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.
What we were told by staff
General practitioners and psychiatrists surveyed also spoke about crisis management. GPs described a range of experiences in accessing crisis support for their patients. Where supports were available this was valued:
“Unscheduled care team have been very helpful.”
“Crisis management via our home intensive treatment team is prompt.”
However, difficulties in accessing crisis support were also common:
“When patients are in crisis there are often frequent appointments and calls which have to be dealt with without any support to the GP or patient.”
“These patients often bounce between us and third sector services with little help from secondary care when a crisis arises.”
“Availability of support and crisis support could be improved.”
One theme repeatedly highlighted by GPs was the importance of information sharing and the value this had in supporting their patients with BPD. Good communication and collaborative working was also identified by psychiatrists as key to improving crisis care:
“Joined up, attachment focused working between crisis teams, CMHTs, primary care and psychological services.”
“Serious engagement with general hospitals to ensure fair treatment of self-harm and suicide attempts.”
What we were told by services
The NHS 24 111 service provides urgent health advice out of hours, when GP practices are closed. The advice covered includes mental and physical health concerns.
NHS 24 report that people with a BPD diagnosis will generally attend A&E in crisis rather than contacting NHS 24 in the first instance.
They highlight that there could be improved communication between services and cited GP electronic systems not being accessible by NHS 24. In some health board areas, instead of having to refer individuals to GPs for follow up, information can be sent directly to CPNs in community teams for follow up.
A small percentage of calls to NHS 24 about self-harm and suicidal intent are passed directly on to the police for follow-up. The police may attend the person’s home and take them to A&E for further assessment.
NHS 24 are aware that around two thirds of calls they receive in connection with BPD are from, or about, people already known to services. The availability of wider information that could be gleaned from shared crisis plans would improve this support.
Currently NHS 24 are working collaboratively with police and the ambulance service on developing a pathway for unscheduled mental health services that will compliment locally based services.
Police Scotland is divided into 13 divisions covering the whole of Scotland. Each division has a Risk and Concern Hub which is responsible for incoming calls. The source of these calls varies considerably, from concerned members of the public to friends, relatives and other professionals. In an out-of-hours situation, people with BPD may come into contact with the police in this way, particularly if they are at risk and in crisis.
We know from our monitoring role that the police are in regular contact with people when in crisis with their mental health. Legally, the police are required to notify the Commission of any person held under a Place of Safety order (Section 297 of the Mental Health Act). This is when a person who they believe may have a mental illness and is in immediate need of care and treatment is found in a public place. The person can be taken to, and detained, in a Place of Safety for up to 24 hours in order to be assessed by a doctor and for any necessary arrangements to be made in relation to their care and treatment. For further information please see our latest report on the use of Place of Safety orders in Scotland.
People with BPD told us that their experience was less formal and, although they did have contact with the police and were accompanied to A&E departments, they did not always feel supported:
“Most of my support comes from the police and out of hours, I get more support from the police than other services. Mostly they are understanding and gentle, in general if it is the local bobby they will come back to check or give you a phone call to see if you are all right.”
“The police can be very good and helpful but individual officers vary greatly – some are very helpful and compassionate, some are not.”
“I think there should be a separate emergency service for mental health as we use up a lot of police and ambulance time because there aren’t the right resources to help us.”
Some people spoke about police officers lacking awareness about BPD and felt that this could be improved on. We are aware from contact with Police Scotland that mental health awareness training is available in some divisions with the aim of improving this across the force. We were also told about an initiative in Carlisle where police officers, out of uniform and trained in mental health, respond directly to crisis calls.
An additional response open to the police is to make a referral to the local authority under the Adult Support and Protection (Scotland) Act 2007. This legislation requires local authority social work departments to then make inquiries or fuller investigations if concerns exist. This occurs where they feel a person meets the legal criteria and may be at risk of significant harm. Consultation with the ASP West of Scotland Practice Network has indicated that a high number of ASP referrals are received by local authorities across the country in this way.
Emotional harm is often identified and potentially could apply to someone with a diagnosis of BPD. The concept of harm is widely defined, but emotional harm can be identified and potentially could apply to someone with a diagnosis of BPD.
Distress Brief Interventions
Distress Brief Interventions (DBIs) are a relatively new way of supporting people in distress.
The DBI approach has emerged from the Scottish Government’s work on the suicide prevention and mental health strategies. It arose out of people in mental health distress presenting to frontline services including Police Scotland, A&E, GP practices, ambulance and social work services, and receiving an inconsistent response. This was particularly the case in out-of-hours services where people would present in crisis.
The aim of the programme is to provide a framework for improved inter-agency working across a range of settings, interventions and community supports. The shared goal of providing a compassionate, connected service will mean better engagement with those in distress and that people will become involved with services for a longer period of time, leading to improvements in their own mental health.
Distress Brief Intervention is a time limited and supportive problem-solving contact with an individual in distress, involving a two tier approach in terms of response.
Level one is provided by front line staff, such as A&E or ambulance staff, who will have initial contact with the person when they present. They will deliver the first response to the issue, which should be focussed and demonstrate compassion. Level two is provided by trained staff ‘who contact the person within 24-hours of referral and provide compassionate community-based problem solving support, wellness and distress management planning, supported connections and signposting for a period of up to 14 days.’
All staff will have been trained to a specific level. Currently there are four services operating across Scotland: Aberdeen Penumbra, Inverness Support in Mind, Scottish Borders Joint Mental Health Service and a Lanarkshire project jointly hosted by Health and Social Care Partnership North Lanarkshire and South Lanarkshire Health and Social Care Partnership.
Distress Brief Intervention is not specifically targeted at people with a diagnosis of BPD, but many people with BPD will present at non-specific mental health services at times of crisis and out of hours.
Whilst recognising that a short term intervention, with a distinct ending is not always best practice for people with a BPD diagnosis, the DBI model does offer an empathic response and short-term continuity, both requirements in the longer-term support and care of people with BPD. In addition, this input may complement the longer-term care of the person with BPD. It should not replace any existing mental health input, but where these services are in short supply, the DBI programme will be able to identify and highlight local gaps.
The DBI programme is still at a relatively early stage and none of the people with BPD that we spoke to had had contact with this service.
Accident and emergency departments
We received many comments about the experience of using A&E departments. Although some were positive, the majority of comments described a negative experience for those who used the service.
Most told us they were reluctant to use A&E departments and if they did, this tended to be in relation to episodes of self-harm or overdose of medication. Many expressed feelings of guilt at using the service but felt they had no other option. Apart from immediate physical treatment, A&E was not best placed to meet their needs:
“A&E services don’t care, they make you feel like a time waster.”
“Hospital staff were very business-like; there to get you physically well and on some occasions I was seen by a psychiatrist or the liaison team and they just discharge you which I just find appalling – with little or no support – it puts a hell of a lot of pressure on my carer.”
Occasionally people told us about A&E attitudes they found discriminatory:
“Attitude made it worse… dismissive, accusatory and unhelpful.”
The importance of good communication between A&E and mental health services was highlighted to us by several people with BPD:
“Assumed mental health team would know via A&E when I had attended, but they didn’t communication issues between services.”
“In A&E they think you are making up your physical health symptoms. You are told ‘It’s all in your head’.”
Information from A&E staff
We received 110 responses from A&E staff across the country to our online questionnaire. The responses were from 93 medical staff and 17 nurses.
Most respondents told us they personally see people with BPD at least once a week in A&E. People were often brought to the A&E department by the police who were concerned about the behaviours of the person. The most common reason given by staff for presentation of people with BPD at A&E was self-harm or overdose.
Most A&E staff could refer to liaison mental health teams and around a third also referred to crisis teams and in-patient services. Difficulties accessing prompt mental health support was, however, a frequent criticism:
“Mental health services are not available 24 hours a day. There are large gaps in local evening cover and slow work rate of assessment teams. Failure of local mental health teams to appreciate the pace and rate of emergency department workloads.”
“I often call psychiatry and am met with frustration that I have not managed the patient better, but I don’t have access to all the information regarding their engagement with psychiatry. I have to go on the face value of what the patient tells me or what I can see from previous attendances.”
About half indicated they felt confident in dealing with people with BPD, medical staff reported feeling slightly more confident than nurses.
We asked respondents to highlight three words that best described their experience of treating people with BPD. The word most used was frustrating.
Only around a fifth of respondents had received any training in relation to BPD and a third had undergone training for self-harm/suicide management. We were told that some of this training had been a long time ago, as part of basic professional training:
“Teaching led by liaison consultant psychiatrist with case examples.” “Local teaching by psychiatric department and psychiatric study days.” “Liaison nurses run study days.”
Most respondents were interested in further training in these areas, with around a third being very interested to learn more.
Staff questioned whether A&E was the most appropriate place for people with BPD to be seen; the environment was noisy and busy, staffing levels were insufficient and cases often took up a lot of time and resource. It was felt that A&E could deal with the acute medical and physical aspects of presentation but not the underlying issues. An acute assessment or crisis service were suggested to be more appropriate:
“A&E is not the place to assess such individuals; it is loud, chaotic and such patients do not do well in such environments.”
“I am aware that many come to the emergency department because we are always open. However it is not the best environment. The busy emergency department is not a pleasant or safe environment for someone with emotional distress and our staffing levels do not support the level of supervision often required.”
“This group are challenging because the emergency departement has little to offer them. We can treat the overdose or stitch up the self-harm but ultimately we do next to nothing for the underlying problems. I would like to see an outside of emergency department service for these patients, rather than repeated attendances.”
“An acute assessment area at the local psychiatric hospital, where many could be better assessed in a more suitable environment. At present they are all directed to the emergency department if a crisis team is not immediately available. There has been an initiative to have the police contact crisis rather than bring to people to the emergeny department, but use of this seems to be variable.”
Accident and Emergency staff had several thoughts on how to improve care and treatment of people with BPD. They particularly wanted to be able to access information in care plans/crisis plans:
“Locally we have access to management plans for patients with complicated psychiatric issues. These plans are excellent and very thorough, often explaining the background to the patient, the best approach when interacting with them as well as effective strategies. Unfortunately with a high turnover of junior staff, they often do not have the confidence of their assessment and still engage with Crisis Assessment and Treatment Service to discuss cases.”
“Treatment plans on the portal to advise how best to manage if they present – what support have they been offered and how engaged have they been.”
“If we knew more about them and who they had seen, even that day or hour, what plans and support were in place, we could help provide a consistent approach.”
Staff wanted improved support from mental health services when people with BPD presented at A&E:
“Better support from mental health services and colleagues when asking for advice/referring patients to them.”
“Not to withdraw all support from other services leaving the emergency departments to pick up the pieces in the out-of-hours period.”
“They should be able to access the mental health services rather than turning up in an emergency department.”
“Psychiatry teams should be more engaged in the process, especially during the initial presentations when the diagnosis has not been made.”
“More specific community support rather than having to resort to A&E in times of crisis.”
Case study 4
A small group of nurse practitioners in the mental health liaison service in Elgin, Moray, have been supporting A&E colleagues for some time by offering regular training about aspects of mental illness that they might encounter when treating patients who visit the department.
A person with lived experience of BPD approached one of the nurse practitioners with a suggestion that they both collaborate on a project to ascertain the attitudes of A&E staff towards patients who present with self-harm issues.
They surveyed staff and identified that they felt unskilled in supporting people with BPD who presented to A&E in crisis. Patients with BPD were also asked about their experiences in A&E. The staff predominantly described their experience of this patient group negatively, finding them ‘challenging’.
They requested further training and a study day was developed. An important part of this was service user presentation on how it felt to have BPD. The feedback from A&E staff was positive, with a strong impact on changing attitudes and with many expressing a desire for more people with lived experience of mental health problems to be invitied to contribute to future training sessions.
Stigma and discrimination
BPD still seems a little-known and very misunderstood condition, even among medical professionals. More widespread awareness and understanding, coupled with early intervention and provision of DBT is essential if those of us with the condition are to stand an optimal chance of leading a fulfilling life.
See Me (Scotland’s national programme to end mental health stigma and discrimination) defines stigma and discrimination in the following way:
‘Stigma is a negative perception attached to a certain characteristic, it is a form of prejudice and as such stigma is often rooted in fear and misinformation. Different mental health problems are often stigmatised in different ways. Public stigma refers to the negative attitudes and beliefs held by the general public towards people with mental health problems. People connected to people with mental health problems,
e.g. family member or friend can sometimes experience stigma by association. This can negatively impact upon the mental well-being of both the individual and those around them.
‘Self-stigma, which is the internalisation of negative and often stereotypical beliefs or attitudes, can lead people into believing that they are incapable of things such as getting a job or maintaining a relationship. This can result in the individual withdrawing, feeling frustrated, angry, experiencing low self-esteem and lack of confidence in their future. As a result many are at risk of defeating their own personal goals and ambitions.
‘Structural stigma refers to the rules, policies, and practices of social institutions that arbitrarily restrict the rights of, and opportunities for, people with mental health problems.
When a person is treated less favourably in an institutional setting, such as the workplace, due to a stigmatised characteristic, this is discrimination. Stigma and discrimination are closely interlinked.
It is a basic principle of the NHS, reinforced by Article eight of the ECHR (the right to respect for private and family life) that all patients, whether in the community or in hospital, have the right to be treated with respect, dignity and compassion. The Equality Act 2010 gives everyone the right not to be discriminated against on the grounds of protected characteristics that include mental illness and BPD.
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.