Open Dialogue: reflections on the model and the evidence
March 20, 2015 16 Comments
You can’t work in mental health services for too long without hearing about Open Dialogue.
There certainly aren’t a shortage of bold claims about the model of care used to treat psychosis in a small pocket of Finland, for example, as the Open Dialogue UK website states:
‘They have the best documented outcomes in the Western World. For example, around 75% of those experiencing psychosis have returned to work or study within 2 years and only around 20% are still taking antipsychotic medication at 2 year follow-up’.
And as a well-publicised play inspired by the model suggests, there is a rumour that they have actually eradicated schizophrenia in Western Lapland. These are substantial claims – so substantial that a seriously hard objective look at both their model and the evidence for its success is required to verify them. I wasn’t able to find such an interrogative assessment online, so I thought I’d write one myself.
My aim is to contribute to a transparent, honest discussion about what the effective parts of Open Dialogue might be, and how confident we can be of that. There has been a lot of fervour about this approach, but we also need an impartial examination of the facts. Please do leave comments underneath the post.
I want to make a disclaimer straight away: Yes, I am a psychiatrist, but no, I am neither a particular fan of medication nor a particular hater of talking therapy. I try to appraise the evidence for both objectively. What I am not a fan of is a treatment of any kind being pushed harder than the evidence base should permit. Our patients deserve treatments that have been rigorously proven to work, whatever they may be.
The model
Open Dialogue has been the standard psychiatric model in Western Lapland since the mid-1990s. In short, it sounds very much like a cross between a crisis team and intensive family therapy. When a referral comes in, whoever answers the phone is responsible for organising the subsequent care for that patient. The care involves a series of meetings at the patient’s home, at which 2 or 3 therapists as well as anyone else who is important in the patient’s life come together to share their experience of the crisis, develop an understanding of it and work out a plan. The team try to leave their assumptions and professional models at the door, and there is an added focus on avoiding ‘neuroleptic’ medication (antipsychotics) for as long as possible.
Their practice has 7 tenets:
1) On receiving a referral the first meeting with the patient should take place within 24 hours.
2) The social network of the patient should be invited to take part in the meetings from the outset and for as long as necessary.
3) The treatment should be adapted to the needs of the individual patient and their family, using the most suitable methods.
4) Mental health services will guarantee that certain people will take responsibility for the patient and organise a team that will make decisions with the patient and family about all aspects of treatment.
5) Psychological continuity is guaranteed; staff from different teams will be invited to participate as required.
6) A sense of security should be promoted by tolerating uncertainty, which mobilises the resources of the patient and family.
7) The team should focus on creating a dialogue between everyone in the meetings to create a new language for experiences previously unspoken.
There’s no denying it – all these principles are laudable. However, the most interesting thing that struck me about them is that we already value most of them in NHS mental health services, but struggle due to poor resourcing. They aren’t exclusive to the Open Dialogue model.
Seeing every patient in crisis within 24 hours? We’d love to do that. But in reality the more likely scene is of a nurse quietly holding back the tears of frustration as the duty phone won’t stop ringing. The NICE quality standards instruct that newly psychotic patients should be seen within 14 days and even’s that’s difficult to achieve. The Open Dialogue team clearly have enough staff and resources to be able to see people quickly, which may be an important part of why they do so well, but there’s nothing novel about the idea of early intervention.
Likewise, tailoring the treatment to the specific needs of the patient, taking their wishes and the wishes of their family into account, is also something we try hard to do, and would do better if we were simply properly resourced. Again, the NICE quality standards highlight family interventions, employment, education and support for carers and CBTp (as well as medication) as a range of choices which should add up to patient-centred care.
Similarly, continuity of care as a patient progresses through the system is a well-recognised aim for mental health professionals the world over. Sadly, the fragmentation of NHS mental health services has made this noticeably harder to achieve.
So, many facets of the Open Dialogue model are general qualities of a good service, qualities which could be achieved by improving the current systems we have rather than bringing in a whole new way of working.
However, some of the other facets of Open Dialogue are quite unique to their model. I think the aim to maintain a non-judgmental approach and foster a shared language between the patient and their family has great merit. I’m not keen on forcing people to take a certain narrative for their distress, and if they can find a way of understanding themselves that keeps them safe and well, then great. However, I do have reservations that this is suitable for all patients. Especially where I work in London, perhaps more so than in Lapland, we see an awful lot of extremely psychotic people. People whose mental states are an acute and serious risk to themselves or others, people whose experiences are plainly so extreme that to deny their pathological nature and take immediate action would be irresponsible.
This all links into the related discussion on whether psychosis is something we should be mainly trying to find meaning in, or remove. It’s not at all unusual to see a patient improve from their psychosis and come to the opinion that their psychotic beliefs were all absolute nonsense and they’re relieved to have had them medicated away instead of mused over. I wonder how Open Dialogue would address those patients.
Another issue would be that we see a lot of people who are so psychotic that they cannot engage in a series of meetings, either because they are unable or unwilling to talk, often with marked hostility or confusion. Also, many of our patients either lack any semblance of social network or possess one that actually contributes to their illness. Many would simply refuse to consent to the process, valuing their confidentiality, because they are individualists. The question mark over the cultural generalisability of Open Dialogue is huge.
Finally, I do find it hard to accept a model whose prior aim is to avoid antipsychotic medication for as long as possible. Whether you personally love them or hate them, there is a huge amount of evidence that especially in the early stages of psychosis antipsychotics are tremendously helpful for reducing symptoms and therefore distress. Their research papers (see below for links) note that at least historically they have tried to use only benzodiazepines for the first 3 weeks of treatment. This is a curious plan, as benzodiazepines expose patients to all kinds of side effects (oversedation, falls, paradoxical reactions) without any of the positives of antipsychotics.
The evidence
As I said earlier, some huge claims have been made about Open Dialogue. They are essentially stating that schizophrenia, an illness that for hundreds of years no treatment (including many other talking therapies) has failed to adequately improve has been eradicated simply by a different method of talking. We owe it to our patients to examine these claims carefully.
I chose only to read the quantitative research into Open Dialogue, for the simple reason that only quantitative research could provide evidence for these claims. Furthermore, if we’re going to spend public money on Open Dialogue, quantitative research is the only thing that will prove that it works better than alternative options.
I need to say from the outset, I found the evidence base to be thin. Very, very thin. Whereas a single drug needs to be tested on hundred if not thousands of people to get anywhere near the marketplace, the amount of patients that Open Dialogue has been given to in quantitative studies appears to total 64, and the studies are of poor methodological quality.
The first study of interest is Seikkula et al. (2011a), which compares outcomes of Open Dialogue psychosis patients during two periods (1994-97 and 2003-05) with outcomes for psychosis patients seen by the team before they used the Open Dialogue model (1992-93). During this pre-Open Dialogue period the team still had a non-medication focus and the system of treatment had already been reorganised towards a needs-focused approach, but the specific Open Dialogue model had not been fully implemented. Seikkula et al. (2006) uses identical data but uses only the earlier Open Dialogue group.
The number of patients in each group was low – 46, 18 and 36 respectively – limited further by exclusions, including 9 from the Open Dialogue group that ended up with 18 patients, because patients refused to participate, could not be reached or follow-up or had died. There was no significant difference between the groups over the 2 year follow up period concerning:
• The number of patients given antipsychotics (26-50% started them across groups)
• The number of relapses (less than 30% in all groups)
• Employment status (62-78% studying or working across groups)
The mean Brief Psychiatric Rating Scale (BPRS) scores of patients in the 1994-97 group were significantly lower after 2 years than those in the 1992-3 group (30 vs 24), but this effect had disappeared by 5 years and the 2003-05 group showed no significant difference to the control at either point. More than 80% of patients in each group were free of psychotic symptoms at 2 year follow-up, but again, there was no significant difference between the Open Dialogue groups and the control. The amount of days patients spent in hospital was different between groups, with the control group (25 days) being worse than the 1994-97 group (9 days) and 2003-05 group (14 days).
So this study is the source of the statistics in the introductory quote, but overall, what these results make clear is that Open Dialogue is actually no better than the model that went before it, the simple needs-focused approach. The unusually good outcomes reported in the area must be due to factors other than the switch in model. Could it be that the team, who are dedicated, cohesive and not burnt out, get good results whatever the specifics of their model? Could it be that the area, a highly atypical one compared to the UK, has less of the stressors associated with emerging psychosis? Could it possibly be that all the patients who are going to do badly simply don’t seek out the local service or don’t engage with it, biasing their sample? And lets’ not forget that a third of the 2003-05 sample were excluded – are they very unwell?
Another paper which seems to be the source of so many large claims about Open Dialogue is Seikkula et al. (2003). As far as I can tell, this is the only time that the results of an Open Dialogue team have been compared to those of a different team. The paper uses the same Open Dialogue group from 1994-97 and the same pre-Open Dialogue comparison group from 1992-93 but adds in another comparison group – one from a neighbouring Finnish community that weren’t using Open Dialogue. They investigate the outcomes of only the patients in each group with schizophrenia, not other psychotic disorders, as only that subgroup of patients was comparable in demographics across treatment arms. This raises immediate questions – are the neighbouring community’s patients older, more unemployed, less married? In any case, the resultant groups are absolutely tiny – just 14 patients in the neighbouring community control, versus a barely better 22 and 23 in the Open Dialogue groups.
The results show that the Open Dialogue patients were in a much better state that the control group after 2 years. Only 6 out of 23 patients had relapsed compared to 10 out of 14 in the control group, 15 out of 23 were working or studying versus 3 out of 14 in the control group, and 8 of 23 had needed antipsychotics at some point compared to all 14 in the control group. Days spent in hospital were fewer in the Open Dialogue group, but interestingly BPRS scores weren’t significantly different between the groups (25 vs 27).
The limitation of this study are eye-popping. Anything as minor as the psychiatrist in the control group having a very paternal style of practice (i.e. favouring medication and longer stays in hospital) could have biased the whole thing. Heck, there could be a crack den or a genetically unfortunate family in the control area that skewed the results. The sample sizes are tiny and a group of 14 people is in no way an adequate representation of ‘treatment as usual’ in the rest of mental health services. The Open Dialogue team seemed to keep their patients off medication, out of hospital and in work but their actual levels of psychosis – the BPRS scores – weren’t any different, so are they treating psychosis or just providing awesome social support?
The final study of note is Seikkula et al (2011b). In this study, the notes of every patient aged 15-44 who presented to mental health services in Western Lapland between 1984 and 1994 are examined, the patients are retrospectively diagnosed based on those notes, and the relative rates of diagnoses between two groups (1985-89 and 1989-94) are compared to see if the rates of schizophrenia dropped after Open Dialogue was brought in. The paper states that a comparison between pre- and post-1990 was chosen as family therapy programmes began in the area in 1989. This seems to reconcile poorly with the previous papers that used the 1992-3 group as the ‘pre Open Dialogue’ group, effectively admitting that the 1992-93 group is very similar to Open Dialogue proper.
The authors found that the mean annual incidence of schizophrenia fell from 25 to 10 between the 1985-89 and 1990-94 groups. The fewest cases diagnosed in any one year was 3, in 1994. Brief reactive psychoses rose from 1 to 7 cases per year. The paper also notes that there were no patients staying longer than a year in hospital after 1992. It is from this paper, it seems, that the claim that schizophrenia has been eradicated has emerged. The authors hypothesise that so many of the local population must have been involved with their family meetings that the beneficial psychological effects may have spread, actually preventing new cases of schizophrenia emerging in the first place.
Sadly, there are several more mundane possibilities. The local economic climate may have picked up, or illicit drugs might have been better controlled. The professionals who originally saw the patients, working for a service that is so enthusiastic about reducing psychosis, may have been selective in their note taking at the time, leaving out or not fully exploring key psychotic symptoms. After all, the difference between a ‘psychotic episode’ and ‘schizophrenia’ is only a clinician’s judgement of how soon the psychosis ended. Furthermore, retrospectively diagnosing patients from their notes isn’t exactly accurate and using old notes to establish a regional incidence rate isn’t close to watertight. The claim that the Open Dialogue model has disseminated amongst the local populus, creating a psychosis-resilient social environment, is a huge one and there is no reason to believe it without intense further study. There’s not even a lot of evidence that individual interventions like medication and CBT work for people at ultra-high risk of psychosis, so it’s a real long shot hypothesis.
Summary
My thoughts on Open Dialogue can be summed up in two themes:
Firstly, their model is admirable, but many facets of it, like continuity of care and timeliness in intervention, have been recognised as key components of good care for many decades. The reason we struggle to achieve them in the NHS is because we’re so short on resources, not because we lack the Open Dialogue model. Other facets of the model are more unique but there are huge issues around their generalisablity on social, cultural and individual levels.
Secondly, the evidence which suggests that Open Dialogue works better than any other treatment is slim to none. We have no idea if it’s the general facets of the model that cause improvements (if there are any), or more specific aspects of the dialogical approach. If we’re going to make significant investments in the model in this country, using public money, we need to have more convincing data. A multi-centre UK trial is in the offing and I look forward to the results with an objective eye.
About Alex Langford
The Psychiatry SHO* 
I have read your blogs with interest for some time. I am afraid I can’t agree that you are “neither a particular fan of medication nor a particular hater of talking therapy”, at least I have always got the impression that you are those things. No offence intended as a lot of what you write is very good. (It is one area I disagree with you sometimes, but perhaps that is because I have suffered serious harm from psychiatric drugs taken over a relatively short period.)
I too am interested to see the outcome of Open Dialogue trial in the UK, but can’t image how it could ever be implemented when the cuts to mental health are so severe and all forms of social support (vital to many patients) have been cut or disappeared. You say that the model in many ways exists already in the NHS, but surely these days only as a figment of imagination. Drugs are the first and often the only help offered. Many patients are discharged from services when still seriously unwell. And as you say, the mental health service is fragmented and patients are passed back and forth like parcels between community and crisis teams and wards, each time changing doctor. There is no continuity of care. And always the fear of being left without support before you are ready.
Hi, thanks for the comment and the compliments. It’s interesting you’ve formed that impression of me. Perhaps it’s because as a doctor the medication is what I know more about, so I discuss it more? In any case, in reality I value both equally overall.
The points you make about cuts to NHS services as so true. I wonder if the right thing to do is simply to commission more standard services, so everyone can just do the job properly, instead of falling in love with Open Dialogue. I also wonder if Open Dialogue would work in the UK when they’d obviously have far bigger caseloads than they do in Lapland.
Surely, it is worth looking into Open Dialogue if there is the possibility of individuals with psychosis returning to a normal life within two years, and drug free. If these claims are true, it would improve the quality of life of patients and save the NHS money. Drugs and hospital admissions cost money. It may initially cost more, due to the intense nature of the treatment, but there may be very good long term gains. Perhaps the third sector could work with the NHS to provide a safe environment in which to place Open Dialogue.
I have a friend, who after reading anti-psychiatry literature went off his anti-psychotics and had a severe recurrence of his symptoms leading to hospitalisation, where he was immediately put back on his anti-psychotics, but I have also read that withdrawal from these drugs can mimic the very illnesses they were created to control. Unfortunately, I don’t think there are any studies, at least that I know of, which train doctors how to withdraw patients from anti-psychotics safely.
Also…what do you think of the practice of anti-psychotics being used as mood stabilisers in non-psychotic disorders, such as bipolar 2 disorder?
I think there are times when there is a case for medication, but I don’t think it should be long term considering the risks, unless it is absolutely necessary. Anti-psychotics are known to cause weight gain, metabolic syndrome, and type 2 diabetes. These secondary conditions also cost the NHS money and impair the quality of life of the individual.
Unfortunately medication is often seen as the only option. It may be the best option in a crisis, but considering the risks it should not be a long term option. More pastoral support to aid a complete recovery would ,in the long term, help rehabilitate patients, and perhaps see them permanently leave the mental health system. Doctors could be trained to help people get off their medication in conjunction with the right pastoral support team to help them back into a normal life. After all, that is what most service users want, to no longer need services! It would be a win/win situation for the individual and the NHS. Without the right support, people relapse, costing the NHS more money, so it is a false economy to deny the right support or research something which may bring about a better outcome.
Thanks for the reply, interesting questions.
I agree it’s worth looking into, but as I discussed in the piece we really can’t read too much into the huge clamis being made about OD at this stage due to the real dearth of good research. Like you say at the end of your comment, more pastoral and social support would be a great idea, but I am unconvinced we need to buy into a whole new way of working like Open Dialogue to achieve this.
Learning how to taper off antispsychotics a skill, and one which all good psychiatrists should be good at, so that patients don’t get withdrawal effects. However, the jury is very much still out on whether ‘rebound psychosis’ is a real thing or not. A large amount of patients relpaseon stopping the medications, but that is really more likely to be because they were helping in the first place, not because taking them away is actively harmful. And there’s certainly no evidence to suggest that antispsychotics create more psychosis than would have been around in the first place without them.
As for using antipsychotics as mood stablisers, there is a lot of good quiality research to show that drugs like quetiapine can reduce mood symptoms, but as you say, it’s always going to be a risk/benefit calculation for each patient to decide if the side effects are worth it.
hi doc– you see– psychiatry itself has the power to arrest,tag,incarcerate, and poison–And because they come from that place-head space–they talk that way–with that “power thing” in their psyche-language- they come across that way– even though they might not “really inside” underneath it all, be that way.
The difference is, in western Lapland, they go out of their way not to exercise those powers– theirs your fist reason for their success–and our failure.
the second reason, is this statistic– http://www.psychminded.co.uk/news/news2007/June07/people002.htm
Like the condition –“temporary” 9/10 –so should the medication be.
Especially when its a temporary drug effect cause.
Its not a relapse from an original mental illness back to that illness– its a metabolic withdrawal- supersensitivity psychosis–purely from withdrawal of the psychotropic that was always supposed to be temporary and that was something they didnt want in their body and mind– its a bit nasty to then call them mad again– because “they needed the drug” when being on that drug “long term” actually keeps them sick—-
(speed psychosis treatment according to 14 national rehabs is sleep from 2 or 3 days, up to ten days-(in japan mental health care its 30 days) before any diagnosis can’ or should be made–ascorbic acid–multi vitamins-the waylaying of drug induced thought-peaceful loving environment–and benzos if sleep hasn’t been enough after three days) no psychotropic hallucinogens for ten days at least–and mind you a hit of heroin will bring them down and back to normal pretty much pronto–because its slow(no hallucinogenic properties)–speeds fast- but no one mentions it because of its illegality.
—but of course no one can prove that because going off them makes you mad- staying on them keeps you mad–and our psychiatry wont let either happen anyway.But on that ethically, once that drug has eased their troubled mind–common sense says to stop it–ease it off–because they like everyone else with troubled thinking–will be OK if they can be guided well-enough—encouraged—convinced that they are going to be OK, now tomorrow and in their future -provided they follow the advice they are given,work through their concerns, circumstances and worries- and modify or stop any bad behaviors that will contribute to more troubles .
the third reason is that its not genes that cause bad pictures, bad mind states– – but words that create bad picture genes, and mind states- not quite like the chicken and the egg– but the main cause of mind problem/health are the good/bad lessons we get/or the lessons we get/or don’t get– from our parents–hence words– outside of that– being of course–example,.
which they fully understand in the western Lapland’s–as opposed to our psychiatry, being the exact opposite up to the point, that they actually stop family seeing their loved ones during the initial high dependency stage of care–for up to four weeks- the time they need them the most.
So they don’t isolate dominate and control.They don’t come with a hammer and a gorilla in tow.
Of course their are many reasons for unhealthy or disordered mental functioning, but to me family is the most relevant and important– and should take most of the blame and credit ,(which its not even about–its about reality) we all know that what you get “from their” helps you,hinders you- almost determines, how you cope, with,from and in,the world, environment,life itself– and that company, experience, circumstances, behavior,alcohol,maturity,immaturity, drug taking and effect,etc etc-will all play their own role and have their own effect from your lessons, which mostly come from your parents,ie; what you see–is what you get– outside of course of your own personality,physical capabilities,, and determination. Anyway its really good that about 20% of our psychiatrists are now starting to talk recovery– so the wheels are finally turning– forward. The tears and cries of the victims –are finally, starting to be heard.
I think the claims that we do the sort of things here that open dialogue does is not something I find in my experience of knowing a fair number of mental health service users. I am not convinced this is entirely because of lack of resources. They do not used Open Dialogue in other parts of Finland, only in Western Lapland. That is a population that might be covered by a healthcare trust here. I expect the budgets in other parts of Finland are pretty similar.
A lot of CMHT workers have almost no counselling skills from what I can see. Time after time I sit with someone who is a long term service user and after about an hour they disclose a traumatic history. I ask them if the services know about this and they tell me not and that the services are not worth telling.So I am not convinced it is all down to budgets.
The studies were small but they have been doing it for about 30 years so some epidemiological evidence might be available as well as the studies?
I do not think it is claimed that this is the only way of caring for people who are seriously distressed that uses low drug regiemes and is helpful, it is the one that is currently getting public interest. There have been other approaches in the past and there are others currently being used but they have not garnered so much publicity. Other approaches in the past were supported houseing in a therpuetic milue at the Soteria House project and individual psychotherapy assessed in a project by Bertram Karom. I cannot comment on the outcomes as I lack the ability to critique the publicaly published papers on these projects.
What I would like to know is the budgets for mental health care per head of population in Western Lapland, in the UK and in some European countries and then to compare that to outcomes and patient experience, ie how satisfied are patients with the services provided. I would like to know that before saying that limitations on our service delivery are purely down to money.
You wonder what would be done about patients who like drugs, have very few social contacts and are worried about confidentiality? My impression, having gone to a conference on the UK trials of Open Dialogue, is that the patients wishes would be respected. It is a very democratic system.
May a medical layman add a footnote to the discussion here? I’ve been reading books written for educated non-professionals on psychology and psychiatry, since the 1970s. I did Gestalt Theater work myself, while sorting out a nasty divorce and depression. Still, one of my most formative books was Martin L. Gross’ “The Psychological Society — the impact and the failure of psychiatry, psychotherapy, psychoanalysis and the psychological revolution.” (Random House, NY, 1978).
Gross lays out the case for the ineffectiveness of talking therapies as a framework, referencing studies that go back as far as the 1950s. He also anticipated by 20 years, the realization that gender affinity has a natural range that includes both heterosexuality and homosexuality — despite the stigma attached to non traditional gender by psychiatry itself. It’s turned out that gender affinity isn’t and never was a psychiatric disorder. One must wonder how many other diagnostic labels in the DSM will prove over time to have the same mythological character. I personally would like to see the entire field of psychosomatic medicine abolished outright.
For 20 years, I’ve witnessed the application of fancy pseudo-scientific terms like “somatization” to patients with rare medical disorders, as a means of weeding these troublesome and time consuming people out of busy medical practices. But such labels deny patients meaningful medical investigation of their medically unexplained symptoms. The Society for Humanistic Psychology chose to publish my researched article “Psychogenic Pain and Iatrogenic Suicide” on their Global Summit for Diagnostic Alternatives. But this is just one tip of a huge iceberg.
It seems to me that there is ample reason for lay people to face down the professionals and say to them, “A pox on both your houses — you’re still having a 50-year guild cat fight over what works to help severely distressed people, while they go right on being disabled and in distress, in part because of the treatments you deliver!”
Thus I can only applaud your effort to talk sense about a subject that is largely taboo to mainstream psychiatrists. We must focus first of all on generating carefully controlled and replicable medical evidence of efficacy for the many proposed therapies — of which Open Dialog is only one, and a poorly investigated one at that. We must also document the damaging effects of neuroleptic drugs on tens of thousands of patients who now have Tardive Dyskinesia as a result of taking them. And media advertising for prescription drugs must be banned outright, while medical research starts over to re-verify claims of both academics and profit-driven pharmaceutical companies concerning mild to moderate depression, ADHD, Bipolar disorder and a host of similar issues.
Keep on telling truth, Alex. Your colleagues need to hear it, and the public needs better information on the risks of the prescriptions rendered by your profession.
Sincerely,
Richard A. Lawhern, Ph.D.
Resident Research Analyst for a chronic facial pain website serving 6500 people in 117 countries.
You claim that alleged “withdrawal symptoms” are usually a relapse which I have to respectfully disagree with, particularly if the taper was quick and the symptoms appear very quickly. And what about the folks who had no signs of mental illness but are put on psych meds for regular medical issues and develop mental health issues when trying to get off of the meds? What is your explanation for that situation?
Thanks!
Not sure where I’ve said that – withdrawal effects from antidepressants are well recognised and the committee I sit on at the RCPsych has done work into this http://www.rcpsych.ac.uk/healthadvice/treatmentswellbeing/antidepressants/comingoffantidepressants.aspx
But wihdrawal effects are very different from depression per se. Becoming depressed due to problems stopping an antidepressant that was started for a general medical issue is far less likely but theoretically could happen – as depression can be a response to any stressor.
The withdrawal effects from antipsychotics are less well researched but rebound psychosis from stopping some drugs like quetiapine/clozapine is generally accepted to be a thing. In the vast majority of cases though, certainly in those that I’ve seen mysel – psychosis after stopping an antipsychotic is consistent with genuine relapse rather than a withdrawal effect. The symptoms are often the same as during the first episode (before any drug was given) and happen weeks/months after the drug is stopped and is long out of the system.
Hi Alex. Very useful introduction for a lay person like me – thanks for writing it.
Small stuff – ‘populace’, not ‘populus’, and ‘number of people’, not ‘amount of people’.
Best regards to you, your colleagues, and your patients.
I really enjoyed this article which touched on some of my own reflections and questions about Open Dialogue, which were contained in an email to a colleague (the body of which I attach below).
Over the past 35 years of working in psychiatry I have developed a healthy scepticism of the ‘over blown’ claims that inevitably accompany the latest psychiatric fashion. I think the limitations of psychiatry is always in danger of driving the profession towards a religious fervour that interferes with objective thought and risks ‘throwing the baby out with the bathwater’.
However having watched a video about open dialogue (there were no clinical examples in the video I watched) I can see that there are many things to commend the model. 1) circumscribed use of neuroleptics. 2) Listening to the patient and the relatives. 3) Not dismissing the patients communication as being meaningless. 4) Trying to engage with the family system that is containing the patient. Bringing in different voices. 5) Not feeling the experts have to know or may have the answer. 6) View of the patient as a person with a life within a social system. 7) professionals are open minded and ready to take in the patients experience. 8) Continuity of care. 9) Tolerance and interest in psychotic states of mind (in contrast to the tendency in modern psychiatric practice to want to push madness away, much of this is driven by the shortage of staff, pressure on beds and caseloads).
I have several questions which come from my experience of working with psychotic patients in different settings over many years.
1). The families and social situation is often quite fragmented and not really capable of managing some with acute psychotic symptoms.
2). Although this democratic model of engagement is human and non hierarchical. It could also play into the hands of the part of the patient that uses denial and rationalisation to conceal the omnipotence and destructiveness of the psychotic part of the self. The psychotic part of the self and it’s influence often wants to remain hidden while continuing to undermine and influence the patients sane ego and/or sane arguments coming from family members/health care professionals. In my experience it is often experienced clinicians who pick up and tune into the subtler influences of destructive narcissism.
3). Obviously listening to patients is important however staff also need opportunities to separate from the influence of the patients communication and think about their view of the patient and their condition. Patients can often have an impact on our perception and thinking that is hard to identify until we have separated from them. I do not believe this is always something that can be done with the patient present. My understanding of the patient and his/her condition tends to be away from the patient after the session and when I can think about the session and/or contact I have just had.
4) I am a psychotherapist and interested in the meaning of delusional symptoms and psychotic communications. However there is a danger in idealising the ‘search for meaning’ as not all psychotic communications are meant to be understood indeed some communications attempt to conceal the truth and interfere with the development of meaning.
5) Although I’m sure that patients who have been looked after in a proper open dialogue system are likely to be better off (much of the model sounds like like good psychiatry) I still think there will be a proportion of patients who continue to suffer from negative symptoms and fragmentation of their ego retreat into delusional states. Psychotic states can be destructive dangerous and may be extremely distressing for the patient and their relatives. In these cases medication is both necessary helpful and enable other approaches to come into play.
Marcus Evans (Author of ‘Making Room for Madness in Mental Health; The psychoanalytic understanding of psychic communications)
The problems with medical psychiatry and its supporting research begin at the foundations.
I’ll expand one particular example. Studies testing drugs for treatment of e.g. schizophrenia have already made a potentially fundamental reasoning error. That is, the assumption(1) that they are comparing like with like, and that patients with similar symptom patterns have similar or identical problems which can be treated in similar or identical ways. For studies of the ‘try treating mental disorder X with drug Y’ kind, unless this assumption(1) is broadly true, it is meaningless for the purposes of treating a patient you see who has the same ‘mental disorder X’. Unless there is solid research establishing (to a degree comparable to mainstream physics) that in mental health research we can safely assume assumption(1), all research making such an assumption (whether explicitly or implicitly) is fundamentally flawed. To my knowledge (I am a long term mental patient who had a pure maths and logic research background before mental health problems derailed my career) there is no solid scientific basis for such an assumption. It is assumed by tradition, and most medical mental health practitioners seem uninterested in the foundations of their decision making process, or in questioning the foundations of their professional beliefs to such a depth.
Two questions must be answered before one can rely on drug trials for their reasoning:
1. Do similar symptom patterns entail a similar underlying cause?
2. If two patients have similar symptom patterns, will similar treatments work?
Without this, randomised drug trials based on categorisation by symptom patterns are simply meaningless, and if this means the majority of the mental health literature is good for nothing more than lighting fires, then that is unfortunate, but nonetheless is the case. If your category is too broad, what may be highly effective for a minority of patients can easily not be tried on them once due to randomisation, and the beneficial effects get averaged away. (Consider a hypothetical trial of 1000 patients, and a method X which is highly effective for 10 of those thousand, does nothing for 900, and is problematic for 50 others, verses something which appears to give a 5% improvement across the board: what would one see in the kind of statistics compiled in typical trials? What is the probability, if there were 4 distinct treatments plus a placebo, of any of those 10 being randomised to X, versus the probability of some of the 50 being randomised to it?) Randomised controlled trials are not magic, one more medical practitioners ought to take a serious interest in the maths behind them and in what they _don’t_ tell you. That there is much they don’t tell you is a necessary consequence of reducing a large collection of human beings to a small collection of numbers. When this happens you must take great care, and be aware of what information you are throwing away. Mathematicians have turned this ‘systematic ignorance’ into an art form, and are drilled in the care they need in their reasoning. Medical students have so much to learn about physical anatomy and disease that they don’t have time to learn what a statistics postgrad has learned in university, nor even the need for the kind of pedantry that mathematicians are often known for. But when it comes to statistics, logic and reasoning, the pedantry of a serious mathematician is not an optional extra. Nor is the attitude of the good scientist who wants to know what it will take to break their favourite theory. (Another good question to ask yourself with regards to mainstream psychiatric theories is what serious attempts have been made to experimentally _disprove_ them? A theory is only as good as its sternest test, so what is the sternest test psychiatric theories have been subjected to?)
I am interested in research which conclusively answers questions 1 and 2, and leaves one no sensible alternative but to acknowledge that the answer to both is a conclusive ‘yes’. Do you know of any such research?
In the absence, a psychiatric diagnostic label only tells of some of the observable symptom patterns, and indicates that it is recognised that a patient _has_ a problem, but does not tell anything particularly reliable about the _nature_ of that problem, nor about _how_ it can be effectively treated. Mass manufactured one-size-fit-all solutions are both tempting and profitable, and mental health professionals need to do more not to fall into those temptations, and understand that there is a multibillion dollar industry only interested in the ‘profit’ part of that.
(What follows is an emotional rant, but I thought it worth including: As for effective treatment, having endured chemical coshes for a number of years, I can tell you that what may appear to a psychiatrist to be a good outcome may not seem that way to the patient. When on medication I cannot, for example, communicate major problems I have in my thinking, nor motivate myself properly, nor keep myself healthy, nor be confident about any thoughts or decisions I make, nor make any serious commitment, nor make any life affecting decisions with any seriousness. All I experience, continually, is that everything is wrong and I can have zero confidence in my thinking, and due to this zero confidence I cannot even communicate that. My experience is that psychiatrists who haven’t personally taken a ‘hospital dose’ of neuroleptics for a significant amount of time and tried to tackle the same thinking and motivation issues patients on drugs face, don’t understand the issues these drugs create, don’t seem to care all that much, and are happy to write all the negative things down to the ‘illness’, see them as unavoidable, and not contemplate serious alternatives. A living death sentence is how I describe life on neuroleptic drugs (and in a walking jail which will happily tell people things are ok until it is confident they are not). In addition, there are times when on drugs I said I was happy with what I was taking, not being able to think properly about the overall situation: the nightmare drugs like neuroleptics put you into is one where there is a crazy disconnect between the person on the inside, and how they present on the outside. There were many times on stronger medications that I sincerely _wanted_ to communicate problems I was having, but couldn’t, people around didn’t see the problems, I would never have the opportunity to sit down and walk through what they were, nor would I be able to with my brain dampened by neuroleptics as they were. To me, they have basically destroyed my adult life, and nobody seems to care.)
I think John makes a very good point that what is considered a “good outcome” by clinicians may not be seen as a good outcome by the person experiencing mental distress. As a professional working in a crisis team, I am constantly frustrated that the emphasis seems to be to dampen down or stop emotional experiences as quickly as possible by using, what I consider to be potentially harmful, medication. One of the issues with this, in my opinion, is the message it gives to people that they (and the clinicians working with them) cannot tolerate their experiences and need a chemical solution to what is very often distress relating to current and/or past social stresses and trauma. Many mental health professionals do not appear to be able to sit with distress or listen to people’s stories because they find it too hard to bear themselves and don’t know how to respond or what to offer. Again I feel this gives the wrong message to people in distress- that you cannot or should not talk about what has happened to you, giving the implication that there must be something shameful about it which must be hidden away. Part of the reason for this I believe is that staff in mental health services are not trained to tolerate distress and uncertainty. They feel they have to do something immediately to make things better – but this is really just a sticking plaster. Staff are also under immense pressure in the current NHS and do not feel supported themselves. How can they be expected to bear the distress of others when they are barely keeping their heads above water themselves, feeling constantly stressed and anxious, having to practice defensively to avoid being blamed should something go wrong. It is a sick and unhealthy culture which is untherapeutic and leads to an “us and them” mentality where patients are blamed for not trying hard enough to get better or using too many resources, different professional groups criticise each other and those lower down the professional hierarchy don’t feel heard and teams and wards criticise and blame each other for not seeing people fast enough or not working hard enough.
I have just completed the final block of residential training in Open Dialogue and what strikes me about the approach is that it is not a new technique or therapy but is is about a way of being and a complete culture shift. I did not understand this until doing the training. What is different about it is that it is fully collaborative and it involved clinicians and teams that work together to spend a great deal of time working on themselves and their relationships in order to bring about the supportive context that allows for an open dialogue. Staff practicing in this way would feel much more supported and able to trust in their colleagues. The removal of professional hierarchy means that, whilst knowledge and expertise can still be valued, that includes everybody’s, be they a medic, a nurse, a psychologist, a support worker, peer worker, family member or the person at the centre of concern. It is about learning to “be with” rather than “doing to” and to me feels like it is about bringing back a sense of community support which has been lost in today’s individualistic and materialistic society.
What many people may not realise is that whilst network meetings offer the initial framework for support and dialogue, other forms of intervention or help can be used in addition – so if the person at the centre of concern is in agreement and it would be helpful to have medication or occupational therapy sessions or individual counselling or therapy this can be offered alongside network meetings. If the person has no social network then their meetings may only involve professionals, however there may be opportunities to invite others to participate and offer support of wanted- for instance a peer worker or chaplain or someone from their faith or whoever seems appropriate. There is a focus on trying to build or facilitate the development of social networks and some innovative projects are evolving which aim to do this such as the Windhorse project.
In my mind the positive thing about Open Dialogue is that it creates a culture of openness, trust, support, mutual respect and collaboration, through which healing can occur. NHS mental health services have become toxic in my opinion, making it difficult even for the most dedicated, compassionate and caring of professionals to offer the level of care they would wish to. It is easy to get sucked into a culture of blame, infighting and labelling because swimming against the tide is hard work.
It is all very well focusing purely on statistics and data and I am very glad that there is an RCT about to take place as this appears to be about the only evidence that NHS commissioners will listen to. There is something about open dialogue though which cannot be captured in this and is about the quality of human relationships and experience. I would be far more interested in speaking to the recipients of this type of care to see what their experience of it was and comparing this to TAU in today’s NHS.
Even with all of the medication and therapy options we have at our disposal, large numbers of people will not become “symptom free” and often the side effects of some of the drugs outweigh the benefits. Recovery in my mind is not about eliminating all unusual experiences or dampening down emotions – it is about whether somebody is able to engage in life and participate in society – whether life is meaningful and worth living. It’s about developing resilience, as individuals and family/social networks and feeling that whatever life throws at you, you can get through it and will be supported to do so. This would stem the tide of revolving door clients and dependence on services, thereby reducing the pressure that currently exists. It seems to me that we have created this demand and given people false hope that medication is the answer to their difficulties when in reality recovery is far more complex. We are perpetuating the belief in a “quick fix” which is endemic in today’s society. We are doing people a disservice and causing harm.
Yes the open dialogue approach may appear resource heavy but this would only be in the initial stages and the level of input would decrease as needs changed. I would argue that what could be potentially be gained in the longer term would far outweigh this. For one thing, the teams I work in spend anything up to 3 hours per day in MDT/handover meetings which there would be no need for within the open dialogue approach. There would be a requirement for team supervision, however I would argue strongly that this should be prioritises now and the fact that it isn’t is partly why we are constantly fire fighting as there is no space to think!
It is hard to describe what the experience of this training had been like- to begin with it felt uncomfortable and almost a little evangelical/cult like. There are times when heckles have been raised and there has been heated debate and discussion, but by the end I now feel like I get it. It has been about challenging ourselves as people and as clinicians, finding out what presses our buttons, learning what our values are and becoming more mindful. It has been about learning to trust others and build positive relationships with colleagues. It has been amazing to see such a mixed group of people, including psychiatrists, social workers, psychologists, support workers, occupational therapists and peer workers all learning, discussing, debating and socialising together with no sense of hierarchy and valuing and respecting each other’s opinions. This should be the future of mental health services.
Alex, thanks for your lucid and impressive post. I’m an OD patient and have had ‘psychotic’ episodes for many years, since my childhood: visions, seeing ghosts, and terrifying and lucid dreams. I’ve tried anti-depressants, which never worked, they just made me feel woozy; therapy – counsellors and a psychologist – and nothing really got to the bottom. I also realised that my experiences weren’t something the professionals had ever had. It felt like being examined under a microscope – an unpleasant experience.
I heard about Open Dialogue via a press feature and went to their first conference in 2015. It was a revelation! I was clear that it was the treatment I wanted as I didn’t want any more medication, I CRAVED someone to listen to me.
I was one of the first patients to come through the NHS Trust referral scheme, which means NOT being on medication and being willing to travel to Barking for treatment. I’ve had 5 sessions so far and hope to conclude this spring. What I value most is the intense and active listening of the team without judging, the 2-3 hour sessions (most 2 after the first session) and the fact that the team reflect in front of me. It makes me feel HEARD and valued. I’ve discovered that my “psychosis” is in fact, normal human experience, which most people DON’T talk about, for fear of being called ‘mad.’ My lucid dreams have all predicted future events, but it’s great that they are now very infrequent.
There is little in our instant fix and highly judgmental society which describes or acknowledges what it is to be fully human, imho. The Arts is perhaps the best exploration. Religion is very controlling, sadly, much against the teachings of their spiritual leaders. Science is thorough but always seeks proof. I think it’s best to accept that some supernatural phenomena can’t, currently, be explained by Science.
I’m relatively relaxed and open with people about my experiences and have recommended OD to a few. In sharing my ‘episodes’, it’s gratifying to discover that I’m not alone and that many people have similar, although not as intense, experiences. Most of all, I now live a meaningful and much more hopeful, life, which is a tribute to Russell Razzaque and his team.
Interesting silence around the main topic – the non-use of drugs. Then when I scrolled all the way down and saw what your background was, it didn’t become surprising at all. If it wasn’t for something like this I would give anyone with your background and inch of forgiveness, consideration or approval of validity.
Hi,
Just came across this, interesting. I attended three weekend seminars delivered by Open Dialogue practitioners from Finland, I think in 2013. My close relative, who has a diagnosis of a mood related schizophrenia, was with me.
I dispute your claim that the NHS has many facets of OD practices but that it is hampered by underfunding. Whereas I would whole heartedly agree that MH services are grossly underfunded, under resourced; as a carer I have never ever experienced any of the practices or attitudes demonstrated by the Finnish practitioners. My relative has had so many bad experiences at the hands of ward staff, assertive outreach staff and definitely from psychiatrists; that he has now managed to disengage from all services by moving away, refuses to engage with any support and keeps under the radar where he now lives. In his experience, the mental health system that you claim tries to emulate many OD practices, has been neglectful, coercive and in some instances proven to be dangerous. Many of our experiences are so contrary to NICE guidelines, proscribed policies of our Trust and of the most base human rights that I am gob smacked to find anyone defending this and certainly wonder if you have researched Open Dialogue in an alternative dimension. You also defend the use of long term anti-psychotics even though research demonstrates that these shorten life expectancies for users and you do not explore that the side effects can make life so miserable for the user or that many psychiatrists take claims of their patients about side effects and label the patient ‘non-compliant’ for not taking their meds.
What Open Dialogue does offer is a different experience, a better way of defining someone’s mental distress. It offers something that does not stigmatise the patient, gives people a stake in the healing process, empowers the patient and gives hope; something sadly lacking in the system that you defend.