Living with Borderline Personality Disorder – Mental Welfare Commission for Scotland (Part Six)

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

What people told us at consultation

Stigma from the public towards people with BPD was the most frequently raised concern. When in crisis, the attitude of staff could be stigmatising and unhelpful, particularly A&E staff.

Many felt that there is a shortage of safe places and services, and they weren’t taken seriously. People often disliked the terms BPD and EUPD. They resented the assumption of staff that they had the skills to cope with distress and experienced poor responses when asking for help with suicidal and self-harming behaviours.

Many felt the loneliness and isolation they experienced was sometimes because of a profound self-stigma that made them avoid relationships with other people. People reported that the closure of community facilities, such as drop-in centres, led to a growing lack of places to meet other people. Some felt contributing to society was vital to their sense of well-being, but prejudice from other people made it hard to take part in activities.

What we then asked

We asked about the attitudes and stigma they might have experienced from different groups of people, settings or stages of assessment and support.

What we were told by people with BPD

The majority said they had experienced stigma as a result of their diagnosis and reported varying experiences with different groups; generally finding the attitudes of police and their own GPs helpful, but reporting mixed experiences in relation to social workers, psychiatrists and community mental health services.

“I do not disclose my own previous diagnosis. I am aware that, although most professionals would not let this cloud their judgement or impression of me as a professional worker, there are others who would view me differently were I to mention this.”

The stigma and negative attitudes from family and friends and the wider public was mentioned. Family stigma varied; some family members did not understand the condition, others lacked the ability to deal with people when they were in crisis.

“I keep myself well; my family will be helpful up until I really start showing symptoms of a major mood swing in which case they are not helpful at all.”

Friends could also act in similar ways, finding it hard to understand or accept the condition or behaviour of their friends when unwell, and in some circumstances actively avoiding people or stopping the friendship completely.

People with BPD reported a widespread lack of understanding of the condition by the public, which often came across as negative attitudes towards them and the diagnosis.

“BPD is much stigmatised and they see us as attention seeking and manipulative, but really we are just in pain and can’t help ourselves.”

Feelings of self-stigma

Self-stigma is complex and can be bound up with reflections on past behaviour, as well as the opinions of others, and can cause some people to have very negative feelings about themselves. People reported feelings of self-stigma which included the effect of having been ‘sectioned’ (detained under the Mental Health Act) in the past, feelings of shame about having the diagnosis or about the actions the condition can sometimes lead people to.

People with BPD reported that they had acted in negative ways as a result of self- stigma. The main effect was not feeling able to talk about their diagnosis.

“I rarely talk about my diagnosis except to my family or present psychiatrist/CPN for fear of being misjudged by others.”

It also prevented people from seeking help or being open about thoughts they felt would lead to negative reactions from professionals, and could prevent people from raising complaints when they felt they had been poorly treated.

“It is difficult to accept support at times because I often feel a burden or unworthy of support.”

Successfully challenging self-stigma led to increased confidence. Peer-led activities, such as providing training in BPD, or volunteering could lead to positive experience and enhance self-esteem.

Attitudes of professionals

Research undertaken in the UK looking at the attitudes and views of mental health nurses indicates that people with BPD are often viewed more negatively than those with other psychiatric diagnoses, and generate less sympathy amongst professional staff.

People with BPD reported difficulty with the attitudes and understanding of health professionals, with some people feeling that many professionals lack both an understanding of the condition and an ability or willingness to see them as people in their own right.

People said they struggled to feel heard when seeking help and could feel that their experiences were dismissed by professionals, especially when professionals first became aware of their diagnosis. They often feel judged by professionals and some reported that they were seen in pejorative ways; for instance as trouble makers or attention seekers.

An issue that was raised by some was the difficulty of getting help when they clearly felt that they needed it. The refusal of help was sometimes seemed to be communicated in a hostile and dismissive manner.

“There is still much stigma attached to having a BPD diagnosis – a psychiatrist at a hospital I was transferred to recently told me ‘We don’t treat people like you’ and discharged me after I was transferred there from my own authority, in crisis, as no bed was available.”

“I don’t get taken to hospital soon enough because they don’t like BPD people in wards so I deteriorate until the police are involved and I’m attempting suicide, and even then my CPN and psychiatrist don’t want to admit me so I have to take myself to A&E in a state.”

We were told that some staff had difficult attitudes and prejudices about people with personality disorder. These were hurtful and upsetting to the people concerned.

Sometimes frustrations were perceived as a desire to punish people for their actions.

Discrimination in employment was mentioned by some people and included workplace bullying, loss of work and inability to get back into the labour market.

Discrimination generally

Some people reported that they thought they had been discriminated against as a result of their diagnosis. This was mainly in the workplace but also included issues around access to grandchildren, education, benefits and services. A small number of people said that they either were not believed when they tried to challenge this or felt their concerns would have been dismissed because of their diagnosis.

The behaviours exhibited by some people with BPD were viewed as challenging by many of the staff who responded to our survey. It is not possible to say that this is due to stigma and discrimination but we did hear of a lack of willingness of some staff to work with people with BPD.

A small number of staff and one psychiatrist held very strong views that people with BPD were attention seeking, manipulative, dangerous and likely to make complaints. This seems to confirm some of the views that people with BPD themselves reported experiencing from professionals.

It is important that there is wider training of general and specialist staff that includes looking at the values and attitudes that they hold about people with BPD, showing live examples of recovery in many different forms, skills training in what to say and do, having a recovery focus and challenging the sometimes pejorative attitudes held by some professionals towards people with BPD.

Carers

 

Rights

Everyone has the right to agree how much they want family and friends involved in their care and support, have their carer involved, and their views and caring role considered when determining the need for support and services. This reflects the Carers (Scotland) Act 201636 and Article eight of ECHR, respect for private and family life.

What we asked about

We asked what carers thought kept their relative or friend well, what level of support they received and what might help in the future.

What carers told us

When she went missing I had no idea who to contact or call, she goes into crisis and will now phone me or her support worker. Her support worker is amazing. She can talk to her about things she will not tell me. I cope much better knowing she has the support worker now.

We received completed questionnaires from carers and spoke directly to the families of five people with BPD. All described themselves as being dissatisfied with the diagnostic process and all described difficulties for their relative in getting a diagnosis. The families felt excluded from the process, that their opinions were disregarded and they were given no advice on how to help.

“All the psychiatrists I have spoken to appear extremely reluctant to change the diagnosis, going by what they read in notes instead of getting to know her.”

“I don’t understand it. Even though we were there at the assessment they didn’t include us.”

Families reported great stress and anxiety when their relative was unwell, went missing and they could not find out if they were safe.

Staff can often have difficulty with confidentiality issues at these times, understanding the value of carer involvement whilst maintaining their common-law and professional duty of confidentiality to their patient.

Rights

Everyone has the right to agree how much they want family and friends involved in their care and support, have their carer involved, and their views and caring role considered when determining the need for support and services. This reflects the Carers (Scotland) Act 2016 and Article eight of ECHR, respect for private and family life.

What we asked about

We asked what carers thought kept their relative or friend well, what level of support they received and what might help in the future.

What carers told us

We received completed questionnaires from carers and spoke directly to the families of five people with BPD. All described themselves as being dissatisfied with the diagnostic process and all described difficulties for their relative in getting a diagnosis. The families felt excluded from the process, that their opinions were disregarded and they were given no advice on how to help.

“All the psychiatrists I have spoken to appear extremely reluctant to change the diagnosis, going by what they read in notes instead of getting to know her.”

“I don’t understand it. Even though we were there at the assessment they didn’t include us.”

Families reported great stress and anxiety when their relative was unwell, went missing and they could not find out if they were safe.

Staff can often have difficulty with confidentiality issues at these times, understanding the value of carer involvement whilst maintaining their common-law and professional duty of confidentiality to their patient.

If the person with BPD wishes no disclosure, these wishes must be respected, but staff should regularly revisit this decision. Careful consideration is needed on how the carer can still be offered support and general information, especially if the carer is to be responsible for ensuring the service user is safe and well at home.

“No one told me anything. None of the doctors would speak to me because it was confidential. I didn’t have a clue. I was given no assistance, no support, no one would speak to me, and no one said a word.”

“I am her mum – she could have just said ‘they are here and safe’ – just a hint that they were there.”

Carers are usually the first to be aware of a developing crisis. Often at times when professional help has not yet been established or is unavailable. They are often best placed to notice subtle changes in the person for whom they care, and usually the first to notice the early warning signs of a relapse.

Getting support was a great relief for some, especially in a crisis situation. Although this was not universally available, and negative and unhelpful attitudes were upsetting for families:

“They won‘t admit to hospital because of BPD. They refuse to deal with it. They seem to think it is not real, it is made up – they see it as someone seeking attention.”

Those who did manage to link in with carer support groups found them very helpful.

Comments from cares on how to make some positive change included: more collaboration between families and mental health teams, a sensible approach to confidentiality and a better understanding of BPD as a genuine condition allowing appropriate support to be put in place.

Appendix One

Key

  • Most-more than 80%
  • Majority – 56 to 80%
  • About half – 45 to 55%
  • Minority – 20-44%
  • A few – less than 20% Very few – less than 10%

Appendix Two

Mental Health Act analysis

Most of the time when people become unwell they will agree that they need treatment, but sometimes people are unwilling or unable to agree to treatment. The Mental Health Act sets out when and how people can be treated, taken into hospital against their will, what their rights are and the safeguards which ensure these rights are protected.

The Mental Health Act applies to people who have a mental disorder; this means any mental illness, personality disorder or learning disability, however caused or manifested.

The Commission has a duty to report on the use of the Mental Health Act in Scotland and we produce regular reports about our statistical monitoring. We check that all relevant paperwork is correct. We look closely at the use of detention. Latest figures from 2016/17 show that mental illness accounts for the vast majority of people detained under the Mental Health Act.

Mental illness alone accounted for most (89%) of new short term detention treatment certificates in 2016-17, mental illness with personality disorder accounted for a further five per cent of these detentions. Two per cent of these detentions related to a diagnosis of personality disorder (PD) only. The rates of people with PD alone detained under this type of order have changed little over the past 10 years.

We undertook further work to examine detentions that included PD to see if there were any common themes arising. We selected a random day in March 2017 and identified all Mental Health Act orders open on that day (point prevalence) where PD was mentioned in the criteria for detention.

We looked further at these orders and eliminated those where there was associated mental illness or learning disability. This resulted in 16 detentions under the Mental Health Act and 10 detentions under the Criminal Procedure (Scotland) Act 1995, where PD on its own was the criteria for detention.

We looked at each individual case; we reviewed the detention form completed and looked for information on the reason for admission and the type of PD identified.

From this limited review of individual cases and the paperwork we received, we concluded that there did not appear to be inappropriate use of mental health legislation in relation to these people with borderline personality disorder (BPD) alone.

There may though be occasions we are not aware of, when it may have been appropriate to use detention under the Mental Health Act but it was not used.

Mental Health Act

Of the 16 detained under this Act, two were male and 14 female. BPD/Emotionally Unstable PD was given as the diagnosis in 12 cases. The remainder were organic, dissociative or mixed aetiology PD.

Age range was predominantly 45-64 (three under 25).

Except for one short term detention certificate (up to 28 days), all were detained under either a compulsory treatment order or a community based compulsory treatment order. Reasons given for the need for detention related to severe self- harm or suicidal thoughts. Only one was a first episode of detention, all the rest had a history of detention.

Criminal Procedure Act

The demographics in this group were quite different. Of the nine detained under this Act, all but one were male. There was only one case where Emotinally Unstable PD was given as the diagnosis, others included organic, dissociative, anti-social, paranoid, narcissistic and mixed PD.

Seven were aged 25-44, one 45-64 and one aged 65-84.

All were involved in serious offences resulting in admission to hospital. Three were subject to compulsion orders, three to compulsion order with restrictions and two were on a transfer for treatment direction from prison to hospital. Five were first episode admissions to hospital.

 

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