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Something’s not right

Janna
Community Elder

My Experience in the System

** WARNING - THIS IS A LENGTHY POST **  Apologies in advance, I tried to make it as succinct as possible.

My feelings after my son's residential stay in a CAMHS facility.

Prior to being admitted to the residential care unit, my son was in a severely depressed and non-functioning state. Every single part of his world had collapsed. He existed completely within the confines of his bedroom. The highlight of his day was to be on his computer. In this cyberspace existence he was able to feel “good” and stay somewhat connected with the outside world. Unfortunately, he became highly addicted to his computer and often spent in excess of 16 hours per day in front of his computer screen,at the expense of good quality sleep. He had no motivation to alter this situation and became paralysed in the grips of this self-perpetuating cycle of depression and addiction.

When my son was first admitted into residential care he improved and made some significant gains. I am of the opinion that he improved and performed well because his need for quality sleep was being met, he was in a structured environment that enforced healthy habits, and included a large variety of diversional and recreational activities that relieved boredom and loneliness. He also had access to regular therapy and connected with a person in a healthy therapeutic manner. Most importantly his improvement could also be largely attributed to the fact that he felt that he belonged somewhere, had purpose, and because he wanted to be helped, was optimistic and hopeful.

I believe that during the second half of his stay, after integration began, it was mistakingly believed that his declining mental state was directly related to his fear of leaving - and to a certain extent that may certainly have been a very valid factor. However, many things coincided with this including losing his main therapeutic alliance and having a period of absent “therapy” before the incoming registrar was able to engage with him. He enjoyed being in this facility as it was the only thing which gave his life a sense of purpose, meaning and direction. However, integration meant he had to spend more time at home. For every night & day that he spent at home, no-one realised that he was falling straight back into old habits of isolating and was unable to self-regulate his computer addiction. His outbursts of anger, increased irritability, drop in mood, failure to perform academically, and failure to meet the demands of the integration program were, in my opinion, viewed as being deliberate manipulations designed to lengthen his stay in the facility and defer his inevitable discharge. Although his impending discharge would undoubtedly have been a stressor and a large contributory factor, he was also met with inadequate support at this time, both inside the facility and externally.

The focus of care at this time appeared to shift from emotional to behavioural and he was treated with little sympathy and concern accordingly. Telling him that he needed to take responsibility for his own behaviour, and that it was now all up to him, was effectively like telling a drug addict to quit using and get on with their life in a responsible manner whilst simultaneously creating increased stress and dangling drugs in their face. It wasn’t going to happen, and like every addict he concealed what was going on whilst falling rapidly back into the clutches of his depression and associated computer addiction. I believe integration failed because of his increasing returns to home, and the associated lack of support, routine and supervision, rather than because of the fear of leaving the facility.

My son was (is) effectively dealing with the double demons of depression and an addiction. Unfortunately, throughout his stay in this facility, there was little (if any) therapy directed towards either, other than re-establishing healthy routines, re-engaging him with life, monitoring meds and enforcing healthy habits. In many respects this was simply putting on a bandaid, without attempting to heal the wound underneath. The core of his issues did not receive any direct or individualised treatment/counselling in accordance with well-established standards of care for depression/anxiety, and neither did he receive any therapy to address his addiction problems. A psychiatric registrar, mental health nurse and teacher are not trained psychotherapists and collectively were not able to deliver the much needed deeper work that he needed in conjunction with the above. It’s hard to imagine that a facility specifically dealing with adolescent mental health issues does not have a full-time psychologist employed  to provide much needed therapy. The best that they could offer was either a mental health nurse, or a psychiatric registrar, both of which are not trained in psychotherapy.


I’m at a loss to understand why the treatment of depression/anxiety in 2016 fails to provide a holistic and integrative approach in line with the gold mark standards of evidence based care. His treatment appeared to skim over the surface of the real issues and failed to build up his resilience, or arm him with self-help tools and providing a network of viable supports.

I am sure the program works well for some, less complex cases. It probably works well for adolescents that have only missed 12 months of school, as opposed to years. It may work for those that have a school full of friends to return to, or that have a functional home/social setting that includes siblings and extended family, or a group of peers that they can reintegrate with, or for those that have someone that they can connect with. It may also work for those that have a clear pathway beyond the facility, and for those that have the internal strength to face adversity and suffer from simple, less complicated and responsive variants of depression/anxiety.

When dealing with an adolescent suffering with mental health issues one needs to look at the big picture. It’s not just about the individual, but what exists around that individual. In my son’s case he had nothing. If there was a checklist that needed to be ticked prior to discharge it would look something like this:

Has the adolescent’s mood shown consistent improvement and stabilised for a period whereby their mental health would now be deemed as stable?
Does the adolescent have a clear and well established pathway beyond discharge?
Does the adolescent have age-specific social support in place?
Has the adolescent shown that they have the skills and capacity to cope outside of this facility?
Does the adolescent and his family have appropriate support established to meet their needs?
Do you have confidence that the adolescent will be able to cope following discharge?
Has the adolescent followed and complied with the integration plan?
Do you believe that the adolescent is comfortably integrated into their new setting?

The answer to every one of these questions is “NO”.

So my question now is: Where is someone like my son supposed to get help from? If the “best” adolescent facility in the state has been unable to provide a lasting or sustainable improvement, is he now deemed as being “untreatable” and beyond help? Is it right for a mental health facility to discharge someone who has been unable to demonstrably display that they will cope on the “outside”, or to discharge someone without suitable age-specific and sustainable support? Has our mental health system become so focused on bed availability and protocol that discharge forges forward regardless of the well-being of a patient and somehow legally bypasses “duty-of-care”? I’m sorry, but I just don’t get it. Not one part of me see’s that my son’s discharge was ethical, warranted and in the name of patient care. His time was up, they needed the bed and they were not prepared to invest another millisecond of time towards him.

And in keeping with the general tone of the place, we have not received any communication or gesture of post-discharge support since he left. Eight months of association, and so-called care, has ended with not even so much as a phone call to check in on his well-being. Doesn’t that just say it all.

Having gone to this facility is not being viewed as a total waste of time and a failure. If anything it has been a valuable learning experience that has revealed exactly what does work and what doesn’t work for my son. It has provided me with greater insights which hopefully will bring him one step closer to getting better, and me one step closer to getting my son back.

I really needed to offload this.  Sorry 😁

Janna ❤️

13 REPLIES 13

Re: My Experience in the System

Hi,

I can see that you have high expectations of the system. In my experience (caring for a son in his mid-20's) “consistency”, “clarity”, “capacity to cope”, “compliance”, “comfort” and “stability” are all variables and not constants. Accurate predictions are difficult to make and there are no guarantees. While I hope for all those things and would love to see a “clear and well established pathway”, all that remains is uncertainty and a determination to do what’s best.

“Where is someone like my son supposed to get help from?”

This is my current list:

  • a place to live that feels safe and comfortable, and is flexible and non-demanding
  • family and carer(s) who have good understanding of the illness
  • a good psychiatrist to provide a correct diagnosis and to manage and adjust the medication
  • an excellent psychologist with specific experience of the illness and who can connect with your son
  • a reasonable GP to do referrals and correctly fill in the necessary paperwork
  • someone to actively link and continually inform the psychiatrist and psychologist (and maybe the GP) to make sure they work together

I also once hoped for “getting better, and ... getting my son back”. Over the years I’ve had to re-think what those things actually mean.

Best wishes...

Re: My Experience in the System

Hello @Janna,

From reading your post I could not agree more with how the lack of a holistic approach to recovery has impacted negatively on the recovery of individuals.

It is really good that you are aware of this and focusing on some steps towards dealing and working around this with your son. I think reflecting back on all the treatment he has had and focusing on what has and has not worked will be hugely helpful for treatment plans in the future and might even be worth going over with  his psychologist and psychiatrist.

Is he linked in with specialists who have lots of experience with his symptoms and age group now?

Lunar

 

Re: My Experience in the System

Hi @Luna

I'd like to firstly apologise for my critical offload of the system as a result of my experience.  My background is in the health industry and I think this colours my perspective a little.  My frustrations with the health care system began on the other side - as an employee in middle management.  Having worked in several hospitals, in which I was involved in many committees and working parties that dealt with patient care, funding/resource allocation, quality assurance, etc.  I(we) were forever trying to deliver quality patient care on the smell of an oily rag.  It appears that nothing has changed except this time I was on the other side as a consumer via my son.


I DID have high expectations. Having never been through the mental health system in this manner before gave me false hope. For a period I believed that we had finally found the right treatment and I was optimistic because he responded so well. I have subsequently had to downgrade my list of wants/expectations with regard to my son and am thankful that he at least is safely stable at the moment - as opposed to where he was 6 weeks ago when he wanted to end it all.  Now that my expectations are more rooted in the reality of things, I will just have to make the best of what I have and accept that he is where is now - and continue to hope that the future will bring positive change. 

I have discussed my concerns with both my son's psychiatrist and psychologist and both empathically concur with me but are unable to offer any solutions other than to just continue doing what I'm doing - looking after his basic needs, keeping his meds up, being supportive and ensuring he attend psychotherapy on a regular basis.

I intend to be a voice for positive change in the system to the best of my ability. Accepting things by lowering my expectations is a good coping strategy, but it doesn't mean things are right. I guess it's like swimming against the tide, versus swimming with it. 

All the best

Janna ❤️

 

Re: My Experience in the System

Dear @Janna

I believe your insight into both sides of the medical system, makes your post significant and more than an offload, and the length necessary for clarity.

I do believe there needs to be more stability within the system and that workers should be contracted to stay in one place for at least a couple of years. My son had too many changes in his brief time in the system and it did not give him any confidence in it, which was a bonus for me, as he trusted me more. I understand that career paths are important for employees  .. as constructive life paths are critical for all humans... and clients/users etc. 

Given the particularities of mental health issues and the nature of therapeutic relationships. Perhaps the model of 2 year contracts for country teachers & doctors and some salary loading if that is what is necessary.

It is not good enough for parents to be told there child is getting appropriate support OR the taxpayer to support a system that does not meet the needs of the people it is designed to treat.

On a personal note, I am glad that your son has had some positive experiences.  All I can offer is hope in the future that he will recognise the limitations his computer addiction has placed on his life.  my son is at a point where he is finally asking for support to limit his computer time .. but he is 24 .. Good Luck Janna .. I knew you were coming from a medical background .. so it made your posts more poignant for me.

Re: My Experience in the System

Hi @Appleblossom
100% agree that there needs to be more stability in the system when it comes to workers.

I just want to clarify up front that "residential" does not mean my son lived their for 7 days per week for 8 months. He initialy attended Mon-Fri, and was at home every weekend, public holidays and for school holidays. In the second half, after integration began, they incrementally increased the nights at home by 1, then 2, then 3, then 4.

Adolescents that are admitted to the unit my son was in are allocated a "Care Team" - comprising of 4 individuals. The primary treating psychiatrist (a full-time staff specialist), a mental health trained nurse which is their "Team Leader" or primary nurse, a specifically trained teacher who is allocated according to their Year in school, and a psychiatric registrar as their therapeutic ally.

The treating psychiatrist meets in an informal consultation-type manner with adolescents, and is the convenor of "Family Meetings", which are held every 2-4 weeks, and is primarily responsible for overall patient care and medications. They do not provide therapy as such.

The nurse ensures that meds are taken, school is attended, behaviour is within acceptable limits, supervises excursions, provides transport as required, and tries to develop a rapport with the adolescent. They provide some counselling, but not therapy.

The teacher is an appropriately trained special education teacher who develops and supervises a specialised learning program and accordingly builds up a strong working relationship that encourages independence and positive outcomes.

The psychiatric registrar engages in approximately 2 "walk and talk" therapy sessions per week which is designed to foster a therapeutic alliance that provides a greater insight and understanding of the issues at hand.

In the course of the 8 months that my son was there, his treating psychiatrist went on leave at least 3 times, at which time the psychiatric registrar would take charge under the direction and supervision of the other psychiatric staff specialist. The first psychiatric registrar's posting ended after 4 months because that training module was over and she was required to move onto her next posting. There was a delay of approximately 6 weeks before the incoming registrar began and then his availability was reduced because he had exams, lectures, etc. to attend. The primary nurse allocated to my son took leave on at least 2 occasions, and was on sick leave on at least 2 separate occasions. Other nurses who are not the "primary" nurse do not know the adolescent intimately, and are therefore not up-to-speed with the adolescent or their family/carers. The teacher was frequently seconded to other SSP schools in the area to provide relief, often for weeks, leaving my son with a "sub" teacher. In my experience there was no access to a psychologist, counsellor or social worker, for either my son or myself and this support was not offered. In fact I couldn't even say with any certainty whether the unit even employs such people. If I had any issue I was instructed to contact his primary nurse, and if he wasn't available, then another nurse would attempt to assist me, but often was unable to answer my questions. Throughout all of this I was not asked once by anyone how I was coping, what my thoughts were, whether I had sufficient support, etc.

So as you can see there was really no consistency or stability. Everytime my son "connected" with someone they either left, went on leave, or were on secondment. Even the art therapist, who he liked a lot, took long service leave.

Prior to attending this unit I was told that it had a really good reputation with great successes. I wonder how they assess "success" and whether anyone has ever done a post-discharge survey to evaluate outcomes. They may be in for a shock if they did that.

Another healthy offload .... 😁

Janna ❤️

 

 

Former-Member
Not applicable

Re: My Experience in the System

hello @Janna

Lengthy posts just demonstrate to me that you are feeling very passionately about the treatment as well as lack of for your son.

There is currently a letter written by a psychologist specialising in assessing the youth. The letter is on facebook. I am assuming that it is not a scam. The letter is addressed to the current prime minister, not sure if i am allowed to mention names even though we all know who the prime minister is.

It will be interesting to see the outcome of this letter. I strongly suggest you do a search for the article.

I am waiting to see if the prime minister responds in person or if there is a reply from the health minister.

Newslines are frequently stating about the incredible increase in youth suicide and youth unhappiness.

What is being done about this? Where has the extra funding for mental illness that made huge headlines been spent?

The hospitals are having wards closed down. Emergency hospitals are being closed.

There are few private medical clinics for mental health and most are owned by one company within this state.

There are not enough beds, the staff are not given up to date, continuous training.

The whole mental health system in this country is failing. The many minority organisations set up to help those affected and their families are swamped.

The whole system needs to be overhauled and run by the federal government only. We have a health minister is this country. This is that minister's job. Forget funding different states, with so many offshoot small companies. Too much funding wasted.

Yes the system does not help our youth, they are discharged and placed back in a society that does not know how to treat people suffering from mental illness. Yes we have "are you ok" days, but the average person still does not know how to respond or relate to someone if they know that they have  a mental illness. There is still stigma out there.

The service is no better for someone suffering from a mental illness of any age, even if you have had an illness for a long time and have built up your own strategies.

Yes I too feel passionate about this subject, I have mental health issues and I also have an adult son with mental health issues who is in total denial.

Write to the health minister, your local member of parliament, the opposition, the mental facility where your son was. If your passion is strong, use it to fight for us who are so tired and drained.

Good luck with your endeavours and your care of your son.

 

Re: My Experience in the System

late Hi @Former-Member

Just a short reply cause its late.  EVERYTHING you said was spot on.  There are a lot of inadequecies within our mental health system.  It is failing us.  I'm currently writing a blog-style article about this.  I'm fed up.  You have given me extra incentive to take this further and to speak up.  In the meantime I will check out the psychologists letter etc.

Thanks for responding and expressing your opinion.  Stay tuned.

Janna ❤️

Re: My Experience in the System

Hi again @Former-Member

I haven't had any success as yet finding the letter to the prime minister.  Are there any keywords I could use in my search criteria that would point me in the right direction?  

Janna

Re: My Experience in the System

hello @Janna

Thank you so much for your response and taking the time to let me know that it helped even in a small way means a lot to me.

i always write such lengthy posts because i just let my thoughts flow.

i also feel very strongly about this but am not well enough to take it on at this present time. I currently have different issues with a cat team, also a union. Both health issues.

I am sick and tired of being spoken to as though I do not have a clue or do not matter. In fact I am constantly interrupted so that even my thoughts do not matter to them. I am having to be assertive in so many areas of my life at the moment and I am drained.

I will come back to this matter though because I know it will not go away.

Thank you and good luck on your journey.

Hopefully we can inspire others to do the same. I am more than sure many have in the past.

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