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Topic Tuesday: What would you say to public policy makers?

NikNikSenior Contributor12 Mar 2015, 7:45 pm AEDT

Topic Tuesday: What would you say to public policy makers?

The Mental Illness Fellowship of Australia (MIFA) plans to strengthen advocacy by people with lived experience of mental illness, by training people to become advocates in their community. The action is planned to coincide in part with Schizophrenia Awareness Week and World Mental Health Day. The aim will be to arm up to 100 trained advocates with messages representative of the lived experience population, to give to key policy makers.

To ensure the views and issues are representative of people with lived experience, tonight we want to work with you, to ensure we’re on track.

We want to be clear that we are very keen to hear everyone’s thoughts and ideas, however, not all will be able to be incorporated into the campaign. Further consultation will be taking place, with common themes influencing the final outcome.

Please join myself and Executive Director of MIFA David Meldrum to discuss these priorities and have your opinions heard.

See you at 7pm AEDT

Please hit 'like' if we'll see you here tonight!

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In response to: Topic Tuesday: What would you say to public policy makers?

EllieSenior Contributor17 Mar 2015, 9:04 pm AEDT

Re: Topic Tuesday / TONIGHT / 7pm AEDT: What would you say to public policy makers?

A big thanks to you too NikNik for organising it all. I really hope something comes of this, but from my experience hope is the only thing I have to offer.

Ellie.

In response to: Topic Tuesday: What would you say to public policy makers?

PipkinSenior Contributor18 Mar 2015, 9:08 pm AEDT

Re: Topic Tuesday / TONIGHT / 7pm AEDT: What would you say to public policy makers?

definitely agree with your last line - everyone puts people into boxes - everything is psychological, and the physical health profession dont want to know. I had a psycholoigcal broken knee until they eventually decided to do an X-ray to prove to me I had nothing wrong, and then when they saw the shattered knee cap the attitude of all the staff completely changed

In response to: Topic Tuesday: What would you say to public policy makers?

PipkinSenior Contributor18 Mar 2015, 9:09 pm AEDT

Re: Topic Tuesday / TONIGHT / 7pm AEDT: What would you say to public policy makers?

my parents always said they would feel better if I was getting the support I needed, but I could never access care for my complex needs. They didnt want to go to support groups they wanted me to access support to get well

In response to: Topic Tuesday: What would you say to public policy makers?

PipkinSenior Contributor18 Mar 2015, 9:17 pm AEDT

Re: Topic Tuesday / TONIGHT / 7pm AEDT: What would you say to public policy makers?

The primary health sector need better understanding about mental healht and the long term physical complications that may be associated with medication; frequent attempts on life with overdoses; complications associated with eating disorders/drugs and alcohol. Many mental illness have severe physical health consequences - in particular eating disorders, and people with the most complications and needs are ping ponged between services never actually getting mental health OR physical health care, and no one wanting to take responsibility.

The physical health sector seem to think it is not their responsibility to look after someone with a co-morbid mental illness, and the mental health sector wont look after someone who is physically unwell.

There needs to be collaboration between the different specialists not just ping ponging and expecting the person who is mentally and physically ill to be able to manage eveything.

In response to: Topic Tuesday: What would you say to public policy makers?

PipkinSenior Contributor18 Mar 2015, 9:26 pm AEDT

Re: Topic Tuesday / TONIGHT / 7pm AEDT: What would you say to public policy makers?

variety of peer groups would be good to meet the different needs; for example people with serious anorexia do not have the same needs as people with severe schizophrenia. There needs to be training and support for all peer leaders, who can easily get burned out trying to support people.
The stigma and discrimination is huge, everywhere and places where you would least expect it.
I have now got to the point where it is not safe to disclose to anyone and therefore I feel like I am living a lie, trying to associate with others (e.g. work, where the comments about mental illness were incredibly stigmatising and distressing. I knew I could never disclose in this environment, and it was unsafe to have to hear some of the comments from other staff.

In response to: Topic Tuesday: What would you say to public policy makers?

PipkinSenior Contributor18 Mar 2015, 9:32 pm AEDT

Re: Topic Tuesday / TONIGHT / 7pm AEDT: What would you say to public policy makers?

Sometimes the family is not the best place for support, as they can get too involved and too concerned they are going to lose their family member. For my safety and to keep my family as family and not constantly stressing it was better not to include them in anything. My family is never going to be able to provide support for mental illness, and it is better to keep it separate from the family and keep the family relationships.
Everytime someone has gone to the family about me there has been major explosions at home, my parents can not deal with it and will never be able to deal with the fact that they actually do have a daughter with a mental illness and not a teenage phase that I need to just "get over" and stop "throwing away my life" when I should be married with kids, working and getting on with my life like other people may age, and they have jsut wasted all their money sending me to a private school if I am going to throw everything away with this "stupid teenage illness'

In response to: Topic Tuesday: What would you say to public policy makers?

PipkinSenior Contributor18 Mar 2015, 9:37 pm AEDT

Re: Topic Tuesday / TONIGHT / 7pm AEDT: What would you say to public policy makers?

well that would be a nice goal.
The only place I have been able to access any services has been inter-state. Local community MH say they only treat psychosis and are always fully booked.
Definitely like the request, but we have a very long way to go before any of it is a reality.
I have been 2.5 yrs on a wait list for treatment inter-state

In response to: Topic Tuesday: What would you say to public policy makers?

PipkinSenior Contributor18 Mar 2015, 9:42 pm AEDT

Re: Topic Tuesday: What would you say to public policy makers?

Is there going to be a variety of different types of mental illness represented. It seems there is a lot of advocacy for schizophrenia, but other MI may be seen as behavioural rather than a serious mental illness e.g. BPD, anorexia, drup/alcohol - trauma related maladaptive coping strategies
While the needs may differ it seems some mental illness are not regarded as worth treating or valid concerns.People with schizoprhenia are not blamed for having a serious mental illness but people with anorexia are "choosing" the serious illness so are not worth treating and they can just go home and eat a slice of bread, which does not treat the mental illness side of the illness

In response to: Re: Topic Tuesday: What would you say to public policy makers?

kenny66Senior Contributor18 Mar 2015, 10:51 pm AEDT

Re: Topic Tuesday: What would you say to public policy makers?

I don't agree with the statement about schizophrenia being well advocated. There is an enormous amount of stigma surrounding schizophrenia and schizophrenics can be marginalised and trivialised as well.

Some of the most chronic discrimination against schizophrenics comes from the medical profession and the disability support providers particularly in regard to employment.

Schizophrenia gets a lot of bad air play. You just need to present during an episode to see how differently you are treated by attending some health care workers.

I am put into a clinic for 2 days each week. The clinic deals with eating disorders, drug and alcohol and those with serious mental illness, such as myself with schizophrenia.

There doesn't appear to be any less care, compassion or medical support given amongst these groups.

I would say that schizophrenics are treated quite differently sometimes in that we cant access sharps which is even taken down to not having disposable razors, unlike the other groups.

I know the reasoning but it does sort of set you apart from the others and gives the appearance you cant be trusted.

It is also pretty demoralising for a guy not being able to shave when you are trying to look after yourself and pay attention to hygiene and grooming, as you get lectured about. Its amazing what little things concern you when you are trying to get well.

Also, a some of the other patients at the clinic have the view that schizophrenia is a very scary MI and you tend to be avoided until people get to know you. I have many friends in the clinic now but that was not always the case.

The complexities and mystery surrounding schizophrenia still ring loudly with the majority of people. I have been asked if I have to have to have electric shock therapy and have surprised people by not being confined permanently to a MHU.

In my view public policy, the healthcare sector, the media should all be about educating all people about the seriousness of mental illness, no matter what form it takes and treating them all with the same level of priority and resources available, equally.

Just like other MI schizophrenics don't get the support, understanding and level playing field that it, and all other MI conditions deserve.

In response to: Re: Topic Tuesday / TONIGHT / 7pm AEDT: What would you say to public policy makers?

ivanaSenior Contributor18 Mar 2015, 11:32 pm AEDT

Re: Topic Tuesday / TONIGHT / 7pm AEDT: What would you say to public policy makers?

Your experience doesn't surprise me Pipkin.
The reality is it is futile (and likely doomed to failure) to make "ideals" or "mission statements" to intend to improve the physical health of those with co existing mental illnesses without addressing and making a concrete plan how to change the current attitudes of people in the medical field.
Many doctors/nurses often belief that when people with mental illness complain of physical symptoms that the cause is anxiety/"psychosomatic".
They believe it's all health anxiety,Somatisation disorder etc..
Once there's a mention of M.I from the patient,or suggestion of M.I from another doctor,then the patient is no longer taken seriously.

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SANE acknowledges the Traditional Owners of Country throughout Australia and recognises the continuing connection to lands, waters and communities. We pay our respect to Aboriginal and Torres Strait Islander cultures; and to Elders past and present.

SANE values diversity. We are committed to providing a safe, culturally appropriate, and inclusive service for all people, regardless of their ethnicity, faith, disability, sexuality, or gender identity.