Friday, 7 April 2017

NICE idea from Gothenburg




I was expecting to arrive at one of those over-professionalised conferences with a lot of men in suits talking about receptor subpopulations and the latest meta-analyses of different dose regimes.
what I was expecting, and dreading...

Thankfully, how wrong I was! The venue was ‘The Extended Therapy Room’, a conception of the energetic and charming Carina Håkansson; it is a therapy centre for family placements – akin to an adult adoption agency for those with severe mental health problems. However, we did talk about receptors (and how little they matter in real life), and robust evidence (particularly, how little there is that's relevant in clinical practice).

This was the first workshop of the International Institute for Psychiatric Drug Withdrawal, and I was hoping to find practical information about safe withdrawal from all the different psychotropic medications, and to become part of a social movement to swing the pendulum of psychiatry back towards psychosocial means and methods. I was well-satisfied in both – and also found myself part of a warm and welcoming network of people who talk about things like ‘just being human’, 'holistic care', 'relational practice', 'biopsychosocial formulations', 'reductionism of diagnosis' and the importance of the service user voice. Not quite into the realms of ‘democratisation’, but not bad for a start!

There’s too many interesting things to mention them all here, but just to name-check Olga – a fantastically articulate ex-service user who was very nearly poisoned to death by the psychiatric system a few years ago, and Sami Timini, a British psychiatrist who has a powerful presence in the ‘Critical Psychiatry Network’ (fellow psychiatrists – do join up, for some fantastically erudite and challenging online discussions!).

In the final group we all spoke of one thing that we’re going to do before the second and final part of the course in October. I’m going to put mine here, so it’s like a public commitment...
And it is to lobby NICE to produce a guideline on ‘withdrawal from psychiatric medications’. My starting two shots are the following emails, which I have already sent to the Critical Psychiatry Network and to Tim Kendall (who is National Director for Mental Health in NHS England):
--------------------------
Hello CPN Colleagues
I’m just at the training course for psychiatric drug withdrawal run by the International Institute for Psychiatric Drug Withdrawal (IIPDW) including CPN’s own Sami Timini.  It’s very stimulating and interesting – especially to hear of the Norwegian policy directive for each area to have a non-drug mental health facility. The participants in the course are mostly Scandinavian and multidisciplinary, including several carers and experts by experience. So here’s one idea that Sami and I were talking about: Why not lobby NICE to set up a guideline for SAFE WITHDRAWAL FROM PSYCHIATRIC MEDICATIONS?
The reason being that, even amongst experts here, there is little solid evidence for what are the best ways to withdraw psychiatric medications (except perhaps benzos) – despite the generally accepted view that long term use and polypharmacy is a Bad Thing. And the increasing evidence of long-term harm, and the public disquiet.
Could CPN ask Tim Kendall to set one up?
Or is there a formal process we could lobby through?
It would probably need some much better-informed research-savvy people than me, like Joanne and Sami, to make the case.
But NICE guidelines now carry so much (spurious?) authority, that it would certainly create a (useful) stir.
Any thoughts?
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Hi Tim
I’m just at the first workshop of the International Institute for Psychiatric Drug Withdrawal in Gothenburg.
It’s clear from the discussions here that nobody really knows what the protocols should be, and there are no easily available or unbiased guidelines on the subject – despite recommendations about no long term use, increasing evidence of long-term harm, and many unhappy service users and carers.
Any chance of setting up a NICE guideline on it?
Or is there a formal process we should follow?
Many thanks
------------------
Watch this space to see what comes of it!



Sunday, 2 April 2017

The 'Human Development' consultation

Many of the fundamental principles behind the 2002-11 National Community PD Development Programme come from a developmental view of human relations. This is very different from the psychopathological frameworks always used by psychiatrists and psychologists - which are enshrined in policy and law in many ways, with the authority they thus convey.

Here is what Nick Benefield and I wrote about it in 2008, in our editorial for a special edition of  'Mental Health Review Journal':
When human development is disrupted, the psychological, social and economic consequences can reach into every area of an individual’s personal and social world, resulting in alienated and chaotic lives and repercussions throughout their communities.  The causes of this disruption may cover the whole range of physical, environmental, psychological, social and economic factors: from an unlucky genetic inheritance to a difficult birth, child abuse, inadequate parenting, failed attachment, trauma or emotional deprivation. The causes can also be poverty: material poverty, or the poverty of expectation that leaves individuals feeling powerless to have any impact on the world in which they live.

Over-riding differences in class and educational advantage confer some with strong constitutions - or a range of poorly understood protective factors – which may be sufficient to enable them to withstand the impact of these environmental failures and emerge from their early experience to live what appear thriving and healthy lives. However, very many end up in a situation where they are excluded from mainstream society, rejected by those who might be able to help them, and destined to live lives of unremitting frustration, without the happiness and fulfilment that most of us would consider just - and expect for ourselves and our families.

These individuals, and often their families, have little psychological sense of their place amongst others or where they fit into society. School, working lives and almost any pro-social relationships are difficult or impossible to establish and sustain. They experience the world as a hostile, unhelpful, threatening or undermining environment, living in a marginalised underclass with high levels of substance misuse, self harm, criminality, and suffering severe, enduring and disabling mental distress. People in this situation will often use a considerable range of statutory services to little benefit.

A minority will receive a formal diagnosis of personality disorder and so gain access to appropriate PD intervention services. However, the majority will receive an ambiguous and often prejudicial formulation of their difficulties and will more likely to meet a range of unsatisfactory public service responses.  Dependent on the immediate presenting difficulty, this response will often be inconsistent and have little relevance to the core psychosocial problem faced by individuals who are trapped in the experience of a failing relationship with the world around them.

Current government policy on personality disorder is seeking to change this and achieve three objectives: to improve health and social outcomes,  to reduce social exclusion, and to improve public protection. Three separate policy initiatives have broadly begun to address these through the Social Exclusion Action Plan: “Emerging PD in Children and Adolescents”; “PD - No Longer a Diagnosis of Exclusion” and “Managing Dangerous Offenders with a Severe Personality Disorder”. New legislation in the form of the Mental Health Act 2007 also aims to improve access and rights to treatment for those individuals most severely affected by personality disorder.

In all three areas of this work, progress is being made. The papers in this issue of the Mental Health Review give some indication of learning and experience in the field so far. Evidence from DH funded pilots across the country is emerging to demonstrate that that answers do exist, but that they do not lie in a traditional mental health treatment model or straightforward social policy - but rather in sophisticated cross-agency work that takes in the experience and expertise from various sectors: including health, social services, offender management, housing, social security and the voluntary sector. It also involves new forms of partnership with service users themselves – where they can feel themselves as active agents in their own recovery, rather than the passive recipient of technical expertise.


This is the very beginning for a field that is more complex than a disease model or unitary interventions can address. At this stage there is a need to continue to encourage evaluated and researched service innovation, and establish a workforce equipped to meet the demand for skilled and specialist intervention. To be effective, this will require closer collaboration across public services to ensure the relevance of personality disorders is understood and informs policy, strategy and service provision across the fields of health, social care, education and criminal justice.

Since the community programme was closed in 2011, we have continued to work on the 'relational principles' behind this. The 'PD tube map' was an attempt to demonstrate the pervasive and profounf effects of what we diagnose as 'personality disorder'; and the complexity and interrelation between the systems and services we had set up to tackle it. Here is the tube map:
And a link to a higher quality pdf of it https://tinyurl.com/PDtubemap 

  
So, with particularly useful input from the Offender PD team at NHS England and NOMS (National Offender Management Service), we started to design a more 'serious' version. It is likely to be adopted by the criminal justice sector as a useful model, and there is interest that we are pursuing from the health and education sectors. The hope is that it could convey the importance of considering a non-linear and complexity-based framework for policy and commissioning in all public sector areas concerned with the various 'failures' of adaptive human development. 

At the recent Inverness meeting of BIGSPD, we started a consultation about the model - which has so fare been through eleven iterations. Following the very detailed and informative discussions we had about it in Inverness, here is the latest - version 12:

If you have any thoughts about it, please join the consultation and send your thoughts and ideas to Nick: nick.benefield@icloud.com .
But please don't use it or redesign it for your own purposes, as it is only an early draft at this stage. We are the copyright holders and we'll be after you if you do!

Thursday, 30 March 2017

Whatever happened to therapeutic communities?

Following the Community of Communities Annual Forum at the Royal College of Psychiatrists (a hectic and jolly affair, as has become the custom), Steve and I did our first formal launch of our labour of love, ‘The Theory and Practice of Therapeutic Community Treatment’. I say first because we are also planning a couple of others for later in the year (do come to Windsor...)

Young Sophie from JKP came along with a box of fifty, the great majority of which we managed to sell and sign. Steve and I started it all off with a few words – I was the ‘grumpy old psychiatrist’ who didn’t see that TCs should be entering all this business of manuals, and that it’s a textbook anyway. Steve countered that this is the modern way, the only way, and that now we all live in the squeaky-clean world of evidence-based practice, there is no alternative. Then we read a couple of nice passages from the book and cracked open the wine. Signing was great fun – probably the closest I’ll ever get to knowing what the life of a celebrity is like. I often wrote ‘this is not a manual’ inside the front cover, and Steve followed it up with ‘Oh, yes it is!”. Well, famous for fifteen minutes is good enough.

I am so often asked ‘whatever happened to therapeutic communities?’ or some variation of the question – usually in a rather apologetic way indicating that the questioner didn’t know that they actually still existed at all - that I decided to do a fairly short written answer, so I could point people to it. Before they read the book, that is. Here it is:

In the twentieth century, therapeutic communities in the UK established themselves as a radical alternative to mainstream psychiatry. However, some of the philosophical roots can be traced back much further. In the thirteenth century, ‘mentally afflicted pilgrims’ travelled to Geel, where the village community took them in and looked after them. After the Enlightenment, people with mental ill-health were defined as ‘mad’ and incarcerated away from society. The Quaker William Tuke’s response to this in the UK was to open The Retreat in 1796, and argue for the ‘moral treatment’ of people as human beings, rather than as animals to be tethered and caged.
 
There is also a long tradition of progressive residential education for children and young people, dating back to the late nineteenth century with the ‘Boys’ Republic’ in Chicago and the ‘Little Commonwealth’ in Dorset, run by Homer Lane, and Summerhill in Suffolk, set up by AS Neill and still operating today. Community meetings are held, and each child is allowed to choose what they learned and when they learned it. In the field of learning disabilities farming communities such as L’Arche and Camphill were established in the twentieth century, by Jean Vanier and Karl König respectively; both organisations expanded internationally and still exist today.
 
The British ‘democratic therapeutic communities’ emerged from wartime military experiments and the heat of the 1960s and 70s social psychiatry movement: the doors of wards were unlocked, and therapeutic communities were firmly against medical orthodoxy, the power invested in hierarchy and status, and the use of physical treatments, such as newly emerging psychotropic medications. Instead, TCs promoted democracy, empowerment, treatment of equals by equals, and the importance of ‘being with’ rather than ‘doing to’. The main principles include challenge and confrontation in a flattened hierarchy, and culture of enquiry, where people feel emotionally contained and safe to do the necessary psychological work. Risk is contained through relationships, rather than protocols and procedures.

The programmes are group-based, and the community itself is the primary therapeutic intervention: all members of the community are responsible for the day-to-day running of the unit and decisions are made by consensus or voting; members cook, eat and spend social time together. One of the most important TC principles has always been ensuring that patients take the lead in their own treatment, as well as contributing to the treatment of others - in contrast to the paternalistic attitudes taken by mainstream services. TCs have extended this practice so that that ex-service users and experts by experience are encouraged to become involved in teaching, training, research, service commissioning and consultancy. More recently, these practices have been adopted by other services in all areas of health and social care.

Although this discussion mainly concerns democratic therapeutic communities for people with mental health difficulties, there is also a very large worldwide contingent of addiction TCs; although their origins were very different to ‘democratic’ TCs, some commentators have noticed that they are becoming increasingly similar.
 
What TCs do well is to adapt and change in response to challenges: their members are expected to do the same in their own lives. In the last thirty years, TCs have particularly had to adapt and change in response to increasingly austere economic policies and the emphasis on short-termism, as well as the rise of individualism and consumerism.

While the late 1980s and 90s saw the closure of many residential NHS TCs because of financial constraints, creative adaptations were taking place in order to survive. Two new national residential NHS TCs were set up to replicate the work of the flagship Henderson hospital; other NHS residential TCs responded to the challenge by converting to non-residential programmes, and a number of day TCs were established as part of the national personality disorder program in the early 2000s. Four new TC wings were established as part of a new purpose-built private prison; researchers in the TC field were awarded two major grants – one to undertake a systematic review of the evidence base in the TC literature, and the other for a multicentre comparative research study.
 
In response to increasing government regulation and inspection of care provision, TCs again responded creatively by devising an international network of peer review and audit, which was based on TC principles: the ‘Community of Communities’. It sets its core standards by democratic processes, involves current and ex-service users at all levels, and implements its audits in an inclusive and empowering way.
 
More recently, although British TCs continue to struggle to survive in the current political and economic climate, there are still some new and interesting developments in the TC field. One is the establishment of regular experiential training communities – the ‘Living-Learning Experience’ workshops. These were originally set up to give TC staff the experience of what it is like to be a member of a therapeutic community, but they have more recently been adapted for use in training for relational practice in groups, teams and organisations – and, in Italy, for entrepreneurs and business leaders. Although these events have been running in the UK for over twenty years, the programme and structure is being faithfully reproduced and used throughout Italy, increasingly in India and most recently in Portugal. In addition, particularly in Sicily, the government has encouraged the setting up and funding of new TCs. Several Italian centres have also set up networks adapted from the UK’s Community of Communities.
 
In 2007, the Community of Communities started a spin-off project called ‘Enabling Environments’. By distilling the underlying relational values from several years of TC audit data, ten ‘value-based standards’ were set. These represent the ways in which the therapeutic community ethos and atmosphere is established, but without any of the structural requirements of therapeutic communities – such as community meetings or specifially trained staff. They are therefore transposable to a wide range of settings where the quality of relationships is seen as crucial. This work, and the portfolio-based award to which it leads, now underlies new ways of working in the homelessness and prison sectors. Psychologically Informed Environments (PIEs) are transforming homelessness hostels, while Psychologically Informed Planned Environments (PIPEs) are doing the same in prisons and probation premises. Most recently, all UK ‘approved premises’, are being supported to become accredited Enabling Environments, and their use in other public service settings is being explored.
 
An additional extension of TC and EE practices is seen in ‘Greencare’, in all its forms. This entails including nature and the natural world as an integral part of therapeutic programmes: it can include therapeutic horticulture, animal assisted interventions, care farming and wilderness camping.
 
The most recent adaptations by the TC field have been in response to the dogmatic demands for evidence-based practice and manualisation. The first is the publication of the research findings of a modern randomised controlled trial of non-residential therapeutic community treatment for people with personality disorders (Pearce, Scott et al. 2017). The second is publication of the first handbook for democratic therapeutic community practice (Pearce & Haigh 2017).
 
Although the future remains uncertain, basic TC principles will endure - and TC practice will continue to change and adapt in creative and forward-looking ways.

Thanks to Jan Lees, who collaborated on writing this.
And apologies for the incomplete references – I’ll update it when I get a chance!

Friday, 24 March 2017

The Inverness Accord

The annual meeting of the British and Irish Group for the Study of Personality Disorder took place in Inverness this year. It was billed as the seventeenth, although some argued that it was actually the eighteenth. The conference is notable for travelling the length and breadth of the British Isles for its venues, and never having been back to the same place twice. Notable venues have included Jersey, the Isle of Man and, most recently, Inverness.

Many papers were given, interesting main speakers – and we had a presentation on the concept of ‘identity’ from an actor, and a cartoonist who captured the main messages from each of the sessions. One presentation worth mentioning was that of Lucy Johnson – if only for revealing the vipers’ nest in the British Psychological Society who are trying to undermine the whole glorious edifice of ‘psychiatric diagnosis’ (they are Lucy herself, Mary Boyle, John Comber, Jacqui Dillon, Dave Harper, Peter Kinderman, Eleanor Langdon, David Pilgrim and John Read). The trouble is, although she was meant to be a conflict-triggering main act, most of us agreed with her – especially about how degrading the general term ‘personality disorder’ is. It’s a name I wouldn’t want to give even to our mad Dalmatian (though he does suffer from several of them).

But as is often the case, the interesting things happened in huddles over coffees, beers and meals. So I’m going to put down some of our wildest ambitions for the field in the next year or so. I won’t ‘out’ my fellow consipratiors, as I expect they are a bit more careful and less excitable than I am, but here are five ideas we hope to push along:
·        A formal training for therapeutic community practitioners: with theoretical, clinical, experiential and assessed elements.
·        A bringing together of national service user and expert-by-experience efforts under a coordinated and well-funded organisation.
·        The agreement across the national commissioners of public sector services in criminal justice, social care, health and education about a cross-agency, cross-sector and interdisciplinary model of human development and what goes wrong with it.
·        Founding an online peer-reviewed, free, journal – to be called something like ‘Journal of Relational Health’.
·        The establishment of an influential ‘umbrella body’ probably constituted as a charitable learned body, with a name something like ‘Institute of Relational Health’.


Let us wait and see: every the optimist, but deeply pessimistic about the way everything else seems to be going...

Monday, 13 March 2017

What goes around comes around

Roma - La Dolce Vita: well, quite hard work really. But some good developments, and exciting new things on the horizon.

Beers on Termini balcony
So, on Thursday two of us arrived at Fuimicino’s new terminal 5 (extremely curvy and sensuous – but quite a hike to passport control and baggage reclaim) and one at Ciampino (the RyanAir destination). The cost for a third ticket to Fuimicino, ten days in advance, was going to be an unbelievable £800 – so RyanAir it had to be. But everything worked smoothly, and the two talks were polished up over a beer on the Termini station balcony.

The meeting and talk on Friday was for the first all-Italian Annual Forum for their Community of Communities equivalent, and we wrote our paper on ‘The Third Position’ – eventually to be written up and published. Fiona, Jan and Rex presented – Rex was told to keep mostly out of the way - and they had a very good reception. While experts by experience are already widely used in Italian services, the audience seemed to be were very enthusiastic about the progressive and non-paternalistic way we do this work.
Simone and Jan on the platform
Somebody described the cultural (primarily Catholic) social milieu which makes it difficult. In the afternoon, in the usual Italian hurly-burly, Simone the magician and Emelia, his Pre-Raphaelite magician’s assistant, delivered a blizzard of multi-coloured and muli-logo’ed certificate to continuous applause from an appreciative audience. A Italian trattoria, virtually taken over by us – with tables squeezed into impossible corners - ensured a good dinner and much jollity for all.

In working on the Third Position paper, Rex remembered what he had written for the 2004 Maxwell Jones lecture, which seems very apposite to our current struggles – and to the depth and difficulty of doing this work. In some way, it gets to the heart of the necessary ‘creative chaos’ that needs to be contained (and even celebrated) in therapeutic community work.
“So we have a pragmatic argument that the problem of personality disorder may not be a problem as we know it; and the solution anyway is to live together, tolerate and grow from difference and disagreement, and create an environment in which that can happen.”
There is more detail about these theoretical points in the paper: “Charismatic Ideas: coming or going?”  Haigh, R., Therapeutic Communities, (2005), 26, 4:  367-382. It’s a theme I want to develop some more – as it links to the horrors of performativity and ‘New Public Management’. Here’s a link to the pre-publication version of the 2004 lecture: https://www.dropbox.com/s/0wslcu5ttyau8a3/04%20MJL%20rev3.rtf?dl=0

The auditorium
On Saturday Fiona, Jan and Rex presented at the ‘scientific congress’ – and our subject was ‘Enabling Environments and Greencare’ – here’s the link to our Prezi:
https://prezi.com/wfc3k07onzom/enabling-environments-and-greencare/?utm_campaign=share&utm_medium=copy
Many Italian TCs are involved in different sorts of greencare and social farms, and the audience was very enthusiastic – we had a long and rich discussion afterwards. The discussion about how to incorporate greencare into the local community was fascinating, if only for the parallel between what we are trying to do in Slough, and what they have been doing for some time in Caltagirone. With five partners involved in each (no mean feat), what they each give and get is so similar. The five partners are (1) mental health (2) local authority (3) education (all statutory sector); and (4) not-for-profit organisations and (5) local businesses. I can feel a diagram cooking!

Then something we weren’t expecting – we were invited to lunch in an organic social farm a few miles outside Rome, where we had a stunning meal set up by Marino de Crescente (who runs a Rome TC). He also organised a tree-planting ceremony to mark the inauguration of an International Network of Greencare Organisations. Fiona helped with the planting ceremony and watered the tree in. Then she suggested that we also plant a tree in UK – their logo on the plaque for the tree is almost the same as our GBL one. We also agreed to share website links and keep in touch.
Planting the ceremonial tree

Quite a lot of other wheeling and dealing went on during the proceedings – particularly about resurrecting the International Network of Democratic TCs. The provisional plan is to hold an autumn colloquium  in London – and devise a structure where the leadership of it is shared between Italy (Sicily, Rome and Tuscany) and the UK (including TCTC, CofC and the journal). Watch this space.

There were also preliminary discussions about how the Italian TC work might be connected to the group analytic training and the central organisations, and the wider groups like EGATIN and GASI. Although this is a bit rareified, it could link up with the Aarhus discussions last November and the hopes to build a group analytic training presence in Bangalore, especially as Shama is going to the big GASI meeting in Berlin later this year…