User groups

In a lecture he gave in October 2008 Consultant Psychiatrist Dr Pat Bracken spoke strongly in favour of engagement of psychiatrists with consumers of mental health services.  He put it rather strongly actually:

‘If we say that we are working to develop user-centred services, training and research programmes then is it simply unethical to carry on as if the user movement did not exist’.

True to this insight, during my time as a psychiatric trainee I’ve had very little to do with user organisations, and they have therefore had little or no impact on my thinking or clinical practice*.  Just like Bracken says, for me they have not existed.  I am unable to say if this is the experience of all psychiatric trainees, or whether my training establishment is particularly indifferent, but I fear that I am not a unique case.  This must be a regrettable oversight.  Any sensible commercial entity (to which health services are becoming increasingly compared) listens to people who take the time to lodge a concern, knowing that if they do not, not only will their disgruntled customer brief others of their dissatisfaction, but also that they will be missing an opportunity to improve.  Within psychiatry, patients can make complaints and are sometimes asked to participate, but they act predominantly as advisors and expertise still resides with professionals.

Why, you might say, does this matter, and why should we single psychiatry out on this?  Perhaps we should not; I personally have seen from working in other medical specialties that psychiatry’s reluctance to engage with user groups is shared by other branches of medicine where there reside doctors who are very unwilling to engage with patients.  Many people return from a stay in a hospital medical or surgical ward with reports of offhand medical staff and have been so uninvolved in their care that they are barely aware of what has happened to them.  However, whilst psychiatric disorders resemble those of physical medicine in many ways, their formulation cannot easily be captured with the same lexicon and the interaction between psychiatrists and their patients is different.  You can, at least in theory treat, a patient’s coronary arteries without so much as exchanging the time of day with them.  A cardiologist who takes into account their patients’ community role and psychological well being may have more satisfied patients, but it is not their primary business.  Psychiatry, on the other hand, deals with thoughts, feelings and behaviours and is entirely cited in the social world.  Our outcomes are less mechanical and more nuanced than those of other parts of medicine.  We have power to define normality, to bestow stigmatizing labels and to take freedoms where we think fit**.

Psychiatric disease is often chronic, so a beneficial relationship between doctors and patients can only be to mutual benefit.  The fuller dialogue with patients and with user groups could lead us to devise services that genuinely engage people with mental health problems and inform our theories as to the nature and boundaries of psychiatric illness.  Such engagement will lead to responsibilities for our patients too; they, as well as the wider public need to be will to be understanding over the particular areas of difficulty in our practice, such as the use of the mental health act.  Recognition will also be needed of the fact that user groups do not speak with one voice and potentially have contradictory messages.

If you have worked with user groups in any capacity, please leave a comment below and tell of your experience.

***

*Criticism of psychiatry from former users is, of course, not new.  In 1620 for instance the House of Lords received the ‘Petition of the Poor Distracted People in the House of Bedlam’ a complaint against the inhumane treatment of the Bedlam Asylum inmates.

** Not that I was there, but this transcript of a 2006 debate organised by the James Naylor Trust gives an idea of how upset some people are with psychiatrists.

Links:

Users’ movement and the challenge to psychiatrists – 1998 British Journal of Psychiatry

Addendum 5 July 2009

An interesting new publication by Pat Bracken and Phil Thomas on the user groups subject:

Beyond consultation: the challenge of working with user/survivor and carer groups

Common sense, nonsense and the new culture wars within psychiatry. Invited commentary on . . Beyond consultation

Authors’ response. Invited commentary on … Beyond consultation

Addendum 8 February 2010

Louise Pembroke has written for Openmind magazine about the relationship between psychiatrists and user groups and this is well worth a read.

6 Responses to “User groups”

  1. Neuroskeptic says:

    I have no experience with users groups, but I am a “service user” (or as I prefer to call it, patient) myself, so perhaps this is notable?

    I am in the rather unusual position of being both a patient with depression and an academic who studies (& blogs about…) depression scientifically, so I’m not sure how my experience generalizes. But I’ve never had any contact with user groups. I know there are some in my area because I’ve seen the posters up in a local Mind drop-in center where I went for a charity party once. The one that stuck in my mind was about a petition against ECT and “psychosurgery”. Since I’m generally in favor of both of those things (my grandfather had ECT and swore by it) I didn’t feel any desire to find out more…

    So bearing in mind that I’m an outlier I think it’s fair to say that these groups represent a (mostly self-) selected certain cross-section of all “service users” that a psychiatric is likely to see.

  2. Paul says:

    “We have power to define normality, to bestow stigmatizing labels and to take freedoms where we think fit.”

    Surely normality is defined by careful research and statistical analysis. I thought psychiatrists (and mental health professionals generally) are massively constrained by evidence (rightly so), and therefore are far from free.

    I also thought psychiatrists (and approved social workers / clinicians) were constrained by legal due process when it comes to taking freedom.

  3. Paul – perhaps I got a bit carried away with rhetorical flow here.

    I don’t think that psychiatrists ‘define’ normality in as far as this is possible, the zeitgeist does that, although psychiatry/psychology does have an influence in this e.g. with PTSD. There are certainly books written about personality traits and DSM/ICD identify syndromes; but these aren’t especially helpful at the coal face. What I really have in mind is a scenario when someone is brought to the psychiatrist who feels that they are acting completely normally and the psychiatrist will then have to make a judgment about this. Any given psychiatry ward will more than occasionally have amongst its number someone whom no one can really make up their mind whether they are psychiatrically unwell or not.

    Yes, there is a legal framework for detaining people involving other specialties. Psychiatrist do play a leading role in this. To detain someone under a section 2 takes 2 independent doctors and a social worker if memory serves.

  4. ron peponis says:

    I suppose it should be refreshing to hear a trainee psychiatrist expressing in this way about involvement. I fear you have a lot to learn about the so called user movement Doc. We have been the unwilling tool of psychiatry for the past 25 years. The national level movement has been eliminated over the past three years through clever manipulation of NHS organisations. There never was a regional level movement. And the local level movement is now virtually chattel to the trusts, who have nurtured a hand picked few who they can rely on to stay on message. At one point in the 1990′s there were over 800 independent local user groups. You would be hard pressed to find 50 independent groups today. Many will tell you that the national charities host a plethora of user groups and while this is true – they are unwittingly the tools of the charity businesses. Charity was redefined in the past decade to re-emerge as just another business model. The charities keep their groups close to their chest and it is rare to hear of cooperation between any charities, unless of course there is funding involved. Independence is not a feature of their groups’ operation. Organisation and even communication between these groups is non existent. There is no independent user movement. It was deemed un-necessary.

    Having said all that – I enjoy your blog.

  5. Will Meecham says:

    I applaud you on your interest in user groups. Since I am in the US, I don’t know about your local groups (in reference to Ron Peponis’s post). I am both a physician (not practicing anymore) and a psychiatric patient. Almost a decade after two psychiatric hospitalizations for depression (first) and manic psychosis (second), following a great deal of textbook reading about psychology, psychiatry, and neurophysiology, and having gotten to a solid place emotionally, I thought it made sense to retrain in psychiatry or at least psychotherapy. I did not apply terribly widely, but without exception I was rejected, typically with the comment that I had ‘disclosed’ too much about my past. I read this to mean the programs did not like hearing about my major psychiatric history. One program even reported my mental health problems to the licensing board (I realize that some would say they were justified in flagging a possibly ‘impaired’ physician, even ten years after hospitalization). Since I have an unimpeachable academic background, including attendance at a top-ranked medical school, it seems unlikely that there was any question about my ability to succeed.

    So I am left with the uncomfortable feeling that these programs do not feel it is safe to train someone with a history of serious psychiatric illness. What does that say about the attitudes within the mental health community toward the people they serve? That true recovery to full function is impossible? That once you’ve suffered major symptoms you can never be relied upon in positions of responsibility?

    Any attempt on the part of psychiatrists to listen to users/patients/consumers/clients is laudable. User groups are certainly one place where viewpoints about mental illness and its treatment can be found. As both a physician and a patient, I can guarantee that my understanding of major psychiatric symptoms is much richer and more informed since I experienced them directly. Watching an ill person from the outside never provides the same level of authority about the condition as having been through it on the inside. Not that psychiatrists don’t understand mental illness, of course; just that they would do well to listen to those who have been there.

    Thank you for acknowledging that fact.

  6. Zarathustra says:

    Hi there. Just discovered this blog.

    Speaking as a MH nurse I recall having a single lecture from a user group during my second year of training, and then virtually nothing since then. We did get it drilled into us about how part of the nurse role is to help users to have a voice within the system, but it would be wifully naive to pretend that nurses are not any less part of that system than psychiatrists are.

    I often find that where I’ve had the most fruitful discussions with user has been on blogs – either on my own or other peoples’. One could argue that the blogosphere is one of the few places where professionals and patients can engage together on a level playing field.

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