual or serious criminal damage offences. Offenders are likely to have a severe personality disorder/complex needs, and a clinically justifiable link between the personality disorder and the offending. A key principle for the Pathway is that an offender s pathway is psychologically informed, and focuses on relationships and the social context in which people live. NHS England and NOMS have currently put a tender out inviting proposals for a credible, effective and robust longitudinal evaluation of the national OPD pathway to demonstrate the impact of the pathway approach and assess whether the pathway is effective and provides good value for money. 22 Ministry of Justice National Offender Management Service and Department of Health (2011) The Offender Personality Disorder Strategy. 10

11 2. National Evidence 2.1. Defining Borderline Personality Disorder The term borderline personality was first proposed in 1938 the United States as a group of patients who fit frankly neither into the psychotic nor into the psychoneurotic group. Borderline Personality Disorder (BPD) is most common in adulthood and is present in just under 1% of the population. 18 BPD is characterized by mood instability, volatile relationships, an unstable self image and impulsiveness, and is sometimes referred to as a disorder of emotional regulation. 23,24,25 The DSM V defines BPD as: A pervasive pattern of instability of interpersonal relationships, self-image, and affects (mood), and marked impulsivity beginning by early adulthood and present in a variety of contexts. 9 People with BPD sometimes experience patterns of rapid fluctuation between confidence and despair, often accompanied by fear of abandonment and rejection and suicidal thinking. These behaviours mean that people with BPD are at particular risk of self-harm, parasuicide and completed suicide. 14,17 According to NICE guidance, Borderline Personality Disorder is often undiagnosed before the age of 18 although the features can be identified earlier. 17 BPD is also associated with social, psychological and occupational functioning impairment although the extent of these problems varies considerably and many people recover or learn to manage their symptoms. 17 Some people with BPD can maintain some relationships and occupational activities while more severe forms experience very high levels of emotional distress. 17 People with more severe forms of BPD can experience repeated crisis, impulsive aggression, and other impulsive behaviours such as excessive spending, substance misuse and binge eating. 15 People with BPD also have high levels of comorbidity, including other personality disorders as well as depression; anxiety disorder and substance misuse problems, other personality disorders and are frequent users of psychiatric and acute hospital emergency services. 15,17 In turn, substance or alcohol misuse and stress can often exacerbate the symptoms of BPD Cause of borderline personality disorder The cause of Borderline personality disorder is unclear but evidence indicates that there are likely to be several contributory factors as opposed to a single cause of borderline personality disorder. People can, however, be predisposed to BPD traits through both environmental and genetic factors, and many report a history of abuse, neglect or separation in childhood. 15 One study suggested that the number of people with BPD who have experienced trauma such as physical, emotional or sexual abuse may be as high as 75%. 26 Research also suggests that a series of events are likely to trigger the onset of the disorder in early adulthood and that people with BPD are more likely to be victims of violence, including rape, due both to being in a harmful environment as well as impulsivity 23 National Institute of Mental Health (2010) Borderline Personality Disorder: A brief overview that focuses on the symptoms, treatments, and research findings. 24 Kendall, T., Piling, S., Tyrer, P., Duggan, C., Burbeck R., Meader, N. and Taylor, C. (2009) Borderline and antisocial personality disorders: summary of NICE guidance. In British Medical Journal, Vol 338: January National Institute for Health and Clinical Evidence (2009) Borderline personality disorder: treatment and management. NICE Clinical Guidance 78, developed by the National Collaborating Centre for Mental Health. 26 Rethink National Schizophrenia Fellowship (2005) Personality Disorders Factsheet. RET

12 and poor judgement in choosing partners and lifestyles. 15 According to the British Psychological Association, 27 a combination of biological, social and psychological factors are associated with the development of personality disorder but it is difficult to show whether one of these is more predominant than the others. For example: biological factors could include genetic, temperament or biochemical factors; psychological factors could include childhood neglect, childhood abuse, post-traumatic stress disorder or family relationships; and social factors could relate to culture, peer groups, socio-economic disadvantage or gender related childhood maltreatment. These findings are supported by The Mental Health Foundation 28 and Personality Disorder Information Site. 29 The British Psychological Association concludes that: It is apparent that no single factor within an individual s environment, even in combination with a biological vulnerability, would be likely to produce a significant level of personality disorder. Therefore, multiple adverse life experiences are likely to be necessary. Research suggests that the factors above which are of aetiological importance are highly prevalent in British society, and as such it would be reasonable to suggest that prevalence of personality disorder will increase in the UK over time, although no evidence exists to support this claim Prevalence of Borderline Personality Disorder Information on borderline personality disorder has been limited until recent years. International research conducted primarily in the USA and the UK between 1989 and 2009 place the prevalence of borderline personality disorder between 0.5% and 3.2%. 31,32,33,34,35, 36,37 UK estimates place the prevalence at ,32 Using DSM-V, the adult psychiatric morbidity in England survey 2007 estimated the prevalence of BPD from age 16 and estimates that BPD is more prevalent in the younger adult female population (1.4% of year old women compared to 0.3% of men) (table 1). 27 Alwin, N., Blackburn, R., Davidson, K., Hilton, M., Logan, C., and Shine, J. (2006) Understanding Personality Disorder: A report by the British Psychological Association. 28 Mental Health Foundation Website (2003) Personality Disorders an overview. (accessed July 2013) 29 Personality Disorder Website (2009) PD Congress Presentations 2009: Ten things to know about Personality Disorder Moran. P. (2010) The influence of social, demographic, physical and any other risk factors on the prevalence and consequences of personality disorders. Mental Health and wellbeing 2010 ( ) 31 Zimmerman, M. and Coryell, W. (1989) DSM-III personality disorder diagnoses in a non patient sample. Demographic correlates and comorbidity. Archives of General Psychiatry, 46, Maier, W. et al (1992) Prevalences of personality disorders (DSM-III-R) in the community. Journal of Personality Disorders, 6, Black, D., et al (1993) Personality disorder in obsessive-compulsive volunteers, well comparison subjects and their first degree relatives. American Journal of Psychiatry 150, Moldin, S.O. et al (1994) Latent structure of DSM-III-R Axis II psychopathology in a normal sample. Journal of Abnormal Psychology 2 35 Samuels, J., Eaton, W. et al (2002) Prevalence and correlates of personality disorders in a community sample. British Journal of Psychiatry 180, Coid, J. et al (2006) Prevalence and correlates of personality disorder in Great Britain, British Journal of Psychiatry 188, Yueqin Huang, et al (2009) DSM IV personality disorders in the WHO World Mental Health Surveys. The British Journal of Psychiatry 195, 38 Macmanus, S. et al (2007) Adult psychiatric morbidity in England, 2007 Results of a household survey. NHS the information centre for health and social care 12

13 Table 1: Age-specific prevalence (% of sample population) of borderline (BPD) personality disorders in people aged and living in England, 2000 and Age Group (%) (%) (%) All aged Men Women All Adults Adapted from table 6.2 Adult psychiatric morbidity in England, 2007 More recent research in the US suggests that prevalence of lifetime BPD could be greater than previously realised, at nearly 6%, occurring equally in men and women. 39 Within primary care, the prevalence of BPD ranges from 4 to 6% of primary attenders, 40,41 with this cohort likely to more frequently visit their GP and to report psychosocial impairment. However, BPD is still thought to be under-recognised by GPs. 35 In mental healthcare settings, many studies report a prevalence of all types of personality disorder in more than 50% of the sampled population, with BPD the most prevalent subtype in non-forensic mental healthcare settings. Within community settings there is little percentage difference between men and women, while within services there is a greater prevalence in women as they are more likely to seek treatment. 42 The majority of those diagnosed are women aged between 25 and 44 years. 43,44,45 with most people showing symptoms in late adolescence or early adult life, although some may not come to the attention of psychiatric services until much later. 37 Diagnosing borderline personality disorder at earlier ages has proved controversial due to developmental changes, although it is thought to affect between 0.9 and 3% of the population of under 18 year olds. 46,47 (%) 39 Grant, B.F. et al (2008) Prevalence, Correlates, Disability, and Comorbidity of DSM-V Borderline Personality Disorder: Results from the Wave 2 National Epidemiologic Survey on Alcohol and Related Conditions. Journal of Clinical Psychiatry April ; 69(4): Moran, P., Jenkins, R., Tylee, A., et al. (2000) The prevalence of personality disorder among UK primary care attenders. Acta Psychiatrica Scandinavica, 102, Gross, R., Olfson, M., Gameroff, M., et al. (2002) Borderline personality disorder in primary care. Archives of Internal Medicine, National Institute for Health and Clinical Evidence (2009) Borderline personality disorder: treatment and management. NICE Clinical Guidance 78, developed by the National Collaborating Centre for Mental Health. 43 Bailey, S and Shooter, M - co-editors (2009)The Young Mind: an essential guide for parents, teachers and young adults. Bantam Press 44 Alwin, N., Blackburn, R., Davidson, K., Hilton, M., Logan, C., and Shine, J. (2006) Understanding Personality Disorder: A report by the British Psychological Association. 45 Rethink National Schizophrenia Fellowship (2005) Personality Disorders Factsheet. RET Lewinsohn, P. M., Rohde, P., Seeley, J. R., et al. (1997) Axis II psychopathology as a function of Axis I disorders in childhood and adolescence. Journal of the American Academy of Child and Adolescent Psychiatry, 36, Bernstein, D. P., Cohen, P., Velez, C. N., et al. (1993) Prevalence and stability of the DSM III-R personality disorders in a community-based survey of adolescents. American Journal of Psychiatry, 150,

14 Figure 2: Range and scale of Personality Disorder in England: (Source: Benefield, N and Joseph, N, 2009) Figure 2 illustrates the range and scale of Personality Disorder in England. This definition includes 5 million people in the UK that have some form of diagnosable personality disorder, 48 with approximately 4% of people with diagnosable personality disorder (two and a half million people) who would benefit from help in the U.K Hospital Admissions According to national Hospital Episode Statistics, a majority (75%) of all hospital admitted personality disorder diagnoses in the UK are for Emotionally Unstable Personality Disorder (EUPD) which is known internationally as Borderline Personality Disorder (BPD) (Figure 3). Figure 3: UK NHS Breakdown of PD Diagnoses per hospital admission * Diagnoses are based on the World Health Organization (WHO) International Classification of Diseases (ICD-10). Source: UK Department of Health, Hospital Episode Statistics 48 Benefield, N and Joseph, N (2009) Personality Disorder: Bradley and beyond, presented at the National Personality Disorder Programme,

15 2009/10 data shows that approximately 70% (6,300 out of 8,900) of hospital admissions for personality disorder in the UK are diagnosed in females and 30% in males. Borderline (78%) and Histrionic Personality Disorders (81%) are more commonly diagnosed among females while Antisocial (86%) and Obsessive Compulsive Personality Disorder (69%) are more commonly diagnosed among males (figure 4). Figure 4: UK Personality Disorder Hospital Admissions by Gender * Diagnoses are based on the World Health Organization (WHO) International Classification of Diseases (ICD-10). Source: UK Department of Health, Hospital Episode Statistics 2.5. Risks associated with personality disorder (PD) /borderline personality disorder (BPD) Analysis of psychiatric case registers and mortality data suggests that for men and women with PD, life expectancy is significantly shorter than for the general population (18.7 years shorter and 17.7 years shorter respectively), with the highest mortality rates amongst younger age groups. 49 Of particular prevalence in the literature is the association between PD and Axis I disorders from the DSM-V classification, including mental health problems such as depression, post-traumatic stress disorder, anxiety disorders, bipolar disorders, and impulse control disorders such as deficit hyperactivity disorder. 50,51 BPD is also particularly associated with drug or alcohol dependence (within this cohort there tends to be more men than women with BPD with an estimated 35% to 55% of those with substance misuse issues having symptoms of a personality disorder. 52 ), 53 those with an eating disorder, those within the criminal justice system 54 and those presenting with chronic self-harm. 55, 56 As a result of higher frequency of self-harm amongst people with borderline personality disorder, there is also a recognised increased risk of suicide, with 60 to 70% attempting suicide at some point in their life, and estimated suicide completion in approximately 10%. 57 The link between BPD 49 Fok M.L.Y., Hayes R.D., Chang C.-K., Stewart R., Callard F.J., Moran P. (2012) Life expectancy at birth and all-cause mortality among people with personality disorder. Journal of Psychosomatic Research, August 2012, vol./is. 73/2( ), ; Bailey, S and Shooter, M - co-editors (2009) The Young Mind: an essential guide for parents, teachers and young adults. Bantam Press 51 National Institute of Mental Health (2007) Science Update: National Survey Tracks Prevalence of Personality Disorders in U.S. Population 52 Rethink National Schizophrenia Fellowship (2005) Personality Disorders Factsheet. RET Zanarini, M. C., Frankenburg, F. R., Dubo, E. D., et al. (1998) Axis I comorbidity of borderline personality disorder. American Journal of Psychiatry, 155, Coid, J. et al (2006) Prevalence and correlates of personality disorder in Great Britain, British Journal of Psychiatry 188, Linehan, M. M., Armstrong, H. E., Suarez, A., et al. (1991) Cognitive-behavioral treatment of chronically parasuicidal borderline patients. Archives of General Psychiatry, 48, Alwin, N., Blackburn, R., Davidson, K., Hilton, M., Logan, C., and Shine, J. (2006) Understanding Personality Disorder: A report by the British Psychological Association 57 Oldham, J. M. (2006) Borderline personality disorder and suicidality. American Journal of Psychiatry, 163,

16 and depression has been shown to increase both the number and the seriousness of suicide attempts. 58 Within the Criminal Justice system over half of those in the UK prison system were found to have a personality disorder, 59 the most common being antisocial and borderline personality disorders. 52 The APMS prisoners survey 60 (1998) used a screening tool (SCID-II) and a sample of clinical interviews using DSM-V to estimate prevalence of Personality Disorders among prisoners in England and Wales and found males on remand most likely to present with a borderline personality disorder (table 2) Table 2: Prevalence (%) of Personality Disorders in Prisoners in England and Wales. Prison Group Male remand Male sentenced Female prisoner Any personality Disorder 78% 64% 50% Borderline Personality Disorder 23% 14% 20% Source: APMS Prisoners survey 1998 Research has indicated that preventative interventions are needed to address this relationship, specifically targeted towards children in care during childhood and those who enter the criminal justice system when young. 61 Studies have also shown that people with BPD experience significantly greater impairment in their work, social relationships and leisure compared with those with depression Diagnosis of Borderline Personality Disorder BPD is one of the most contentious of all the personality disorder subtypes to diagnose as it is usually diagnostically co-morbid with depression and anxiety, eating disorders such as bulimia, post-traumatic stress disorder (PTSD), substance misuse disorders, bipolar disorder (with which it is also sometimes clinically confused) and psychotic disorders. 63 Research suggests that because of this high level of comorbidity it is uncommon to see an individual with a pure borderline personality disorder 64 which occurs in only 3-10% of cases. 65 Until 2002 doctors and nurses were taught not to diagnose personality disorder because once people were diagnosed, they were often excluded from services. Perceptions of personality disorder have since evolved and there have been psychological, social and biological causal links evidenced in more recent research. 56 Diagnostic criteria for the two main classification systems differ substantially, yet both have relatively broad criteria for diagnosis: 58 Soloff, P. H., Lynch, K. G., Kelly, T. M., et al. (2000) Characteristics of suicide attempts of patients with major depressive episode and borderline personality disorder: a comparative study. American Journal of Psychiatry, 157, Singleton, N., Meltzer, H., Gatward, R., Coid, J. & Deasy, D. (1998). Psychiatric morbidity prisoners in England and Wales. London: HMSO. 60 Singleton N, Meltzer H, Gatward R, Coid J, Deasy D (1998) Psychiatric Morbidity among Prisoners GSS 61 Coid, J. et al (2006) Prevalence and correlates of personality disorder in Great Britain, British Journal of Psychiatry 188, Skodol, A. E., Gunderson, J. G., McGlashan, T. H., et al. (2002) Functional impairment in patients with schizotypal, borderline, avoidant, or obsessive-compulsive personality disorder. American Journal of Psychiatry, 159, National Institute for Health and Clinical Evidence (2009b) Borderline personality disorder: treatment and management. NICE Clinical Guidance 78, developed by the National Collaborating Centre for Mental Health 64 Fyer, M. R., Frances, A. J., Sullivan, T., et al. (1988a) Comorbidity of borderline personality disorder. Archives of General Psychiatry, 45, Pfohl, B., Coryell, W., Zimmerman, M., et al. (1986) DSM-III personality disorders: diagnostic overlap and internal consistency of individual DSM-III criteria. Comprehensive Psychiatry, 27,

17 Diagnostic criteria: DSM classification system Diagnostic criteria for personality disorder refer to behaviours or traits that are characteristic of the person's recent and long term functioning since early childhood. Personality disorder describes a constellation of behaviours or traits that cause either significant impairment in social or occupational functioning or subjective distress. To be diagnosed with borderline personality disorder, a person must show an enduring pattern of behaviour that includes at least five of the following symptoms: Extreme reactions including panic, depression, rage, or frantic actions to abandonment, whether real or perceived A pattern of intense and stormy relationships with family, friends, and loved ones, often veering from extreme closeness and love (idealization) to extreme dislike or anger (devaluation) Distorted and unstable self-image or sense of self, which can result in sudden changes in feelings, opinions, values, or plans and goals for the future (such as school or career choices) Impulsive and often dangerous behaviours, such as spending sprees, unsafe sex, substance abuse, reckless driving, and binge eating Recurring suicidal behaviours or threats or self harming behavior, such as cutting Intense and highly changeable moods, with each episode lasting from a few hours to a few days Chronic feelings of emptiness and/or boredom Inappropriate, intense anger or problems controlling anger Having stress-related paranoid thoughts or severe dissociative symptoms, such as feeling cut off from oneself, observing oneself from outside the body, or losing touch with reality Diagnostic criteria: ICD classification system Diagnostic criteria include variety of conditions which indicate a person's characteristic and enduring patterns of inner experience (cognition and affect) and behaviour(s) that differ markedly from a culturally expected and accepted range. Similarly to mental illnesses, there are no direct medical tests to diagnose a personality disorder. There are a considerable number of psychometric instruments and clinical tools that are currently being used, by both psychiatrists and psychologists. Examples are SCID-II, ZAN-BPD, MCMI-III, IPDE, PAI. Doctors identify specific characteristics and personality traits using ICD-10 or DSM-V and different combinations of traits indicate which type of personality disorder is present. Psychiatrists will also look at the longevity of the symptoms; that they are not a result of alcohol or drugs; that they are not connected to another psychiatric disorder; and that they cause negative consequences or significant distress to a person s life. For diagnosis purposes, traits must be seen in a combination of at least two of the following: thoughts, emotions, interpersonal control or impulse control. 66 Correctly diagnosing PD is problematic because of the amount of information needed about personal history, family, work and social life to address the parameters of different personality traits, and also due to the nature of PD itself meaning there is a potential concealment of this information. In addition, traits may be associated with alternative causes or may meet the criteria for more than one PD. 67,68 Women with borderline personality disorder are more likely to have co-occurring disorders such as major depression, anxiety disorders, or eating disorders. In men, BPD is more likely to co-occur with disorders such as substance abuse or antisocial personality disorder. According to the U.S. National Comorbidity Survey Replication about 85% of people with borderline personality disorder also meet the diagnostic criteria for another mental illness. 69 This can also affect treatment decisions as treatment for one type of PD may not be the most suitable for another. 66 Rethink National Schizophrenia Fellowship (2005) Personality Disorders Factsheet. RET Bornstein RF. Reconceptualizing personality disorder diagnosis in the : the discriminant validity challenge. Clin Psychol Sci Pract. 1998;5: Widiger TA. Trull TJ, et al. Performance characteristics of the DSM-IIIR personality disorder criteria sets. In: Widiger TA, Frances AJ, Pincus HA, et al., editors. DSM-V sourcebook. Vol. 4. Washington: American Psychiatric Association; pp National Institute of Mental Health (accessed 2013) What is Borderline Personality Disorder 17

18 2.7 Treatment of Borderline Personality Disorder General adult mental health services in England and Wales offer varying levels of service provision for people with PD since the decision was made in 2003 to expand services to include the treatment of personality disorders. Although these services are for PD generally, most users seeking services are likely to have a diagnosis of BPD and this is anticipated in the service provision. 70 a) Pharmacological treatment Nationally, the treatment for BPD is challenging and guidance suggests that drug treatment should not be used specifically for BPD, although the use of medication has increased. Several drugs are being prescribed as they have an impact on certain behaviours (antidepressants in particular) however, their benefit has been moderate. 71,72,73 The use of antidepressants, mood stabilisers and antipsychotics is common in clinical practice. Pharmacological treatments are often prescribed based on target symptoms shown by the individual, with chemicals often prescribed to help regulate emotions. 74 A longitudinal study found that 75% of participants with BPD were prescribed combinations of drugs at some point 75, and research into care of people with BPD indicates that many people are taking several classes of psychotropic drug simultaneously. 76 Psychotropic drugs have clinically significant side effects ranging from weight gain, diabetes and cardiovascular disease to problems with self-esteem, 77 with the balance of risk and benefit more unfavourable in young people due to treatment-emergent suicidal ideation. 78 b) Psychological Intervention Psychotherapies are at least partially effective for many patients and over the last 15 years Dialectical Behaviour Therapy has been developed specifically to treat BPD 79 with indications of positive effects, particularly for self-harming. 80 Other psychotherapies have been developed with empirical support behind them, including: mentalisation therapy; Cognitive Behaviour Therapy (CBT); Schema-focused therapy and Transference-focused therapy. 63 In 1995 Blum et al introduced Systems Training for Emotional Predictability and Problem Solving (STEPPS) which is a 20 week group treatment combining cognitive behaviour elements and skills training with a systems component for people with whom the individual with BPD regularly interacts. STEPPS is currently used in the US and the Netherlands and is designed to complement ongoing treatment (e.g. medication, individual therapy, case 70 National Institute for Health and Clinical Evidence (2009b) Borderline personality disorder: treatment and management. NICE Clinical Guidance 78, developed by the National Collaborating Centre for Mental Health 71 Blum, N., St John, D., Pfohl, B., et al. (2008) Systems Training for Emotional Predictability and Problem Solving (STEPPS) for outpatients with borderline personality disorder: a randomized controlled trial and 1-year follow-up. American Journal of Psychiatry, 165, Zanarini, M. C., Frankenburg, F. R., Hennen, J., et al. (2004a) Mental health service utilization by borderline personality disorder patients and Axis II comparison subjects followed prospectively for 6 years. Journal of Clinical Psychiatry, 65, Binks, C. A., Fenton, M., McCarthy, L., et al. (2006a) Pharmacological interventions for people with borderline personality disorder. Cochrane Database Systematic Review, CD National Institute of Mental Health (2001) Borderline Personality Disorder: A brief overview that focuses on the symptoms, treatments, and research findings. 75 Zanarini, M. C., Frankenburg, F. R., Hennen, J., et al. (2003) The longitudinal course of borderline psychopathology: 6-year prospective follow-up of the phenomenology of borderline personality disorder. American Journal of Psychiatry, 160, Zanarini, M. C., Frankenburg, F. R., Hennen, J., et al. (2004a) Mental health service utilization by borderline personality disorder patients and Axis II comparison subjects followed prospectively for 6 years. Journal of Clinical Psychiatry, 65, Mackin, P., Watkinson, H. M. & Young, A. H. (2005) Prevalence of obesity, glucose homeostasis disorders and metabolic syndrome in psychiatric patients taking typical or atypical antipsychotic drugs: a cross-sectional study. Diabetologia, 48, Hammad, T. A., Laughren, T. & Racoosin, J. (2006) Suicidality in pediatric patients treated with antidepressant drugs. Archives of General Psychiatry, 63, National Institute of Mental Health (2001) Borderline Personality Disorder: A brief overview that focuses on the symptoms, treatments, and research findings. 80 Linehan MM, Comtois KA, Murray AM, et al. Two-year randomized controlled trial and follow-up of dialectical behavior therapy vs therapy by experts for suicidal behaviors and borderline personality disorder. Arch Gen Psychiatry 2006;63:

19 management). In this context STEPPS has been found to improve impulsivity, negative affectivity, mood and social functioning in people with BPD. STAIRWAYS is a one-year groupbased programme developed for clients with Emotional Intensity who have completed the STEPPS Programme with several skills from the STEPPS programme repeated in more. The STAIRWAYS Programme encompasses three main aims: 1. Identifying how the additional skills might help overcome some of the problems participants are still having 2. Reinforcing the skills to manage emotional intensity 3. Applying the new skills to specific goals and challenges in their lives; for example, getting a job, taking a class or expanding their social life. 81 Psychological and psychosocial interventions are delivered in a variety of ways and settings within the NHS by clinical psychologists, psychiatrists, nurses, social workers and other mental health therapists. 62 c) Art therapies Arts therapies use art media to communicate and include art therapy, dance movement therapy, drama-therapy and music therapy. Art therapies were developed in the US and Europe and are currently offered in the UK for those with personality disorders, including those with BPD. This is specifically designed to help those who find it hard to express their feelings and thoughts verbally. d) Therapeutic Communities A therapeutic community is a consciously designed social environment within a residential or day unit with a programme using techniques in which the community itself is the primary therapeutic instrument. Therapeutic communities for personality disorder range from fulltime residential hospitals to units operating for a few hours a week. While none treat borderline personality disorder exclusively, it has recently been demonstrated that the admission characteristics of members show high levels of personality morbidity, with most exhibiting diagnosable features of at least three personality disorders. For personality disorders, non-residential communities are mostly within NHS mainstream mental health services, and residential units are in both NHS and tier 3 organisations Care Pathway Recognising Complexity: Commissioning guidance for personality disorders (2009), the Department of Health commissioning guidelines 83, recognise the importance of a whole system approach to comprehensive and co-ordinated service provision. Provision is provided in Tiers: Tiers 1 3 are community services; Tiers 4-6 are residential and very intensive services, taking regional referrals (national referrals for tier 6) and including secure and forensic services. 81 Partnership NHS Foundation Trust Website (accessed December 2013) Stairways 82 National Institute for Health and Clinical Evidence (2009b) Borderline personality disorder: treatment and management. NICE Clinical Guidance 78, developed by the National Collaborating Centre for Mental Health 83 Department of Health, (2009) Recognising complexity: Commissioning guidance for personality disorder services. 19

20 Source: Department of Health,

21 3. Local Evidence 3.1. Prevalence of personality disorder in East Sussex According to the 2007 adult psychiatric morbidity survey the overall prevalence for borderline personality disorder was at 0.5% of adults aged 16 or over. 84 When extrapolated to East Sussex (Table 3), this indicates that in 2012 there was an expected 1,885 people aged in the county with Borderline Personality Disorder, an increase of 145 over the last decade. Table 3: Estimated prevalence of BPD in adults (aged 16 74) in East Sussex population 348, Population 359, Population 368,701 Disorder UK Prevalence Prevalence estimates (total) 2012 Population 377,357 Borderline Personality Disorder 5 per 1,000 1,740 1,800 1,845 1,885 Source: adapted from ONS population estimates 2012 Table 4 uses prevalence estimates of borderline personality disorder (BPD) from the 2007 adult psychiatric morbidity survey, to show the expected number of cases of BPD for East Sussex, England and the South East by age and gender. Estimates show that women aged years are approximately 4.5 times more likely than men of a similar age to have borderline personality disorder. Table 4: Expected number of BPD cases based on 2012 mid year population estimates England and Wales Men with BPD Women with BPD South East East Sussex Eastbourne Hastings Lewes Rother Wealden Source; 2012 mid-year population estimates According to national estimates we would expect to see approximately 1,355 females with borderline personality disorder in East Sussex, nearly 2.5 times the expected 550 males with borderline personality disorder. In comparison to our 10 nearest statistical neighbours, East Sussex has the third greatest rise in estimated BPD population since 2003 (+8.3%) behind Shropshire (+8.4%) and Kent 84 Macmanus, S. et al (2007) Adult psychiatric morbidity in England, 2007 Results of a household survey. NHS the information centre for health and social care 21

22 (+10.7%), nearly twice the estimated rise in Worcestershire (+4.5%) and Dorset (+4.9%) which are the two areas with the closest estimated number of year olds with BPD (figure 5). Figure 5: Estimated prevalence of borderline personality disorder in adults (aged 16 74) compared to our statistical neighbours Source: adapted from ONS population estimates 2003 to Prevalence of personality disorder in Lewes Prison Lewes prison is a category B male prison established in 1853 which holds adults and local young people on remand. The prison currently has an operational capacity of 729, including 174 spaced in a new house block opened in All health care, both in-patient and outpatient, is provided by the Sussex Partnership NHS Foundation Trust (the Trust), including nurse led primary health care, inpatient care to people accommodated in the prison's healthcare centre and a specialist in-reach mental health team for people with mental health problems. Clinical staff are complemented by 3 uniformed officers that work full-time in the Health Care Centre (HCC). A health promotion programme is being developed including improving access to psychological therapy and group/individual talking sessions. The prison has 2 part-time psychiatrists and a recently appointed occupational therapist. 85 A Care Quality Commission Report following an inspection in November 2012 commented very favourably in their findings and spoke to patients who said that they generally found a positive attitude in the staff and services provided. 86 HMP Lewes currently holds 671 prisoners (as at 20 th November 2013). Whilst this is below maximum capacity, not all prisoners can share cells for either risk or medical reasons meaning that spaces may be lost. The average length of stay is 10 weeks. Ethnic monitoring data shows that currently 79% of prisoners identified themselves as white, 8.4% as Black, 4.3% as Mixed Ethnicity, 2.6% as Asian and 6% as other or not stated, indicating a 85 The Independent Monitoring Board (HMP Lewes Annual Report 1st February st January Care Quality Commisison Inspection Report (Dec 2012) HMP Lewes Prison Healthcare Department 22

23 significantly higher number of people of Black ethnicity that currently ONS population estimates suggest for the South East (1.6%) and for East Sussex (0.6%) 87. Throughout 2012 the population at the prison decreased slightly which reflected a 1% fall in the male remand population in England and Wales. However the population at Lewes is expected to increase after the announced closure of 7 public sector prisons with a loss of 2600 places. 88 In November 2013, 32% of prisoners were on remand awaiting trial which is consistent with historical trends for Lewes prison: If we apply national estimates to these figures (as described previously) this would indicate that there are currently 49 prisoners (23% of total population) under remand with borderline personality disorder, and 64 sentenced prisoners (14% of total population). This compares to approximately 38 prisoners under remand with BPD in 2008, 89 and 66 sentenced prisoners with BPD, showing an increase of 11 over the last 5 years of prisoners under remand who are likely to have borderline personality disorder. Of the 671 prisoners there are 515 for whom there are recorded reception addresses. Prisoners entering HMP Lewes are received predominantly from East Sussex and Brighton and Hove (32%) (Table 5). Nearly one quarter of those in HMP Lewes (23%) have no recorded reception addressed and are assumed to be foreign nationals or of no fixed abode. With one third of the prison population residing in East Sussex, the prevalence of BPD within the prison is likely to be impacting on the demand for local BPD services on release. Table 5: Area of Residence of the HMP Lewes Population November 2013 Area % of total prison population East Sussex 15% Brighton and Hove 17% West Sussex 17% Kent 8% London 6% Surrey 3% Middlesex 1% Further Afield 10% Unrecorded 23% Source: HMP Lewes Of the 32% from East Sussex, and Brighton & Hove: 73% were from the three major centres in the area: Brighton & Hove (52%); Eastbourne (13%); and Hastings (8%) (Figure 6), indicating that the biggest impact on PD services for males released from HMP Lewes will most likely be in Brighton and Hove. 87 ONS (2011statistics) Ethnic Group and Religion 88 The Independent Monitoring Board (HMP Lewes Annual Report 1st February st January HM Prison Service and East Sussex Downs and Weald NHS PCT (2008) HM Prions Lewes Healthcare Needs Assessment

24 Figure 6: Town of Residence for Prisoners Residing in East Sussex November 2013 Source: HMP Lewes A 2012 audit of healthcare in Lewes prison found mental health issues and hypertension to be the most prevalent health issues of a sample of 43 prisoners aged over 50 years. The audit noted a need for more regular mental health clinics to improve monitoring Specialist Services for Borderline Personality Disorder Services at Tiers 1 to 3 encompass community team-based treatments and intensive day services. Residential and very intensive services are designated as being Tier 4 services. Key elements of need for people with personality disorder include a sense of belonging to a community, having a place of safety to go to, establishing connections and attachments, trusting relationships and creating a life outside of the personality disorder label. Clinical staff within local Trust-provided community services are trained in the STEPPS programme so there is specialist skill, knowledge and interest that can be utilised, although there is no systematic structure currently in place to pool these skills. Commissioning of Prescribed Services became the responsibility of NHS England in April 2013, comprising of 8 units for approximately 450 people designated across the country to provide Tier 4 BPD services. NHS England also now have responsibility for all local Trustprovided secure facilities, community secure and forensic teams, including those relating to a new women-only facility with low secure beds which opened in Chichester in There are currently no services in East Sussex which are designed to specifically meet the needs of people with borderline personality disorder. The geography of East Sussex makes it problematic to create an accessible hub as a drop in space for those with personality disorder. However, an online website IRIS has just been launched as a virtual community and there are ongoing discussions to further meet these needs. Lavender Lodge was a residential facility set up in 2003 to address high external placements of women in secure services, which evolved in to a specific BPD service for women not only stepping-down from medium secure units but increasingly stepping up from acute in- 90 Eva Chakraborti and Olivier de Brett (2012) Chronic disease management at HM Prison Lewes: an audit 24

25 patient admissions. Between 2008/09 and 2012/13 there were 27 admissions to Lavender Lodge, 70% of which were of women stepping-up from acute in-patient services. Between December 2012 and Summer 2013 the average length of stay was 241 days, with a shortest of 7 days and a longest of 983 days (2.75 years). There were also 10 short stay crisis admissions during the last 18 months, accounting for 63 additional bed days. 91 The cost of Lavender Lodge is 980,000 per annum or 163,000 per bed. This compares with: Acute in-patient bed costs (in East Sussex) of 112,000 on average. Locked Rehabilitation beds (in East Sussex) of 84,000 Low Secure Unit beds (in Sussex) of 138,000 Medium Secure Unit beds (in Sussex) of 158, Subject to the local CCG Governing Body s decision Lavender Lodge has recently been decommissioned, with those women supported in this residential facility being resettled within East Sussex and supported by alternative existing resources. No equivalent or similar service to Lavender Lodge is available in either West Sussex or Brighton and Hove. A 2007 needs assessment looking at adult mental health across East Sussex, West Sussex and Brighton and Hove found specialist services for PD to be under-developed and recommended all three areas should explore the possibility of developing specialist services for personality disorder locally. 93 This has been developed in West Sussex and Brighton & Hove, as outlined later in the report, but has yet to be developed in East Sussex Personality Disorder in urgent and acute care services It is recognised that people with a borderline personality diagnosis can fall into a repetitive and distressing pattern of hospital admissions. 94 NICE guidelines suggest that people with personality disorders are referred to local alternatives to admission before admission is considered, for example a crisis resolution team. 95 These findings have led to a local shift to avoid hospital admissions for people with personality disorder, yet there appears to remain a significant number of admissions locally. Local guidelines on working with people with personality disorder who are accessing acute and urgent care were established in 2013 to address these issues; provide clarity of the roles; provide consistency of approach and to facilitate a service users attachments in the community rather than with acute inpatient services. 96 Guidelines suggest: Joint care and crisis plans should be undertaken with detail of purpose of attendance at Inpatient units, Crisis Resolution & Home Treatment Teams (CRHTs) and Accident & Emergency Mental Health Liaison Teams (MHLTs), and should include key partners and a comprehensive risk formulation to inform decisions at times of crisis or increased risk. Complex case reviews should be considered for those with an admission of more than 21 days and no apparent progress. 91 East Sussex Joint Commissioning Unit Mental Health 92 East Sussex Joint Commissioning Unit Mental Health 93 Hastings and Bexhill PCT, East Sussex Downs and Weald PCT, West Sussex PCT (2007) Mental Health Needs Assessment for Adults aged in East and west Sussex. 94 Grace, M. & Gerry, L. Client controlled brief acute admissions for BPD clients with a history of troublesome hospitalisations. Article prepared for Brighton Assertive Outreach Team, Sussex Partnership NHS Foundation Trust. 95 Borderline personality disorder: treatment and management, NICE Guideline Sussex Partnership NHS Trust (June 2013) Guidelines for working with people with personality disorder who access urgent and acute care services. 25

26 Community, acute and specialist services need to work collaboratively, and with services users and families/carers where possible, and a positive risk management approach taken Reason for A&E attendance should be recorded and there should be liaison between all relevant services including acute, community and specialist where relevant. Referral to CRHT should be for agreed intervention based on liaison with community teams In the absence of commissioned Tier 4 and crisis housing services, hospital admissions may at times be inevitable. Hospital admissions should: be clear about the diagnosis, any other diagnoses of mental illness, and the stage the patient is at: o Stage 1: first presentation for admission and/or early stage; diagnosis of BPD and/or other mental illness to be verified, short term mental health service involvement. o Stage 2: occasional presentation for admission (once or twice in a year), usually an acute crisis; known diagnosis, known to mental health services for considerable time. o Stage 3: repeated presentation for admission (more than twice a year), usually associated with increase in psychosocial stressors. Known diagnosis; long term involvement with mental health services; been through various specific treatments. When on a ward, patients should continue to access community treatment in which they are engaged, or should access brief relevant psychological and occupational therapy services (as specified in the guidelines) if unable to leave the ward East Sussex Hospital Admissions Inpatient hospital activity data described below is sourced from Secondary Uses data (SUS data) made available by the Commissioning Support Unit (CSU) covering inpatient hospital episodes in the three years 2010/11, 2011/12 and 2012/13. One episode of care is the time a patient spends in the continuous care of a consultant. Episodes of care were selected by looking for ICD10 codes F60 to F69 (disorders of adult personality and behaviour) in the primary diagnosis position or any other secondary diagnosis position. An admission can be made up of several episodes when responsibility is transferred to another consultant. The quality of coding may vary between hospital provider and over time. The information outlined below looks at hospital admissions excluding attendances at A&E. Between 2010/11 and 2012/13 there were 997 admissions for East Sussex residents with disorder of adult personality and behaviour as a primary or other diagnosis position. Specific personality disorder was coded in nearly 9 in 10 (87%) admissions (Figure 7). 26

27 Figure 7: % of hospital admissions by type of personality or behaviour disorder in East Sussex 2010/11 to 2012/13 Source: SUS data, 2013 Over the last three years hospital admissions for those with either a primary other secondary diagnosis position of a disorder of adult personality and behaviour have risen by 53%, from 268 in 2010/11 to 411 in 2012/13, with a total of 998 admissions over the three years. This includes a total of 1,084 episodes of care for 479 individual patients in East Sussex. It should be noted that improved coding may be a contributing factor to this rise. Notably the greatest rise in admissions over the last three years has been for Wealden, although Eastbourne (+37%) and Rother (+85%) have seen greater increases over the last year. Unlike the rest of East Sussex, admissions for residents of Lewes have been steadily decreasing over since 2010/11 (Figure 8). Figure 8: Hospital admissions for those with a disorder of adult personality and behaviour in East Sussex by district/borough, 2010/11 to 2012/13 Source: SUS data, 2013 There is a clear association between the number of admissions of people with disorders of adult personality and behaviour with areas of deprivation in East Sussex (Figure 9: where 1 is most deprived and 5 is least deprived). 27

28 Figure 9: Hospital admissions and Index of Multiple Deprivation Quintiles in East Sussex Quintile RATE PER 1, Source: SUS data, 2013 Of the ten wards with the highest rates of admission for people with disorders of adult personality and behaviour (Figure 10), seven are ranked within the most deprived quintile of East Sussex (IMD rank where 1 is most deprived and 101 is least deprived). Figure 10: Hospital admissions and Index of Multiple Deprivation Score in East Sussex Source: Public Health Intelligence Team, 2013 RANK WARD NAME RATE PER 1,000 IMD RANK 1 Upperton Central St Leonards Gensing Hampden Park Hellingly Devonshire Newhaven Valley Seaford South Lewes Bridge Sidley Figure 11 shows that, as would be expected the greatest number of admissions are recorded from Sussex Partnership NHS Foundation Trust (SPFT), followed by East Sussex Healthcare NHS Trust (ESHT) and Brighton and Sussex University Hospitals NHS Trust (BSUHT). Across all Trusts, 75% of admissions non elective (emergency) and 25% elective (a planned admission). This rises to 78% of SPFT admissions being non-elective, 83% of ESHT admissions and 85% of admissions from BSUHT. Figure 11 also shows that SPFT is the only Trust with unknown admission types (58% of admissions for people with a disorder of adult personality and behaviour), indicating that there is a need for improved recording methods. 28

29 Figure 11: Elective and Non Elective Hospital Admissions for disorders of adult personality and behaviour in East Sussex by provider, 2010/11 to 2012/13 Source: SUS data, 2013 Of the 590 SPFT admissions of people from East Sussex with disorders of personality and behaviour, the majority (56%) were referred to Eastbourne District General Hospital (EDGH) (Table 6). However, over half the referrals to EDGH (184) did not have type of admission recorded. Similarly 55% (127) of ESHT admissions were to EDGH. BSUHT are most likely to report admissions to the Royal Sussex County Hospital. Table 6: Referrals for hospital admissions in East Sussex 2010/11 to 2012/13 TOP PROVIDER S MAIN HOSPITAL SITE REFERRED TO NUMBER OF REFERRALS % OF TOTAL REFERRALS SPFT ESHT BSUHT Department of Psychiatry (Eastbourne District General) Woodlands (St Leonards on Sea) Mill View Hospital (Brighton and Hove) Meadowfield (West Sussex) Eastbourne District General Hospital Conquest Hospital (St Leonards on Sea) Royal Sussex County Hospital (Brighton and Hove) Princess Royal Hospital (West Sussex) % 27% 4% 3% 55% 42% 59% 31% Source: SUS data, 2013 Over the last year there have been lower numbers of hospital admissions of people with disorders of adult personality and behaviour for those aged between 20 and 34 than we would expect in comparison to aggregated percentages over the last three years (Figure 13). There has also been an increase in admissions for those aged 35 to 54 over the last year, particularly amongst the age group. 29

30 Figure 13: Hospital admissions for those with a disorder of adult personality and behaviour in East Sussex by age, 2012/13 and 2010/11 to 2012/13 Source: SUS data, 2013 In 2012/13, 38% of hospital admissions for adults of disorders of personality or behaviour were for males and 62% for females. This compares to an average of 28% males admissions and 72% female admissions between 2010/11 and 2012/13, in line with national averages (30% and 70% respectively). 97 Emotionally Unstable Personality Disorder (Borderline Personality Disorder) is the most prevalent of all personality disorders for those admitted to hospital (Figure 14), 6.5 times more prevalent than any other, but slightly below national evidence (75% of admissions). Figure 14: Hospital admissions for specific personality disorders in East Sussex 2010/11 to 2012/13 * Numbers under 5 have been suppressed Source: SUS data, 2013 Borderline personality disorder (66.5%), Paranoid personality disorder (64.2%), Dissocial personality disorder (63.2% and Histrionic personality disorder (66.7%) are more likely to have personality disorder as primary diagnosis for admission than secondary or other diagnosis (Figure 15). However, numbers that this assertion is based on are small for dissocial personality disorder and histrionic personality disorder. 97 Commissioning Support Unit (2013) Secondary Uses data 30

31 Figure 15: Primary and Secondary admissions for specific personality disorders in East Sussex 2010/11 to 2012/13 Source: SUS data, 2013 Between 2010/11 and 2012/13, four times as many females with borderline personality disorder as a primary or secondary diagnosis have been admitted to hospital than males (440 and 104 respectively). This is in line with national trends which indicate that 78% of admissions of people with borderline personality disorder are female. Figure 16 shows that this trend is continued across all age groups, with the exception of year olds where 83% of admissions between 2010/11 and 2012/13 were male. However, numbers for some ages are very small and should be treated with some caution. Admissions for females aged is 5.8 times that of males. This is greater than the 4.5 times difference suggested by prevalence estimates for those aged Figure 16: Hospital admissions for Emotionally Unstable Personality Disorder (Borderline Personality Disorder) in East Sussex 2010/11 to 2012/13 by gender Source: SUS data, 2013 For both females and males, for two thirds of admissions of people with emotionally unstable personality disorder (borderline personality disorder), the disorder is the primary diagnosis for admission. 31

32 3.6. Services that include provision for personality disorder Given the high rates of presentation to acute services, Consultants have developed an approach to enable planned admissions of short duration for those presenting with BPD and risk-taking behaviours. Services providing support for people with personality disorder across East Sussex, including borderline personality disorder include: Amberstone hospital provides active rehabilitation for service users with enduring mental health conditions as part of their recovery journey. Assessment and Treatment Services (ATS) provide assessment and treatment for adults within secondary mental health services. People with more complex needs and requiring care coordination will receive input via the recovery and wellbeing team that sits within this service. The multi-disciplinary team provides services to people with a range of both functional and organic conditions. There are three teams: o Eastbourne, Hailsham and Seaford ATS and assertive outreach team - West (St Mary s House, Eastbourne) o Hastings and Rother ATS and assertive outreach team - East (Cavendish House, Hastings) o High Weald, Lewes and Havens ATS (Hill Rise, Newhaven and satellites across the patch in Uckfield, Crowborough and Lewes) Bramble lodge provides active rehabilitation for male service users with enduring mental health conditions as part of their recovery journey. Department of Psychology (Eastbourne) provides in-patient acute beds for a variety of mental health conditions. The Crisis Resolution Home Treatment Team is based on site and gate-keeps all admissions as well as providing urgent triage for referrals into the service and home treatment to a caseload of acutely unwell service users in their own home. Early Intervention in Psychosis provides a specialist early intervention assessment and treatment service to people aged 14 to 35 suspected of developing a first psychotic illness. Because of the complex presentation, care is coordinated using a Care Programme Approach (CPA) and a named Care Co-ordinator. Referrals are taken from primary and secondary care. People are referred to the ATS when appropriate. Services are available across multiple sites in East Sussex. Liaison psychiatry is provided at both general hospital sites in East Sussex (Conquest Hospital, Hastings and Eastbourne District General Hospital) providing urgent assessment in the emergency department and input to all areas regarding mental health assessment and advice. Woodlands Centre for Acute Care (Hastings) provides in-patient acute beds for a variety of mental health conditions. The Crisis Resolution Home Treatment Team is based on site and gate-keeps all admissions as well as providing urgent triage for referrals into the service and home treatment to a caseload of acutely unwell service users in their own home. Sussex Partnership provides a range of service to support people with personality disorder including STEPPS, a skills training programme developed for people who have features of Borderline Personality Disorder or Emotional Intensity Disorder which uses the techniques of cognitive behavioural therapy. Through STEPPS people with a diagnosis of personality disorder can learn how to manage their own mental wellbeing. Currently there are two 32

33 facilities, the Lighthouse in Brighton and Hove, and Bluebell House in West Sussex set up using the STEPPS approach. There is no equivalent service in East Sussex Sussex Care Pathway - Personality Disorders: The Sussex Partnership NHS Foundation Trust (SPT) personality disorders care pathway provides the detail of clinical services and recommended resources and information for Primary Care PD Tier 1, Secondary Care PD Tier 2, Specialist Care Tier 3, and Specialist inpatient Services PD Tier 4. The pathway is designed to meet the health and social needs of people with a suspected or diagnosed personality disorder and is for adults of all ages. The decision to localise was taken in order to reflect best evidence, including expert opinion, and local commissioning arrangements. The following care map has been locally developed for use in Sussex (Figure 17) Figure 17: Personality Disorders Care Pathway for Personality Disorder in Sussex Source: Map of Medicine, accessed August

34 4. Future need Local population projections (Figure 18) suggest that by 2027 the population of East Sussex will increase by approximately 4% from 531,200 to 553,300, equating to a 5.6% increase in males and 2.8% increase in females in the county. However, the 0 to 24 year old population is projected to decrease by 5.7% from 143,200 to 135,000. The 40 to 54 cohort is also expected to decrease by 4.5% by Conversely, the population aged 30 to 39 will increase across the county with the exception of Eastbourne (-1.2%) and Hastings (-0.8%). The 55+ population is projected to increase by 6.8%, the greatest increases expected in Eastbourne (7.4%). 66 Figure 18: East Sussex population pyramid 2012 mid-year estimate and 2027 projections % 5% 0% 5% 10% East Sussex 2012 Males East Sussex 2027 Males East Sussex 2012 Females East Sussex 2027 Females Source: ONS, 2013 In order to predict the future demand for services it is important to understand the population projections for East Sussex. As shown in the three graphs below, while there is an expected decrease in males (-1.6%) and females (-6.6%) aged 15-34, and in males (-14.1%) and females (-14.0%) aged 35-54, there is an expected increase in population size over the next 15 years in the age-group with the highest prevalence of borderline personality disorder (55-74 years) in men (+13.6%). While there is no national data on prevalence of BPD for women in this age group, the female population in general is also expected to increase by 12.5% by 2027 which will impact on service provision. 34

35 Figure 19: East Sussex population projections Male and Females age 15-34, Source: ONS, 2013 Figure 20: East Sussex population projections Male and Females age 35-54, Source: ONS, 2013 Figure 21: East Sussex population projections Male and Females age 55-74, Source: ONS, 2013 Projecting adult needs and service information system (PANSI) The Department of Health Projecting Adult Needs and Service Information System (PANSI) looks at how demography and certain conditions can impact on populations aged 18 to 64 years. Figure 22 shows the predicted change in population of adults with BPD between 2012 and

36 Figure 22: Estimated prevalence of BPD in East Sussex by district/borough 2012 to 2020 NB: This table is based on the report Adult psychiatric morbidity in England, The prevalence rates have been applied to ONS population projections for the population to give estimated numbers predicted to have a mental health problem, projected to Source: PANSI, accessed November 2013 Between 2012 and 2020 there is expected to be a minor increase in the population of adults with borderline personality disorder in East Sussex (just under 1%) with the greatest increase expected in Lewes, while Wealden is the only area where the population is expected to decline (Figure 22). In comparison to our statistical neighbours the predicted increase in people with borderline personality disorder in East Sussex is much smaller than in areas such as North Somerset, Kent and West Sussex, whereas Shropshire, Worcestershire and Dorset are expected to see a drop in people with BPD by 2020 (Table 7). Table 7: Estimated prevalence of borderline personality disorder in adults (aged 16 64) compared to our statistical neighbours East Sussex 1,361 1,374 Shropshire West Sussex 2,157 2,243 Worcestershire 1,529 1,499 Kent 3,976 4,166 Gloucestershire 1,637 1,650 Devon 1,967 1,958 Essex 3,808 3,954 North Somerset Dorset 1,031 1,006 Suffolk 1,933 1,944 NB: This table is based on the report Adult psychiatric morbidity in England, The prevalence rates have been applied to ONS population projections for the population to give estimated numbers (rounded to the nearest 10) predicted to have a mental health problem, projected to Source: PANSI, accessed November

37 5. Service provision in other areas WEST SUSSEX In West Sussex Bluebell House provides a specialist day service to those diagnosed with PD (BPD in particular) and who can benefit from intensive support over a period of about 12 months. Bluebell House is a Tier 3-4 service and therefore referrals come from community based mental health teams/in-patient wards. The service cannot be directly accessed other than through the secondary care route. People using the service will typically have suffered a history of abuse, rejection and neglect and the therapeutic programme consists of a range of interventions, varying from intensive psychological therapies, arts therapies and occupational therapy, to general support and activity groups, both at the centre and in the community. The centre is staffed by NHS Professionals and volunteers who have previously used the service. A crisis support service is not currently operated in West Sussex. To ensure the service developed to effectively meet need it was important to ensure services were geographically accessible and making sure clear communication channels existed across the multiple teams and three inpatient units involved. In community based teams (Assessment and Treatment Service) there are a number of practitioners who have a particular expertise in working with those with PD although this isn t in every team. There is also some limited psychology input that can be accessed. Services in West Sussex include: Adur, Arun and Worthing: Day hospital - full rollout of STEPPS / STAIRWAYS and a mentalization stream. Limited capacity for one to one therapy. Chichester: Regular STEPPS/STAIRWAYS stream, and schema focused / mentalization interventions. Limited capacity for one to one therapy Crawley: Regular STEPPS/STAIRWAYS. Limited capacity for one to one therapy Horsham and Mid Sussex: Regular STEPPS/STAIRWAYS. Limited capacity for one to one therapy Anybody needing specialist in-patient support goes through the specialist funding panel route and once approved will go to a placement funded by NHS England. BRIGHTON AND HOVE The Lighthouse Recovery Support Project opened in April 2013 and is a Personality Disorder service covering PD Tiers 1-3. Lighthouse offers an intensive programme of therapies at specialist level, including STEPPS, STAIRWAYS, other psychological therapies, occupational therapy (OT) and art groups. It incorporates a fully integrated programme between Sussex Partnership Trust and third sector partners Sussex Oakleaf and Mind and so is supported intensively by a community programme, including activities, skills development, social inclusion and vocational recovery work and is open seven days a week, with extended hours on some days. The service launched with an initial cohort of 20 patients ('members') referred from Brighton Recovery teams and Mill View Hospital and from October 2013 includes a community support programme to individuals in the assessment and treatment services. The Lighthouse Project aims to provide a meaningful alternative to hospital admission, A&E attendance and reliance on GP and other services, and members will play a large part in running the service. The pathway model for the Lighthouse service is designed so: o Tier 1 can access community programmes and support 37

38 o Tier 2 are supported by the community teams but can access STEPPS within these teams and can use Lighthouse as a drop in service o Tier 3 can access the whole programme of therapies both within the Lighthouse and in the community. Initial findings suggest that a degree of flexibility might be beneficial within the model as the behaviours of people at Tier 3 can be too chaotic to effectively access the therapy programme and additional stabilising within the community could be beneficial, some people at Tier 2 are eager to have therapy but can t access it, and additional input for those at Tier 1 could prevent their behaviours from escalating further. STEPPS groups are now also being piloted within Wellbeing services in Brighton (an early intervention package), as well as groups for adolescents and their parents. KENT AND MEDWAY The Kent and Medway Personality Disorder Service follows NICE recommendations of evidence based psychological interventions centred on an individual s interpersonal experience, as part of a coherent and well managed longer-term care package. In keeping with this approach a psycho-social therapeutic community programme has been developed placing emphasis on exploring the developing relationships between service users and staff over an extended year long therapy programme. Treatment for people diagnosed as having borderline or severe personality disorder with complex emotional needs is provided through the Brenchley Unit Therapeutic Community in Maidstone (West Kent) and Ash Eton Therapeutic Community based in Folkstone (East Kent): Ash Eton Therapeutic Community These facilities offer a psycho-social therapeutic community over an extended year long therapy programme for up to 24 people at one time, with an emphasis is on supporting service users to better recognise and manage the feelings generated within themselves by others. Services include a four week introductory group to help orientation, daily community meetings, a talking therapy group for up to 8 people at a time, art therapy, a writing group, studio time where all members including staff spend time together doing activities, and a leavers group which can be attended for up to a year following completion of the programme. Brenchley Unit Therapeutic Community This unit offers a three-day-a-week therapeutic community over 12 months for people diagnosed with a Severe or Borderline Personality Disorder comprising of up to 24 members and five therapists. The Brenchley programme also offers intensive group psychotherapeutic treatment which takes place in set groups, including the full community group, small therapy groups, art therapy and activity groups. There are several elements to the Brenchley community including: a weekly outreach programme offering up to 2 years of psychotherapy; a Preparatory group over 4 weeks for those assessed as suitable for the therapeutic community; a community therapy treatment programme; a therapeutic community for those with longstanding psychological and emotional problems and a history of multiple service use who are able to sustain a relationship, and contribute to the running and development of the programme. There is no individual therapy or key working within the community and integral to all treatment is linking with other professionals. Service user s testimonials and evidence based 38

39 monitoring and evaluation research projects indicate a reduction in Accident and Emergency services, inpatient admissions and use of prescribed drugs as a result of involvement with the therapy programme. ESSEX A noted model of Tier 3 best practice is the Haven in Colchester, Essex which is a large house run by a 3rd sector organisation, from which low level information, advice and support is provided along with a telephone helpline for those known to services in distress, and respite care. This facility also accommodates local Trust provision of structured day programmes by specialist staff including nurses, psychological and occupational therapists, using evidence based approaches such as STEPPS and STAIRWAYS. Over a one year period this service is reported to have worked with 110 registered clients with BPD and significantly reduced in-patient admissions as well as demands for a wide range of associated services including police, A&E, and non-specialist community mental health services. 39

40 6. Service user, carer and provider voice The Quality, Innovation, Productivity and Prevention (QIPP) Programme aims to improve the quality and delivery of NHS care while reducing costs. A service review that was completed as part of the East Sussex QIPP programme has recommended that there should be a review of the impact of Borderline Personality Disorder (BPD) on existing services, with consideration of how services could be significantly improved within existing resources. There is a lack of information on personality disorder in general from a service user or provider perspective. This section of the needs assessment draws upon existing international, national and local research to build a picture of the views of service users, carers and service providers on specialised personality disorder (PD) services. Highlighting the opinions of these people who have experience of these services is a valuable tool in the prioritisation and shaping of the development of future specialist services. This in itself may help encourage the successful engagement of a population of service users that have been traditionally difficult to engage in treatment services. Below is a summary of the main themes and outcomes: The importance of specialist PD services Many patients with a diagnosis of BPD will have been known to mental health services for some time, and so are well-placed to offer opinions as to the effectiveness of different types of services and interventions for the management of their problems. One area of interest in particular for East Sussex is the provision of specialist PD services (as opposed to general community mental health teams and psychiatric services), as at present there are no specialist services in the local area. Qualitative research indicates that people who have accessed non-specialist personality disorders report a perceived stigma concerning patients with PD diagnoses and a lack of informed staff concerning personality disorders. 98 This finding has been supported by research looking at experiences of staff working with people with borderline personality disorder (BPD) in non-specialist services, which identified a tendency for staff to have generalised negative opinions of people with BPD, specifically relating it to manipulation and bad behaviour. 99 Patients have been found to feel more accepted and to be more positively engaged when in contact with specialist personality disorder services. 100 However, accessing specialist services when needed can be problematic, particularly if a person is experiencing a crisis outside of normal working hours, which can result in people presenting to mental health services via the police and emergency services. 101 One research study suggests that the ability to selfrefer might help prevent such crisis episodes. 102 Services users have suggested an ideal personality disorder service would advocate a humane and caring response to service users, an out-of-hours service and safe house, an advocate service and a telephone helpline. 103, I think we re all guinea pigs really : a qualitative study of medication and borderline personality disorder. Rogers, B. & Acton, T. Journal of Psychiatric and Mental Health Nursing, 19: (2012). 99 A Qualitative Investigation of the Clinician Experience of Working with Borderline Personality Disorder. Treloar, A.J. New Zealand Journal of Psychology, 38(2), 30-34, (2009). 100 I think we re all guinea pigs really : a qualitative study of medication and borderline personality disorder. Rogers, B. & Acton, T. Journal of Psychiatric and Mental Health Nursing, 19: (2012). 101 Borderline Personality Disorder: Treatment and Management. The British Psychological Society and Royal College of Psychiatrists. (2009) 102 Services for people with personality disorder: The thoughts of service users. Haigh, R. (2002). 103 Experiencing personality disorder: a participative research. Ramon, S., Castillo, H. & Morant, N. International Journal of Social Psychiatry, 47, 1-15 (2001). 40

41 Research has identified psychotherapy as a particularly valued aspect of specialist personality disorder services. While complex and challenging, psychotherapy is perceived to enable the most significant changes and outcomes. In particular Dialectic Behaviour Therapy (DBT) is useful for improving coping skills 105 and helping service users view personality disorder as a controllable part of themselves rather than something that controls them. 106 Group therapy is also valued by providing shared identity, social networking, and provision of clear, written information about new services as they develop. 107 Service user views on goals of treatment Research into the views of service users with a diagnosis of Borderline personality disorder in East London identified that when engaging with a specialist service, people had a number of aims to fulfil, including: learning to accept themselves and build self-confidence; taking control of their moods, emotions and negative thinking; improving relationships by building trust and allowing vulnerability in close relationships; reducing self-harming behaviours and suicidal thinking; working on practical achievements and finding employment. 108 However, studies suggest that sometimes the aims that service users would like to achieve when engaging with services did not meet the aims of the service. In this sense some services were seen as being too rigid and narrow in focus, for example by concentrating on just one issue instead of looking also at others that were of equal importance to the service user. 93 Both service users and carers of service users identified that services generally need to take a more holistic view of the patient, their family and their home environment. 109,110 Varied views on achieving recovery Service users differed in their views as to whether they had made progress following engagement with a specialist service, with a range of responses from having made no progress at all, to classifying themselves as recovered. The use of the term recovered proves problematic for some service users as personality disorder is not perceived to be something that can be cured and so the use of the term recovered doesn t adequately reflect the ongoing process of learning to cope with problems and developing a meaningful life within the limitations of the disorder. Overall, a fluctuating progress was commonly described, with people having made some progress towards their goals, but still living with their BPD and the daily difficulties it can bring. 111 Local qualitative research studies STEPPS West Sussex Systems Training for Emotional Predictability and Problem Solving (STEPPS) is a group 104 Learning the Lessons: a Multi-Method Evaluation of Dedicated Community-Based Services For People with Personality Disorder. Crawford, M., Rutter, D., Price, K. et al. (2007). London: National Co-ordinating Centre for NHS Service Delivery and Organisation 105 Learning the Lessons: a Multi-Method Evaluation of Dedicated Community-Based Services For People with Personality Disorder. Crawford, M., Rutter, D., Price, K. et al. (2007). London: National Co-ordinating Centre for NHS Service Delivery and Organisation. 106 It s about me solving my problem: clients assessments of dialectical behaviour therapy. Cunningham, K., Wolbert, R. & Lillie, B. Cognitive and Behavioural Practice, 11, (2004). 107 Learning the Lessons: a Multi-Method Evaluation of Dedicated Community-Based Services For People with Personality Disorder. Crawford, M., Rutter, D., Price, K. et al. (2007). London: National Co-ordinating Centre for NHS Service Delivery and Organisation. 108 Borderline Personality Disorder: A Qualitative Study of Service Users Perspectives. Katsakou, C., Marougka, S., Barnicot, K., Savill, M., White, H., Lockwood, K. & Priebe, S. PLoS ONE 7(5): e36517 (May 2012). Available from: A Life Tiptoeing: Being a Significant Other to Persons with Borderline Personality Disorder. Ekdahl, S., Idvall, E., Samuelsson, M. & Perseius, K. Archives of Psychiatric Nursing, 25(6), (2011). 110 Learning the Lessons: a Multi-Method Evaluation of Dedicated Community-Based Services For People with Personality Disorder. Crawford, M., Rutter, D., Price, K. et al. (2007). London: National Co-ordinating Centre for NHS Service Delivery and Organisation. 111 Borderline Personality Disorder: A Qualitative Study of Service Users Perspectives. Katsakou, C., Marougka, S., Barnicot, K., Savill, M., White, H., Lockwood, K. & Priebe, S. PLoS ONE 7(5): e36517 (May 2012). Available from: 41

42 treatment program piloted by Sussex Partnership NHS Trust by adding it into existing care pathways. STEPPS combines cognitive-behavioural elements and skills training, with good evidence of efficacy internationally, and overwhelmingly positive feedback from those completing the programme to date regarding improved self-awareness, confidence and coping strategies. 112 Conclusion Whilst qualitative information regarding borderline personality disorder is limited, the studies outlined above show that: Specialist services and knowledge are perceived to foster greater engagement and as such achieve more positive outcomes A more holistic approach to personality disorder services would be beneficial. Effective support is more likely when the goals of services and service users are aligned Written information on a services is highly valued 112 Harvey R, Black DW, Blum N (2010). Systems Training for Emotional Predictability and Problem Solving (STEPPS) in the United Kingdom: A preliminary report. Journal of Contemporary Psychotherapy, 40:

43 7. Evidence of Effectiveness and Best Practice Access to services People with borderline personality disorder should never be excluded from services because of their diagnosis or history of self-harm. Those with BPD from minority ethnic groups should have equal access to culturally appropriate services and if language is a barrier the access or engagement then information and intervention should be accessible in their preferred language, involving an interpreter if necessary. 113 Evidence of Personal Experience of Care The 2009 NICE guidance on treatment and management of people with BPD outlined national evidence of personal experiences of BPD which highlighted that: Borderline Personality Disorder can be extremely debilitating due to difficulties controlling mood, feelings, emotions, relationships and communication, which can in turn lead to coping mechanisms such as self-harm. Assessment of BPD must recognise that mechanisms such as self-harm are usually indicative of internal emotions. People with Borderline Personality Disorder report feelings of rejection on assessment for services due to the traumatic focus on past experiences this entails which makes engagement more difficult. Clear explanations about the process and information about the service is highly valued. Diagnosis can prove positive in the sense of providing control and a degree of legitimacy about the experience, but can also prove negative as it can be associated with feelings of loss of hope and reports of denial of services due to diagnosis. Healthcare professionals need to be aware of stigma surrounding BPD and be sensitive to the potential impact of diagnosis Specialist services were felt to be most effective, particularly in behaviour change, as was early intervention. People felt that when in crisis an out of hour s crisis service was needed. The literature shows that there are not enough services for people with personality disorder and healthcare professionals need to establish a collaborative partnership with the service user that is non-judgemental, supportive, caring and positive. Working with service users to explore potential crises triggers and management strategies is useful as part of a care plan including crisis advice. People reported a post-therapeutic dip when leaving residential support services as they adjusted to independent living. While complex and challenging, psychotherapy was seen as helpful and positive, with some preferring the opportunity to share experiences in groups, and some preferring individual therapy. Treatments can differ for individuals and client choice is crucial. Leaving treatment can be difficult for people with borderline personality disorder and can evoke strong emotions of rejection. A more structured approach to endings is needed along with information about support groups and self-management techniques. There is little support for families and carers, with the impact of borderline personality disorder leading to high scoring on scales measuring burden and depression. Many families and carers feel excluded from the service user s 113 National Institute for Health and Clinical Evidence (2009) Borderline personality disorder: treatment and management. NICE Clinical Guidance 78, developed by the National Collaborating Centre for Mental Health. 43

44 treatment. Collaborating with families/carers (when the service user is in agreement) and supporting them could provide a valuable resource for the person with borderline personality disorder. Five key clinical practice recommendations emerge from these findings: No-one with BPD should be excluded from services due to diagnosis or history of selfharm. An optimistic and trusting relationship needs to be developed with the service user Family and carers should be involved with the consent of the person with BPD Assessments should involve clear explanation of the process of assessment and of the diagnosis in non-technical language, and should offer post-assessment support. Difficulties with endings and transitions should be effectively managed 114 Role of Pharmacological Treatment Research and available evidence on the effectiveness of individual drugs is limited but there is some evidence that pharmacological treatments can help reduce specific symptoms experienced by some people with borderline personality disorder including anger, anxiety, depressive symptoms, hostility and impulsivity. However, there is no evidence that the fundamental nature of borderline personality disorder is altered in the short or the long term. Therefore drug treatment should not be used specifically for borderline personality disorder or behaviour associated with the disorder, nor should antipsychotic drugs be used for these reasons. Drug treatment may be considered in the overall treatment of co-morbid conditions. Further research is needed into the effectiveness of pharmacological treatments for borderline personality disorder. 79 Recent evidence from the Prescribing Observatory for Mental Health UK Quality Improvement Programmes (POMH-UK QIP) looking at prescribing for personality disorder highlighted the huge discrepancy between national guidance recommendations and clinical practice. A national baseline audit of over 2,500 patients in 2012 found that, in opposition to NICE guidance: 4 out of 5 patients were prescribed at least one medication from four drug groups: antipsychotics, antidepressants, mood stabilisers and sedatives. Just over half of patients with PD and no co-morbid mental illness were prescribed at least one antipsychotic, and the majority of prescriptions were of at least 6-month duration. Benzodiazepines were prescribed in a third of patients without co-morbid psychotic illness. Two-thirds of patients had a written crisis plan which was accessible in the clinical records. Only two-fifths of these crisis plans mentioned medication, and in just over a quarter there was no evidence that the patient had been involved in its development. 115 Role of Psychological Treatment The 2009 NICE guidance on treatment and management of people with BPD recommends that psychological treatment for people with BPD should use an explicit and integrated approach with the treatment team, therapist and service user, structured care, provision for therapist supervision, and a frequency of service adapted to the person s needs. Dialectal 114 National Institute for Health and Clinical Evidence (2009) Borderline personality disorder: treatment and management. NICE Clinical Guidance 78, developed by the National Collaborating Centre for Mental Health. 115 Prescribing Observatory for Mental Health UK (Nov 2012) Prescribing for people with borderline personality disorder (PD) 44

45 behaviour therapy should be considered in cases of self-harm. It is also important to develop an agreed set of outcome measures to assess interventions, including analysis of quality of life, function and symptoms. 79 Management of crises A characteristic of many people with BPD is that they can often present in crisis, and as a result they can be regular users of psychiatric and acute hospital emergency services. Medication is commonly started when a patient presents in crisis although there is no evidence for the effectiveness of this. For this reason, medication use should be limited and always considered in the context of a longer-term treatment plan involving psychological and/or social intervention. The patient s capacity to consent in a time of crisis should always be considered. Currently, people with BPD may present to a range of services and carers may or may not be involved in this. Crisis teams within mental health services may be involved if immediate support and assessment of risk is needed. A crisis plan should always be consulted and clinical practitioners should: remain calm and unthreatening whilst trying to understand the crisis from the persons viewpoint; use empathetic open questioning to explore the reason for distress and identify the onset and course of current problems; stimulate reflection about solutions without minimising the stated reasons for the crisis and without offering solutions before full clarification of the problems; explore other options before considering admission to a crisis unit/inpatient admission; and offer appropriate follow up with an agreed timetable with the person. If short term drug treatment is considered necessary risks must be evaluated and consensus reached amongst all involved. The drug should never be used in place of more appropriate intervention and should be used for no longer than one week on the minimum. Once the crisis has been resolved or subsided the crisis plan and overall care plan should be updated as soon as possible to reflect current concerns and treatment strategies. 79 Service configuration and organisation In 2003 the Department of Health outlined the problems faced by many people with personality disorder who try to access appropriate primary or secondary care services. As a result of this standards have been set for service delivery and mental health trusts in England now have responsibility to meet the needs of those with personality disorder using local expertise, suitable skills and multi-agency working. Research on service configuration and organisation suggests that the complexity of personality disorder requires more than one type of intervention to be offered by most services. Patient choice and active participation should be encouraged; there should be a coherent model for understanding personality disorder, clear communication which values the person within the service, and services for those in crisis. 116 The role of inpatient services People with Borderline Personality Disorder have been shown to be high users of inpatient services, 117 yet the effectiveness of this as an intervention is uncertain as there is a paucity of evidence on the impact of inpatient care on borderline personality disorder. To date, literature on inpatient treatment for personality disorder is based largely on expert opinion, with a general consensus that long admissions in standard psychiatric inpatient units are 116 Crawford, T. N., Price, K., Rutter, D., et al. (2008) Dedicated community-based services for adults with personality disorder: Delphi study. The British Journal of Psychiatry, 193, Bender, D. S., Dolan, R. T., Skodol, A. E., et al. (2001) Treatment utilization by patients with personality disorders. American Journal of Psychiatry, 158,

46 unlikely to be helpful, 118 and as such, if such treatments are needed they should be short term and focussed on crisis management. 119 The scant evidence suggests that the most effective treatment of borderline personality disorder occurs at outpatient settings. The Nice guidance uncovered no evidence answering clinical questions about the role of specialist services. 80 The Care Pathway NICE guidance outlines principles that should be applied in the development of a care pathway for those with borderline personality disorder as the development of a care pathway would ensure resources are used effectively and services are suited to need. Key recommendations include: 1. Mental health trusts should develop multidisciplinary specialist teams/services for PD that: a) Are responsible for the routine assessment, treatment and management of people with BPD, including diagnosis when general psychiatric services are in doubt b) Provide consultation and advice to primary and secondary care services and training programmes on the diagnosis and management of BPD c) Provide and/or advise on social and psychological interventions d) Work with CAMHS teams to govern transition into adult services e) Develop clear communication with primary and secondary care including the establishment of information sharing protocols among different services (including in the forensic setting) f) Are involved in development of new treatments for people with BPD nationally and locally 2. Service user needs and preferences should be considered when developing the multidisciplinary treatment and care programme. Promoting choice, developing a trusting relationship between patients and those working with them, and planned endings and transition are key to care plans. 3. Psychological treatment services should have an explicit and integrated theoretical approach with provision of therapist supervision. Brief interventions (less than 3 months) should not be used specifically for BPD 118 Bateman, A. W. & Tyrer, P. (2004) Services for personality disorder: organisation for inclusion. Advances in Psychiatric Treatment, 10, Fagin, L. (2004) Management of personality disorders in acute in-patient settings. Part 1: borderline personality disorders. Advances in Psychiatric Treatment, 10,

47 8. Conclusions PERSONALITY DISORDER NATIONALLY National prevalence estimates for borderline personality disorder (BPD) are % of the population aged 16 and over. Women aged are around 4.5 times more likely (1.4%) than men aged (0.3%)to have BPD Three quarters of all hospital admitted personality disorder diagnoses are for BPD. 78% of all in-patient personality disorder cases in the UK are diagnosed in women. Life expectancy for those with personality disorder is significantly shorter than the general population National evidence shows there is a paucity of service provision for people with personality disorder PERSONALITY DISORDER LOCALLY There are currently an estimated 1,900 adults aged 16+ with BPD in East Sussex We would expect to see approximately 1,350 females and 550 males with BPD locally. In comparison to our ten nearest statistical neighbours East Sussex has the third greatest rise in estimated BPD since 2003 (8.3%) The number of men with BPD who are on remand at Lewes prison is estimated to have increased by 3.5% over the last 5 years Over one third of the prison population for whom there are records reside in East Sussex, indicating that the prevalence of BPD within prison will impact on service demand upon release. Since 2010/11 there have been 998 hospital admissions for 479 people with disorders of adult personality and behaviour, representing a 53% increase over the last three years. Since 2010/11 there have been a lower number of admissions for year olds than expected, and a greater number of admissions for year olds Over the last year, hospital admissions for males who have personality disorder has increased out of line with national rates Across all trusts admissions are three times more likely to be non-elective (emergency) than elective. BPD is the most prevalent of all personality disorders for those admitted to hospital (6.5 times more prevalent than any other type). In line with nationally, women admitted to hospital are 4x more likely than men to have BPD There is clear association between hospital admissions of people with PD and deprivation By 2020 the age group with the highest prevalence for BPD in males (55-74 years) is expected to increase by 13.6%, and for women an increase of 12.5% is expected. The overall population of adults with BPD is expected to increase by 1% by

48 GAPS IN SERVICE PROVISION A 2007 needs assessment on adult health across Sussex found specialist services for PD to be underdeveloped and recommended these should be developed. West Sussex and Brighton and Hove have developed these services but this has yet to be developed in East Sussex. There is a paucity of community provision in East Sussex for personality disorder in East Sussex in comparison to similar areas. Due to the numbers of people who are estimated to have PD in the county, both in the general and criminal justice populations, there is likely to be a significant unmet need currently. There is no specialist crisis service for people with BPD in East Sussex. INFORMATION NOT CURRENTLY AVAILABLE Similarly to mental illnesses there is no direct medical test to diagnose personality disorder and difficulties diagnosing are compounded by the amount of information needed on personal history in order to assess personality traits. There are a very high number of unknown admissions types from Sussex Partnership NHS Foundation Trust (SPFT) indicating that there is a need for improved recording methods. Information on those who have been discharged from hospital and community provision for most frequent users is currently being collated. 48

49 9. Recommendations SERVICE RECOMMENDATIONS: RECOMMENDATIONS It is recommended that preventative interventions are needed, particularly to address the relationship between high incidence of personality disorder and those within the criminal justice system. Early interventions that address emotional intensity should be specifically targeted towards young people entering the criminal justice system and first presenters to primary care. It is recommended that a community personality disorders service should be developed as part of a holistic, whole-system approach. The service should provide a range of therapeutic activities which are available to members, aligned to assessed need. The STEPPS programme should form a part of this alongside a community programme of activities and support. The service should provide mentoring and/or volunteering opportunities for people with lived experience of borderline personality disorder. This approach should be patient centred and where possible involve the individual s wider network of support. It is recommended that crisis services could be improved by: o Developing the mental health crisis service to be more inclusive of the specific needs of people who have personality disorder, including signposting to IRIS and community personality disorder services where appropriate. o Investigating appropriate space for a small number of crisis or respite beds. TECHNICAL RECOMMENDATIONS: It is recommended that data collection of information regarding adults with personality disorders, and borderline personality disorder in particular, is improved in the following ways: o A joint approach between health, social care, police, criminal justice system, voluntary sector and service users is further developed. o There is agreement across services on the specific traits indicating borderline personality disorder and how this is systematically coded. o There is regular collation of the feedback from service users regarding outcomes to better inform policy and practice across mental health and community services. It is recommended training is needed locally to enhance knowledge and skills of those supporting people with borderline personality disorder. RECOMMENDATIONS FOR FURTHER INVESTIGATION BY COMMISSIONERS: It is recommended further research is needed on the impact borderline personality disorder has on the health and wellbeing of people in East Sussex, particularly with regards to known risks such as substance misuse and risk of self-harm. It is recommended, in line with NICE guidance, there is further investigation into the amount of drug treatment being prescribed for BPD by GPs or Mental Health Services It is recommended further information is needed into the reasons for high repeat hospital admissions for people with personality disorders. It is recommended Information on those who have been discharged from hospital and community provision for most frequent users that is currently being collated should further inform this needs assessment. 49