Office of the Senior Practitioner
Independent psychiatric review of former
Kew Residential Services residents conducted by the Centre for
Developmental Disability Health Victoria between 27 February and 30
November 2008
Independent psychiatric review of former Kew Residential Services residents
conducted by the Centre for Developmental Disability Health Victoria between 27
February and 30 November 2008.
A report commissioned by the Senior Practitioner, Disability Services, Department
of Human Services.
Prepared by : Dr Carlos d’Abrera MBBS, BSc,
Consultant Psychiatrist and Senior Lecturer
CDDHV Monash University
Omnico Business Park
Bldg 1, 270 Ferntree Gully Rd
Notting Hill Vic 3168
MPsych, FRANZCP
December 2008
Introduction
The former Intellectual Disability Review Panel (IDRP) reviewed all draft general
service plans (GSP) of residents relocating from Kew Residential Services (KRS) to
various regions following a request from the Secretary, Department of Human
Services. From this review the IDRP found that approximately 20 per cent of the
440 KRS residents had a psychiatric diagnosis. Moreover the IDRP found that the
most common diagnosis was Psychotic Disorder NOS (not otherwise specified) (DSM IV
298.90).1 The prevalence rate of Psychotic Disorder NOS in the population of
people with a disability is difficult to ascertain because:
1. It is extremely difficult to diagnose in people who have severe communication
difficulties.
2. Psychotic Disorder NOS is a diagnosis based on the psychiatrist’s clinical
opinion and not on prevalence studies.1
The IDRP recommended that 82 former KRS residents receive an independent review of
the psychiatric diagnoses and treatment to ensure that there was an optimal
response to the residents’ needs.
The follow-up of the reviews for the former KRS residents was referred to the
Senior Practitioner just prior to the decommissioning of the IDRP in September
2007. Specifically, the Senior Practitioner was requested by the IDRP to:
1. examine whether an independent psychiatric review had been conducted as
recommended by the IDRP especially for those former KRS residents with a
1
Psychotic Disorder NOS refers to a category of psychotic symptomatology (delusions,
hallucinations, disorganised speech, grossly disorganised or catatonic behaviour).
psychiatric diagnosis of Psychotic Disorder Not Otherwise Specified (DSM IV
298.90)
2. ensure medication for former KRS residents prescribed for the primary purpose
of behavioural control is reported as chemical restraint.
Preliminary findings by Centre for Developmental Disability Health Victoria
(CDDHV)
This report follows the independent psychiatric review of former KRS residents for
the Office of the Senior Practitioner.
Of the 76 former KRS residents requiring a review, 11 residents residing in
regional Victoria were reviewed by regional psychiatrists and the remaining 65
residents were reviewed at the CDDHV by independent psychiatrists. Where
possible, the residents themselves were interviewed. Most of the history was
provided by the direct support workers, family members and case records that were
made available for the consultations.
Of the 65 residents requiring a review by the CDDHV, 60 per cent were male and 40
per cent were female, with a mean age of 50.5 years.
This report is divided into four parts:
1. a fictional case vignette and commentary based on a ‘typical’ resident review
(attached is Table 1.0 summarising the original and revised diagnoses,
medication changes and medical co morbidities generated by the independent
psychiatric assessments)
2. a general discussion of key issues
3. recommendations
4. concluding remarks.
Case vignette: fictional story loosely based
on a ‘typical’ review
Johannes
Johannes is a 53-year-old man with a moderate intellectual disability of
unknown cause. He was born in Melbourne to a working class family, and was the
youngest of four children. His father died shortly after his birth in an
industrial accident leaving his mother, Mable, who has a history of
depression, to raise the children.
Johannes’s birth was unremarkable but he had feeding difficulties and bonded
poorly to his mother. Attainment of motor milestones was delayed and, at the
age of three, Johannes had very limited speech. He cried frequently and was
difficult to settle. He related poorly to other children including his own
siblings. Johannes was five before toilet training was achieved. He was
assessed by paediatricians at the Royal Children’s Hospital and was noted as
having ‘subnormal intelligence’. No interventions were recommended.
By the age of six, Mable found it increasingly difficult to manage and, after
much anguish and deliberation, made the decision to relinquish Johannes to Kew
Children’s Cottages (KRS). More testing and psychiatric assessment was
undertaken by staff at KRS and Mable was informed that her son was ‘dull but
trainable’. Rocking, screaming and head-banging were attributed to ‘childhood
psychosis in the context of mental retardation’. Johannes had his first
epileptic seizure at the age of 19 and following consultation with a
neurologist was commenced on Dilantin,2 a mood stabiliser. This was later
changed to Epilim,3 another type of mood stabiliser where he was prescribed a
dose of 500mg twice daily. His last seizure was eight years ago.
Commentary
Johannes’s story is the all too familiar scenario for former KRS residents
reviewed by the CDDHV. Looking through original files tells as much a social story
as a medical or psychiatric one. Institutions such as KRS provided a role in caring
for people with intellectual disability in the absence of community-based
resources and at a time when much less was known about pervasive developmental
disorders. Residents at KRS had the benefits of an on-site multidisciplinary team
to address both medical and psychological needs. Past files show that residents
had regular psychiatric reviews, even if the documentation and justification for
certain treatments were scant. Involvement of family in decision making was not
common.
Medications used for the primary purpose of behavioural control
Johannes exhibited a number of stereotypical behaviours including hand-biting,
rocking and slapping his face. These behaviours worsened if regular routines were
disrupted or if he was subjected to noisy or chaotic environments, which were
commonplace. Occasionally he would hit out at others, particularly if he perceived
that they were invading his personal space. Johannes was initially prescribed
Largactil,4 a typical antipsychotic, to treat these behaviours, which diminished
following prescription this medication. Over the years, as was the case for many,
Johannes was prescribed a number of psychotropic5 medications. These included
Melleril (thioridazine) and Stelazine (trifluoperazine), previously known as
‘major tranquilisers’ and now as ‘typical antipsychotics’. These drugs were
sometimes administered in combination and occasionally caused Johannes to shake
excessively or to experience muscle stiffness. When these symptoms occurred, the
dose of medication was reviewed and/or anticholinergic agents such as Cogentin
(benztropine) or Artane (trihexyphenidyl) were administered to help reduce these
side effects. Abrupt attempts at stopping the medication altogether usually
resulted in an exacerbation
of behaviours of concern, and the psychotropic medication would quickly be reintroduced. In the 1990s Johannes was changed to newer antipsychotic medications,
known as atypical antipsychotics to manage behaviours of concern. Olanzapine was
successfully introduced in 1994 in an attempt to manage difficult behaviours with
2
Generic name: phenytoin sodium
3
Generic name:
4
Generic name: chlorpromazine
5
sodium valproate
Psychotropic medication includes the antipsychotics, antidepressants, anticonvulsants and
anti-anxiety medications.
fewer extrapyramidal side effects, and this is his current medication. He no
longer experiences tremors or muscle stiffness.
Johannes has a diagnosis of ‘Psychosis Not Otherwise Specified’ and his
medications are now reviewed every six months by a psychiatrist at Johannes’s new
shared supported accommodation (SSA), Apple Court.
Johannes shares his SSA with three other residents who are non-verbal, and who
were also long-term residents of KRS. Apple Court has two staff (direct support
workers) rostered for day shifts and one staff member rostered at night. Johannes
now attends a day program from 9.00 am to 3.00 pm five days a week. He goes
swimming and helps with a ‘paper round’ delivering pamphlets. He helps to unload
the dishwasher and set the table at home.
Past psychiatric assessments: commentary
Psychiatric assessments, usually made in childhood or adolescence, were often
brief and frequently made reference to ‘psychosis’. The terms ‘schizophrenia’ or
‘childhood schizophrenia’ were used also, and often interchangeably. Initial
diagnoses were sometimes made by the ‘Psychiatric Superintendent’, sometimes by
paediatricians, and sometimes by other visiting psychiatrists.
Many of the KRS residents reviewed have pervasive developmental disorders on the
autistic spectrum. The term autism is a relatively new one, and has replaced
vague, outdated and pejorative nomenclature such as ‘childhood psychosis’ or
‘childhood schizophrenia.’3 A recognition that people with autism can react
apparently catastrophically to certain environmental stimuli (noise, crowds,
disruption to routine) has only recently found widespread acceptance. This
important diagnosis is usually made during childhood and is more difficult to make
cross-sectionally in adulthood. Nevertheless the triad of impairments associated
with the disorder (deficits in social interaction, communication and imagination)
were present in at least half of the cohort reviewed.
In keeping with a putative diagnosis of autism, many of the residents showed
dramatic improvements in mood and behaviour following the change from
institutionalised settings to SSA. This type of accommodation appears to be
advantageous in some respects because there is less ‘unpleasant’ stimulation with
greater potential for privacy. At the SSA, individual resident needs are more
often met and it is easier to adhere to routines and staff have greater scope for
1:1 support when it is invited or indicated. Paradoxically, some behaviour
previously present but ignored in the institutionalised setting can become
‘magnified’ or unmasked in the often calmer milieu of the SSA.
The use of antipsychotic medication in this population was understandable in some
individuals given the severity of self-harm or harm to others. Head-banging can
lead to, inter alia, head injuries, retinal detachment and blindness. Skin
picking, if severe, can cause permanent scarring. Assaultive behaviour in some
residents occasionally involved biting noses or breaking limbs. The consequence of
these behaviours was often increased isolation and less community participation.
Despite their side effects, antipsychotics can still be effective where other
measures fail in people with intellectual disability whether or not they have a
diagnosis of mental illness or autism.
The decision of the reviewing psychiatrist at the time to change the resident from
typical agents to atypical ones was presumably driven by a desire to minimise the
usual extrapyramidal side effects such as akathisia, Parkinsonism and tardive
dyskinesia. This issue about observing protocol for ‘off label prescription’ for
medications that require PBS authority is more honoured in the breach than in the
observance. While many residents do not meet the strict criteria required for the
necessary diagnoses of schizophrenia or bipolar disorder, the atypical
antipsychotic may be the most appropriate and necessary treatment for disabling
disturbance to mood and/or behaviour. Clinicians want to first and foremost ‘do no
harm’ and prescribe effective, well-tolerated medications, even if this means
taking a ‘broad interpretation’ of the PBS indications so that the resident is not
charged vast sums of money to get the treatment they need.
Impact of medications on health and wellbeing
Common side effects associated with psychotropic medications: commentary
Johannes has gained approximately 10kg since starting olanzapine. He always liked
to eat fatty foods and his highlight for the week is having a ‘chicken parma and
chips’ at the local café. While at KRS, Johannes became adept at stealing food and
would attempt to take food from other residents’ plates at mealtimes, which would
sometimes lead to verbal or physical altercations. During his most recent annual
health screen he was significantly overweight in the obese range, and recorded
high cholesterol and lipids on blood examination.
His psychiatrist stopped the olanzapine abruptly and, within one week, some of
Johannes’s old behaviours of concern started to re-emerge. These included biting
his hand to the point of tissue breakdown, severe anxiety and prolonged bouts of
screaming that limited his access to the community. A number of other atypical
agents were tried unsuccessfully. Risperidone caused marked sedation and also
appeared to stimulate appetite. Amisulpride (Solian) caused muscle stiffness and
Seroquel (quetiapine) was sedating and caused dizziness. The olanzapine was reintroduced but at a lower dose and Johannes has started a healthy eating program
at his SSA. He also uses the treadmill at the day program twice a week. The
behaviours of concern have diminished and he has started to lose weight. His GP
has also put him on an agent that lowers lipids in the blood.
Olanzapine was the most commonly prescribed atypical agent in this group. Although
comprehensive documentation was rarely available, some residents underwent a trial
of reduction or cessation of this medication after years of treatment. This was
frequently unsuccessful and often led to a re-emergence of behaviours of concern,
even when other agents were substituted. It should be stated that the rate of
medication withdrawal was often unclear from the case files.
Olanzapine appears to be well tolerated with regard to extrapyramidal side effects
particularly compared with the older typical agents. There were few reports of
acute dystonias and few cases of more chronic extrapyramidal side effects such as
Parkinsonism, akathisia and tardive dyskinesia. Over-sedation and daytime
somnolence were also uncommon with this medication.
There is a well-documented link between the use of certain medications and weight
gain, which was frequently reported in the cohort reviewed. These include many
anticonvulsants, mood stabilizers, antipsychotics, and some antidepressants. It
should be stressed that not all residents on these medications necessarily develop
side effects. Olanzapine has been causally associated with a metabolic syndrome in
addition to weight gain. Current guidelines would suggest that people prescribed
olanzapine should have frequent fasting cholesterol, lipids, blood sugar levels
and ECGs.
Risperidone can exacerbate weight gain, and can also cause akathisia and
restlessness. In some people it can elevate serum prolactin, which can lead to
osteoporosis.
The use of benzodiazepines, particularly long-acting agents, carries risks of
over-sedation and impaired cognitive function. These agents were usually
prescribed as a PRN6 rather than a regular medication in the KRS cohort.
Some residents have engaged in healthy eating programs and regular exercise to
reduce the impact of weight gain.
Discussion of key issues identified following the independent
reviews
conducted
Past psychiatric diagnoses and the relationship with autism spectrum disorder
Many residents in this cohort had psychiatric diagnoses made in childhood, and
then further diagnosis in adulthood. As previously discussed, the childhood
diagnosis was usually one of ‘childhood schizophrenia’ (or a variant) now known as
autism. However, even when this diagnosis was made early in life this seems to
have fallen off the consciousness of those caring for the resident and sometimes
misinterpreted as ‘schizophrenia’ or ‘psychosis’ rather than identified as another
term for ‘autism’ or ‘autistic spectrum disorder’.
We also identified many of the residents as having longstanding and pervasive
patterns of behaviour consistent with pervasive developmental disorders such as
autism. We know that people with autism can exhibit self-injury or harm to others
if routines are disrupted or if they are exposed to certain environmental
triggers. The importance of having a diagnosis of autism cannot be overstated
because it means that staff and health professionals can better understand the
resident’s responses to certain environmental triggers and stressors, and use
positive behavioural strategies where appropriate.
It is equally important to recognise that people with autism also can have mental
health concerns that require appropriate, timely and continuing mental health
support.
Need for regular psychiatric reviews
Some residents had their original diagnosis reviewed a number of years into
adulthood, but generally speaking there was an absence of consideration of
differential diagnoses, multiple or competing diagnoses or diagnostic revision by
the same clinician. Diagnoses tended to be one-dimensional and include Axis I
mental illness without reference to environmental and social determinants of
mental illness. A diagnosis of ‘Psychotic Disorder NOS’ was frequently given but
with limited justification.
Of course, making definitive diagnoses of Axis I mental disorders in this
population is a difficult and often highly subjective process. Much weight is
given to informant history or reviewing of behaviour charts and other case
records. Diagnostic criteria for the general population (DSM-IV1, ICD-105) are
6
PRN ( pro re nata):
to be used as needed
rarely applicable in intellectual disability, particularly in the person who has
severe communication difficulties or a severe physical disability. Diagnostic
manuals like DM-ID6 and DC-LD7 are more sensitive instruments in this population,
but are by no means completely comprehensive or reliable.
Consideration should also be given to potentially important physical causes of
behaviours of concern as this was also frequently omitted in the KRS cohort.
Typical versus atypical antipsychotic medication
Barnard and colleagues8 reviewed the use of atypical agents in autism and found
that:
Thirteen studies using risperidone, three using olanzapine, one using clozapine, one using amisulpride and one
using quetiapine were identified. Few firm conclusions can be drawn due to the limitations of the studies; however,
there is an indication that risperidone may be effective in reducing hyperactivity, aggression and repetitive
behaviours, often without inducing severe adverse reactions. Olanzapine and clozapine may also be effective
(page 1).
In the KRS cohort it was reassuring to see prescribing practice trending from
typical antipsychotics to newer atypical agents. Olanzapine was generally
favoured. It is often efficacious in attenuating ‘trait anxiety’ in people with
autism, particularly where other conventional anxiolytics have not worked. There
has been a move in general psychiatry to use smaller doses of some agents
(risperidone, for example) than those initially recommended when these drugs were
first marketed. This represents a fine tuning based on risk versus benefit data
from clinical practice. Individual recommendations from the IDRP often concurred
with the use of atypical agents but at lower doses where possible.
Few randomised clinical trials have been performed looking at the efficacy of
atypical antipsychotics in treating the core symptoms of autism, and clearly more
research is needed in this area. A recent study in The Lancet found that risperidone
offered no advantage over haloperidol or placebo in the management of aggressive
challenging behaviours in intellectual disability.9 However, the study only
included a small number of people with autism, and there were other serious flaws
in the study design.10 Our experience is that many people with autism benefit
greatly from judicious prescription of these medications. In people where other
treatment modalities and interventions have been inadequate, prescribing remains a
balancing act between ameliorating behaviours of concern without causing too many
side effects. Preference for atypical agents is clearly beneficial in this regard.
Although the majority of residents were prescribed a single atypical antipsychotic
agent, typical agents were also prescribed; sometimes as a PRN medication and
sometimes in combination with atypical agents. Some residents were prescribed
unconventional combinations of medication without much in the way of documented
justification or evidence. Polypharmacy can be potentially dangerous in all
people, let alone people with intellectual disability. Polypharmacy can potentiate
side effects, cause drug–drug interactions and blur the diagnostic picture for
clinicians and so, where possible, this should be avoided and should only continue
where there is clear evidence of benefit to the person. In most cases where
anticonvulsants (sodium valproate, carbamazepine, lamotrigine) were prescribed,
the resident had epilepsy. In some cases, these medications were used
(appropriately) for managing bipolar disorder where it was diagnosed.
Ongoing psychiatric management
Most of the former KRS residents reviewed by the CDDHV require regular,
ongoing psychiatric monitoring.
The current poorly defined mechanisms for psychiatric (and hence medication)
review are a cause for concern. Direct support staff often seemed to be unclear
about whether the resident had regular psychiatric review. There was a paucity of
documentation or correspondence to the GP/SSA in the files from treating
psychiatrists indicating when the next review would take place. Those residents
who were identified as having ongoing psychiatric care appeared to have
infrequent, sporadic or ad hoc follow-up with no clear long-term goals with regard
to treatment.
At a minimum, psychiatric follow-up should involve a targeted approach to
symptoms, review of mood and behaviour charts, monitoring of side effects through
physical examination and blood parameters, and attempts to trial, wean or
substitute medication where appropriate.
Many of the recommendations made in the IDRP reports suggested gradual withdrawal
of medications, increase in some doses, and medication changes. Such changes are
always risky if not supervised by a clinician with appropriate expertise in the
area. Precipitous withdrawal of some medications can lead to withdrawal syndromes.
This applies to benzodiazepines, mood stabilizers and antidepressants. Withdrawal
of medication can also lead to a recrudescence of psychiatric or behavioural
symptoms that are still dormant, and can therefore be a potentially risky
undertaking.
None of the residents reviewed were linked in or had assessments by their area
mental health service despite many having disabling psychiatric illnesses and
being treated with high-potency psychiatric medications.
Lack of resources and poor access to mental health services
Residents with intellectual disability and mental health problems do not have
adequate access to services with skills in the assessment, treatment and
support.
For its faults, the institutionalised setting provided a minimum standard of
regular, ‘in-situ’ medical and psychiatric care. Direct support workers who are
not nurses, have to monitor health, mood and behaviour, often with little guidance
or support. SSA staff are not trained mental health professionals. They are not
experts in psychiatric medications. They have to manage people with a high
incidence of co morbid mental illness in addition to behaviours of concern that,
in some situations, were associated with autism.
In some cases, behaviour intervention support teams (BIST) are able to provide
environmental assessments and behavioural strategies for managing behaviours of
concern. BIST do not provide direct psychiatric or medical support. It is often
difficult for residents in SSAs to access medical and psychiatric care. This can
be related to the logistics of resident mobility, staff availability for attending
appointments, making appointments with the person’s usual doctor (particularly if
they’re busy) and a reluctance of many GPs to do home visits. Emergency
appointments with GPs at short notice are often difficult to organise.
Clinicians at the CDDHV work closely with community GPs and appreciate that a
significant amount of complex psychiatric work devolves to them in the absence of
widespread, coordinated teams with expertise in mental health and in intellectual
disability. Despite the tremendous and invaluable support provided by some, many
GPs struggle to see people with intellectual disability for regular monitoring of
changes to medication because of excessive workload, a lack of time for
comprehensive consultations, or a lack of expertise, training or support.
Emergency appointments with the person’s private psychiatrist can also be
difficult, particularly if the person needs to be seen ‘out of hours’. Often there
is a wait for weeks, and sometimes months.
SSA staff report great difficulties and frustration in obtaining psychiatric
services from area mental health teams (continuing care, mobile support and crisis
assessment and treatment teams), even when the issue or behaviour is clearly
related to mental illness. Psychiatric triage often refuses service because they
label the problem ‘behavioural’ and assumes that the resident is acting that way
because of their intellectual disability. This decision is usually made by someone
on the end of a telephone, without any assessment of the person in question.
The Victorian Dual Disabilities Service (VDDS) will generally provide a ‘one off’
assessment without direct treatment or follow-up. However, access to this service
is reliant on the community mental health teams referring on to their service.
This requires a capacity to recognise that there is a mental health problem and a
commitment to continue with the management once assessed by the VDDS. Not all
clinicians in the regions appear to be aware of this service. The person must be
already linked in to their area mental health team or be seeing a private
psychiatrist. At time of writing this report the waiting list for VDDS was
approximately three months.
The CDDHV is primarily an academic, teaching and research organisation that
provides clinical support and consultancy to GPs. Its primary aim is to support
generic services in the provision of health care to this population. It does this
with a limited clinical service, advocacy within the health profession, and
undergraduate and postgraduate education programs. It does not have the resources
to support the large numbers of people with intellectual disability and mental
health problems.
The CDDHV is staffed by three psychiatrists and GPs with an interest and expertise
in the physical and psychological health of people with intellectual disability
who have also supported a small number of GPs and psychiatrists through registrar
training programs. The CDDHV does not currently have a psychiatry registrar
because of lack of funding and is not resourced to do home visits or provide
after-hours care. The CDDHV sees high-priority individuals for assessment and
recommendations. The current waiting list at the time of writing this report to
see a psychiatrist is three to six months and even this has to be limited to those
with more acute psychiatric problems. Ongoing management has to be carried out by
community-based services, which are often non-existent or inaccessible.
For people with intellectual disability and medical health problems to be
adequately supported, there is a need for psychiatrists with experience and skill
in the field linked within a mental health infrastructure that supports them. At
this stage there simply are not enough psychiatrists with these skills, and little
linkage with mental health infrastructure. For this to change there needs to be
support for training positions, community-based consultancy positions and
development of skills within the current mental health support infrastructure.
The way forward: recommendations for the future
Recommendation 1: People with a diagnosis of autism
1.1
Adults with intellectual disability and autism will often require a
multidisciplinary approach that includes expertise in the use of psychotropic
medications and the diagnosis of mental health problems in this population.
1.2
A Fragile X Screen and Karyotype and other appropriate genetic testing
should be performed where possible.
1.3
Clinicians should be aware of the possibility of unrecognised autism, even
in older patients, when there is a history of repetitive and stereotypic
behaviours, problems with communication and social abilities. A diagnosis can
then inform behavioural and pharmacological interventions and potentially
increase the availability of services. It can also provide families and carers
with a greater understanding of ‘odd behaviours’.
1.4
It should be recognised that co morbid mental disorders such as
schizophrenia or bipolar disorder frequently co-exist with autism.
1.5
The support within psychiatric services for people with autism under the age
of 18 should be continued into adult life.
Recommendation 2: Psychiatric diagnoses and the importance of positive
behaviour support
2.1
The key to providing optimal psychiatric care starts with a careful,
comprehensive and accurate assessment of the person.
2.2
Given that behaviours of concern and changes in mood are often
multifactorial in aetiology, it is important that a multidisciplinary approach
be adopted in addressing the management of these behaviours.
2.3
A behaviour of concern is usually due to any of the following in
combination: a physical issue, a psychiatric issue (including the neurobehavioural phenotypes of autism) or an environmental issue. A great deal of
care and expertise is needed to sort out these issues. A clinician with an
interest or expertise in intellectual disability is best placed to coordinate
the information gathering, synthesise the data and formulate a multi-axial
bio/psycho/social understanding of the person in the context of their
longitudinal history and environmental milieu.
2.4
It should be remembered that people with intellectual disability have a high
incidence of mental disorders and deserve the same comprehensive assessment as
those in the general population. Mood, anxiety, psychotic and personality
disorders can all exist, even in people with limited communication and more
severe levels of intellectual disability.
Recommendation 3: Importance of regular psychiatric reviews
3.1
A regular psychiatric review is recommended when the person continues to be
at risk of serious injury to themselves, at risk of injuring others or their
behaviour results in significant property damage and they have not responded to
alternative management. To achieve the best outcome for people living in SSA
we need to review the process to ensure that:
a. all those with intellectual disability on antipsychotic medication are
identified
b. there is an established reason for their medication as outlined in the
Disability Act 2006
c. the response is sufficient to justify its continuation
d. there is a monitoring process in place to review both efficacy and side
effects.
For those on antipsychotics to treat a psychiatric disorder there should be
documentation of a comprehensive assessment by a psychiatrist and a system in
place of ongoing monitoring to review both efficacy and side effects. Where
possible this should be through local mental health services and supported by
GPs.
For those on antipsychotics because of continuing risks to themselves and others
there needs to be documentation of the rationale for this, the evidence that it
has helped with the behaviour of concern and continuing monitoring for efficacy
and side effects. There also needs to be a process of regular review as to the
need to continue with the medication. These people should all have regular
comprehensive reviews by a medical practitioner and where indicated be referred
to a psychiatrist to determine any underlying psychiatric cause.
3.2
Some GPs with an interest in disability medicine could provide a vital
resource. Because psychiatric and medication reviews are time consuming there
is an issue of appropriate remuneration for such a service (GPs have a special
Medicare item number for the annual health check that takes into account the
time required). The criteria for the annual health check include the need to
look for side effects or efficacy of medications. This could be an opportunity
to ensure better review process and GP education programs could target this.
3.3
GPs will not usually screen for symptoms of mental illness unless there is a
specific concern. For this to occur, GPs need to be aware of how mental health
problems might present in this population.
3.4
Depression is as common in the general population as it is for people with
autism. While depression is usually managed by GPs, a psychiatrist should be
involved if there is no documented evidence of improvement with the use of
antidepressant medication. Where a person is diagnosed with depression and
being treated with an antidepressant this is not considered a ‘drug of
restraint’ and thus not reportable to the Senior Practitioner.
3.5
There is a need to build capacity for centres that could provide more direct
assessments and regular follow-up for people with a disability. The presence of
at least one full-time psychiatry registrar would create the possibility of
running regular clinics for assessments and medication monitoring.
Recommendation 4: Importance of regular medication reviews
4.1
The annual health screen at least ensures there is some formal assessment of
the physical health of people with intellectual disability.
4.2
If people are on antipsychotic medications, regular blood levels, serum,
cholesterol and lipids and weighs should be undertaken.
4.3
Medication needs to be monitored to ensure its efficacy and to assess for
side effects. Continued use of the medication should be dependent on whether
the medication has been shown as both essential and effective as well as
weighing up the impact of side effects if there are any.
4.4
There is a legitimate role for the prescription of atypical antipsychotic
medications for people with autism and for some individuals, these medications
have dramatically improved quality of life and functioning.
4.5
Where possible, medications should be prescribed at the lowest possible dose
and polypharmacy should be avoided. Target symptoms need to be defined and
monitored, as do side effects.
4.6
The prescribing of medications in this group requires caution and a degree
of expertise in the psychiatry of intellectual disability. Psychiatrists and
other medical practitioners with training and expertise in the use of
psychotropics in this population (in consultation with the treating GPs) are
best equipped to start, monitor and change psychotropic medications. It is an
often complex, labour-intensive task to make medication changes safely in this
population.
Concluding remarks
• To ensure the safest and best outcomes for this cohort of people assessed
for the OSP and other similar persons, multiple follow-up visits to the
psychiatrist will be required.
• One central issue common to area mental health teams and GPs is the need for
training and support in the psychiatry of intellectual disability.
References
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(4th edition), Washington DC.
2. Cooper SA et al. 2007, ‘Psychosis and adults with intellectual disabilities: Prevalence,
incidence and related factors’, Soc Psychiatry Psychiatric Epidemiology 42, 530–536.
3. Wolff S 2004, ‘The history of autism’, Eur Child Adolesc Psychiatry 13, 201–208.
4. Torr, J 2008, Submission to Because Mental Health Matters. CDDHV.
5. Janca A, Ustun TB, van Drimmelen J, Dittmann V, Isaac M 1994, ICD-10 Symptom Checklist for
Mental Disorders, Version 1.1, Division of Mental Health, World Health Organization, Geneva.
6. Fletcher R, Loschen E, Stavrakaki C, First M (eds) 2007, Diagnostic manual – Intellectual
disability (DM-ID): A clinical guide for diagnosis of mental disorders in persons with
intellectual disability. NADD Press, Kingston.
7. Royal College of Psychiatrists 2001, DC-LD: Diagnostic criteria for psychiatric disorders for
use with adults with learning disabilities/mental retardation. Gaskell, London.
8. Barnard L, Young AH, Pearson J et al. 2002, ‘Systematic review of the use of atypical
antipsychotics in autism’, Journal of Psychopharmacology, 16, 93–101.
9. Tyrer P, Oliver-Africano PC, Ahmed Z, Bouras N et al. 2008, ‘Risperidone, haloperidol, and
placebo in the treatment of aggressive challenging behaviour in residents with intellectual
disability: a randomised controlled trial’, The Lancet, 371 (9606), 57–63.
10. Trollor JN, Somerville ER, Somerville HM 2008, ‘Antipsychotics in individuals with
intellectual disability’, The Lancet, 371 (9623) 1501–1502.
Appendix
Table 1.0: Original and revised diagnoses, medication changes and medical co morbidities generated by the
independent psychiatric assessments
BPAD: bipolar affective disorder; GAD: generalised anxiety disorder; OCPD:
obsessive compulsive personality disorder; NS: not stated; PDD: pervasive
developmental disorder; PKU: phenylketonuria; TD: tardive dyskinesia
NB: Anticonvulsants used for the treatment of seizures have not been included in
the psych meds.
Name
A
g
e
S
e
x
ID
Original
diagnoses
Psych
meds at
R/V
Client 1
4
7
M
Se
v
Psychosis
OC(P)D
Risperidon
e 1m bd
Client 2
4
4
M
Mo
d
Psychotic
features
Olanzapine
15 mg
Client 3
5
2
M
Mo
d
Psychosis
Olanzapine
5mg
Client 4
5
7
M
Mo
d
BPAD
Psychosis
Client 5
5
1
M
Se
v
Childhood
psychosi
s
Organic
mental
disorder
OCD
LiC03
500mg
bd
Olanzapine
15mg
Valproate
200mg
bd
Olanzapine
20mg
Valproate
1500mg
Diazepam
PRN
Client 6
4
7
5
2
F
Pr
of
Se
v
NS
Client 8
3
8
M
Se
v
Client 9
6
2
M
Pr
of
NS
Spitting
Tearing
clothes
Psychosis
NOS
Client 10
4
3
M
Mo
d
Psychosis
NOS
Client 11
4
9
F
Se
v
OCD –
repetitive
rubbing of
genitals
Client 7
F
Anxiety
OCD
Client 12
2
8
F
Mo
d
Generalise
d anxiety
disorder
Client 13
5
3
M
Pr
of
Bipolar
affective
disorder
OCD
Diagnosis
at R/V
P
D
D
Autism
Y
Anxiety
disorder
Y
Epilepsy
Somnole
nce
Constipat
ion
NS
Y
BPAD
Y
Epilepsy
Stroke
Obesity
Diabetes
Bipolar 1
N
S
Wean olanzapine
Start aripiprazole
Mood and
behaviour charts
Needs endocrine
review
Epilepsy
NS
Y
Epilepsy
Constipat
ion
Asthma
Vit D
Obesity
OCD
Y
Continue
citalopram
Wean anafranil
Start sertraline
Metabolic screen
Weight loss
Fluvoxamin
e 100mg
bd
Nil
OCD
Y
Nil
Ripseridon
e 0.5mg
bd
TD
Mobility
issues
Nil
Olanzapine
5mg
Modecate
6.25mg
monthly
Paroxetine
20mg
Fluvoxamin
e 50mg
Risperidon
e 0.5mg
bd
Alprazolam
0.5mg bd
Sertraline
50mg
Low Na+
Ddx
schizophre
nia
BPAD
Hysterect
omy
Rubbing
thought
to be selfstimulator
y
GAD
Citalopram
20mg
Anafranil
125mg
LiCo3
3.5mg
daily
Olanzapine
5mg
Medical
issues
inc side
effects
Deafness
Overweig
ht
NS
PKU
Hep B
carrier
Nil
BPAD
OCD
Changes to
medication and
recommendation
s
Minimum dose
risperdal
Metabolic screen
Wean olanzapine
Trial SSRI
Behaviour
interventi
on
Wean olanzapine
Start SSRI
Metabolic workup
Drug levels
Metabolic screen
Nil
N
Metabolic
monitoring
Wean fluvoxamine
and risperidone
Y
More information
needed for Rx
Change
alprazolam to
diazepam then
wean
Trial of wean
sertraline
Ongoing
psychiatric care
Need for
paroxetine
BIST
referral
Name
A
g
e
S
e
x
ID
Original
diagnoses
Medical
issues
inc side
effects
Diagnosis
at R/V
?
?
Blind
Deaf
Obese
Constipat
ion
Constipat
ion
Osteopor
osis
Atypical
autism
Y
Wean anafranil
and risperidone
Colonoscopy
Autism
Y
Colonoscopy
Olanzapine
15mg
Chlorprom
azine
PRN
Constipat
ion
Underwei
ght
PDD
Impulse
control
disorder
Y
Intermittent
explosiv
e
disorder
Autistic
features
Psychosis
NOS
Fluoxetine
40mg
Olanzapine
2.5mg
Olanzapine
2.5mg bd
Epilepsy
BPAD
Epilepsy
Constipat
ion
NS
Monitor
constipation
Metabolic
monitoring
Medication
monitoring
Metabolic
monitoring
Optimising mood
stablisation
Wean olanzapine
Metabolic screen
Karyotype and
fragile X
Liver function
Mirtazapin
e 30mg
Risperidon
e 0.5mg
bd
Skin
picking
Paranoid
schizophr
enia
N
Medication review
and
rationalisation
Olanzapine
2.5mg
nocte
Epilepsy
Overweig
ht
Autism
Y
Wean olanzapine
Start
carbamazepine
Staff to use
MAKAT
ON
Manic
depressi
on
Childhood
psychosi
s
Autism
OCD
Selfharming
behaviou
rs
Selfstimulati
on
Anxiety
disorder
Psych
meds at
R/V
nocte
Paroxetine
20mg
mane
?
P
D
D
Changes to
medication and
recommendation
s
Behaviour
interventi
on
?
?
Client 14
4
9
M
Se
v
Client 15
5
7
M
Se
v
Client 16
6
0
F
Mo
d
Client 17
4
1
M
Se
v
Client 18
5
4
F
Mil
d
Client 19
5
0
F
Pr
of
Client 20
7
0
M
Mo
d
Client 21
4
2
M
Mo
d
Autistic
tendenci
es
Schizophre
nia
Anxiety
Depression
Psychotic
disorder
Client 22
4
5
F
Se
v
OCD
Depression
Risperidon
e 0.5mg
mane
Hypothyr
oid
NS
N
Wean risperidone
Use
routines
Communic
ation
book
Client 23
4
2
F
Se
v
Autistic
disorder
Trichotillom
ania
Paroxetine
40mg
Autistic
disorder
Trichotillom
ania
Pica
Y
Wean paroxetine
Metabolic
monitoring
Dietary advice
Maximising
flexibility
and 1:1
support
Client 24
4
8
F
pro
f
Autism
Psychosis
NOS
BPAD
Risperidon
e 2.5mg
Chlorprom
azine
75mg bd,
100mg
midi
PKU
Gastric
ulcer
Nutrition
al
deficie
ncy
Hypothyr
oid
Autism
Pica
Y
Wean medication
Add sertraline
Behaviour
approac
h for
PICA
Risperidon
e 3mg bd
Anafranil
150mg
Lexapro
10mg
Aripiprazol
e 10mg
Consistent
and
predictab
le
environm
ent
Environme
ntal and
behaviou
ral
interventi
ons
Structure
and
routine
Elbow
splints
Name
A
g
e
S
e
x
ID
Original
diagnoses
Psych
meds at
R/V
Medical
issues
inc side
effects
Diagnosis
at R/V
P
D
D
Changes to
medication and
recommendation
s
Glucose tolerance
test
Cholesterol
checked
Olanzapine
weaned and
replaced with
abilify
Behaviour
interventi
on
Pericyazin
e 10mg
midi
Client 25
4
3
M
Se
v
Manic
psychosi
s
Olanzapine
20mg
Citalopram
20mg
Overweig
ht
High
cholester
ol
Autism
Y
Client 26
4
5
M
Mo
d
Haloperidol
PRN
Epilepsy
Obesity
Ear
infection
Autism
Y
Client 27
5
1
M
Se
v
Autism
Psychosis
NOS
Schizophre
nia
Psychotic
Autistic
features
Olanzapine
10mg
nocte
Artane
2mg bd
Epilepsy
Reflux
High BSL
High
lipids
Nil
Client 28
5
0
F
Pr
of
NS
Self-injury
Olanzapine
15mg
Clobazam
7.5mg
Autism
Client 29
5
0
F
Se
v
Major
depressi
on
Mania
Olanzapine
30mg
LiCo3
500mg
Epilepsy
Overweig
ht
Low vit D
Haemachrom
atosis
Gastritis
Constipat
ion
Low vit D
Parkinso
nism
Bipolar
disorder
Lithium levels
Metabolic screen
Minimise
olanzapine
Treat
Parkinsonism
Client 30
4
8
M
Mo
d
‘Atypical
psychosi
s’
Fragile X
Psychosis
Wean citalopram
Use lowest dose of
risperidone
Graded
exposure
Client 31
5
1
F
Pr
of
Psychotic
disorder
Citalopram
20mg bd
Risperidon
e 4mg
Olanzapine
10mg
Citalopram
20mg
Mood
disorder
NOS
Wean olanzapine
Increase
citalopram
Metabolic screen
Mood chart
Client 32
5
5
F
Pr
of
Obsession
al
disorder
Risperidon
e 2mg
Clomiprami
ne
100mg
Epilepsy
Constipat
ion
Menopau
se
Cerebral
palsy
Somnole
nce
Epilepsy
Overweig
ht
Reflux
Autism
Y
Needs new GP
Wean risperidone
Replace
clomipramine
with SSRI
Healthy
eating
Client 33
6
1
F
Pr
of
Autism
manneris
ms
Risperidon
e 0.5mg
PKU
Tic disorder
?
Wean risperidone
Cardiovascular
risks
Fragile X screen
Behaviour
modificat
ion
Y
Pathology tests inc
fragile X and
karyotype
Metabolic screen
Urologogical
review
Neurological
review
Metabolic screen
Wean olanzapine
Increase physical
activity
Needs
predictab
le
environm
ent
Communic
ation
review
Name
A
g
e
S
e
x
ID
Original
diagnoses
Psych
meds at
R/V
Medical
issues
inc side
effects
Epilepsy
Diagnosis
at R/V
P
D
D
Changes to
medication and
recommendation
s
Nil
Behaviour
interventi
on
Client 34
4
3
F
Pr
of
NS
Nil
Client 35
4
4
M
Se
v
Psychosis
NOS
Olanzapine
2.5 mg
nocte
Pericyazin
e 10mg
Epilepsy
Autism
Y
Metabolic screen
Healthy
eating
Client 36
4
7
M
Mo
d
NS
Eczema
Autism
Y
Regular
medication review
Environme
ntal
consiste
ncy
Client 37
5
4
M
Se
v
Autism
Psychosis
Olanzapine
10mg
Artane
2mg
Epilepsy
Autism
Psychosis
NOS
Y
Metabolic screen
Use minimum
antipsychotic
Client 38
7
4
M
Mo
d
Schizophre
nia
Venlafaxin
e 150mg
Olanzapine
15mg
Constipat
ion
Perniciou
s
Anaemia
Bipolar
disorder
N
Fragile X and
karyotype
Metabolic screen
Wean effexor
Wean olanzapine
Client 39
4
9
F
Se
v
Autism
Chlorpoma
zine
200mg
daily
Autism
Y
Fluid charts
Metabolic screen
Monitor Na+
Review and update
antipsychotic
Behaviour
charts
M
Mo
d
Psychosis
Pica
Pervasive
developm
ental
disorder
Y
Wean anafranil
Wean risperidone
Increase valproate
Pathology review
BIST
referral
5
3
F
Se
v
Autism
Anafranil
175mg
Risperidon
e 4mg bd
Valproate
800mg
Risperidon
e 0.5mg
bd
Constipat
ion
Epilepsy
Low vit D
High chol
and
sugar
Low Na+
Oesopha
gitis
Duodena
l-ulcer
Client 40
4
8
Client 41
Epilepsy
Blindnes
s
Akathisia
Autism
Y
Client 42
5
4
M
Mo
d
NS
Olanzapine
10mg tds
Paroxetine
Autism
OCD
Y
Client 43
4
7
M
Se
v
Psychosis
NOS
Autism
Y
Client 44
5
2
M
Se
v
Organic
mental
disorder
Paroxetine
20mg
Olanzapine
20mg
Valproate
200mg
bd
Chloproma
zine
PRN
Paroxetine
20mg
Risperidon
e 3mg
Asthma
Migraine
Oesopha
gitis
Obesity
Sleep
apnoea
Oesopha
gitis
Stop risperidone
Neurology review
Metabolic screen
Change
antipsychotic
Change paroxetine
to citalopram
Metabolic screen
Minimise
olanzapine
Epilepsy
PKU
Upper-GI
Patholog
y
Nil
Wean medications
Metabolic
monitoring
Upper GI
investigation
Metabolic screen
Use lowest dose of
risperidone
Consistent
routines
Strict
routines
Name
A
g
e
S
e
x
ID
Original
diagnoses
Psych
meds at
R/V
Medical
issues
inc side
effects
Epilepsy
Oesopha
gitis
Osteopor
osis
Sclerode
rma
Diagnosis
at R/V
P
D
D
Changes to
medication and
recommendation
s
Psychiatric and
medical review
Client 45
5
4
F
Se
v
Bipolar
affective
disorder
Citalopram
30mg
Client 46
4
3
M
Pr
of
Psychosis
NOS
Olanzapine
10mg bd
Epilepsy
Crohn’s
Autism
Y
Wean olanzapine
Metabolic screen
Client 47
5
9
M
Se
v
Psychosis
NOS
0.5mg bd
Epilepsy
Psychosis
NOS
N
Epilepsy review
Client 48
5
6
M
Se
v
Organic
mental
disorder
Nil
Spastic
Quadrapl
egia
Defer
N
Nil
Client 49
5
9
F
Mo
d
Depression
Psychosis
NOS
Olanzapine
20mg
Epilepsy
Obesity
Psychosis
NOS
Metabolic screen
Regular mental
state
Client 50
4
1
F
Pr
of
Psychosis
due to
brain
damage
Olanzapine
10mg
Nil
Metabolic screen
M
Mil
d
Childhood
psychosi
s
4
3
M
Mo
d
Organic
personali
ty
disorder
OCD
Olanzapine
20mg
Fluoxetine
40mg
Chlorprom
azine
PRN
Escitalopra
m 20mg
Olanzapine
20mg
Chloproma
zine
150mg
Blindnes
s
Constipat
ion
Cough
Oesopha
gitis
Duodeniti
s
Client 51
4
7
Client 52
Epilepsy
High chol
Organic
personalit
y disorder
Client 53
5
0
F
Se
v
Depression
Anxiety
Constipat
ion
Autistic
disorder
GAD
Major
depression
Client 54
5
5
F
Se
v
Organic
mental
disorder
NOS
Venlafaxin
e 225mg
Olanzapine
20mg
Diazepam
5mg
Olanzapine
22.5mg
Epilepsy
Constipat
ion
Bipolar
disorder
Wean olanzapine
Metabolic screen
Genetic testing
Client 55
5
3
M
Mo
d
Bipolar
disorder
Schizoaffe
ctive
disorder
Epilepsy
Dysphagi
a
Organic
brain
disorder
Nil
Client 56
6
3
6
0
M
Pr
of
Mo
d
Nil
Lithium
750mg
Solian
50mg
Benztropin
e
Nil
Nil
Autism
OCD
Anafranil
25mg
Constipat
ion
Vit D
Hypothyr
oid
Client 57
F
Bipolar
affective
disorder
Autism
OCD
Autism
OCD
Y
N
il
Y
Behavioura
l
interventi
ons
Routine
adherence
Metabolic screen
No medication
change
Metabolic screen
Y
Behaviour
interventi
on
Avoid
caffeine
Adequate
stimulati
on
Regular physical
exam
Metabolic screen
Nil
Monitor for
anticholinergic
side effects
Diet
Exercise
Name
A
g
e
S
e
x
ID
Original
diagnoses
Psych
meds at
R/V
Medical
issues
inc side
effects
Diabetes
Obesity
Sleep
apnoea
Diagnosis
at R/V
Client 58
5
8
M
Mo
d
BPAD
Prader Willi
Client 59
5
0
M
Se
v
Psychosis
Client 60
5
6
F
Mo
d
Childhood
SCZ
OCD
Risperidon
e 0.5mg
Lithium
250mg
1.5 nocte
Risperidon
e 3mg bd
Largactil
PRN
Luvox
150mg
Epilim
1500mg
Client 61
5
6
M
Mo
d
Childhood
autism
Depression
Client 62
4
2
F
Mo
d
Psychosis
mental
disorder
NOS
Client 63
4
3
M
Se
v
Client 64
4
6
M
Se
v
P
D
D
Changes to
medication and
recommendation
s
Lithium levels
Psychiatric review
Physical review
Behaviour
interventi
on
Constipat
ion
Autism
Y
Use lowest dose of
risperidone
possible
Metabolic screen
Genetic testing
Medical and
psychiatric
reviews
Behavioura
l
interventi
ons
Epilepsy
Constipat
ion
Reflux
Vit D
Hypothyr
oid
Autism
OCD
Y
Olanzapine
20mg
Flouxetine
40mg
LiCo3
750mg
Largactil
150mg
Risperidon
e 6mg
Epilepsy
Autism
Y
Change times of
medication
Lithium levels
Metabolic screen
Rationalise and
wean
antipsychotics
Gardening
program
Epilepsy
Obesity
Chol
Autism
Y
Wean risperidone
Metabolic screen
Genetic testing
Behavioura
l
strategie
s
Organic
disorder
NOS
Depression
Olanzapine
27.5mg
Sertraline
50mg
Oesopah
gitis
Poor
vision
PDD
Y
Minimum doses of
medication
Behavioura
l
strategie
s
OCD
Risperidon
e 2mg
Sertraline
150mg
Epilepsy
Autism
Y
Monitor sodium
Medical review
Bipolar
disorder
Healthy
eating