What should we expect from the mental health system and what should we expect from those suffering with mental illness

Emy · ‎02-10-2014

Hi,

I am the primary carer for my boyfriend of two years who suffers from Borderline Personality Disorder (cluster b), bipolar, depression and the resulting anxiety. Diagnosis have come and gone over the years as have his treating psychiatrists in the public system.

I would like to explore the following questions and am interested in the thoughts of forum goers:

What obligations does/should the mental health system (governments, society, medical professionals, support services) have towards people with severe mental health issues that prevent them from engaging with assistance of their own accord?
What should we expect from our loved ones with severe mental health issues in terms of commitment to improving their quality of life?

Some context...Engagement with any service (support, professional etc.) relies (to some extent) on the ability and commitment of the mentally ill person to engage. My partner is committed to improving his quality of life but the very nature of his illness somewhat circumvents his ability to actively do so. This often means that he is discharged from health and support services, ultimately for a failure to consistently engage. For a long time I was of the opinion that "I can lead the horse to the water, but I can't make it drink". Having witnessed first hand just how challenging it is for him, I am left questioning how reasonable it is to expect someone to do something that they are programmed to be incapable of doing; are we setting these people up to fail? What is the solution? I have even tried to get him connected with private psychiatrists thinking that surely the service would be more personal and engaging. Four private psychiatrists to date have declined to take him on as a patient. Too hard? Selective? Who knows...?

He is committed in principle to recovery but for whatever reason his will is overpowered by the symptoms of his illnesses.I am fully aware that I cannot do it for him, but where is the line drawn between self help and intervention to save a human life?

white knight · ‎03-10-2014

Hi Emy. Welcome to Beyond Blue forums

Its nearly 24 hours since your post and still no reply. It is likely because your question is beyond the expertise of some of us (including myself)

Essentially we are volunteers trying to help others with our own mental health experiences and life experience.

I hope you get an answer to satisfy you. All the best.

Tony

Emy · ‎04-10-2014

Thank you Tony. I see what you mean.

In reality I don't believe the experts know the answer either. Sure, some may have opinions but I was interested in the thoughts of others that may have pondered the thought from a variety of different perspectives (family, carer, friend, patient).

I'm laughing as I'm typing—on reflection, I think the question was the product of my own mental health diagnosis (ADHD). What can I say...I'm a deep thinker with my own unique sense of logic 🙂

I still think it's a valid question and I hope others feel free to share their own thoughts on the subject. I'm sure there are many people out there who feel the weight of expectation of 'the system' i.e. pressure from doctors to attend appointments, expectations from family members to 'get well'—they are all connected.

Thanks again...

HA1 · ‎04-10-2014

Hi Emy

Agree with WK, it is a difficult question to answer, mainly because the answers will necessarily be subjective (and therefore possibly hurtful) whereas the response really needs to be based on objective logic. But here is my opinion:

I will keep my answers brief because otherwise I will just ramble on forever! They are based on my belief in utopia and not necessarily what is practical or possible.

1. I believe that society and the government (of the people, not of politics), have an obligation to care for those that require care or are less fortunate. This is a general principle, and not necessarily just in relation to mental health. I also believe that this does happen (and did in my case), but unfortunately it is not consistent. Instead it becomes a lucky dip, as how you are treated by the mental health system. The 'bottom line' of your question appears to deal with involuntary admission. Ok, its a question worth asking. The metal health act requires the the health system to provide involuntary care for those it deems being a risk to themselves. (Or something along those lines - I don't have the act in from of me!) Does it work? I suspect it does not always, and I also suspect that hospitals, etc, are reluctant to offer care to someone who does not voluntarily seek it for practical and other reasons. It is a big step. My not so learned view.

2. An interesting question. My inclination would be to say "see 1 above". However, I believe the expectations of our loved ones should be consistent with the expectation of our mental health system. But how to put it in practice? I have an opinion, but it is very divisive, so for now will leave my answer at where it lies now. Suffice it to say that mental illness is (generally) no different to any other serious life threatening illness.

Thank you for your questions, they have been quite thought provoking.

Take care

K

Emy · ‎06-10-2014

Thank you K, both for taking the time to reply and sharing your thoughts. I took a few days to digest your words and conclude that there is no definitive answer. There are so many influential factors that will vary from person to person and from health service to health service.

Your words that really illicited deep thought were around mental illness being no different to any other serious life threatening illness (generally); so I thought about my partners health and imagined for a minute that he had cancer instead of a mental illness—in that circumstance he could choose to undergo treatment for cancer or he could chose to enjoy his remaining days and decline treatment. I would support and respect either of those decisions as one could assume the decision was made of sound mind. Then I thought, okay, instead of cancer what about something that affects the brain...a brain tumour-quite feasibly could affect his decision making, mood, personality, his ability to function in the same ways as mental illness. In the extreme of this circumstance would I expect him to be able to help himself? My answer is no. So in a roundabout way I've answered my questions (I'll avoid a rambling thesis as I could go on forever :-))

I feel comfortable that mental illness IS different to a physical illness in some ways and I believe that 'the system' needs to be better able to assist those that fall through the cracks. I'll leave it there as I don't want my opinions to unnecessarily influence anyone reading this. Suffice to say, I feel comfortable with my approach with my partner.

Thanks for helping that process along 🙂

Em

Darby_C · ‎13-10-2014

Hi Emy

I liked your post, it cuts to the heart of the dilemma for many carers – how do you mediate and how do you negotiate between institution and the person needing care so the outcomes are the best they can be? As others have also said, really sorry I don’t have a magic answer that might be helpful.

In health literature, so much talk is focused on systems, structures, instructions – access this part of the system for this, go here for that, take this, take that. But the quality of the service provided and the ability of the system to respond still comes down to one factor – people. My husband is a long standing sufferer of depression and anxiety and over the years we have encountered truly wonderful medical staff and truly terrible medical staff. Finding good help means finding good people – good qualified staff who the person needing care can trust. If it helps at all, it took us a while to find the ‘right’ care for my husband. Finding a psychiatrist who specialized in the field of issues which were directly relevant to my husband’s set of circumstances/conditions also made a huge difference to his experience (and effectiveness) of his treatment.

All the best xx

Darby

Emy · ‎23-11-2015

Hi, A year on from my original post and I thought it timely to shed some light on the answers I have to my own questions...

To my first question, I have come to the stark realisation that the system is flawed, improving but flawed. Therefore, I took the approach that there are no rules. Since my post, I was granted a carers allowance which I use to pay for Private Hospital Insurance for my friend. This has given him access to services in the private sector. The private sector is still a part of systemic failure in mental health but the positive outcomes have well and truly justified the expense. He is participating in DBT as a private hospital day patient and this therapy has been the catalyst of change. It will take a long time but he already has some wins on the board with some changed behaviours despite only being 10-weeks into the program. The public system in WA does offer DBT albeit a "women only" group with an 18 month waiting list. I continue to have to 'fight' for access to services and the appropriate help and I have even challenged the thinking of some very senior psychiatrists. The realisation that there are no 'rules' public or private empowered me to stand up for what I believed was right and fair. So far, so good.

Emy · ‎23-11-2015

To answer my second question... Mental health recovery models these days are all client centred meaning that the mentally ill person determines what the recovery focus is and the pace at which progress is made. I am confident now to say that if I had left it to my friend to initiate recovery actions, he would still be in crisis and subsequently unable to engage in any recovery activity. In hindsight it was actually a good thing that no body could provide any solid answers as again, I followed my instincts. I took the approach that, at the time in his life, my friend was unable to determine what was best for him or what recovery looked like, through his eyes. I made those decisions and whilst he didn't like hearing the truth and did not agree with some of my actions/decisions I stand firm in the belief that I have done the right thing. I asked him this morning how he felt about me 'taking control'. His reply:"Initially, I didn't like it. It forced me to admit that I was unable to do it of my own accord. Now, I look back and think, thank god you did take control because I clearly was unable to help myself and I am feeling good about my future for the first time in decades!"As the journey continues, I am very concious of the need to hand back control and involve him in decision making for example, I had to manage and drop off his medications daily to a) ensure he took it b) ensure he didn't abuse it c) to make sure he didn't run out. He now manages his own medications with only a small amount of prompting and reminders from me. There is a long way to go but I wanted to provide this update in support of any carers or families out there that were experiencing the same challenges. To them I would say, trust your instincts, don't just accept what the professionals say; if you don't agree, speak up, voice your opinion and remember that you know your loved one better than anybody else.

Chris_B · ‎23-11-2015

Hi Emy, thanks so much for coming back and giving us an update, what you've learnt will be valuable to a lot of people we have coming through this forum that feel lost in the system. So great to hear that things have turned a corner - you've been a great friend, and it sounds like you're appreciated for it too. If you have time I hope you can stick around and share some more of your insights in the other carer threads here.

Emy · ‎24-11-2015

Hi Chris,

Thanks for the feedback! I was only recently considering how best to share my experiences as I truly believe I'm breaking new ground here. I am currently in the process of trying to set up a shared care arrangement between private and public psychiatrists; I guess the outcome of this one will confirm my thinking 😜 and this may very well be the place to share!?!

Em x