Lived Experience Forum

[ivana]

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.

[ivana]

To me the way the suicide prevention statement is worded sounds almost comical because it seems like stating the obvious.

Regarding the request of "we want you to ensure....."
Wouldn't it be more effective to attempt to get peer support workers to be based at hospitals?

[kenny66]

Without being too critical I really think that most of the statements need revision. Its all so general and non specific.The statements dont lead anywhere. Perhaps a professional PR or messaging body might be able to help pro bono-juat a thought

[Viv]

Hi Kenny,

My only experience is with BPD (as a carer), so I respond with that in mind.

Mental illness is stigmatised and people with mental illness are discriminated against both personally and structurally. The last ugly piece I read was in The Age a month or so ago which described people with BPD as emotional vampires - accompanied by appropriate graphics. Given about 10% of people with BPD committ suicide, this was highly irresponsible.

The added extra burdens for people with BPD are:

Failing to get a correct diagnosis, to paraphrase common experiences of carers: "It's only a teenage phase"; It's the mother's fault, there's nothing wrong with the kid." "I don't believe in diagnosing BPD, really it is complex PTSD"; "It's bi polar, here take this meedication". And so on.

Failing to get treatment: It is nigh impossible to get into the public system. When you ring psychologists or psychiatrists who say they treat personality disorders in the private system, expect to be rejected, consistently. The last person I spoke to about this said they were rejected 44 or so times.

Co morbidity: A person with BPD self medicates often with drugs or alcohol to their deteriment. Other Personality Disorders are often present. Eating disorders also are a part of a person with BPD's life. And there are also all the other mental illnesses although not often schizophrenia.

The sad thing is that BPD does not have to be a lifetime condition. Recovery is a realistic possibility. Simply put, the recommended treatment involves one on one counselling concurrent with a structured training program for a year. Some people need more. Treatment practices can range from Dialectical Behaviour Therapy to Mentalisation to Acceptance and Commitment Therapy and more.

I recognise that the differences in mental illnesses are significant enough for me to want to have a peer support that specialises in BPD. In particular, as a carer it is important for me to change as much as I expect my daughter to change. The skills and techniques developed in DBT (and other treatments) are applicable to both carer and consumer.

Rather than compare the stigma and disadvantage of one mental illness compared with another, I like to compare mental illness with cancer.

If those of us in the BPD world had cancer instead of BPD, then we would have prompt access to correct diagnosis, treatment options in the public systems, support throughout and monitoring after treatment, the sympathy and support of the whole world.

And that's what I'd say to policy makers.

[NikNik]

Thanks everyone for your response to this. I appreciate everyone's thoughts and can see a lot of passion driving you all.

We are going to close this thread now, and pass on your feedback to MIFA.

Unfortauntely, not all of your feedback will be used for this project, only the feedback about the statements and requests and also the order of the priorities you listed. The statements and requests are aimed to be very broad as the advocates who will be using them come from a diverse range to experiences, and they will be approaching policy makers in the context of their own experiences, with these as resources to accompany them.

@Viv SANE has a program called StigmaWatch which reflects and acts on community concern about media stories, advertisements and representations that stigmatise people with mental illness or inadvertently promote self-harm or suicide. Perhaps you could report the article you mentioned in your post.

Overall, I think everyone's feedback has been very insightful, partiucarly around the statements and requests.

We'll keep you in the loop as to next steps and outcomes.

This was our first go at consulting and asking for feedback. It's something we're keen to continue, so keep an eye out for more sessions like this!

Nik