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.
Part One | Part Two | Part Three | Part Four | Part Five | Part Six
Admission to hospital
It is generally accepted that long hospital admission for people with BPD should not be a mainstay of treatment. Supporting people to develop the skills and tools to manage their symptoms in the community is a central part of therapeutic programmes and working towards recovery.
Brief periods of inpatient care can be indicated when risks are significant and cannot be safely managed in the community or in situations where use of the Mental Health Act is required. Some health boards offer people with BPD the option of respite admission for crisis.
Often people with BPD we spoke with agreed that prolonged hospital admissions were not the solution, but that brief planned admissions could be helpful.
“It’s not appropriate as a long term place, but even if just for 24-48 hours.” “The main thing is safety, peace, asylum, being looked after.”
“Sometimes you still need others to take responsibility… Sometimes you still need a place of ‘asylum’ to be taken out of the situation when you feel suicidal.”
Some people shared negative memories of inpatient care and their fears of the consequences of hospital admission.
Others spoke about experiences of detention in hospital under the Mental Health Act. Some felt this had kept them safe when they were refusing treatment and were unable to make safe decisions for themselves:
“Capacity is a strange one because when you’re in crisis you can lie… Your judgement is clouded, the BPD takes over when you’re in crisis.”
“Being sectioned is scary, having your freedom taken away like that, but professionals should err on the side of caution because BPD has one of the highest suicide rates.”
A few people in Dumfries and Galloway had a crisis plan which allowed for a brief admission, up to 48 hours, which they could choose to use when they needed it and they found this helpful.
Mental health legislation
We carried out a small sample limited review of the use of mental health legislation in Scotland in relation to BPD and this can be found at Appendix Two.
Support and staying well
My volunteering, informal support and part-time employment all involve mental health and I use my lived experience in a positive way. This is a vital part of staying well for me as it allows me to take what I saw as a useless and worthless existence for 20 plus years of my life and get something positive out of it for me and those I support.
Rights
People have the right to services to support their well-being and social development through the local authority, to have community care needs assessed and assessed needs met. These rights reflect the Social Work (Scotland) Act 1968, Article 26 UNCRPD, right to habilitation and rehabilitation, and Sections 25-26 of the Mental Health Act.
What people told us at consultation
We were told services that help people cope with stress form an important role in keeping people well, but these services are difficult to access or not available at all in some areas.
What we then asked
We asked people with BPD what kind of treatment and support they had. We were keen to hear if supports such as employment services, peer support, further education and volunteering were also accessed and what role these played in helping individuals stay well.
We asked staff working in mental health services what access they had to supports for people.
What people with BPD told us
Figure 2. Forms of support received (%, n=65)
Over half found their psychiatrist, GP and CPN to be helpful, but not everyone had access to a CPN, with around a quarter that did not.
GPs
People with BPD largely regarded GPs to be amongst the most helpful professional support in their lives. However, both people with BPD and GPs themselves reported a wide range of attitudes towards and experiences of the relationship.
At large GP practices, people identified particular GPs who they felt cared, were respectful and listened to them; in preference they sought them out for support for their mental health, choosing to see other practice GPs for physical health problems only.
Likewise building up a relationship with a trusted GP, perhaps with a longstanding family GP helped. Some people with BPD felt a lack of primary care support, where there were perceived discriminatory attitudes from GPs.
“It helps to have a GP that has an understanding of BPD. We had one before that was doing psychiatry, now we don’t have one who understands it. It makes you more resistant to seeking help.”
“Good GP, very understanding, if it wasn’t for her I wouldn’t be here.”
People with BPD valued GPs having information about their condition and treatment plan.
“I’ve found the more information I’ve given them, the better they’ve treated me… Sharing a copy of my care plan meant they know more about me.”
We consulted GPs for their views and received 119 responses to the online GP survey. The majority said they had more than weekly contact with people with a diagnosis of BPD, with almost a quarter saying they saw people with BPD at least once a day. Most of those surveyed indicated they did not feel confident managing patients with BPD.
Only half of GPs surveyed felt supported by mental health services. The need for better support from mental health services was the most frequently made comment, with many expressing frustration at trying to get support for their patients who have BPD.
“It would also be helpful for CMHTs to take more interest in these groups of patients as a team approach, often left to crisis intervention with primary care taking the majority of the responsibility.”
“We struggle to get appropriate ongoing treatment for this group of patients.”
“BPD/EUPD are not considered as mentally ill so neglected by mental health services.”
If appropriate supports were in place, GPs indicated they could better manage the care of patients with BPD.
“They should ideally have an easily accessible key worker who knows them and their personality/behaviours well and can support patient/GP in reacting to the perceived current issue.”
“Many people appear to be misunderstood in primary care and their challenging, emotional behaviour is often thought to be attention seeking or manipulative.”
A few GPs reflected on the complexities experienced both by patients and doctors in the face of these challenges:
“Traditional models of GP consultation are very unsuited to BPD and high risks within this of creating more harm than good – 10-minute consultations can easily lead to our own stress reactions/frustrations being displayed; restricts the important aspect of shared communication with key supports; and can, all too readily, result in unhelpful referrals or inappropriate prescribing.”
Other GPs took time to grapple with the challenge of providing care and treatment to this patient group with limited resources, and competing interests for services and funding:
“Many of these patients are managed in general practice by individual GPs who are prepared to put in the time and effort to provide a supportive, consistent approach. It is not recognised or supported by the wider health and social care system. With less GPs there are soon going to be gaps in services for these patients.”
The need for more support for GPs in managing people with BPD was identified by many:
“We would hugely value support in the management of these patients. Many remain undiagnosed as waiting times/availability of specialist services are so limited.”
“I honestly think that because we have traditionally been more available than other services, we have been the fall back option for these patient when in crisis. As demands on our time are ever increasing, it has become increasingly apparent that perhaps a new model for these patients should be sought as I feel we are not really the most appropriate people to be seeing these patients as medical therapies rarely work. Access to psychological therapies is very poor. This would help. Local CPN and mental health services are extremely stretched as well.”
Most GPs surveyed said they would be interested in receiving training about BPD and several commented on the need for better training:
“Greater understanding of these issues – through training – especially for primary care.”
“Support in training – even if just to avoid pitfalls would be helpful. Should be more emphasis on training around BPD within our undergraduate and postgraduate training. Newly trained GPs come through with little or no knowledge of BPD.”
Child and Adolescent Mental Health Services
Borderline personality disorder is often not formally diagnosed before the age of 18 and there has been much debate about the diagnosis being made during adolescence. The NICE BPD guidelines are inclusive of ‘young people (under the age of 18) who meet the criteria for the diagnosis’, recommending the involvement of Child and Adolescent Mental Health Services (CAMHS) in the assessment and treatment of young people with BPD.
Although we did not meet with young people for the purpose of this themed visit, adults with BPD often reflected on their earlier care during adolescence. A number of themes emerged: not being given a diagnosis before the age of 18 was described as confusing, and abrupt and poorly coordinated transitions from CAMHS to adult services was described in some cases.
“I was an inpatient at 16 years old and had contact with CAMHS. It took me two years to get a diagnosis. I was told a lot of other things which didn’t make sense e.g. emotional dysregulation.”
“I was told that I could not be given a diagnosis when I was in CAMHS as I was too young, but staff should communicate with and explain why you have this diagnosis.”
“I only moved from the CAMHS service to adult services and within one month I had a diagnosis of BPD.”
Child and Adolescent Mental Health Services psychiatrists participating in our survey commented on difficulties around diagnosis and the challenge at times of accessing appropriate supports. However, they also expressed optimism about recovery for young people:
“In CAMHS tends to be a formulation around relationship styles/patterns and emotional regulation. On a few cases, when the diagnosis might be very clear and the young person is approaching 18, a formal diagnosis with written, verbal and internet information might be given, but it is rare to give a formal diagnosis.”
“I work with young people who are under the age of 18 and we discuss about having borderline personality traits which can respond to treatment, containment and risk management.”
“I am always optimistic given the young age of the patients I work with. Things generally feel hopeful as the difficulties tend to be less entrenched. It can be very difficult to identify community supports which is a major issue.”
Community Mental Health Teams
General adult CMHTs currently provide the majority of support for people with BPD. This is usually through support from CPNs, outpatient psychiatry appointments and support from allied health professionals, such as occupational therapists (OT). In many teams, CPNs are trained in a psychological therapy and can offer additional therapeutic support. In other areas psychology services provide psychological therapies, either individually or in groups.
Psychiatrists and CPNs were rated as some of the most helpful supports by people with BPD. However, when we consulted people about their experiences, accounts of CMHT support varied widely. Some had very positive experiences of support, whilst others had found it difficult to access help, or when they did, they found some professionals discriminatory due to their diagnosis.
As with people’s experiences of GP services, a central theme was the importance of establishing trusting and mutually respectful relationships with professionals.
People talked honestly about the challenges of developing trusted therapeutic relationships, with some describing the difficulties of engaging and the tendency to reject support, something widely acknowledged as being a potential barrier to supporting individuals with BPD:
“I was offered a CPN but when I’m not well I sack them… I had two good CPNs who were always there for me, even when I sacked them. It took about five years to accept help, I kept withdrawing then going back.”
Perseverance and a consistent approach from professionals was valued in helping people to gradually accept help:
“No matter what I present them [psychiatrist and CPN] with, I get a consistent and steady response.”
“No matter how many times I mess up they’re still there.”
“My current psychiatrist has been my doctor for almost 12 years and has been an amazing support to me and kept me alive.”
Others were less positive about their experiences:
“Psychiatrist and CPN not helpful, have no faith in them, don’t handle me well… only interested in increasing medication but don’t offer anything else.”
As with GP accounts, difficulty in accessing services was not uncommon:
“I found there is a lack of help and services are so limited and that there is no treatments I have been offered.”
“I’ve been very lucky living in a catchment area with great resources. At my previous address, care was chaotic with high staff turnover so I had no continuity. Having stability and the help of not just a CPN but also an OT has really helped to stabilise my mental health.”
When we asked psychiatrists what model of care they thought should be used for people with BPD, the majority said care and treatment primarily managed by general adult mental health services, with the support of specialist personality disorder services.
Very few opted for care by specialist personality disorder services alone or CMHT support alone. Less than half said they had access to a local specialist personality disorder service.
A particular challenge highlighted by psychiatrists was the lack of supports available for those with severe and complex difficulties, such as co-morbid mental illness, substance misuse and severe trauma:
“I am concerned that therapies do not target this severely disabled group.”
Keeping this group in mind was important in developing services:
“Being careful not to develop care pathways based on those with milder/moderate impairment – the most severely affected get left out.”
Most psychiatrists spoke positively about the potential for improvement and recovery in BPD, but emphasised the need for services to be appropriately resourced and access to evidence-based therapies being made available. The need for social supports was seen as important in not ‘over-medicalising’ care.
We found that attitudes of psychiatrists towards people with BPD were less stigmatising than among other groups we surveyed. We looked at the words each staff group used to describe their experience of treating patients with BPD. Psychiatrists tended towards more positive associations, such as ‘rewarding’ and ‘interesting’.
When we consulted staff delivering therapies, we asked what worked well:
“Providing an individually tailored package of support which is tailored to individual need and not based on diagnosis.”
“A clear, consistent, boundaried approach, relating to the individual’s level… Understanding of the individual’s way of operating.”
When we asked about what works less well, they said:
“We tend to work nine-to-five and a lot of the services the council provide are not designed for people with a mental illness let alone BPD/EUPD. Packages of care can be charged, which inevitably is a disincentive for many people.”
“We can respond in a chaotic way to people with EUPD and don’t always present united as a team when there is contact. A person sometimes has contact from different team members which can be confusing. I think we sometimes react too protectively, and are not boundaried and clear enough about what someone’s own responsibility is, or we are not clear to the client about what we can and can’t deliver/provide.”
“We need a personality pathway to formalise current practice. The assessment process needs to be improved across the boards to improve quality of traits assessments and formulations that can then inform treatment plans.”
We wanted to know what would improve their service and they said:
“Increased staff to ensure sustainability of therapeutic activity and to address the development and training of the wider staff group. Increased access and availability of training and post training support to embed knowledge and skills – specifically understanding the diagnosis, attitudes and values, managing boundaries and risk.”
“Improve communication. Unsure of what the strategy is for people with EUPD in NHS.”
“On-going education of professionals to counteract residual pejorative view of personality disorder and access to training.”
Specialist Personality Disorder Services
Whilst the treatment and support of people with BPD is mainly offered by generic mental health teams with the support of primary care, the provision of specialist services has been recommended in a number of key UK documents over the last 15 years.
National Institute for Health and Care Excellence guidance states ‘mental health trusts should develop multidisciplinary specialist teams and/or services for people with personality disorders. These teams should have specific expertise in the diagnosis and management of borderline personality disorder’.
The recent survey carried out by the Royal College of Psychiatrists in Scotland found that almost three quarters of Scottish health boards do not have a designated lead for personality disorder at the present time. Only two health boards (Greater Glasgow and Clyde and Highland) reported having specialist services for personality disorder, with Dumfries and Galloway having a dedicated consultation service.
We included visits to patients and professionals in health boards where specialist personality disorder services are currently provided.
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.
Part One | Part Two | Part Three | Part Four | Part Five | Part Six