Lived Experience Forum

[MelLeighD]

I have often questioned the efficacy of using GPs as the only first port of call for referral and tentative diagnosis. It took me 5 years of navigating the system, and finding every treatment/medication prescribed to me was not helping before I finally stumbled upon my own diagnosis. And I found it after some light Wikipedia research. It was only after I first suspected I had BPD that I was then referred to a diagnostic clarification psychatrist and then referred to a psychologist that specialised in DBT treatment. I am university educated and not entirely un-self-aware, and I was lucky to happen upom this insight into my condition. But not everyone has the ability or my luck in order to self-diagnose and finally find the right treatment. I suffered for 4 years under successive CBT therapists (the cool detachment of this treatment is not helpful for people like me and often only antagonises the feelings of a lack of trust), and it seems now to be such a drain on the system. What more can we do to make sure that effective diagnosing happens quickly and accurately?

[NikNik]

Hi @Aonaran
You raised a good question about how it can be addressed. My opinion is that more people with experience of the MH system should be involved in policy development and holding the system accountable.

@FrankGQuinlan can you share with us some way people get advocate and get involved in consultations and/or raise their concerns?

[MMHReal]

Money is important especially concerning the state of many mental health facilities, however attitude is the first thing that needsto shift. What troubles meis many doctors etc do not have personal experience with mental illness. Yes it's not necessary of course but if you can't understand how patients are actually treated, how can you really understand what needs to change? It's difficult 

[Andra]

FrankGQuinlan I agree the next generation are going to continue to fight for change. My adult children who all grew up as carers are now finding time to pursue their own goals. (Now I am supported) One is about to start medical school and is committed to providing better care than he saw me receive.

[Zoe7]

@Phoenix_Rising It is exactly the same with the education system. The job is being over-run with checks and balances and the core business of actually teaching the kids has become secondary. The governent wants to have the 'evidence' behind everything but then does not put the funding into actually what is needed - and stated - by those working at the ground level.

[FrankGQuinlan]

so sorry for your experience @Phoenix_Rising

earing stories like yours drives me and my staff to work even hard - we have to do better.

As hard as it is for you (and I hear that!) it is also so important that these stories are told.

Unless we shine a light in the darkness things will never change.  You are one of the pioneers, and I thank you for your efforts 🙂

[matsionoah]

Well I just read the section about priority Area 2, which is my key area of interest, the part of this highlighted to me sever adn complex mental illness, while some of the words in there appeal to me, for example mention of substance/drug abuse and apparent acceptance that the system is inadequate .. all I see are words and no real plan for action. Is there any mention in this plan about legislation reform? I passionately feel all mental health legislation needs to be abandoned and started again!  

[Phoenix_Rising]

@MelLeighD I agree! Until I found my cool GP last year, I never understood why people would constantly ask me if I had a GP. It seems ridiculous to me that GPs act as "gatekeepers" to accessing the medicare funded psychology sessions. The vast majority of GPs are clueless about mental health. Even my cool GP is clueless...she's just cool because she knows she's clueless Why can't we dump the idea of having to get a mental health plan from a GP, and then the money saved could go towards funding more than 10 psychology sessions per year???

[NikNik]

@MMHReal Yes! What an awesome point! I visited an organisation called Flourish today push for the employment of people with lived experience within the organisation - and encourage them to use their experiences when working with people using their services.
It makes a HUGE difference.

[FrankGQuinlan]

I wish it wasn't so @matsionoah - but you know it better than me

Things ar edifferent in different states, and between different facilities.

If care is offered in the community it needs to be properly funded and done well.  It also need to be done early.

we let too many people get too sick and then offer inadequate treatment.  

I am sorry you and your son have had such a rough trot - we are working to bring about change.

I am sorry it is not hapening quicker 😞