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

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

Assessment and diagnosis

My psychologist handled explaining the diagnosis well and gave me information. I found this enlightening and helpful. It helped me understand how I was feeling and was a huge relief.

Rights 

People have the right to information about their diagnosis in a way that they understand, and an opportunity to discuss this with the team providing care and access to mental health services when they need them. This reflects Article eight of the European Convention on Human Rights (ECHR) and the Patients’ Rights (Scotland) Act 2011.

What people told us at consultation

People varied in their reactions to their initial diagnosis; from finding it a huge relief to having a less positive experience, with lengthy delays.

What we then asked about

We asked people with BPD about their experience of assessment and receiving their diagnosis.

Current guidelines are clear that the assessment, diagnosis and treatment of BPD is the remit of mental health services. The National Insitute for Health and Care Excellence (NICE) guideline on the recognition and management of BPD states:

Community mental health services (community mental health teams, related community-based services, and tier two/three services in child and adolescent mental health services) should be responsible for the routine assessment, treatment and management of people with BPD

NICE guidance relates specifically to services in England and Wales, however, for NHS Scotland, the standards are generally considered to be helpful in the provision of best practice for clinical staff.

The recent Royal College of Psychiatrists in Scotland report offers further guidance on diagnosis and formulation, endorsing the practice of:

‘Making a diagnosis collaboratively with each individual, including a full formulation of their particular situation. This should include an assessment of the person’s strengths and areas of difficulty, and be linked to a shared treatment plan with short and longer term goals.’

It suggests that diagnosis should be based on ‘an understanding of the person’s presentation over a significant period of time’, not on a single interview and should ideally involve family or carers who know the person well.

What we were told by people with BPD

Assessment process

People described a wide range of experiences of assessment. Where there was a sense of collaboration between individuals and professionals, the experience of assessment was described positively and people said this approach should be more widespread.

“The diagnosis was reached over time through contact with my CPN and although it was a slow process I felt supported along the way. I was not officially diagnosed until I met with the psychiatrist.”

However, the majority described the experience negatively, with a feeling of assessment being ‘done to’ rather than ‘in collaboration with’ them. Some were unaware of having been assessed for BPD and there was little discussion with them about how their diagnosis was reached; Questionnaires or assessment tools were sometimes used with little explanation or support.

“No formal assessment tool was used. I was not told I was being assessed for BPD. Did not speak to family or friends. Did not listen to my view as to why I did not agree with BPD diagnosis, resulted in me feeling dismissed and very angry.”

“I didn’t know I had this diagnosis until I was discharged and I never got an explanation of it.”

Only a minority said family and friends were consulted, or invited to comment, during the process.

“At the time I was given the diagnosis I was not completely capable of taking it in… I wish someone had informed my children as I could not tell them, I didn’t know how. It took me years to sit down and explain it to them.”

How the diagnosis is given

The majority said the diagnosis of BPD was made by a psychiatrist. A few were diagnosed by their GP, CPN or psychologist.

The manner in which the diagnosis was given made a difference. The importance of non-judgemental attitudes, a compassionate approach and having time to discuss the diagnosis was consistently highlighted as being important.

“I had already realised that I had BPD prior to having a breakdown. My psychiatrist discussed with me the possibility that I might have another diagnosis but decided that BPD was more accurate. From the start, I was treated with respect by psychiatrists.”

“The psychiatrist in hospital was good, they explained what BPD was and staff on the ward printed out info from MIND.”

Positive experiences of therapeutic relationships helped reduce the sense of shame and blame that might be experienced when receiving the diagnosis; but these emotions were present in the face of perceived staff insensitivity, and inadequate discussion or explanation.

“It was deeply distressing. The delivery was abrupt, insensitive, and unsupportive and left me feeling I was simply faulty.”

“During one of the weekly ward rounds, with a room filled with doctors and nurses, I was told ‘You wanted a diagnosis – you have borderline personality disorder’. I asked what that meant and was told it was me. I felt I was met with a cold, not a good attitude, and I felt ashamed. There were no further explanations and I just felt confused.”

In this case, discussion about the diagnosis was avoided altogether:

“I was diagnosed by one psychiatrist, but when my doctor changed they told me they didn’t believe in labels and would not discuss it with me. I found this unhelpful, I wanted to know more.”

In other cases, although a diagnosis of BPD had been made, the individual was not informed until much later:

“I only found out about my diagnosis a year after I had been diagnosed when I requested a copy of my medical notes.”

“I was apparently first diagnosed in 2010 with BPD but was not told until 2016. I am still angry and upset by my experience of learning about my diagnosis.”

Finding out about the diagnosis by accident, perhaps by seeing the diagnosis in medical records or correspondence was particularly distressing. More than one in 10 of the people we consulted described this experience.

“I have never been told my diagnosis face to face and only found out by being copied into an e-mail by mistake.”

“No one gave me a diagnosis, I found out by a statement written for me by my CPN when I applied for personal independence payments.”

“I only found out about the diagnosis by accident. I was seeing my GP at a normal clinic appointment. My GP looked on computer for any correspondence from the then psychiatrist… They asked if EUPD meant anything to me… then read on further in the letter and said ‘oh no, you weren’t meant to know that – it says here to not disclose to the patient’.”

Information about the diagnosis

Lack of information about the diagnosis was consistently highlighted as a significant problem. The majority told us they received no information when the diagnosis was given. A few were given leaflets and information about websites developed specifically for BPD.

“I was assessed after several periods of crisis by the psychiatrist and told that I had BPD and there were no drug treatments available to help me. I was not given any further information.”

“My psychiatrist gave me statistics but no useful information.”

Most people had to find out about the illness for themselves and the MIND website was consistently highlighted as a very helpful source of information.

“MIND is one of the best sites for explaining the diagnosis in a positive light.”

“USA sites are really unhelpful and very negative – they also talk about dangerousness and I feel I am more likely to hurt myself than anyone else.”

Suggestions about how information about the diagnosis could be improved included:

“Users should write their own leaflets and information as professionals don’t always know how it feels.”

“A follow-up appointment offered quickly after diagnosis, with an expert who has understanding and can help you with your goals would be better.”

Overall people told us that assessment and diagnosis should be improved. It should be collaborative, involve family where possible and the process should be more ‘humanised’; carried out by professionals who listen, are caring and see the person not the diagnosis.

Delays in diagnosis

A delay in being given a diagnosis of BPD was a common issue raised. From first symptoms to a diagnosis of BPD being given took over five years for most respondents. Very few said they were given the diagnosis within one year.

“I have had 12 years of contact with psychiatric services… my CPN suggested my diagnosis to my psychiatrist and I got my diagnosis two years ago – it made sense to me.”

“I had been experiencing symptoms and telling doctors, counsellors and therapists about them for more than 10 years. On receiving a BPD diagnosis, my symptoms seemed so incredibly textbook that it was astounding that nobody had made the connection before. With hindsight, the diagnosis should have come years earlier than it did.”

What staff told us

We received 84 responses to our survey sent to consultant psychiatrists. The majority viewed it as their role to make the diagnosis of BPD and inform the patient.

Some consultants told us patients had often received the diagnosis before being referred to their service.

We asked how diagnosis of BPD was made. Some consultants described a clear, thorough and multidisciplinary diagnostic process:

“We have a pathway – typically the patient would be seen by a member of a multidisciplinary team (MDT) and discussed at MDT. If borderline traits are impacting significantly on functioning and requiring ongoing mental health team input, then they are typically referred to medic for diagnosis. This is discussed with the patient and any relatives/carers, with discussion of treatment options and expectations. This would then be discussed with the whole MDT to ensure accurate formulation, consistency of approach, with reference to the local care pathway.”

(Comment by general adult psychiatrist

“Multimodal structured assessment including detailed history, with emphasis on adverse experiences and developmental history, structured measures, a trait-based interview, informant histories, collaborative formulation and multidisciplinary review.” (Comment by specialist personality disorder service)

A small number of consultants mentioned the use of screening questionnaires and standardised assessment tools in making the diagnosis, but many responses offered little detail of how a diagnosis of BPD was made.

A number of respondents made specific reference to family involvement in the assessment process. Most said they did involve family and friends where appropriate, in contrast with the experience of people with BPD as detailed earlier.

“The patient sees a medic and/or CPN over a number of appointments and if possible a member of family is invited to come to clinic for collateral history.”

Psychiatrists said patients did not always want their family to be involved. When consent was given, sometimes family members were difficult to contact.

We did not ask GPs specifically about diagnosis or assessment, but some did comment on this aspect of care.

“I would estimate that I see patients with BPD/EUPD once per day; that includes those in whom I am very suspicious are likely to have BPD/EUPD but have not been formally diagnosed. The problem is to diagnose this condition accurately is challenging and time consuming for mental health experts… In addition, many patients would not agree to be assessed for this condition.”

Both people with BPD and GPs shared concerns that a diagnosis of BPD, once made, sometimes led to services being withdrawn or access to mental health support being denied.

“I’d like to see people with BPD afforded the same degree of access and support to our mental health services, as for other patients.”

“Diagnosis of BPD/EUPD, when made, appears to automatically result in discharge from all specialist input and acts as a bar to any further referral/GP request for assistance in management.”

These experiences raise concerns about the equity of access to mental health services for people diagnosed with BPD. The practice described is in direct conflict with recommendations from the NICE guidelines and from the Royal College of Psychiatrists.

‘People with borderline personality disorder should not be excluded from any health or social care service because of their diagnosis or because they have self-harmed.’

Treatment

I am fortunate to live in an area that has a dedicated therapy. This holistic approach has transformed my life more than I could have imagined. Before I was self-harming all the time, I felt a successful suicide was imminent and had ditched all my friends to stop them rejecting me. I’d not been able to hold down a job and was living on benefits, in poverty. Following therapy, now five years ago, I hardly ever self harm. On the rare occasion that I have, it’s been minimal. The support and care that I have received from the therapy team and the community mental health team could not have been better or more empowering.

“Recovery from BPD is the goal of treatment, and a realistic prospect for many.”

(Comment by consultant psychiatrist)

Rights

Everyone has the right to adequate healthcare for their physical and mental needs, and NHS care which is patient focussed and encourages participation. This includes access to mental health services including early intervention, good support from primary care and the local authority, if assessed as needing these. This reflects Articles two and Article three of the ECHR and Article 25 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).

What people told us at consultation

We heard about the difficulties accessing psychological therapies, the benefits and drawbacks of the different types of therapies and a general lack of support outside of these therapies.

What we then asked about

We asked about treatment and support for people with BPD received from a range of different sources and how helpful they found it.

What we were told by people with BPD

Medication

No drug is specifically licensed for the treatment of BPD. People with BPD often experience co-morbid mental illness, with lifetime prevalence of depression and anxiety disorders being particularly high. It is important that co-morbid illness is recognised and treated when it occurs.

National Institute for Health and Care Excellence developed a quality standard, Qs88, which noted:

‘No drugs have established efficacy in treating or managing borderline personality disorder. However, antipsychotic and sedative medication can sometimes be helpful in short-term management of crisis (the duration of treatment should be no longer than one week) or treatment of co-morbid conditions.’

Some health boards in Scotland have developed local guidance in this area. NHS Highland’s ICP for personality disorder advises:

‘No drugs are licensed for the treatment of personality disorder in the United Kingdom (UK) and evidence for efficacy of drug treatment is scarce… Medication should be avoided as the primary or sole treatment of personality disorder.’

Despite this, the majority of people with BPD responding to us said they found medication helpful, with around a quarter telling us that it was not helpful.

Medication to help with symptoms of anxiety and insomnia, especially during a crisis, were reported as particularly helpful.

“I need medication – I am past the stage of trying without it; I would be hospitalised immediately.”

“Medication is trial and error and can take a long time. Medication for anxiety, sleep and controlling symptoms gets you stable and can take the edge off what can be a huge thing, getting you to a place where you are able to function again.”

In response to our survey, 75 consultant psychiatrists answered our questions about prescribing. The most commonly prescribed medicines were antidepressants, antipsychotics, and then anxiolytics (anti-anxiety medications). Mood stabilisers and hypnotics (sleeping tablets) were less frequently used.

A number of GPs commented negatively on the use of medication and highlighted the importance of providing psychological therapies:

“Treating patients with antidepressant medication without giving them the diagnosis and the knowledge that medication will not always/often help is a disservice.”

“I think it’s important for diagnosis to be made early so that the appropriate non pharmacological support can be given – not a condition that responds well to medication but patients seem to end up on multiple complex medication regimes for both physical and psychological symptoms.”

Psychological therapy is considered to be a first-line treatment for people with BPD. A number of therapies have been developed for the condition, including Dialectical Behavioural Therapy (DBT) and Mentalisation Based Therapy (MBT). These approaches are among those that have shown some efficacy in treating the symptoms of BPD. Systematic reviews suggest that more research is needed in this area.

NHS Education for Scotland set out a ‘matrix’ to guide health boards in their planning and delivery of evidence-based psychological therapies. This matrix provides information on the range of therapies, on the strategic planning of them and of the supervision and training required to support the delivery of these therapies.

Sixty-one people told us that they had received some kind of therapy.

Types of Therapy

In Figure 1, STEPPS is an abbreviation for Systems Training in Emotional Predictability and Problem Solving. EMDR is an abbreviation for Eye Movement Desensitisation and Reprocessing.

Other types of therapies included equine therapy, schema therapy, safety and stabilisation, person-centred therapy, hypnotherapy and psychotherapy.

“There has been little impetus to provide psychological treatment, until my last crisis, following an admission. I had schema focused therapy which has been very helpful. If I had psychological treatment in a more timely way, my admission might have been avoided.”

“When I eventually accessed trauma therapy, I had treatment for 14 months. My life improved and if I need ‘top up’ I can get this to stop the crisis hitting harder.”

“Having spent many years seeing psychologists etc, DBT has been an eye-opener and a lifesaver. It’s the only thing that has made a tangible difference to my understanding of myself and has shown me ways to manage this condition better.”

However, not all comments were so positive.

“I’ve not received or been offered any of the therapies that are on this form. And yes, that frustrates me immensely.”

“I was horrified when they offered me CBT via the telephone.”

Local Delivery Plan Standards are priorities that are set and agreed between the Scottish Government and NHS Boards to provide assurance on NHS Scotland performance. In relation to access to psychological therapy, the current standard is that 90 per cent of patients commence treatment within 18 weeks of referral. In the quarter ending March 2018, the Scottish Government reported that 78 per cent of people were seen within 18 weeks.

Most people we consulted said they waited between 13 weeks and six months for their therapy to start, and that after treatment, some were referred on to another service.

“There is a one year waiting list for STEPPS – you should be able to get straight on it.”

What we were told by staff

Many of the GPs and consultant psychiatrists surveyed also spoke about psychological therapies.

Psychiatrists generally reported having a range of therapies available locally, whether within their own mental health teams or from dedicated psychology services, with CBT, MBT and DBT among the most commonly mentioned. Positive outcomes were described with psychological therapies, particularly when patients had been given the diagnosis and offered interventions at an early stage.

“Early diagnosis and appropriate psychological treatment from experience has better outcome and more likely success.”

“Patients with BPD/EUPD can often make use of psychological therapies and make significant behavioural changes. They can learn to manage emotions with treatment too.”

However, inequity of access to psychological therapies and long waiting times for psychology were stated as common concerns:

“Lack of appropriate psychology access and clinician time to make effective changes.”

“I have found impressive outcomes from DBT; unfortunately, this is not offered where I currently work, but I am hopeful this will change in time.”

Whilst dedicated psychology services were valued, it was also suggested that community mental health teams (CMHTs) would benefit from more skills in delivering therapies:

“Integrate ‘psychological therapies’ services into mental health – a general mental health service that can’t deliver psychological therapies is not fit for purpose.”

The importance of considering trauma was also raised:

“BPD is not necessarily a chronic disorder. It is important to think about co- morbidities including trauma and treat those, as well as supporting the person on pathways that facilitate reflection and emotional regulation.”

“Longitudinal key working with acceptance that trauma, which is at the core for most individuals given a label of BPD, is everyone’s business.”

 

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

 

 

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