Living with Borderline Personality Disorder: The experience of people with the diagnosis, families and services in Scotland (November 2018). You can download the full document here.
You don’t feel so alone and you realise ‘it’s not just me’. You feel like you belong and that you’re not an outcast anymore. You’re not alone anymore.
This is the first time the Mental Welfare Commission (the Commission) has looked specifically at the care, treatment and support of people with borderline personality disorder (BPD), often also known as emotionally unstable personality disorder (EUPD).
It is estimated that around one in 100 people in the general population have BPD. It is one of the most common types of personality disorder and is often described as a condition defined by an ongoing pattern of varying moods, self-image, and behaviour.
We wanted to find out about the experiences of people with the diagnosis, the views of families/carers, and of professionals involved in delivering care. We consulted with people across Scotland to gather their views and initially met with around 50 people with BPD to help us to decide what we should focus on.
We then went on to have further contact with over 70 people with BPD, and with family/carers on an individual basis. Thirty five people with BPD spoke to us in focus groups.
Online surveys were completed by 119 general practitioners (GPs), 110 Accident and Emergency (A&E) department staff and 84 consultant psychiatrists from across Scotland. Staff delivering therapies completed detailed questionnaires.
Many of the testimonies we received suggested deficits in current provision for people with BPD, in addition to stigma and often negative associations with the condition.
We present a picture of people’s varying experiences in being given this diagnosis, the therapies and supports that differ widely across Scotland and the challenges in being supported either in crisis, or when trying to stay well.
This report also shows what can be achieved when people with BPD have access to effective therapy, support and understanding.
The Royal College of Psychiatrists in their recent report ‘Personality Disorder in Scotland: Raising awareness, raising expectations, raising hope’2, describe the current provision of mental health services for people with a diagnosis of personality disorder in Scotland and a consensus view on good practice for services.
Our report focuses on the experience of people living with the diagnosis and the views of medical professionals.
Assessment and diagnosis
People’s experiences of receiving their diagnosis were varied. Whilst we heard of positive experiences, many spoke of feeling let down in this aspect of their care. Often there were delays in receiving a diagnosis, it was not given in a sensitive way and there was a lack of follow-up information about the diagnosis and what this meant for the individual. Some people only found out about their diagnosis by chance.
Psychological therapies were highly valued by people we consulted with. Mindfulness, cognitive behavioural therapy (CBT) and dialectical behavioural therapy (DBT) were among the most common that people received, and most people told us they had been helpful.
Access to therapies and waiting times varied across the country. Psychiatrists and GPs told us that better access to evidence-based psychological therapies for people with BPD would improve the care and treatment of their patients.
Although no drug is specifically licensed for the treatment of BPD, a high number of people reported that they found medication to be helpful, particularly in managing anxiety.
Support and staying well
People found GPs, community psychiatric nurses (CPNs) and psychiatrists helped them manage their condition. Although good professional support was vital to staying well, achieving goals required a wider network of resources. Specialist resources remain scarce, and general mental health services were often reported as difficult to access and inconsistently available. General practitioners often found it difficult to access mental health service support for their patients locally.
What people with BPD told us helps them stay well, and what services and professional staff thought about this, often differed. Self-management and peer support, including peer-run support groups do exist, but are not always easily available.
People with BPD perceived different approaches to them when they were in crisis compared to people with other mental health problems and these approaches were not always helpful.
Few people had crisis plans in place. The police and other emergency services could find it hard to access appropriate help for people with BPD in crisis. Many people with BPD reported a negative experience of using A&E services; A&E staff shared their view that these departments were not well placed to meet their needs.
Staff reported that a lack of information sharing across services caused difficulties when people presented in crisis.
Stigma is a reality in the life of people with BPD and its effect on people can be dramatic. It affects confidence and self-esteem, and stigma was the most commonly reported trigger for crisis.
Perceived stigma from professional staff left some with difficulties in maintaining and developing relationships, and in participating in treatment. People with BPD reported that they were often treated with less sympathy and understanding than people with other mental health problems.
Family/carers said that, at times, the emotional impact of caring for individuals with BPD could be high, including feeling overwhelmed or powerless. They also faced particular challenges in gaining information, particularly in times of crisis.
Scottish Government should
- Through the work of the Health and Justice Collaboration Improvement Board, and the development of Action 15 of the Mental Health Strategy, ensure an integrated service response to improve access and outcomes for people with BPD. Particularly in relation to response to crisis, A&E departments and GP
Integration Authorities should
- Review the recommendations in the Royal College of Psychiatrists report, and ensure that:
- Personality disorders are included in plans for mental health
- People with personality disorder have equal access to and quality of service across geographical
- There is a personality disorder lead for each health board – to advocate for appropriate services and promote a consistent and evidence-based approach.
- There is continuation of the work which was commenced in developing Integrated Care Pathways (ICPs) within each health
- Commissioners and managers of health and social care services should review this report to consider aspects of their current practice which can be improved, specifically:
Diagnosis, assessment and treatment
- Assessment and diagnosis is carried out by skilled mental health practitioners, in collaboration with the person being assessed and ideally involving family/carers.
- People with BPD are provided with written information about the diagnosis and offered post diagnosis follow up.
- Anyone with a diagnosis of BPD is offered timely access to evidence- based psychological therapy.
- GPs supporting people with BPD have timely access to support from mental health services when required.
- Mental health services in each Health Board should be able to access support and advice from an identified personality disorder lead.
Recovery and staying well
- Provision of jointly commissioned services that support recovery and staying well, and remove barriers to access, developed in consultation with people with BPD.
- Local authorities, and health and social care partnerships, work together to develop provision of relevant services under Sections 25-26 of the Mental Health (Care and Treatment) (Scotland) Act 2003.
Responding to crisis
- Engage A&E, primary care and mental health staff in reviewing Psychiatric Emergency Plans to ensure crisis pathways support people with
- Individualised crisis plans are developed collaboratively with the person who has the BPD diagnosis, shared with all agencies involved and regularly
- A&E staff have access to mental health staff for support, and can access care and crisis
Training and awareness
- A tiered approach to staff training that includes GPs and A&E staff as important stakeholders, with an emphasis on attitudes, values and a lived experience perspective (with reference to Transforming Psychological Trauma, Knowledge and Skills Framework for the Scottish workforce6).
- Carers are directed to appropriate carer support and key information is shared with them as appropriate.
About personality disorder
It is an illness; you just can’t physically see it – all I ask is dignity and respect.
Personality disorder is usually defined as a deeply ingrained and enduring pattern of behaviour and inner experience. This affects thinking, feeling, interpersonal relationships and impulse control. It leads to significant functional impairment and distress. These patterns tend to affect all areas of life and functioning, and tend to be inflexible and long lasting. The prevalence in the general population of all personality disorders is six to 10 per cent. In general mental health care settings, prevalence rates of personality disorder are estimated to be nearer 50 per cent, with BPD being most common.
Borderline personality disorder is a type of personality disorder with a long-term pattern of abnormal behaviour, characterised by unstable relationships with other people, unstable sense of self and unstable emotions. A person with BPD may experience acute episodes of anger, depression and anxiety that may last from a few hours to days. Symptoms can often result in impulsive actions and problems in relationships with other people. It is recognised that there are challenges in providing support and treatment for people with BPD. This can impact on people’s experience of care.
It is estimated that 75 per cent of people with BPD engage in deliberate self-harm and the lifetime suicide risk in BPD is estimated between eight and 10 per cent.
One of the factors which may contribute to the development of personality disorders is early life trauma and neglect. It has been shown that early life Adverse Childhood Experiences have a broad effect on multiple social, educational, physical and mental health outcomes, yet not all people with a diagnosis of personality disorder will have experienced trauma.
For the purposes of this report, we refer to BPD (DSM-V), which is also often known as EUPD (ICD-10). Many or all of the sub-categories of personality disorder are likely to be replaced in future International Classifcation of Diseases classification with an overall general category of personality disorder.
The Scottish Government Mental Health Strategy 2017-202710 does not specifically mention BPD, but many actions relating to prevention and early intervention will, in the longer term, be of benefit. The actions particularly relevant to BPD include:
- Increasing the workforce to provide access to dedicated mental health professionals in all A&E, all GP practices, every police station custody suite and in prisons. Over the next five years increasing additional investment to
£35 million for 800 additional mental health workers in these key settings (Action 15).
- To test and evaluate the most effective and sustainable models of supporting mental health in primary care by
- To fund work to improve provision of psychological therapy services and help meet targets already set.
- To develop more accessible psychological self-help resources and support national rollout of computerised CBT with NHS 24 by the end of
The Scottish Government have also made a commitment to developing a National Trauma Training Strategy. NHS Education for Scotland (NES) were commissioned and have subsequently developed ‘Transforming Psychological Trauma: A Knowledge and Skills Framework for the Scottish Workforce’ . This framework describes four tiers of training designed for a range of roles. The first basic level, trauma-informed practice, is relevant to all of the workforce; with the fourth, trauma specialist level, for staff who are involved in care and treatment with trauma-specific services. The principles of trauma-informed practice are not solely designed to treat trauma, but to address barriers and enable access to the care, treatment and support that people need for a healthy life. Use of the framework by services could help lead to better outcomes for people with personality disorder.
A further important step has been the recent publication of ‘Personality Disorder in Scotland: Raising awareness, raising expectations, raising hope by the Royal College of Psychiatrists (RCPsych) in Scotland. The College identified personality disorder as a priority at its strategy day held in 2016. They established a short-life working group that produced the report, which describes the current provision of mental health services for people with a diagnosis of personality disorder in Scotland and a consensus view on good practice for services.
Why we carried out this visit
We chose to visit people with BPD because we wanted to follow-up on some of the issues we had found in our work. Consultation with people with lived experience by our engagement and participation officer highlighted that BPD was an area people wanted us to look at.
We wanted to hear the voices and experience of people with BPD and those who supported them, to find out about the difficulties they face and, if necessary, to make recommendations to improve care, treatment and support.
The Commission has carried out investigations, Mr QR and Ms CD, where we found that individual care was compromised, partly as a consequence of the response to a diagnosis of personality disorder.
Through other aspects of our work, including our telephone advice line and our visiting programme, we are often told about difficulties faced by people with BPD, their carers and the staff who work with them.
We focussed on people with BPD who were living at home at the time of our visits. The Commission regularly visits low, medium and high secure mental health services across Scotland and prisons. We are aware that a small number of people with BPD will be in prison, or secure psychiatric services, as a result of contact with criminal justice services and we are often contacted for advice about individual cases. These cases tend to present complex issues and we address them on an individual basis.
We also met regularly with staff from the Royal College of Psychiatrists, who were working at the same time on a national report looking at describing current provision for personality disorder services and making recommendations on good practice for services providing care for people with BPD across Scotland.
How we carried out these visits
Prior to starting our visits, we consulted with as many people as possible to hear from them directly about the difficulties they face. Our consultation meetings with people with lived experience and carers, both individually and in groups, informed our visits. We are very grateful to all the people who contributed their experiences.
This consultation work was carried out mainly by the Commission’s engagement and participation officer (lived experience) who met with 35 people, including three who identified themselves as carers of someone with the diagnosis. We were aware that it would be difficult for us to look in detail at all the issues people may identify, so we asked them to tell us three key priorities we should look at.
The key priorities identified as the most important areas in the lives of people with a diagnosis were:
- Stigma and discrimination
- The assessment and diagnosis of BPD
- Access to treatment and support
- Support after therapy and treatment finishes
- Access to help in crisis and out of hours
Other issues identified included: access to peer support, loneliness and isolation, activity and occupation, the use of medication, involvement and attitudes of family and the police. This is broadly similar to the National Institute for Mental Health in England, which identified helpful features for personality disorder services including: early interventions, specialist services, choice from a range of treatment options and individually tailored care.
The information we collected during the consultation helped us to decide on the questions we would ask in our questionnaires and at future meetings.
We sent out a flyer in summer 2017 letting as many groups and individuals as possible know about our forthcoming work.
In November and December 2017, the Commission met with people who identified as having BPD. We engaged with 106 people from a range of urban and rural settings. We also spoke with a range of professional staff and carers.
We prepared an information sheet for individuals explaining how we would use, record and protect the data that we collected. All information given by people with BPD was stored anonymously.
We obtained 70 completed questionnaires from people with BPD. The questionnaires asked about the main priority areas identified at consultation. The questionnaire was completed directly, online or in paper form. We also offered a telephone interview or personal interview with a member of our visit team for those who preferred this way of completing the questionnaire.
Some people told us that they preferred to give feedback as part of a group and we held eight focus groups addressing the same topics. Thirty six people attended these groups.
We wanted to find out from health professionals about their experiences caring for people with BPD. We asked medical directors in each health board area to send out three online surveys: to GPs, consultant psychiatrists and to A&E departments. We received 313 individual responses from professional staff from 11 health board areas.
We monitored the Commission’s telephone advice service over a three month period to identify calls that were possibly related to a diagnosis of BPD. We identified over 30 relevant calls which were mainly about people in crisis. Around half were from staff involved in care and support, and the rest from carers and people with BPD.
We looked at a sample of certificates received at the Commission about hospital detentions under the Mental Health (Care and Treatment) (Scotland) Act 2003 (the Mental Health Act) where personality disorder was identified as the type of mental disorder. We looked at these in detail to see what type of personality disorder was involved.
Responses from individuals and focus groups were analysed using a qualitative approach to extract key themes. The professionals’ survey responses were analysed via a spreadsheet. Where numbers are used in this report we have largely referred to the convention set out in Appendix One.
We describe our findings in the next part of this report. In each section, we set out:
- What people’s rights are.
- What people we consulted told us and how this shaped what we asked
- What we were told by people with BPD and by staff involved in their care and treatment.
Living with Borderline Personality Disorder: The experience of people with the diagnosis, families and services in Scotland (November 2018). You can download the full document here.