Croakey is today kicking off a series of articles on mental health. These coincide with an investigation into controversies in mental health reform that I have written jointly for Crikey (appearing as a four-part series from today) and for Inside Story (published online and also appearing today in a slightly abbreviated form in The Canberra Times).

Below are some of the details from a major new study of the experiences of people with psychotic illness, released last week. It is followed by a personal response from Sandy Jeffs, an author and poet who has lived with schizophrenia for 35 years, and who describes the huge difference that friendships and social support can make.

One of the themes of my Crikey/Inside Story articles is the need to broaden public debate about mental health reform beyond clinical services, to consider the wide range of factors influencing the wellbeing of people with mental illness, as well as the broader determinants of mental health at a population level.

This is reinforced by the findings of the new report, People living with psychotic illness 2010, Report on the second Australian national survey, which found that people living with psychosis ranked social and economic disadvantage and loneliness and social isolation above their very profound physical and mental health needs.

While one quarter (25.7%) identified uncontrolled symptoms of mental illness and 5.8% identified lack of access to mental health services among their top challenges for the coming year, around two-fifths of participants identified financial concerns and lack of employment as their top challenges (42.7% and 35.1% respectively).

Interestingly, their GPs made a similar assessment. When asked to name the top three challenges faced by people living with psychotic illness, 41.3% of GPs listed social isolation, 37.7% lack of employment and 37.5% financial problems.

Three out of five participants in the survey had a net fortnightly income from all sources of between $500 and $799, with roughly equal proportions in lower and higher income bands than this (the disability support pension is the main source of income for many people with psychotic illness).

Surely that should give governments some pointers about where to invest if they want to improve the quality of life for people with mental illness – (and perhaps it also throws some perspective on the medical lobby’s campaigns against cuts to GP rebates under the Better Access program).

The survey found that 18 per cent of participants reported lack of stable or suitable housing as a challenge. For one quarter (27.4%), their physical health was one of the biggest challenges (one-fifth of the survey respondents had diabetes – over three times the rate in the general population.)

The survey also revealed the ongoing impact of social isolation. One in ten (11.6%) participants said facing stigma and discrimination was one of their top three challenges for the coming year. Amost one half (46.9%) of females reported experiencing stigma or discrimination in the past year, compared with 31.8% of males. Almost two-fifths (38.8%) of those in employment had not told their employer about their mental illness.

Many more (37.2%) reported that loneliness and social isolation was one of their greatest challenges, and 6.2% reported the absence of family or a carer as a challenge.  Two-thirds (69.3%) said their illness made it difficult to maintain close relationships. Thirteen percent had no friends at all, 14.1% had no one they could rely on, and 15.4% had never had a confiding relationship.

When participants were asked to describe their involvement in organised activities over the past year, just over two-thirds (68.6%) said they had not attended any social programs, and a similar proportion (69.4%) had not attended any recreational programs.

The findings suggested that rehabilitation programs, which are designed to promote recovery, improve independent functioning and reduce disability through education, support and individual recovery plans, were useful but not widely accessed. Less than one-third of respondents had an individual rehabilitation or recovery plan.

Just over one-quarter of participants (27.5%) had missed out on one or more services they had needed. When asked why they had not received the service, 37.9% said it was not available, 31.3% reported that they could not afford it and 20.0% did not know how to access that service.

Meanwhile, the survey also found that three-quarters of respondents complained of medication side effects, including daytime drowsiness, drier or more watery mouth, weight gain (an average of nine kilograms in the past six months), inner restlessness, trembling or shaking of limbs and inability to relax.

The survey also identified the challenges facing families affected by psychosis. The authors said there is “an imperative for services to identify the needs of these families and ensure that affected parents and their children are well supported”. Just over half the women with psychosis (56.2%) and one-quarter of the men (25.9%) were parents. One-quarter of the women (23.6%) and 5.5% of men had dependent children living at home with them. Most were parenting very well, however, almost one quarter (23.1%) were rated as having obvious or severe dysfunction in their provision of care for their children.

The survey found some progress from the previous one. The proportion of people who had been homeless at some time in the previous 12 months more than halved (5.0% compared with 13.0% in 1997-98).  On the other hand, more of the respondents reported problems with drug and alcohol dependence than in the previous survey.

Regardless of the difficulties they faced, three out of four (77.4%) people believed their circumstances would improve over the next year.

The authors said:

“This is the largest and most comprehensive assessment of psychotic disorders undertaken in Australia, and one of the most detailed undertaken internationally. The survey has provided a snapshot of people living with psychotic illness, the circumstances in which they live and the services they receive. The results confirm that psychosis is associated with substantial and persistent disability. Apart from the psychiatric features of psychosis, these disorders impact on physical health, education, employment, and housing. Yet, in the face of disability, disadvantage, stigma and social isolation, people with psychotic disorder display resilience and tenacity.”

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A personal response to the new findings about life with psychotic illness

 By Melbourne author and SANE Australia Speaker Sandy Jeffs

So a new study of people living with psychotic illness shows that 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.

The People Living with Psychotic Illness 2010 study 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 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 older/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 treatment. 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 to 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 having a home makes. 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.

• Sandy Jeffs is an acclaimed author and poet, her works include her memoir Flying with Paper Wings: Reflections on Living with Madness, Poems from the Madhouse and The Wings of Angles: A Memoir of Madness. Sandy has lived with schizophrenia for 35 years. (This article was first published in the Crikey bulletin).

Here is the response from SANE Australia to the study findings.

• Next in this series of articles, psychiatrist Alan Rosen writes about plans for a ten-year roadmap on mental health reform

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For help and more information

If you require immediate help, please contact either Lifeline on 13 11 14 or (if you are under 18 years old) Kids Help Line on 1800 55 1800.

Both of these services can help you or, if necessary, refer you on to appropriate mental health support networks.

GROW Support Groups (National) – 1800 558 268

Suicide Call Back Service (National) – 1300 659 467
(Up to six 50-minute telephone counselling sessions for people who are suicidal, caring for someone who is suicidal or bereaved by suicide.  7 days a week 10am – 8:30pm.)

Help/Information Lines:

beyondblue info line (National) – 1300 22 4636

SANE Australia Helpline (National) – 1800 187 263

Australian Psychological Society Referral Line (National) 1800 333 497

 

 

 

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