Christmas is a busy time for the elves as we need to balance our polarised skill sets of making children’s toys, and summarising the latest research and policy. One small slip and Tracy in Edinburgh wakes up to a concise report on an RCT, while the internet is broken by the uploading of a Barbie Fun Palace. Between the research papers, gift wrapping and reindeer excrement, there are multiple challenges over this period.
A shining light for us has been the anticipation of the Royal College of Psychiatrists Position Paper on Personality Disorder. A position statement sets out a group or individuals view on a matter and provides recommendations as to how that view can be implemented. This is a new report that explores “how to improve the care of people given a diagnosis of personality disorder”. While it is not a piece of research in itself, it makes reference to many research projects, policies and guidelines that are seen as central in this field. Like the NICE guidelines, this should be read as a summary of what works and what is helpful in this area, largely based on expert opinion.
The document doesn’t actually describe how it came together. The editors of the report are well known psychiatrists in the field who are either members of or co-presidents of the British and Irish Group for the Study of Personality Disorder. Within the working group that compiled the report, there’s a good representation of different services with a strong CAMHS (child and adolescent mental health services) presence being reflected in the document, and also a few carer representatives being listed. As the recommendations link to the NHS Long Term Plan, fittingly there was consultation with NHS England.
What does it say?
Similar to the NICE guidelines for Borderline Personality Disorder (2009), the report places an emphasis on collaborative working, organisational (rather than team) responses and an optimism that people can be helped.
It begins by mapping out who the authors are talking about. They estimate those diagnosable with a personality disorder as being up to 4% of the population of England (2.2 million people). Of those, around 224,000 will need evidence-based treatment in secondary care (CAMHS and CMHT). A further 22,000 will need more intensive specialist treatment, while 2,240 inpatient beds will be required.
The authors recognise that this is not necessarily akin to current provision, and make a number of recommendations that could go some way to achieving this.
- The authors identify that a formulation-informed, long-term therapeutic approach is helpful.
- Diagnosis is favoured, with the authors advocating that it be made alongside a co-constructed biopsychosocial formulation. They also encourage early diagnosis (14+) to facilitate an effective therapeutic response.
- The authors consider the psychosocial and genetic factors that impact on those given this diagnosis and talk about the role (or lack of role) for medication and the dangers of over-prescribing.
- There is a focus on the need for sustained therapeutic relationships and a recognition that it is helpful for services to be able to “hold someone’s story”.
Next, we look at the needs of staff. There is a recognition that when staff feel useless and hopeless, their ‘help’ can be harmful. The explicit workforce requirements (quoted from the report) are:
“1 Selection of suitable staff able and willing to work at the required emotional level.
2 Good training, to understand the nature of the disorder and develop the necessary approaches and skills for it.
3 Supervision and reflective practice with adequate time to reflect on the personal impact of the work.
4 Formal and informal support (usually though healthy team functioning).
5 Personal therapy may also be required, depending on the individual circumstances.
6 Experts by experience (and carers) should be involved in training.
7 Exposure to and experience of working in or with the different elements and tiers of the whole pathway.”
Recommendations for organisations
Finally, we have some thoughts about organisations. The authors point out that we can’t just “do therapy to people” in isolated teams and suggest that risk has to be managed therapeutically; stating that “the inevitability of serious, untoward incidents must be recognised within a framework, based on a trusting and secure relationship between senior management and clinical staff”. This sentiment appears somewhat contradictory to the zero suicide policy adopted by many parts of the NHS.
The General Recommendations (quoted from the report) are:
“1 The College will ensure that all psychiatrists are trained in the assessment and diagnosis of personality disorder, theories of aetiology, and treatment approaches including optimisation of the therapeutic setting, relational practice, communication of the diagnosis, the appropriate use of medication and specific psychotherapies. This will happen throughout their core and specialist training, and continuing professional development. This may require some re-education in consideration of young people and neurodevelopmental disorders; this should be given equal weight to the training in conditions such as ADHD and autistic spectrum, and to aid identification of the different therapeutic needs
2 The College will play a leading role in developing suitable training for other professional groups through its relationships with relevant national bodies. As well as health, this includes criminal justice, police, social services, education, housing, homelessness and others.
3 Each NHS Trust, or equivalent, should appoint a Personality Disorder Lead, with responsibility for ensuring that a coherent clinical pathway across all tiers is available, including within CAMHS and the transition to adult services.
4 Patients with personality disorder should not be denied mainstream services based on diagnosis alone. Mainstream services should make suitable adjustments to support access for patients with personality disorder, ensuring equal access to both men and women and ‘hard to reach’ groups, such as young men who may be in prison or on licence with probation services.
5 Where clinically indicated, all patients should have access to locally accessible Tier 3 provision, within an appropriate setting, with suitable staffing and meeting nationally recognised quality standards (for example, the RCPsych Enabling Environments award). The Tier 3 services work as an adjunct to the local Tier 1 and Tier 2 services and with mainstream locality and acute teams.
6 Each adult Tier 3 service needs to have access to a specialist residential Tier 4 personality disorder service which should have the capacity to work with those who are detained under mental health legislation as well as voluntary patients. These Tier 4 services should work collaboratively with the lower tiers of services from which its patients are referred and should include secure hospital provision for those who pose serious risks to others while untreated or partially treated. Similar specialist arrangements need to be developed in CAMHS.
7 Many patients with personality disorder, sometimes with various comorbidities, are placed in locked residential rehabilitation facilities. These units often lack suitable programmes and expertise for effective engagement and treatment. This system, and the individuals in it, needs to be reviewed to ensure these patients are treated in clinically suitable services which are least restrictive and are integrated within local and regional services (Tier 3 and Tier 4).
8 Services for children and young people should offer a full range of specialist outpatient and inpatient interventions for those with emerging and diagnosable personality disorders. Their treatment should be coordinated with local specialist services for adults with personality disorder and sound transition arrangements between services should be assured when necessary.”
More detailed recommendations are made under the following headings:
Diagnosis and formulation
Recommendations in this section include the need for diagnosis to only be given by those trained to do it, only be given after thorough assessment, and to consider “what happened to you” rather than ticking off symptoms by asking “what is wrong with you?”. The recommendations also make it clear that doctors should be writing to patients and copying in clinicians rather than the other way around.
Engagement, relational practice, co-production and shared ownership
The emphasis placed by authors on people having power to shape the services they receive, people with lived experience training to work in services, and people with lived experience moving on to become clinicians is welcome, essential and heart-warmingly radical.
Training and workforce development
The authors acknowledge that training for people to work in this area has not been optimal so far. Recommendations are made around reflective practice but also specific supervision requirements are given (1 hour supervision for every 10 hours of client contact).
A whole pathway approach
The pathway recommendations are the most detailed, which is unsurprising given the emphasis on organisations following people through tiers of support. The input required on different tiers is described with the idea that people flow through, up and down; rather than the different services being separate and isolated. There’s often a recognition that people who get this diagnosis can ‘fall through the gaps’ – this is a call to reduce those gaps by overlapping.
Strengths and limitations
This document begins by saying it was inspired by the Personality Disorder Consensus Statement written in 2017. The consensus statement pooled a range of expert and lived experience and came up with the opening “Most of us would rather not use the term (personality disorder) at all… We would like to abandon the term ‘personality disorder’ entirely”. My strongest memory of the launch of the consensus statement was author Sue Sibbald (who deservedly featured in the new year’s honours list) clearly stating: “My personality is not disordered”. Well, for the purposes of this document it is. Despite claiming to be driven by this statement, the report frequently refers to “people with personality disorder”, “people with severe disorders”, “parents with personality disorder” and other statements which directly contradict the sentiments of the personality disorder consensus statement. Despite this, the authors include an appendix stating the need for further work evaluating the diagnostic label and considering alternative approaches.
In addition, there was only one lived experience practitioner listed among the authors and consulates, which may have had an impact on the opinions expressed regarding diagnosis and how they were conveyed in the report.
Finally, the position statement mainly covers England. Whilst the report cites papers from Northern Ireland and Scotland, there is a striking lack of evidence reported from Wales. This is important as 1/7th of Welsh trusts still do not have a specialist service 10 years after NICE recommended all trusts should.
Despite these limitations, the report holds a number of strengths. It clearly has people’s best interests in mind and is more explicit than the NICE guidelines about how services should be delivered. It is clear about how previous deficiencies in training, service organisation and staff support have caused harm and describes measures to remedy and ameliorate their effects. I’m particularly pleased with the inclusion of people with lived experience in providing services and the opportunity for those receiving them to democratically shape what is delivered. In my humble opinion, staff working with patients as equals is the most effective anti-stigma intervention going.
Implications for practice
NICE guidelines have been around for 10 years now and (in my opinion) still not all NHS trusts abide by them. This position statement is calling for an even greater cultural shift. I know some places that will not discuss issues with service users, let alone give them a democratic route to change. The stigma around this diagnosis is entrenched through many layers of services and a move to seeing people with expertise in surviving their difficulties is going to be hard. However, the inclusion of recommendations for all tiers of services, training, ongoing development, reflective practice, personal therapy and lived experience practitioners is promising. Stigma is hard to break, but this report at least provides a comprehensive attempt.
The discrepancy between the number of specialist inpatient beds needed and those currently required is striking. Achievability aside, future reports should aim to evaluate more closely the appropriateness and efficacy of people with this diagnosis residing in units that currently claim to be specialist. Claims that are (in my opinion) dubious at best…
While the report makes recommendations to improve practice, we need to recognise that these improvements are yet to be made. Given the harm and exclusion that can result from a personality disorder diagnosis (NIMHE 2003). I’d be very wary about putting this label on a child unless the doctor is confident that the benefits outweigh the attached stigma.
The way the position statement has approached diagnosis is, in my opinion, tremendously disappointing, but this should not detract from its potential to significantly improve services and attitudes towards those who are given this label. Personality disorder remains a diagnosis, but potentially no longer a diagnosis of exclusion and ideally a label with care, collaboration and support attached.
Declaration of interests
Keir Harding serves on the executive committee of the British and Irish Group for the Study of Personality Disorder with Oliver Dale and Rex Haigh who were the editors of this RCPsych position statement.
The BIGSPD (British and Irish Group for the Study of Personality Disorder) conference is due to take place in Nottingham on 24-26 March 2020. This event will be covered by The Mental Elf and you can follow the live tweeting, podcasting and live streaming at #BIGSPD2020.
Royal College of Psychiatrists (2020) PS01/20: Services for people diagnosable with personality disorder (PDF).
National Institute for Mental Health in England (2003) Personality Disorder: No Longer a Diagnosis of Exclusion. Policy Implementation Guidance for the Development of Services for People with Personality Disorder.