(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.
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.
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"
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
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.
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."
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.
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.