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AUSSIEedfamily

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Reply with quote  #1 

For all those parents/carers/families of those that are now young adults and those loved ones of adults do you get shut out by clinicians and clinics? Do the clinics and clinicians say your child/loved one is an adult we cant include you without the consent of the patient? This has been a common problem and especially is a huge barrier in doing FBT with those young adults and adults.

There is possibly a solution. Helping Minds in Perth Western Australia has developed a practical guide for clinicians, professionals on how to work with carers of those people with mental illness. This guideline is for all cohorts of mental health illness/disease across all medical settings. In the mental health carer committees I attended there are many who reprt that the system, the professionals and clinicians so often shut the carers out completely.

Please have a look at the document on this link and provide me with your feedback?






https://helpingminds.org.au/wp-content/uploads/2016/12/A_Practical_Guide_for_working_with_people_with_a_mental_illness_February_2016_002.pdf

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Foodsupport_AUS

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Reply with quote  #2 
This is a great document Aussieed. 
I am not sure how it translates in other countries as regards privacy however I suspect in most cases it will translate well. Being excluded from private conversations is one thing, but when you are dealing with long term illness this explains well how carers should be included. I think also the implication that everyone needs support, no matter how much they feel isolated, a person who is ill needs a support network to get well and that support network needs general information and support too. 

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tina72

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Reply with quote  #3 
Hi Aussieedfamily,
thanks for that document, I will print it out and take it with me if needed.
At the moment our GP is very compliant although my d is 18 now. I get all informations I need and he talks to me without her if necessary.
But she told him that this is o.k. and I have a legal guardianship for her, so that is an easy case at the moment.
It is kind of funny here in Germany: If your kids are just 18, they try to kick you out when they don´t know anything about ED. But on the other hand, my MIL is blamed by her GP when she doesn´t accompany her husband for appointments there (he is 82 and has no dementia[wink]). If my husband needs to go to the dentist it is totally normal that I go with him into the treatment room (he is a bit anxious about that). No one would ever ask him if he likes me to be there and if I should hear something about the diagnose...
So in my opinion, that only has to do something with ED and mental illnesses.
Thanks again for all these wonderful informations here.
Tina72
kazi67

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Reply with quote  #4 
Hi AUSSIEedfamily
I’ve had the shut out feeling with my d now 19 diagnoses at 18
I’ve had docs asked me do you think you’ve done to much for your d?
Physcs look at me like who do I think I am and talk to me like I’m an overprotective, overreacting idiot, when I’m the one who refed d to near on WR, and fought that demon (with no support)
So yes I think that document would be very useful to parents/carers
Probably too late for us but how would it work? I’m not sure I understand how a parent would receive this unless it’s on a site like the FEAST for downloading? My thinking would be it would be most helpful to receive it on diagnosis? Then you present at appointments?
Or is it a document all GP’s should have available ?
Sorry for all the questions but just trying to give you feedback and thinking about how it could of helped our families situation
Kali

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Reply with quote  #5 

Hi AussieedFamily,

This is a difficult topic here in the US, because federal law dictates that the patient over 18 is entitled to decide who can be involved with their medical care. They need to sign forms stating specifically who can know about their medical history and naming those individuals who can be involved, and the medical provider keeps that on file. It is called HIPPA. Here is a link to understand more about it.

https://www.hhs.gov/hipaa/for-individuals/guidance-materials-for-consumers/index.html

I have found, however, that if I go to the regular dr. or dentist with my over 18 kids, nobody ever asks whether these forms have been signed and they just involve me. It seems to be more prevalent in the mental health field. So our choice as parents is to make sure, as I have done, that my daughter has signed all the necessary forms, and I have also shown up with her to see providers and we make it clear that she agrees that her parents can be informed and involved. When she was very actively ill she did try to shut us out so she could lose weight without us knowing the number on the scale, (as though we wouldn't notice?) but I found that the responsible providers were open to parental involvement when there is an anorexia diagnosis, especially when self-harm and suicidality have been present, and when I phoned them and let them know of our concern about her weight loss, they asked her to sign the paperwork and we were able to work together to get her to agree to sign the papers. My d. and I have an agreement that I will let her know if I speak to them and that I will start by approaching her first with my concerns before contacting them and I have respected that.

Unfortunately this has led to situations where an individual has a serious mental illness and the parents cannot be properly informed and step in to help with in some cases really disastrous results, such as mass shootings. It is really a problem and I wish these laws could be changed.

Kali




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AUSSIEedfamily

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Reply with quote  #6 
Dear Kali,

I am aware of HIPPA and we have something simmilar here in Australia for anyone 18 & over its the Privacy act its an Australian Commonwealth federal law covering every Australian state and territory. It covers every aspect of a persons life once they turn 18 every thing is private and confidential unless written permission/consent is given for another party to know about it. My wife & I have joint bank accounts but when the bank needs to send us a letter about the joint account we get two separate letters. Then if we want to enquire about the account we have to have given written permission to the bank for them to tell the other person eg my wife about my part of the account. This privacy act also invades our medical life. If I am in hospital for phyiscal health reasons I have to give writen permission for my wife to know stuff and I have to give written permission for other medical organisations to know about me eg my local MD (GP in Australia)

We also have in each state or territory laws called Mental Health Act & Carers Recognition Act. The document from Helping Minds is about navigating the Federal Privacy Act, the  state/territory laws of Mental Health Act & Carers Recognition Act in a way that gets clinicians professionals able to engage with parents/carers/families that does not breach any of the laws/legislation but lets theraputic alliances be developed with all parties.

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kazi67

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Reply with quote  #7 
Hi AUSSIEedfamily
Oops so I read this wrong, this document is for the “professional” not parents/carers
I think it would be a step in the right direction for GP’s etc to have this document
I had no idea about how because my d was 18 I would get treated like I didn’t matter or to be included and this was very upsetting as of course all we want is our d to be better and to do all we can to help and of course as we are supporting her fully financially/emotionally and in every way
It would be good if they had let us know this in the first instance but anyway thanks to the great support on this forum I learnt about the carers act etc and that I was indeed part of the “team/solution” Pity these so called professionals have to make it harder for us than it already is
Kali I did have some professionals that didn’t make me feel this way when I attended appointments with my d but I guess the ones that did are the ones that stick in your mind as you don’t need anyone making this journey any harder than it already is, funnily enough they are happy to take the payment for services
The ones that were helpful unfortunately we are still on the wait list for
AUSSIEedfamily

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Reply with quote  #8 
Dear kazi67,

The document is actually for everyone. It was developed to apply right across the spectrum/cohort of mental health illness and disease. There are just too many cases where as soon as the person says no to the consent question then clinics and clinicians then shut the door and lock out the parents/carers/families of anything and everything with the person. All to often in Australia this has resulted in the death of the patient typically from suicide. The people with the highest investment and capacity for helping the person were completely locked out by clinicics and clinicians. All too often parents/carers/families were never ever told that their loved one was in crisis and had presented to hospital emergency departments (A&E) for help. The parents/carers/families were never ever informed that their loved one had been either admitted to hospital or discharged from the emergency department or discharged from hospital after an admission to a ward. Many of those discharged were simply given some pills and a referal to a specialist and sent out of the door of the hospital onto the street and the worst outcome was then the result.

This document goes a long way to solving the issue of patients not providing consent. I believe that every parent/carer/family should ask the clinic/service provider the clinician/professional if they would follow this document, if the answer is "No" they would not, then find another/different clinic/service clinician/professional.

While it is designed from the Australian perspective and to resolve the Australian situation/scenario I believe the document can easily apply to any country/place with some slight adaption to cater for local laws.

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kazi67

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Reply with quote  #9 
Thanks for clarifying AussieEdfamily
This could still be useful to us then for example my d is waiting to see a new dietician, so if I went with her it would be good to take
Is it available for use now or is this just a draft?
Sorry for the questions but I don’t understand it properly but I can see how it can help
And hopefully help others too :)
AUSSIEedfamily

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Reply with quote  #10 
Dear kazi67,

Its a publically available document for anyone and everyone to download/upload and save and/or print out. Then provide copies to whoever you feel you would like to. You can even forward others the link.

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kazi67

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Reply with quote  #11 
Thank you AUSSIEedfamily!!
AUSSIEedfamily

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Reply with quote  #12 
Here is some info from the Helping Minds team running the pilot project

XX XX and I are working with local mental health services to help them implement the standards within this guide.  Last year XX XX had great success with several inpatient mental health services, with all sites reporting increased carer engagement over the project period.  Consumers who were surveyed at one of the services also reported significant improvement in staff engagement with family and friends over the project period – very heartening!  Over the next few months we will be working with community mental health services, and we look forward to seeing what emerges with these services.

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