New research features voices of carers and patients about broken mental health system
Recently published research led by Monash Rural Health has given voice to unheard carers and consumers of mental health services, highlighting shortcomings of the current mental health system which is under-resourced and siloed and is struggling to provide holistic care.
A qualitative study, which interviewed carers and mental health service users, overwhelmingly returned negative responses which highlighted structural inefficiencies and outdated approaches, as well as signs of a system that is chronically overstretched.
Lead researcher, Dr Anton Isaacs, intended the research to look at both positive and negative experiences of the mental health system, but found that research participants overwhelmingly had negative experiences.
“This is very important for services to consider. We cannot have services continue to cause so much angst for the very people they are meant to help.”
Listening to participant responses gives a sense of the frustration felt by many seeking to access services and support for themselves and those who are cared for.
“They cannot find the people who are at home isolated and refuse to reach out for help… They won’t speak to me because I am the mother.”
“I found that a lot of services don't know what to do because I'm a trans man. Where do we house you? Is it male, female? Do we need to segregate you… like… you know, they don't know.”
Other participants spoke of convoluted processes and extended wait times of many weeks to access Prevention and Recovery Care (PARC) services, as well as little support for carers looking after patients following release from mental health facilities.
If I needed to go back to PARC, I would need to contact my case manager, [then] wait till she could look at doing a referral. I’d have to have specific reasons and stuff like that for the referral; it would then be sent to PARC where they would review it, and then if they didn’t
have any beds or anything, I would go on a waiting list. From that waiting list, you then have to go in and have a meeting with PARC. And then they will decide whether or not admission to PARC is appropriate for you. And then after that meeting, you wait to be contacted to be told, “Okay, we have a bed, you can come in”. But that process could take weeks. And so, if you’re at a point where you’re starting to get unwell and you’re on a path to a crisis situation, those few weeks can feel like months.
Some of the other shortcomings reflected in the research include that services are not fit for purpose and not tailored to the needs of different consumers.. Services were also seen as operating in isolation from each other. In one particular case, a person who damaged their wrist in a PARC service was met with the following response.
…and I tried to get out of bed to turn the light on and I fell over and because I have arthritis and stuff like that I can break bones easier. That night, nurses were like, “Here, have some Nurofen and Panadol’. And then the next morning, I explained to them that my wrist was really swollen, I was in lots of pain. I asked if one of the doctors could see me. And the nurse came back to me and was like, “The doctor said they deal with mental health issues, not bones.”
They highlighted the vast difference between the public and private system.
The public system isn’t really built for extensive, long term treatment. I kind of saw people once or twice, and they’d say, you know, it’s just borderline personality disorder, you need to do DBT [Dialectical behaviour therapy]. “No medication is going to help you … and do some mindfulness”. And that’s it. Whereas, obviously, privately, you can keep coming back as often as you want.
This is evident of another theme brought up in the research, highlighting how patients and carers are treated poorly, and services are overloaded and under-resourced. In addition, health systems need to recognise the individual as a whole rather than just their diagnosis, as one carer mentioned.
If I get very sick; I can’t work; I then have financial consequences. If they change my medication, I always have physical consequences from medication. I am dealing with a few physical issues that have arisen as a result of medication. So, there’s all of those more holistic things. Just looking at me as a whole, rather than me, you know, having a bit of a breakdown, and just fixing that … It’s looking at the bigger picture, the broad picture of everything that’s going on in my life…
Some of the recommendations offered by participants for change include having a more nuanced approach that caters to differing needs of different users, and looking beyond outdated approaches which rely on chemistry and drugs, without considering social and wellbeing factors.
It’s not just your chemistry… if someone’s been unwell for 20 years, and they haven’t got a friend, they haven’t got a job, they’ve lost their confidence, they’re still battling anxieties, and lack of involvement in life. Someone who knows their chemistry, but isn’t able to tap into [their] psychosocial capacity building, and isn’t able to discuss what’s really needed….
In Australia, with funding for mental health services shared between the federal, state and territory governments as well as individuals and private health, mental health reform is complex, but with the growing crisis in this area, a more integrated approach may be able to address some of the problems.
According to lead researcher, Dr Anton Isaacs, it is important that voices of patients and carers are heard by policy makers to create a mental health care system that works for all.
“In this climate of resource constraints and increased expectations from mental health services, there is an urgent need for innovations in the way mental health care is delivered and mental health services are designed. These innovations must seriously take into consideration the voices of those who are recipients of this care and of these services.”
Read the full article in Frontiers in Psychiatry: Shortcomings of services for persons with severe and persistent mental health challenges: a qualitative study of service users and family carers. .