The Invisible Minority: A Response to the Australian report on People Living with Psychotic Illness 2010, by Sandy Jeffs

Sandy Jeffs writes: In November 2011 the Australian Government released a report of the second national survey into people living with a psychotic illness which was conducted in 2010. This came after a first survey was conducted in 1997-98. The following is my response to the most recent report. Interestingly, my response was far more pessimistic than some other ‘experts’ particularly around the efficacy of the new antipsychotic medications. I think there is systemic blindness to their inadequacy and vain hope that perhaps they might work better. I am a pessimist by nature but perhaps a realist too.

So, we are hospitalised less often; having fewer involuntary admissions, the proportion of us deteriorating due to chronic psychotic symptoms is decreasing; and we are having periods of good recovery in between episodes. Newer atypical medications ‘better control delusions and hallucinations’. Fewer of us are homeless and more of us are in our own home or rented accommodation. We are also using NGOs and GPs more often for our treatment and recovery programmes.

Sounds good, we must be in good health and in good spirits.

Click to download the 2010 "People living with psychosis" report

The People Living with Psychosis Study 2010 raises more questions than it gives answers. If the new atypical antipsychotics ‘better control delusions and hallucinations’, why are 85% of people with a psychotic illness receiving a government pension as their main source of income and only a third are in paid or unpaid work or studying? If the proportion of people deteriorating due to chronic psychotic illness has decreased, why do 90.4% of people report deterioration of functioning after the onset of illness?

The majority of people have multiple episodes but the report says people experienced good recovery in between these. What is ‘good recovery’? Why are only 17% of people in a married or de facto relationship? GPs report that that social isolation, lack of employment and financial difficulties were the main challenges their patients with a psychotic illness faced.

The trend of fewer hospitalisations indicates to me of a couple of things. Firstly, accessing a hospital bed is now more difficult and a lot of people (20%) are managed in the community on Community Treatment Orders. Families carry a lot of the caring responsibilities.

Secondly, but more importantly, I believe that the new medications have simply flat-lined the psychotic illness, reducing the florid blowouts and leaving the person with a chronic, low level set of symptoms that are just as debilitating as the ups and downs of frequent florid episodes.

People are living in the community with a chronic mental illness, but are not necessarily being hospitalised. The report shows they are disengaged from work. They feel isolated and have lost the opportunity to be participating citizens.

Before the onset of psychosis, a vast majority of people reported they had been in work and had good social functioning. After the onset of their psychotic illness people report a significant loss of social activity, difficulty maintaining close relationships and that they were not attending recreational activities.

The appalling physical health of people who live with a psychotic illness is a medical disgrace. The medications people take are powerful agents with a plethora of side-effects. Granted, they are not enduring the same awful side-effects caused by typical antipsychotics such as shuffling, zombie-like movements or living in fear of contracting the most awful of conditions, tardive dyskinesia which involves irreversible, repetitive, uncontrollable movements such as grimacing and lip-smacking. However, the atypical antipsychotics do present challenges to people. People feel like their heads are stuffed with cotton wool, they battle disabling levels of sedation, some people feel stupefied while others have lost sexual functioning; not much different to the old medications. There are many more uncomfortable side-effects. A commonly experienced consequence of the medications is weight gain (45% are obese and a significant number overweight) and physical health is significantly compromised. The flow-on effect has been the decline of their physical health.

People are experiencing above average rates of asthma, heart or circulatory conditions, chronic back and neck pain, cardiovascular disease. The number of people with diabetes is alarmingly high. Their levels of physical activity are very low.

Two thirds of people with psychosis smoke, alcohol abuse is high and the use of illicit drugs has risen dramatically. Half had reported attempting suicide at some point in their lives. They don’t seem to be in very good health or in very good spirits. The trade off is unfair: supposed good mental health for poor physical health. A lot of people are unhappy because they feel they are in a powerless position. This can create a resignation or anger towards treat. There is a feeling of frustration with themselves and those around them, all of which can acerbate a psychotic illness.

I know what it is like to live with a psychotic illness. My schizophrenia has meant that I haven’t been able to maintain a consistent level of high functioning because of its episodic nature, though, like many now, my symptoms have become less volatile and shifted to a more subdued chronic presence with intermittent psychotic explosions. I have a constant struggle to just live with the illness. It is a mental battle every day, not only get out of bed, but to keep myself motivated and engaged with the wider world because of the paranoia and intrusive hallucinations.

The report shows a demographic of people who are struggling everyday with isolation, poor health and debilitating psychological distress. Yes, they are supported and rehabilitated in the community by GPs, case managers and NGOs but I despair at the large numbers of people with a chronic psychotic illness who are living invisible lives in a silent hell. In this day and age of high profile people talking publically about their mental illnesses, I make the observation that not many, if any, high profile politicians, business people, sports people or celebrities have come out as having schizophrenia, the most common psychotic disorder.

The bottom line is that psychotic illnesses are distressingly disabling conditions and insufferable to live with. And they are notoriously difficult to treat. In a pessimistic mood, I see the cohort of the report, and myself, continuing to live as the invisible minority. Until more effective medications are developed with a cleaner side-effect profile, or a cure is found for psychotic illness which would allow us to escape our mind-prisons, I cannot see beyond the struggle of living with a cruel monster. All the community can do is offer as much support as is possible and not be judgemental.

So, why have I been able to sit here and have the time and space in which to reflect and write a response to the survey? I have been fortunate to have had the ongoing support of friends over many years.

Without this support I could not engage with my sporting activities, write poetry and do my public speaking and advocacy work, all of which have given me a strong purpose and meaningful life. Such support is invaluable and I am aware that many of those who live with a psychotic illness haven’t had such good fortune.

Community support with peers and workers is an attempt to connect those living with a mental illness with someone who can offer them company and the chance to develop personal skills and confidence. Anything that can give a person these gifts is worth the money and effort. What a difference a friend makes. What a difference it makes having a home. What a difference being part of a community makes. What a difference being valued makes when one lives with an illness that seeks to destroy you. If only those living with a mental illness could have these things which so many others take for granted?

For further commentary on the report, click to read "People Living with Psychosis - A Sane Response"

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