Monday, 4 March 2013

Brain Surgery For Mental Illness In Scotland: Going Under The Knife When Treatment Resistant

(on Mad in America 4 March 2013)

The Dundee Advanced Interventions Service (DAIS) at Ninewells Hospital, Dundee, Scotland, became a National Specialist Service in April 2006 and has been spearheading the advancement of neurosurgery for mental disorder or brain surgery for mental illness.  "The standard definition of Neurosurgery for Mental Disorder (NMD) is that provided by The Royal College of Psychiatrists: “…a surgical procedure for the destruction of brain tissue for the purposes of alleviating specific mental disorders carried out by a stereotactic or other method capable of making an accurate placement of the lesion” (Royal College of Psychiatrists, 2000)." from page 9 of DAIS 2012 Annual Report.

(Declaration of interest: CM has received no payment from any pharmaceutical companies and has no medical training but does have over 40 years experience of engagement with the psychiatric system, personal recovery from serious mental illness and has stood with many family members in their recovery journey)

In this short blog post I will attempt to critically evaluate DAIS from the survivor perspective, trying to make sense of an intervention that is irreversible and doesn't claim to be a cure, yet is apparently requested by increasing amounts of patients, some of whom may be detained under the Scottish Mental Health Act.  Like many other colleagues I have major concerns that this development is a retrograde step in mental health care and reinforces the biomedical model of mental illness, at the same time undermining the recovery movement.

Since 2006 there have been a total of 260 referrals, 152 women and 108 men, to DAIS and they "believe that there remain considerable numbers of patients with unmet needs and (we) are keen to ensure that they have the opportunity to be referred to the service.".  The DAIS leadership have diligently promoted their service throughout the UK over these years, assisted by psychiatrists in local areas, some of whom work for the Mental Welfare Commission (MWC) for Scotland, the organisation that oversees the rights of patients under the Mental Health Act.  Here is a RCPsych meeting programme from 2007 with presentations by the two lead DAIS psychiatrists David Christmas and Keith Matthews, chaired by an NHS Fife consultant.  And Fife, where I live, has the most referrals, percentage wise, of any Scottish area.

Fife also had the most 'Left Behind' patients still in long/medium stay psychiatric inpatient care, according to the 2011 MWC report, from their visits to people with 'severe and enduring mental illness'.  A label that Fife psychiatrists tried to pin on me back in 2002 (Mad in America year of publication) when I was given a schizoaffective disorder diagnosis following a menopausal psychosis, then psychiatric drug cocktails of risperidone, venlafaxine and lithium, and told that I had lifelong mental illness.  But I didn't believe it, took charge of my own mental health in 2003/4 and recovered.  It wasn't easy and required inner strength and resilience, to resist the prevailing culture.  Fortunately I'd had two previous experiences of complete recovery from psychoses and traumatic psychiatric treatment which gave me confidence.

The Scottish Recovery Network was "launched in 2004 as an initiative designed to raise awareness of recovery from mental health problems".  I have a paper copy of the original proposal document entitled 'Creating an Expectation of Recovery: A joint proposal for support to create an expectation of recovery from the effects of mental health problems in Scotland, 2004-2006".  It was a collaborative proposal by a group of mental health organisations, including Penumbra, ENERGI (Fife mental health group), Working to Recovery, NSF (Support in Mind Scotland) and SAMH. In the activities and expected outcomes within this founding document, SRN was to be hosted by a "user"organisation and it would have a co-ordinator "but much of the work is done by the membership".  According to the SRN website Penumbra hosts SRN and they have a strategy group of representatives from 'stakeholder groups'.

It seems that 'expectation of recovery' became 'raising awareness of recovery' during the formation of SRN, at the same time as I was making a full recovery from lifelong mental illness.  I expected to recover although I wasn't encouraged to recover, being in the severe and enduring cul-de-sac or dead end street.  Is this why the expectation of recovery was modified, because of the biomedical model and patients who are deemed to be 'treatment resistant' or have 'treatment refractory' depression?  In whose opinion?  I was depressed when on risperidone and venlafaxine, took an overdose of the anti-depressant and the dose was maximised, followed by lithium to 'augment' the venlafaxine.  No change, still flat as a pancake, no motivation, mornings were worst, my sense of humour had deserted me, along with my singing voice.  I had no option but to take back control, to survive.

Mary O'Hagan writes in a specially commissioned SRN article 'Legal coercion: the elephant in the recovery room':   "Legal coercion, through mental health legislation, empowers selected mental health professionals with support from the police and the judiciary to detain people in hospital, treat them without their consent, place them in solitary confinement (seclusion), and in many jurisdictions to compel people to take treatment in the community. Legal coercion erodes all the cornerstones of the recovery philosophy, yet it remains a core response in our mental health systems"

It seems too easy to resort to force when the option is available and I've seen little improvement since 1970 when I visited my mother in a locked psychiatric ward.  The use of ECT declined after pressure and now there are stronger combinations of psychiatric drugs, forcibly injected if necessary, when the patient is unwilling or non-compliant.  I have personally witnessed the major side effects of a clopixol acuphase injection where the patient experienced severe headaches after 24hrs, became aggressive and was banging their head off tables and doors.  And very recently a cocktail of psychiatric drugs, including haloperidol, olanzapine and sodium valproate sending a mentally distressed patient into a full-blown psychosis, whereupon they were diagnosed with schizoaffective disorder.

More women in Scotland are referred for advanced interventions, brain surgery for mental illness, and the mean age is 47 with an 18-84 years spread.  Similar to ECT in Scotland where two thirds women to one third men get the treatment, one third involuntarily or deemed to be 'without capacity', see Scottish ECT Accreditation Network report.  Of women over 60 getting ECT, half of them get it against their will.  To ensure that I won't be a candidate for either ECT or brain surgery for mental illness, I've written this in my Advance Statement which was completed in discussions with a psychiatrist who has witnessed my statement and put it at the front of my psychiatric notes.  My youngest son will be my Named Person if I ever happen to be detained under the Mental Health Act.

I believe that anterior cingulotomies and other brain surgery for mental illness exist because of the biomedical model in mental health which acts as a deterrent to recovery for certain groups of patients, those for whom the psychiatric drugs and ECT don't work.  I know that the drugs don't work for me and make me depressed, having been forced to take chlorpromazine in 1978 and 1984, then risperidone, venlafaxine and lithium in 2002/3.  Fortunately I managed to avoid ECT in 1978 when it was a 'popular' treatment, because my mother had many courses of it against her will in the 50's and 60's, and had a distressing time as a psychiatric inpatient.  She was persuaded/forced to eventually take a depixol injection every three weeks for life, until her death in 1998, aged 68.

The Dundee Advanced Interventions states that it "represents one of only a few clinical teams internationally who provide neurosurgical interventions for psychiatric disorders". In 'Status of neurosurgery for mental disorder in Scotland' by Keith Matthews (DAIS and Dundee University) and Mufta S Eljamel, BJPsych, 2003, the authors write:    "To assert that the brain of an individual with chronic, severe depression or OCD represents ‘healthy’ tissue now seems ill-judged and implausible. We can no longer conclude that neurosurgery for mental disorder is targeting ‘healthy’ tissue."
The DAIS team are committed to keeping brain surgery for mental illness alive and well in Scotland, and spreading their message far and wide.   They obviously believe that their service is valid and valuable, and have persuaded psychiatrist colleagues of the need for surgical intervention in cases of severe and enduring mental disorders that don't respond to psychiatric drug treatment or electroconvulsive therapy.

I say that the need for brain surgery in mental health demonstrates psychiatric system failure and therefore the recovery movement in Scotland hasn't fulfilled its expectations.  I want to see a renewed focus on recovery for all, a rediscovery of people's strengths and resilience with no recourse to irreversible brain surgery for mental illness.  Let's find better ways of treating people who are resistant to psychiatric treatment.  It makes sense.

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