Topic Tuesday - 24/02/15: This is your chance to be heard!! Contribute your experiences into medication and mental illness.

[Hobbit]

Work with ARAFMI NSW and contribute your experiences to NSW Mental Health Commission into medication and mental illness.

We will be running a Topic Tuesday asking you about you and your loved one’s experience with medication.

We want you to contribute by sharing your thoughts and experiences from a carers perspective. Your experiences and expert views will help both the Mental Health Commission and ARAFMI NSW, with our ongoing advocacy work and ultimately YOU as a carer.

This is a real chance for you to voice your opinion and be involved in really making a difference. The role of a carer is such as integral part of the ongoing maintenance or recovery process, and we really value your opinions greatly.

The information we receive will be forwarded directly to the NSW Mental Health Commission. Any information you share with us will be kept confidential and anonymous, and we look forward to advising you of the results and feedback as soon as possible.

•  We would love to hear your thoughts on the role that medication has played in your loved one’s  recovery

•  What’s your loved one’s experience with:

-          Taking medication

-          Receiving the right type of medication

-          Changing medications when required

-          Information provided about the medication that your loved one was prescribed

•  We would also love to hear about any challenges you might perceive in using medication as a treatment and your thoughts on improving treatment of mental illness using medication

Topic Tuesday's live discussion has finished. However, you still have to opportunity to contribute to this discussion. All you need to do is click 'reply'. 

NB: As per Community Guidelines, this conversation isn’t about specific medications – what does or doesn’t work. This is a more of a broad discussion to capture people’s experience, regardless of the type of medication they are on. Also it’s important to remember to not make any decisions about yours or your loved one’s medication or dosage based on any of the discussions here. All decisions about medication should be done in consultation with the health care professional.

This is a really great opportunity for you guys to express you opinions and concerns, and we hope to receive some great contributions here. You views will certainly be forwarded on and feedback given!!

[Louise]

Eighteen years ago my sister, aged 33 years, was diagnosed with hypomania and she refused to be hospitalised. She initially did try some medication but not for long. Her marriage soon broke down and her illness became more severe. She is now extremely anti-social, hostile and isolated. I no longer visit because I am frightened that I will be provoked to violence. My parents and siblings generally had the attitude that she shouldn't have to take medication if she didn't want to. But looking back, I wish we had tried to encourage her more to take medication.

My 17 year old son had an acute psychotic episode in October last year. He was hospitalised under the Mental Health Act and stabilised over a period of 2 weeks. He was discharged without medication but within 10 days he was psychotic again and returned to hospital for another 2 weeks. This time he was discharged on a  medication which is commonly helpful for his diagnosis ( Bipolar Disorder 1). At this point I was very worried about him having to take anti-psychotic medication, as I was warned he would probably suffer weight gain and lowered motivation. As is common, he didn't want to take it either. I seriously considered whether or not it could be preferable to remain psychotic. But I decided to take the advice of his psychiatrists.

I have been amazed at how well my son has been on his medication. He has been thriving. He has been quite vigilant about his diet and in 4 months has not put on any weight. He worked well in the orchard for 3 weeks last month and is now full-time at college and booked in for his driving test to get his P's. 3 weeks ago, his medication was reduced for the 2nd time. His psychiatrist is happy with him and the psychologist thinks he's doing so well he doesn't need any more visits. The best case scenario is that if he stays on this medication for the rest of this year, he may be able to come off it CAREFULLY and may never experience any more MI. 

I realise it's still only early days and every one is different, but I am definitely very happy with the results of my sons medication. If only my sister had had more encouragement and support with medication, she could perhaps have had a much richer life.

However, I suppose it depends partly on what you value in life. For many of us, relationships are of central importance. On medication, my son is able to relate well to others. My sister, by contrast, is extremely difficult to relate to....but she is functional in the sense of housekeeping, cooking and gardening... and her son is officially one of the smartest mathematicians in the world. Who knows, perhaps he would not have done so well under different circumstances.

[JT]

I think I'll be in a much less interesting committee meeting at about the same time unfortunately so just in case I don't make it....

My son was a child when we first started trying medications some of which worked and others that were blazing mistakes.  Given he was 8 when we started I look back and am appalled at the lack of information I was given.  At the time I was just lost on the ever increasing speed of the rollercoaster and upset about the lack of support, guidance and understanding I was receiving.  Many of the medications were highly unsuitable largely because of their reluctance to investigate the issues and done (at their admission) on a let's see how this goes basis.  There was a high level of paranoia which caused my son to refuse the medication and refuse any attempts at therapy.  Changes of medication were met with objections about why this one would work any better than the last.  

Now at close to 17 he's recently developed insight into his own mental health and actually approached me about treatment!  Having seen the paediatrician he discussed his health and discussed medication with her.  He now takes care of his own medication regime and corresponds with her directly.  I can only hope it continues!  

My concerns with using medication as treatment is that it is often perceived as all that is needed.  I'm very passionate about treatment for mental health being a holistic approach and those changes need to start at the treating professionals level.  If they are not referring people to supporting services and treatments, medication is merely a bandaid.  

[3forme]

Its great to be having this discussion. I have two loved ones who have experience with medications. One loved one has been on various medications for about 12 years, and been greatly helped from a mental health point of view. Unfortunately, he has suffered many unwanted side effects. Some of the medications he takes are to counter the effects of other medications.

Some of the unwanted effects are weight gain, problems with blood pressure and blood sugar and anxiety. I guess my issues around the medication include

- Insufficient review of meds. They're not "set and forget", we need constant monitoring of type and dose as conditions and needs change over time. This certainly happens with medications for physical illness but not so much with mental illness, in my experience anyway.

- Not enough done to prevent unwanted effects. We all KNOW that these meds cause weight gain, blood sugar problems etc. More support in the early days from dietetians etc could potentially prevent many problems. I think this is happening more, but in many cases takes effort on the part of the family/loved one, it would be great to see it happen as a matter of course.

My daughter is much younger and has had a vastly different experience with medication for psychosis. He psychosis was resistant to treatment, which resulted in her having six different medications over the course of a year. Five of them didn't work, and some had very, very, serious side effects. One helped her "a bit".  Fortunately, we had fantastic medical support and out of necessity switched our focus to psychosocial support for her (and for the family!). It took a lot of time and effort, and would probably have been much shorter had the medication worked, but we gave it a good try!!

My issues surrounding this are

- We need more research around better medications, especially for those who are "treatment resistant" and suffer severe side effects.

- We also need research on long term effects, and on how these medications effect young people, who are using them more and more.

- We need psychosocial support AS WELL AS medication for our loved ones, they work in tandem. It can be incredibly hard to obtain this type of support and it took much work on the family's part to make it happen. In our case the psychosocial support has allowed our daughter to reduce the medication that she takes, and to obtain full time employment.

One other thing - we have had the experience that our loved ones have been "discriminated" against within the health care system due to their mental illness. By this I mean that physical health support such as blood and weight monitoring, investigating symptoms of physical illness, back pain etc has been "overlooked", but would have been managed in a person who does not have mental ill health.

Our experience is that this "discrimination" contributes to greater impact of unwanted side effects and can lead to people choosing not to take medications that may otherwise give them benefit.

[CherryBomb]

Good evening everyone!

Welcome to this month's Topic Tuesday on medication. It's a conversation that's needed to be had. More importantly, the concerns you write on this disucssion will be forwarded to the Mental Health Commission. So here's your chance to address your concerns.

From what others have written it seems that some common issues are:

- Unwanted side effects and insufficient support to manage these

- Lack of information/reviews

- A need for greater psychosocial interventions - not just medication alone

I'm wondering if these are things you and your loved one can relate to? Or perhaps you have different experiences? Also, as a carers what do you feel you need in particular in regards to medication?

[Purplewife]

As a recent entrant into the mental illness caring world, I don't have a lot to contribute but I do have a couple of points:
-The person I care for has had great results from anti-psychotics. But this only happened after several months of trying to get support. Even after describing clear symptoms of psychosis multiple times in EDs, and to several doctors, it took a rapid deterioration and hospitalisation before a therapeutic level of anti-psychotic was prescribed. Given the side effects, I am glad that they are not handed out without cause, but I think inpatient care could have been avoided if medication was provided earlier.
-I have personally done a lot of research to discover side effects, interactions and so on. I know doctors are busy but spending a little longer covering these - especially as they can be so serious - would be good. As a carer I've had to make diet/exercise/lifestyle changes to avoid side effects and more support in this would be good.
-The cost adds up quickly. We do fine financially so don't have a health care card or pensions, so even with generics the monthly med bill is pretty high. Like many mentally ill patients, the person I care for is on quite a cocktail and for people like us paying the full rate this gets expensive. Add in the regular doctor appointments for monitoring side effects and medication effect, and it can get tough. I'm vaguely away of some safety net or carers payments but no one has provided any information about it and I don't have the time currently to pursue. Perhaps some sort of group medication payment or monthly cap would help.

[CherryBomb]

Thanks for offering your insights @Purplewife . You raise points about costs (particularly when you don't have a health care card) and health professionals needing to spend a bit more time with patients to properly assess them and go over symptoms.

Did you find that you and your loved received adequate infomration about medication treatments and options?

[3forme]

Yes Purplewife, the costs of medication can be significant, even for people on concession cards. We cover the costs for some of the medication because its too high. I think the cost of meds can cause problems with compliance.

Also, glad things are getting a bit better for you and your loved one.

[Purplewife]

Good question @CherryBomb. I feel like we weren't really given much information about medication and options. But I also didn't demand more - by the time my loved one was in inpatient care I was just so grateful something was being done that I wasn't really pushing for anything more. Perhaps a better discharge would have helped here - by the point of leaving the hospital both carer and patient are probably better able to understand and question this sort of information.

[3forme]

Its something of a mixed bag when it comes to adequate information on medications. There is lots of information that can be researched and read, but its no substitute for a good clinician with  the "real world" knowledge and experience to give realistic, hands -on info about medications.