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1. Impact
of co-morbidity on carers
How
do parents find the strength, to preserve our energy
and our sanity in a chronic situation, in the effort
to keep our children alive and out of jail when we are
struggling against a system that turns us away in times
of crisis. We are talking about major stress, high maintenance,
and intensive care for families.
I
have four adult children. One son, who is chronologically
25 years old, has schizophrenia and has abused many
drugs from early teenage years, including heroin dependency
for three years. He has been maintained on methadone
for the last 18 months and uses marijuana daily. I consider
this more stable but still high maintenance financially
and emotionally.
Trauma
is the onset of psychosis. How do you convince a young
person to see a psychiatrist or agree to a psychiatric
ward─impossible. The other option, as advised
by a psychiatrist, is to call for police assistance
to transport him to hospital. Many families have found
this experience to be detrimental. I, at the
time,
thought `good this stressful experience is necessary
because now he is safe and receiving professional help'─wrong.
Within a few days he was back on the street, angry with
the family and distressed. The short-term psychiatric
ward didn't have the answer.
Trauma
is the crisis point. When he was mentally ill, heroin
dependent, suicidal and loose on the streets, he was
refused admittance to a psychiatric ward because he
was drug dependent and told `that he had a choice',
and refused at drug rehabilitation centres because of
the mental illness. I know numerous families that have
been desperate and help was refused. Is it any wonder
that our overdose and suicide rate is so high! I have
forcibly admitted him to hospital a number of times
and question what it is that has been achieved. In a
crisis situation, when we believe they are a high risk,
intervention in the form of a mandatory facility is
necessary, but please, we need an improved situation
to work with, not one that has been exacerbated.
Trauma
is finding a solution when faced with a life and death
situation. I had to gain control of the heroin, which
was spiralling out of control and heading down the crime
road unless I intervened. My `harm minimisation' was
to `do a deal' with him. I paid for the heroin on the
condition that I kept it and metered out the doses.
Gradually we were able to reduce it. What wouldn't a
parent do to save their child?
Trauma
is the ongoing financial support, some leading to severe
financial distress, when families incur the debts to
dealers who threaten their child and to unscrupulous
hock shops. Not to mention legal fees!
Trauma
is the experience impacting on siblings especially the
younger ones; many becoming horrendously disturbed.
Which one do we sacrifice?
Trauma
is the Criminal Justice System. This is a major stressor
especially prior to a court appearance. I find it enormously
frustrating and distressing when I have worked so hard
to help him reach a stable day-to-day existence only
to have him psychotic again because of this stressor.
We need assistance before the situation becomes this
dire. The prison system need never be an option with
early intervention.
The
long-term outcome for this group of young people remains
very bleak at this point in time. They don't have a
place in the community. The community has not been prepared
for them. Families will continue to be the ones at the
coalface but we need support. Interventions such as
proposed by Professor David Kavanagh in the Dual Diagnosis
Consortium 1998 Report, funded by Queensland Health,
are urgently needed to give us hope for a better future
for our children.
Meta
Ransome
2 The
impact of co-morbidity in General Practice
The
following two cases illustrate a number of issues relevant
to co-morbidity in general medical practice (GP). The
first involves common conditions leading to considerable
morbidity in the community and seen commonly in OP (see
NMH & WS data). Both cases are real though names
and minor details have been changed for reasons of confidentiality.
Discussion points are listed after each case.
Bill,
a 42-year-old man, said his girlfriend had told him
he `needed some help'. He said his problem had cost
him his first wife and family and several jobs, as well
as causing much suffering and heartache over the years.
The following story emerged. When he was 16, Bill had
been sitting on the lounge with his father watching
TV when his father had suddenly clutched his chest,
groaned and fallen over, dead. After a few weeks, Bill
began to experience chest pain associated with feelings
of unreality and of impending doom. He then visited
many hospitals and GPs around Sydney and remembers being
given the message that either `nothing is wrong' or
that `it is just anxiety'. It is possible that his anxiety
problems were addressed but he certainly did not recall
that ever having happened. Instead he had tests done,
and was then sent home. Occasionally he was admitted
overnight but never more. At the age of 20, Bill discovered
that alcohol made these feelings go away. By that stage
he regularly experienced shortness of breath, lightheadedness
and a feeling of impending doom, particularly when facing
stressful situations. With alcohol on board he felt
`quite normal'. Over the next 10 years he noted he needed
more alcohol to produce the same sense of relaxation
and he began to experience problems sleeping, wakening
with a panicky sensation and with marked anxiety all
day unless he had a few heart starters. This led to
disharmony in his marriage and he and his wife split.
After a few periods of detoxification he discovered
that Valium worked as well as the alcohol but with fewer
side effects. Over the next few years he used Valium
whenever possible but continued with alcohol on special
occasions or when he could not obtain tablets.
Bill
noted that whenever he stopped drinking or taking pills
his symptoms worsened, and even after prolonged periods
of abstinence he felt worse with increasing anxiety,
shortness of breath and difficulty getting on with everyday
activities. He had finally come to his current consultation,
in a community psychosocial unit, because he heard we
dealt with both alcohol and mental health problems and
he knew `it wasn't just the grog'.
The
following points are raised:
1. Does
Bill have a serious health problem? Could it have
been managed as well as a heart attack or pneumonia
would have been? Twenty-six years on, are we more
or less likely to manage this problem well?
2. Bill
had access to health care facilities but his quality
of life declined. Why is this? Does the health care
sector manage only physical health? Is mental health
only all those things left over when `real' physical
health problems are excluded?
3. As
we develop more diagnostic devices are we more or
less likely to take seriously issues such as anxiety
and alcohol problems?
4. With
the average length of stay in a teaching hospital
now 3.5 days with the focus on single issue management,
is this the best training environment for future GPs
who will see increasing co-morbidity?
5. If
a GP or hospital doctor had made the correct diagnosis,
could Bill then have been treated as professionally
and routinely as if he had a heart attack or pneumonia?
Has this likelihood increased or decreased over the
years?
The
second case concerns a less common mental health problem
but one seen with increasing frequency in GP with the
downsizing of mental health hospitals and the use of
more effective anti-psychotic medication.
John,
a 20-year-old student, was brought in by his mother
and sister. He had been acting strangely and they felt
he had been smoking too much cannabis. John was sleeping
much of the day, waking up singing or talking to unseen
people, neglecting showering and changing his clothes
and forgetting to eat. He had become restless at night
and wandered aimlessly around the neighbourhood. His
university grades had fallen progressively over 2 years.
He had visited a few GPs and hospitals but was reluctant
to discuss both his cannabis use and his mental distress.
He worried that he was mad and that it might relate
to cannabis use, though he kept smoking. John was physically
reasonably well but mental examination revealed many
psychotic features. He said cannabis helped him sleep
although it did not do much for the voices that often
tormented him, particularly at night. He received inpatient
treatment with a diagnosis of schizophrenia, and remains
remarkably improved on a new anti-psychotic today, still
smoking but less often. There was much debate over the
role of cannabis and future management.
The
following points are raised:
1. What
should we be telling people about the relationship
between cannabis and mental health? Do scare tactics
achieve anything?
2. John
felt guilty about smoking, worried about the cost
and possible effects. Later he preferred to see himself
as a dope smoker rather than as `mad' and talked about
cannabis whenever he saw any health professionals.
Is the continued illegality of this drug and the consequent
mis-information, anxiety and high price likely to
help people like John or his advisers?
3. Lack
of good information about cannabis causes people to
be scared. It does not stop people smoking and our
incidence is rising (see National Household Survey,
1998). If it stops people honestly discussing drug
use with doctors, family and friends, how does this
help?
4. Should
John have been admitted for inpatient diagnosis and
management earlier? Would the prevention of his psychosocial
disintegration have been possible?
5. Is
cannabis use likely to worsen John's outcome? Has
John become dependent and if so does that create problems?
Does the cost of the drug have an impact? What is
the risk of entering the criminal justice system rather
than being managed through the health care system
and is this likely to be helpful? Is this likely to
be the best use of the taxpayer's dollar? (see recent
NDARC Monographs).
6. Is
it appropriate to demand that John remain drug free?
Does that include no alcohol, no coffee and no cigarettes?
Or just no cannabis? If he uses cannabis is he then
disqualified from professional health care?
Addressing
the considerations for the future:
What
needs to start happening? Clearly, mental health
and A&OD problems need to be taught and managed
through the same systems and services as the rest of
health care. They are no more an optional extra than
is diabetes or asthma management.
What
needs to stop happening? The fragmentation of care
and funding into discreet bits and the management of
`health' as a consumer product with GPs as health supermarket
operators will not help in this field. 5 minute consultations
will not help. The fascination with technical interventions
(eg, `I woke up, cured of heroin') and the down playing
of experience and interpersonal skills must be redressed.
In
the year 2005 where should we be? Simply, in a situation
where the knowledge, attitudes, skills and systems allow
these common problems to be dealt with as professionally
and easily as are diabetes or asthma. This is not as
easy as it looks.
What
are three critical barriers which need to be overcome
to get there?
i) The
lack of under- and post-graduate training in A&OD
matters, and the lack of role models, mentors and
a career path for those who are involved.
ii) The
lack of accountability for poor services in both fields,
particularly A&OD. Those with co-morbid problems
are not aliens, they are us (see MacQueen, A.R. `Drug
and alcohol use as normal behaviour', Australian
Family Physician, Jan 2000).
iii) The
lack of maturity and compassion which allows the marginalisation
of our own citizens as aliens and demons and inures
us to their suffering. This is possibly understandable
in the community but unacceptable amongst those working
in health care.
A
R MacQueen
FRACGP
Orange NSW
3 Creating
a responsive service system for people with dual diagnosis
and their families: Issues for consumers and carers
It
is sometimes difficult for service providers and health
professionals to hear just how difficult the experiences
of people with a dual diagnosis and their families are.
One consumer describes the experience of being treated
`like just another drunk' by a mental health professional
as one of the most devastating she'd encountered. She
found support in her friends and through non- government
(NGO) providers.
A
parent of a young man describes in detail her first
encounter with a drug and alcohol service as one of
extreme frustration and despair. Her son went on to
commit suicide only a few weeks after she'd implored
both service systems to treat her assessment of her
son as very depressed and suicidal, as legitimate and
well informed. He was 17, had been recently confirmed
as having a dual diagnosis of schizophrenia and drug
dependence. He was intelligent, articulate and very
distressed. She was dismissed (or at least experienced
it as such) as an over-protective mother who couldn't
face her son's illness.
It
is possibly tempting to dismiss these stories as the
unique experiences of only one consumer or only one
family. However it is more difficult to do that when
the stories of consumers and of families or of carers
begin to show a pattern of desperation, frustration,
and a deep anger at the service system which is consistent
and shared. The anger is often dismissed as `understandable'
in the face of a diagnosis for your child which provokes
grief and loss. That is not to say that consumers and
families don't sometimes manage to create good relationships
with the professionals and provider organisations who
offer support. Many can identify workers or organisations
who have been their only source of support or sanity
through extraordinary circumstances and events.
Probably
the most frustrating experience which is described by
both consumers and families or carers is the way in
which the service system characterises the person with
a dual diagnosis as the problem. This is expressed by
the use of such labels such as `complex cases' `multiple
problems', `multi-problem clients' `intractable behaviour'
or `unmotivated' to describe or attribute the difficulties
of providing services to people with a dual diagnosis
and support to their families. Alternatively families
are often characterised as `over protective', `unable
to come to terms with their loss' or occasionally as
`controlling'.
Consumer
and carer advocates dispute these characterisations
and argue instead that the diagnosis rests at least
partially with a fragmented and unresponsive service
system; a problem of the system and not the diagnostic
assessment of a dual diagnosis.
Consumers
and carers are very articulate about how they diagnose
system failure as a major contributing factor to meeting
the needs of people with a dual diagnosis. They believe
that the symptoms of system failure are very obvious
and can be detected by careful observation and an honest
appraisal of the health of the systems.
The
symptoms they believe need to be addressed are as follows:
·
The
current administrative separation of service systems
especially with respect to drug and alcohol, mental
health and other disability services.
·
This
arbitrary separation is grounded in different cultural
and professional approaches to particular diagnostic
assessments. If you have a mental illness but present
first at a D&A service the service orientation
will be driven by a primary focus on your drug or
alcohol dependence. Your mental illness will probably
be seen as secondary and vice versa. If you happen
to have a physical disability or an acquired brain
injury the possibility that the D&A professional
understands the full implications of that will be
very slim.
·
Worker
attitudes to people with a dual diagnosis, especially
drug and/or alcohol abuse and serious mental illness,
are perceived as disrespectful and dismissive by many
consumers. Worker attitudes to families are also often
experienced as dismissive or aloof.
·
The
service systems deal with families inappropriately.
Very few have any real sense of the reality of the
lives of families and carers who are usually the people
left to `pick up the pieces' after a service has released
someone from hospital and not told their family, or
refused to see someone when they present in an intoxicated
or drugged state, or simply spent a couple of hours
with that person and `sent them on their way'.
·
Families
spend large amounts of time with very ill consumers
and will often have a huge amount of knowledge about
the patterns of daily life and the challenges facing
consumers. The failure of the various service systems
to actively engage with families in supporting and
sometimes confronting consumers is a serious challenge.
·
The
specialist training of professionals working in different
services does not equip them well to deal with someone
experiencing mental illness, drug and/or alcohol dependence,
or other forms of illness or disabilities. Consumer
and carer advocates argue that workers in the various
service Systems should be undertaking joint training
and peer education activities which address diagnostic
and assessment techniques, attitudes, shared case
management and treatment approaches.
·
Early
intervention is critical and the service system is
not seen as doing this at all well at present. The
reasons are many and at least some of the challenge
for providers relates to heavy caseloads. However
some of the challenge also rests in early assessment
and more appropriate and shared interventions by the
service systems. This includes the improved coordination
of medical and psychiatric interventions with social
and community support.
The
answers for consumers and families rest in a commitment
of the various service systems to acknowledge their
own state of poor health and to engage with consumers
and families or carers to find other ways of working.
Both consumers themselves and families or carers know
only too well the challenges which services and professionals
face in providing adequate and appropriate support and
treatment. Some consumers and families are perplexed
by a system which aims to encourage some sense of responsibility
in consumers but fails to do so in its own backyard.
One
consumer concluded by saying `I know I'm not always
easy to work with but I just want to be treated with
some respect'. Respecting the knowledge someone has
gained about their own illness and needs requires the
professionals to relinquish their own belief that they
are the `experts'. A respectful system will hear the
consistent messages coming from consumers and carers
and find ways of finding shared answers.
4 Co-morbidity
definitions
Anxiety
Disorders
Being
anxious does not qualify one for an anxiety disorder.
Diagnosis of an anxiety disorder requires that specific
symptoms are present over a period of time and that
these symptoms are accompanied by changes in thoughts,
emotions and behaviour that substantially interfere
with the person's ability to live and work.
Persons
who have panic disorders have repeated experiences of
sudden, sometimes unexpected, attacks of disabling fear
or anxiety. Agoraphobia is the avoidance of situations
in which either help is not available, or in which escape
impossible, for fear that a panic attack may occur.
Social phobia is the avoidance of situations in which
one is perceived to be the centre of attention in case
of embarrassment or humiliation. Generalised anxiety
disorder refers to months of irrational worry about
everyday things. Obsessive compulsive disorder is characterised
by repeated, intrusive, repugnant thoughts about blasphemy,
contamination or harm, and by repeated acts to neutralise
the anxiety generated by the obsessions (e.g. repeated
checking or hand washing). Persons with post traumatic
stress disorder suffer from the continuing intrusion
of emotionally laden memories of a previous traumatic
event.
Substance
Use Disorders
Consumption
of alcohol or drugs does not qualify a person for a
substance use disorder. Substance use disorders (which
include harmful use and dependence on alcohol or other
drugs) typically involve impaired control over the use
of alcohol or other drugs. Obtaining, using and recovering
from alcohol or drugs consumes a disproportionate amount
of the user's time, and the user continues to drink
alcohol or take drugs in the face of problems that they
know to be caused by them. They typically become tolerant
to the effects of alcohol or drugs, requiring larger
doses to achieve the desired psychological effect, and
abrupt cessation of use often produces a withdrawal
syndrome. Many experience other psychological and physical
health problems, and their alcohol or drug use often
adversely affects the lives of their spouses, children,
and other family members, friends and work-mates.
ICD-10
criteria of for harmful use and dependence are outlined
below.
An
ICD-IO Harmful Use diagnosis requires a pattern
of substance use that is causing damage to health. The
damage may be physical (e.g. hepatitis from self-administration
of injected drugs) or mental (e.g. depression secondary
to heavy consumption of alcohol).
An
ICD-10 Dependence diagnosis requires the presence
of three or more indicators of alcohol or other drug
dependence. These indicators are: a strong desire to
take the substance; impaired control over drug use;
the occurrence of a withdrawal syndrome on ceasing or
reducing use; tolerance to the effects of alcohol or
other drugs, as indicated by needing larger doses to
achieve the desired psychological effect; obtaining,
using and recovering from alcohol or other drugs take
up a disproportionate amount of the user's time; and
the user continues to drink alcohol or take other drugs
despite associated problems. The problems should have
been experienced for at least one month during the previous
year to qualify for a diagnosis.
Depression
The
World Health Organization's International Classification
of Disease─10th revision (ICD-10) lists a set
of criteria that are necessary for a diagnosis to be
made. For example, the criteria for mild depressive
episode would be satisfied if the person reported two
weeks of abnormally depressed mood, with loss of interest
and decreased energy, and one of the following list
of symptoms:
·
loss
of confidence
·
excessive
guilt
·
recurrent
thoughts of death
·
poor
concentration
·
agitation
or retardation
·
sleep
disturbance
·
change
in appetite
Severe
depression requires that five of the eight symptoms
are present.
Andrews,
Hall, Teesson & Henderson (1999) The Mental Health
of Australians. Mental Health Branch, Commonwealth
Department of Health and Aged Care.
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