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.
Case study 1
The ‘Emotionally Unstable Personality Disorder Service’ in Dumfries and Galloway offers a model of how a small team are delivering specialist support across a large rural area. The service runs on an education and consultation model and the team view their main roles as up-skilling and changing attitudes towards people with EUPD.
They do this by running workshops for professionals from statutory and third sector services. The team have so far provided teaching days for NHS staff, including primary care and A&E, social workers, housing workers and the police.
The team offer additional consultation and advice to colleagues who are managing complex cases. Although the team do not carry out therapeutic work themselves, they support mental health staff in working with people with EUPD.
Funding was provided to train CPNs within Community Mental Health Teams in Structured Clinical Management (SCM) for EUPD. This provides CPNs with the skills to support people with EUPD through this recovery model. The team are providing training and supervision to the community teams, to deliver SCM in their local areas. The aim is to train all CPNs in Dumfries and Galloway by 2019.
An important role of the service has also been supporting patients and staff with positive risk taking, which helps to reduce lengthy inpatient stays.
The team have also worked with inpatient staff to pilot planned admissions for a small number of people with EUPD, who are clinically assessed as requiring extra support when in crises. Based on individual need, a number of admissions are agreed over a set time period, which is regularly reviewed. This allows a person who feels in crisis to have a brief respite admission to a general adult ward (usually for a maximum of 48 hours) if they need it. The individual chooses when to use their allocated days, allowing them ownership of the process.
Case study 2
The Coping and Succeeding (CAS) day service in Inverness was highlighted as particularly positive. This service has been developed over five years by the specialist personality disorder team in Highland, with service user involvement at every step. This co-production model is highly valued by participants, who described the service as having ‘a genuinely collaborative approach. The service offers a structured, time limited programme for a small group of people who have completed other stages of a phase-based therapeutic approach. It is the stepping- stone to moving on from mental health services.
There was general agreement about the ‘sense of community’ offered from the group. The team are linking up with the University of the Highlands and Islands and other organisations to provide educational opportunities for CAS members. Links with the Forestry Commission and other local outdoor and voluntary organisations are providing opportunities for recreation and potential future employment. These developments are still in their early stages but show promise.
We asked about support from a counsellor and of those who did have a counsellor, around half said it was helpful.
“I work with a counsellor. We talk about my symptoms and how I’ve been feeling. I’ve seen a psychiatrist twice this year, been to groups and been referred by my CPN for other treatments and therapies.”
Both the NHS Highland ICP and the recently published consensus statement ‘Shining Lights in Dark Corners of People’s Lives’ say that some people with BPD will benefit from specific interventions to enable meaningful personal, interpersonal and social progress to occur.
Around a third told us that they had contact with an independent sector organisation, most felt their contact with these services had been helpful. Drop-in facilities were limited, but reported as very helpful.
“There was nothing available in this area so I set up a user-led peer support group.”
“I got really great support from Penumbra’s self-harm project – the combination of the approach that the service takes, along with the staff attitudes, makes this such a good service – I owe them my life.”
“When I’m down, I go to Falkirk and District Association for Mental Health if I hit crisis.”
Self-management empowers people with mental health problems to lead their own recovery and providing the skills, strategies and knowledge to do this promotes improved self-management.
Most told us that self-management strategies, being taught skills to cope and finding strategies to manage suicidal thoughts were helpful areas to be supported in.
Gaining these skills helped people cope with the symptoms and problems associated with BPD.
What people told us they wanted from services
We wanted to find out if people had been informed about the range of specialist services, and therapies or treatments that have developing for BPD in the last few years. About half said that what they knew had been helpful.
Whilst the majority found support following contact with mental health services, both general and specialist services, was key to staying well, finishing a course of psychological group or individual therapy could be a challenge; it left a gap and many people said there were fewer opportunities for them.
Where services were not easy to access or responsive this created an immediate barrier. For example, particular referral criteria could leave people feeling excluded.
People told us they were looking for a consistent response, good communication and information, and a clear plan on how they could begin to work through their issues with support and ultimately live their lives. They also spoke of primarily looking for mainstream services that were accessed by others in their communities and not always specialist resources.
“Social groups – something with a non-health or clinical basis would be good.”
A sense of identity and being able to be involved in meaningful activity was important. People having a sense of responsibility, obligation or responsibilities in life can be highly influential in bringing about positive change and helping them stay well.
Employment, education and volunteering
Those who were employed, or engaged in further education or volunteering found it helpful. However, half of the people we spoke to were not engaged in any of those activities.
Having a job gave an overall sense of routine and structure to life and helped significantly in staying well. However, sharing issues with colleagues could be difficult, especially with managers for fear of stigma and discrimination in the work place. On occasion, the overall negativity of the experience and stress could lead to leaving the world of work completely.
Volunteering added routine to people’s lives; helping to distract from their own concerns.
“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.”
“It’s important to have a purpose, after DBT, I have two jobs but I don’t tell my employer about my diagnosis.”
We heard that accessing funding for full-time education was difficult and required individual support.
Benefits and welfare reform
Some people with BPD were keen to discuss the issue of financial stability and the problems and stresses associated with living on benefits. Although not exclusive to the diagnosis of BPD, there appeared to be added barriers for them: a misunderstanding of BPD and associated stigma when people were faced with the benefits process, both from the Department for Work and Pensions and when getting assistance from professionals to achieve a claim. While a sense of financial security was important, the process to achieve this was often dreaded and contributed to people becoming stressed and more unwell.
“Navigating the benefits system was a challenge, I could not have done it without the Citizens Advice Bureau.”
The main barrier was the difficulty of obtaining benefits and filling in forms to obtain benefits.
There was a tension between the idea of recovery and the sense that the idea of living on benefits somehow went against this, a struggle whilst having to acknowledge the need for financial assistance.
“I feel like a fraud, but having benefits makes a huge difference.”
Family and friends
The support of family and friends, and having an informal network often kept things in perspective, particularly if there were dependent children, providing a particular focus to stay well. However, explaining the diagnosis to family members could be very difficult. It was difficult to make sense of their own emotions and behaviours and could be problematic to explain this to others.
“It’s difficult to explain your mental health to family, they don’t really understand depression never mind BPD.”
In contrast, contact with family was more limited for people who had had adverse childhood experiences and poor family relationships. People also did not want to add to the burden of care that they felt family members already had to face far too often.
Recovery and peer support
Recovery is a term that has been used for a number of years, but has seen progression in Scotland with the advent of the Scottish Recovery Network (SRN) in 2004 and a strong emphasis in Scottish Government mental health policy.
The SRN is an organisation designed to raise awareness and promote the issue of recovery. It aims not just to place recovery at the centre of people’s lives, but also develop this into mental health practice and ongoing policy. Discussion with staff at SRN highlights that recovery is a highly individualised and personal experience and is unique to each person. They therefore do not offer specific support for people with BPD, but choose not to identify people by their diagnosis.
The concept of recovery was one which some people with BPD that we spoke to sometimes found difficult to expand on; rather they viewed their progress as a lifestyle change or a means of finding new ways and mechanisms to adapt and cope with their own issues. For a few, comments were made that, as BPD had been explained to them by professionals as an intrinsic part of their make-up, change and the potential for recovery might be limited.
“There is very little focus on recovery or positive hope.”
“I don’t get the recovery thing, I’m always going to have BPD.”
We were able to establish that for many people we spoke to, outside of professional services, finding a distinct way of coping needs to be a priority. This was especially important if local services were not flexible to change or readily available. Supports identified by people in this chapter are a key part of individual recovery for people with BPD. What we found however, is that both mainstream services and community alternatives are in short supply and continue to be difficult to access. The stigma and discrimination that people feel is also a barrier to recovery.
“I just want help to develop hope and skills to cope but not have the ‘expectation of recovery’.”
A peer support role is one where a relationship of mutual support between people of similar life experiences offer each other a connection and understanding. This can take several forms. For example, it can be an informal relationship that has developed between people over time and formed a supportive function. This may be a naturally occurring individual or shared group experience. In addition, peer support can be provided by the specific role of peer support worker; a worker who has had personal experience of mental health problems and is trained and employed to work in a formalised role with others and assist in recovery.
There have been a number of these posts developed in mental health services over the last few years. However, there are still relatively few employed peer support workers across the country (80). The people we spoke to had little experience of the role, nor had this been suggested to them by professionals.
It was encouraging to note that a number of the focus groups we attended did evidence naturally occurring peer support. Supportive relationships were emerging between individuals attending specialist groups, and we are aware that some people would continue to support each other once the programme had finished.
A few people we spoke to said that peer support could be something that might also assist in staying well. In some areas people can access a peer support group developed by people with lived experience. ‘Serenity’ in Inverness and ‘Beyond the Border’ in Dumfries were mentioned by their members as providing valuable support. However, most were not aware of peer support services in their areas.
“A peer support group would be really good – it would provide a helpful social contact.”
What we were told by staff
Staff told us of the challenges that they face in coordinating good support for people with BPD. We spoke to both specialist BPD services and CMHTs and they identified a range of solutions and resources that they felt could assist in maintaining the health and well-being of people with BPD. A number of these focussed on additions or changes to existing services, including effective team working, increase in staffing and resource, and having a clear national strategy and care pathway. It is interesting to note that they contrast with the statements made by people with the diagnosis, who, although looking for accessible, flexible mental health services, are also pointing out that support needs to be seen more broadly than only in health settings.
Consultation with the Adult Support and Protection (ASP) West of Scotland Practice Network has indicated that a number of people with BPD have been referred into the ASP framework, particularly at times of crisis. Despite this, interventions can be short-lived and people are often directed out of the framework. Members of the network felt that meaningful interventions and services could be in short supply for people with the diagnosis and the response differs across the country. Additional comments centred on the high level of risk that was often associated with these referrals.
It is worth noting that Sections 25 to 27 of the Mental Health Act impose duties on local authorities to provide care and support services for any person with a mental illness and who are not in hospital. This includes personality disorder. In addition they are tasked with providing services which aim to promote well-being and development. This should include services which provide social, cultural and recreational activities and assist with training and employment opportunities.
Case study 3
The Rivers Centre is NHS Lothian’s specialist service for people of all ages affected by psychological trauma. It offers an open, accessible service and is based in a community library setting. This provides a discreet way for those who visit the service to get support for their mental health, away from the traditional clinical setting.
It was developed in consultation with users about what they would want their services to look like and how they should operate. The Rivers Centre puts the individual at the heart of everything they do and aims to make sure that people get the right help, at the right time. A self-referral system is used so there is no appointment system. Four mornings a week an advice service is in operation; people can either call ahead or attend in person.
When someone visits the centre, the first experience they have is contact with highly skilled staff who then undertake a short assessment of between 20-30 minutes. This is to discern the immediate needs of an individual.
After the assessment, input can range from giving advice, to referring to other services in the independent sector. This care is identified by link workers who assist in matching the most appropriate service for each individual.
The Rivers Centre is a public social partnership working closely with their colleagues in health, social care and the third sector. Currently the centre has 25 partners who they can refer people on to such as Rape Crisis, Victim Support and Penumbra.
There are no exclusion criteria for the Rivers Centre and no discharge policy, although they are not an emergency service, they offer people a multifaceted approach to help them deal with trauma.
Crisis and A&E
Since I have created my crisis plan with my psychiatrist things have went well with the crisis team and others who deal with me in crisis, but before that it was an awful experience.
People with BPD experience difficulties in regulating their emotional states. Stressful situations and experiences can often be a trigger for crisis. Supporting people with BPD when they are in crisis is a key part of their care and treatment. Assessing and managing risk is an essential part of supporting people, as self-harm and suicidal tendencies are a core feature of the condition.
The recent Royal College of Psychiatrists report states:
‘Evidence based therapies all include collaborative crisis planning as one of their core components, as this is generally considered to be an important tool in empowering people to develop skills to manage their own distress.’
A crisis plan is a plan that the individual develops with medical and support staff detailing what they should do and who they should contact when a crisis arises.
Everyone has the right to participate in putting together a care plan and risk or safety plan. This reflects the principles outlined in Article eight of the ECHR and the Patients’ Rights (Scotland) Act 2011. The right to information about crisis and out-of- hours services reflects Articles two and three ECHR duties to prevent risk to life and inhuman or degrading treatment.
What people told us at consultation
People with BPD talked about the absence of service response, the difficulty in having their situation taken seriously, staff attitudes and the lack of access to hospital beds. They said they would often go directly to A&E departments for assistance rather than go to a GP or CMHT. Some felt they had been dealt with well, especially by CMHTs.
What we then asked about
We asked what could trigger a crisis and what response was most helpful. We also sent an online questionnaire to A&E departments across the country.
What we were told by people with BPD
People gave us some insight into their lives when crisis arises. Of these, the majority told us they had at least one episode of crisis in the month prior to answering our questionnaire. The most commonly mentioned trigger for crisis was negative attitudes from other people, followed by trauma, family issues or lack of support from services.
People mentioned many ways of coping in crisis situations. Some told us they withdrew from family, friends and usual activities and would try to deal with the situation alone. Others would seek help from services. People described the common symptoms of increased suicidal thoughts, urges and impulsivity during a crisis.
Only a minority of those we spoke with spoke about having crisis plans, but the majority of those who did have them found them helpful
“I have a crisis/safety plan but don’t use it much now. Used it often in the early days. It’s full of skills that I use regularly.”
“I now have a crisis plan and that helps, this was circulated to all parties that work with me.”
Around a third of psychiatrists said their team always developed crisis plans with patients.
People sought help in a crisis in a variety of ways: by contacting their mental health worker or local crisis response team, speaking with their GP, calling a helpline or attending A&E. People also had experience of contact with the police due to concerns about their behaviour or safety during a crisis.
We heard mixed experiences about the support people received from mental health services when in crisis. Crisis services were not always found to be helpful:
“Crisis services are awful, they don’t take you seriously, they just offer distraction techniques which are no good in crisis… they say go for a relaxing walk or take a bath.”
“It is very difficult to get proper support when in crisis. Saying things like ‘this will pass’ doesn’t help. Neither does people thinking you are attention seeking. Even with a management plan, when I am in crisis it does not get followed even though I wrote it when I was in a good place. It clearly states when I hit crisis what I am like, what I will say and how I need supported.”
A few people mentioned advance statements and liked the idea of using these, especially if they could state their wishes about what should happen to their children if they were in crisis.
As people become more able to manage their crises, the majority reported that they used skills they have learned in the past to assist in recovering from crisis.
People spoke of how important it was to have professionals who didn’t reject or discharge them at times of crisis, but instead persevered. Being supported by professionals who know you well was highlighted as being beneficial:
“CPNs invaluable… important for them to know you when you’re well, so they can help you when you’re unwell.”
“My therapist is helpful – doesn’t try and fix me but takes me seriously and helps me get help when I need it in a crisis. They have helped me build a crisis folder and taught me to ‘calm the harm’.”
“Preventing crisis would be helpful. Knowing what the signs are, knowing what my crisis is like, when it comes, when it goes, and being able to try as many avenues as I can would help.”
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.