This week brings with it the conference of the British and Irish Group for the Study of Personality Disorder (BIGSPD) . BIGSPD gets a lot of criticism as an organisation but I’m going to suggest that despite it’s flaws, it’s a democratic organisation with substantially more co-production than most. When I say most, I’m not aware of any organisation that involves the recipients of services to the same extent. BIGSPD has a lived experience co-president and people with lived experience make up around half of the executive committee, which Hollie and I both serve on.
It’s likely that we’re going to talk to a few people about “specialist” out of area placements for people who recurrently self harm and feel suicidal this week, so we wanted to make sure that some of the evidence that suggests “specialist” placements might be a poor option is at the top of our blog page.
In this blog we will be looking at the idea of a specialist placement to provide therapy and keep people safe, and float the idea that they aren’t specialist, the therapy is far from ideal and that they do not keep people safe. Some would say that they make things worse.
The Use of a “Specialist Placement” is contrary to all current quality guidelines
It is a fact that the use of compulsory placements is against the NICE guidelines and the recommendations of the National Confidential Inquiry Into Suicide and Self Harm. NICE tell us to:
“ensure that when, in extreme circumstances, compulsory treatment is used, management on a voluntary basis is resumed at the earliest opportunity”. This is entirely incompatible with the decision to compel people to go to a unit far from home for long period. NICE also tells us not to think about the possible harms of admission, but the “likely harm that may result”.
The NCISSH words their advice a bit stronger. They tell us “Admission to inpatient care should be avoided where possible”. They highlight out of area placements as an increased risk factor for suicide, leading to NICE advising“For people admitted to hospital outside the area in which they live, take into account the higher risk of suicide after discharge”.
Specialist Placements are not Special
Some areas of inpatient psychiatry have quality standards which mean units can be accredited as specialist units. No such system exists in the world of suicide and self-harm, nor in the field of “personality disorder”. As such, a unit becomes specialist by telling the world that it is special. The worst inpatient unit in the UK could change its title to specialist personality disorder unit tomorrow without breaking any rule or regulation. While the Care Quality Commission do inspect the locked rehab units that claim to be specialist, they are inspected as generic locked rehabilitation wards. Their claims of specialism are not interrogated.
Within this field, people are often sent to “specialist” units to receive therapy. The one most commonly offered is Dialectical Behaviour Therapy. DBT was created by Marsha Linehan, someone who herself survived severe self-harm, suicide attempts and prolonged psychiatric admissions. In the DBT manual, she writes “There is no empirical evidence that whatsoever that involuntary intervention or psychiatric hospitalisation decreases suicide risk in any way”. She adds that the aim of DBT is to work with people when in crisis, not to remove people from the environment where they live. When doing the comprehensive DBT as recommended in the NICE guidelines, patients admitted to hospital will need to be able to talk their way out in order to continue to access therapy. The therapist will not continue therapy on the ward. Obviously compulsory treatment in a locked environment is a run and a jump from the DBT with the evidence base that Linehan described and NICE recommend. NICE also recommends being offered a choice of therapies rather than compulsory DBT. We rarely see one therapy offered adherently by qualified clinicians, let alone a choice of therapies.
There is no study describing the therapy available in “specialist” units. Part of the reason we started Beam was because we visited a number of units and found the therapy on offer was primarily provided by unqualified staff. When we meet with staff who work in ‘specialist’ units, they typically described how they have never received any specialist training. One of the most uncomfortable training sessions we ever took part in was for a large provider where the people present seemed totally disinterested. They played on their phones through most of it and that would have been a problem if the ward manager had seen them, had he not been doing the same himself. When we asked why people were so distant they explained that they used to be a rehab ward and had been told they were becoming a specialist “PD” ward the following month. They seemed to exude a contempt for the people who were given a personality disorder diagnosis. It was a job no one had applied for, that no one wanted and we pitied the people who would be admitted to that “specialist” environment.
The Radio 4 documentary “The Forgotten Patients” describes a number of experiences in “specialist” units. One of the key moments for us was a lead member of staff in not only a “specialist” unit, but a centre of excellence, describing how none of the staff there had any specialist training. This could be an aberration but it fits 100% with our experience.
What does “specialist” prescribing look like?
The NICE guidelines tell us “Antipsychotic drugs should not be used for the medium- and long-term treatment of borderline personality disorder”. Our experience is that this guideline is routinely ignored in units that brand themselves as specialist. We wrote the paper Clozapine Concerns after being shocked at the use of long term powerful antipsychotics in “specialist units” that we very rarely see in the community. While the only study we’re aware of that surveyed Drs opinions on the use of clozapine found that the majority disapproved, there is a lone voice calling for the use of clozapine to be increased. That voice comes from a specialist unit. There is a study describing positive experiences by patients taking clozapine for “BPD”. This study was carried out in a “specialist” unit by the people who were providing the care.
Hospital keeps people safe
“They need to be sent there to keep them safe” is something we hear a lot. We have covered how placements increase the risk of suicide and how the creator of DBT is emphatic there is no evidence for their use to reduce it. Sadly some people we know who were sent to placements against their will to be kept safe never returned. We have no intention of singling out one provider but these headlines reveal the nonsense of the ”to keep them safe” policy.
In summary, the “specialist” placements offer care that arguably diverges significantly from the NICE guidelines. BIGSPDs own report describes some horrific individual experiences as well as significant concerns about this area of practice. It is entirely possible that when people have the most severe difficulties, a specialist response is to jettison what is seen as quality treatment and do things differently out of necessity. It could also be argued that maverick practices thrive in closed institutions with reduced peer scrutiny and restricted family access.
If you watch Panorama you’ll know that poor treatment of people who recurrently self harm and feel suicidal is not unique to the private sector. We both walked away from the NHS when our concerns about the harms being done in the name of care couldn’t be heard. The difference is that the NHS keeps people detained for significantly less time and doesn’t give out leaflets with “specialist” written all over them.
We would like to talk to you about alternatives to “specialist” placements. We can talk about how the last 5 people we worked with who were seen as NEEDING a specialist placement were supported to live in the community instead. They had 1250 bed days between them in the year before we supported their discharge. 2 in the year after. That’s a reduction in bed days of over 98%.
You might notice that we are criticising a specialist service while claiming to be one ourselves. Between us we have qualifications in delivering and experience of receiving Integrative Counselling, DBT, SCM, Occupational Therapy, CBT, Group Analysis, primary care therapy, CMHT, Home Treatment, peer support, hearing voices groups, inpatient care and an MSc in Personality Disorder. We are part of a genuinely co-produced service. We both sit on the executive for BIGSPD and the Royal Collage of Psychiatrists Expert Reference Group for Stigma, Labelling and ‘Personality Disorder’. While we have quoted some facts and provided some links, we’re asking you to make a judgement on what narrative to believe.
Providers of “specialist” services have been invited to debate the ethics of their mode of treatment with us at previous conferences. They have declined. We have not. There are plenty of opportunities to discuss all the above with representatives of “specialist” services in the foyer at the conference and we invite you to talk to us as well. You can decide which narrative sounds more plausible.
If you want to try to avoid placements either by us doing therapy, training or thinking with your staff, do get in touch. You can use the contact form on the site, message us on twitter, facebook or linkedin or if you’re at the conference, shout as we walk past you.
We are holding a facilitated day around Avoiding Placements In central Manchester on Wednesday 13th September
Click here to book a place
Keir & Hollie