Saturday, March 4, 2017

Yet another story on the patient centred care we do not have and the transformation of the system that is in chaos -especially the mental health system. But of course we still have to keep speaking out because silence is the reason this junk has gone on for far too long.


#Mental Health Crisis--want help folks? GO PUBLIC---
Julie Ali ·
University of Alberta
If you are lucky you have a psychiatrist with hospital privileges who might be able to get you in.
If you are unlucky you just don't have much luck.
It's a matter of who has some way in and most of the folks don't know how to get help.
I can tell you how to get help.
Write publicly about the problem.
Go to media.
Ask for help everywhere.
And make sure that the politicians are getting the message.
The only way to get help is to become an "emerging issue" for the government of Alberta.
That is the only way folks.
Sad but true.
Like
Comment


Yet another story on the patient centred care we do not have and the transformation of the system that is in chaos -especially the mental health system. But of course we still have to keep speaking out because silence is the reason this junk has gone on for far too long.





‘Once you put on that blue hospital gown, you become a file’: The pressing need to empower patients

Sydney Loney, Special to National Post | March 1, 2017 11:28 AM ET
Getty Images
Judith John was diagnosed with an inoperable brain tumour almost two decades ago. Before one of many MRI appointments, she was sitting in a room waiting for her name to be called — but it didn’t happen.
Instead, a technician stepped through the door, looked down at her sheet and read out, “Brain tumour?”
It was an accumulation of experiences like this that transformed John into what she calls an “accidental patient advocate.”
“That moment in the waiting room was a symptom of a system that doesn’t look up and take you in,” says John, who worked in communications at several Toronto hospitals before she got sick.
“Once you put on that blue hospital gown, you become a file, a bunch of symptoms. I just wanted to be treated like a person.”

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Patient empowerment is important, John says, because illness is universal and there isn’t one person who won’t be affected eventually, whether they find themselves needing to advocate for themselves, or for a family member.
Thanks to the advocates who came before her, many Canadian hospitals now have patient advisory committees — John is on one for the University Health Network in Toronto. She says the first step is acknowledging patients (when doctors ask what they can do, she recommends they start by making eye contact with the people in their care). After that comes asking patients what it is they want from the health-care system – and acting on it.
John says there is still a long way to go before patients are really in a position to make meaningful change. On hospital walls across the country are signs proclaiming the facilities’ patient-centred approach, but she says no one really understands what that means. “Hospitals are dominated by process, so for them it’s about getting as many people in and through as fast as possible, as opposed to giving people the confidence to ask questions and be involved in decision-making.”
Fred Dufor / AFP / Getty Images
Fred Dufor / AFP / Getty ImagesA file picture taken on July 22, 2013 shows a nurse holding the hand of an elderly patient in a palliative care unit
Francesca Grosso, an expert in health policy and co-author of Navigating Canada’s Health Care: A User Guide to Getting the Care You Need, says those patient-centred signs are little more than rhetoric. Still, she’s optimistic. “So many movements start with rhetoric, so maybe someday they’ll be replaced by reality.”
The problem, she says, is that the health-care system was never designed around patients in the first place. Because they’re given so little choice in the decisions made around their care, they don’t see themselves as consumers, and they should. Grosso would like to see the government adopt a department of patient experience made up of people who understand policy and have no competing interests.
“We’re living longer and we don’t have a system that can provide complete support,” she says. “The aging population has made advocacy a big deal – and it’s essential because we’re the ones who are the experts in our clinical journeys.”
Over the past year, Dr. Granger Avery, president of the Canadian Medical Association, travelled across the country, listening to patient stories. “The societal voice is an essential piece in the design of our health-care system,” he says. “It’s owned by the people, which means they need to be recognized and have input on how it should best meet their needs.”
The potential for digital health to not only help patients become empowered, but also to transform the health care system as a whole
Unfortunately, Avery says, advocacy has been fundamentally undervalued. “We talk about it being a patient-centred system, but it’s far from that. Don’t get me wrong, doctors and nurses are doing their best, but the issue is with the organization of the system itself and how things are done, or not done.”
Part of the CMA’s current focus is on supporting seniors and making improvements to home and palliative care, as well as providing support to informal caregivers (there is currently a proposal in place to reimburse them). But to address some of the biggest challenges facing Canada’s health-care system – gaps in care that occur across the country and within hospitals themselves – Avery says the public needs to be involved in the design and management of the system overall. “Without that, we will continue to miss the mark.”
Cathy Fooks, president of the Change Foundation and former executive director of the Health Council of Canada, says that until five years ago, not much was happening on the patient empowerment front – and there is still some reluctance to embrace it. “Organizations that aren’t yet open to the idea are worried it will involve finger pointing,” she says. “But people are motivated beyond that. They’re engaged to make the experience better for others and they take a more constructive view.”
Getty Images
Getty ImagesA file photo of an empty hospital bed
What progress has been made so far has occurred most notably in hospitals. In addition to advisory councils, patients are on hiring committees and becoming increasingly involved with staff training and orientation, Fooks says. “They’re more embedded in the organizations themselves. Now we just need to drive that out into primary and community care – that’s the next frontier.”
Another issue is providing support – of any kind – to family caregivers. Fooks cared for both of her parents and was overwhelmed by the lack of communication and confusing array of services that didn’t share information. “I thought, ‘this is really chaotic. I’ve worked in healthcare for over 30 years and I speak English and I’m having a hard time – what on earth do other people do?’”
Fooks says it shouldn’t be up to doctors and nurses to navigate outside services when patients are sent home, but it does need to be somebody’s job. “Every situation needs to be looked at individually; so what will work for this patient in this situation as opposed to a blanket ‘everybody gets x.’ Not every parent wants their child helping them in and out of the bath.”
In Ontario alone, 3.3 million people are unpaid caregivers. “These people are lost in a maze with no compass,” says Lisa Levin, chair of the Ontario Caregiver Coalition. “There are so many agencies and services, no one knows who offers what. There should be clear ‘doorway’ to service where patients and caregivers can go to get questions answered.”
If people aren’t aware of the services available, whether it’s supportive housing, volunteer visitors or community transportation, they may be forced to move out of their homes and into nursing homes, Levin says. The health-care system simply isn’t equipped to provide round-the-clock care for all the people who need it. “Unpaid care givers are the invisible backbone of our health-care system – and they’re burning out. They need more recognition and respite, as well as some financial support.”
These people are lost in a maze with no compass
To make the entire process easier, Fooks says it helps to find out how things work while you’re still healthy. “You should know what you’re entitled to, as well as what to ask for when the time comes – people assume they’ll be told and it doesn’t always happen.” It didn’t happen for Annette McKinnon, who suffered joint damage after her rheumatoid arthritis went undiagnosed more than 30 years ago. When she had difficulty getting the help she needed, she felt betrayed by the system.
“Initially, I didn’t think there was anything I could do to change things for the better,” says the former market researcher from Toronto. But before long she became an advocate for early diagnosis and treatment, as well as better access to drugs. She was recently an ePatient Scholar at Stanford’s MedicineX Conference and is on the patient advisory board for the Arthritis Research Center. “You have to sort of stretch yourself,” she says. “You start out as a patient who isn’t involved at all, then suddenly you’re co-authoring research papers.”
McKinnon says it’s getting easier for patients to get involved, you just need to believe you can make a difference. Anybody can volunteer to be a member of a regulatory council, she says. Even more important is participating in research. “What patients and researchers think are important outcomes for studies is often completely different,” she says. “Patients can help ensure the questions being asked are more relatable. We’re the biggest stakeholders so we should have a voice when these decisions are made.”
Fotolia
FotoliaAn operating room in a hospital
McKinnon is currently involved in a trial program that gives her online access to her medical records. “I can read my doctor’s notes from home and see my latest test results – his own resident can’t do that,” she says.
Shelagh Maloney, vice president of consumer health, communications and evaluation services of Canada Health Infoway says giving patients access to digital tools to help them manage their health provides new models of care that are more affordable, especially in an antiquated system where fax machines are still the gold standard of communication between providers.
According to the 2016 Connecting Patients for Better Health survey commissioned by Infoway, 89 per cent of Canadians want access to digital health services such as e-booking, online prescription renewal, online access to medical records and e-visits with care providers, but only 20 per cent actually have it.

“What stands out for me is the extent to which engaged patients report how much better they’re able to manage their health with digital solutions,” Maloney says. More than 70 per cent felt online access improved their knowledge of their health and led to more informed discussions with their doctors. They also felt more confident in the care they received. “It just demonstrates the potential for digital health to not only help patients become empowered, but also to transform the health care system as a whole.”


Julie Ali ·
While patient centred care is being touted all over the nation the reality for our most disadvantaged citizens is quite different. The mentally ill citizen for example is at risk of not getting services or supports as well as being denied required access to mental health services.

In addition, we have advocates being subject to information restriction, lack of access to essential data in a timely fashion, retribution which includes banning, eviction of family members they are advocating for in the continuing care system in Alberta to even lawsuits. Why is there so much fear in the system about citizen access to their information? I guess this happens because the system is not willing to acknowledge adverse events, do anything productive when adverse events occur other than move families forwards and finally there is the cover up conducted by all concerned to ensure that no one knows of system wide failures in care of citizens.

This sort of junk frankly needs to end. In Alberta we have had decades of silencing families to maintain a fiction of good care that may at times be not true. It's time to accept that adverse events and fatalities occur and that these events should be addressed respectfully by the system. Failure to recognize adverse events results in them repeating and the learnings from such events do not get incorporated into best practices. Advocates and patients/residents in the health care /continuing care system are not going to accept silencing. We are sharing our stories so that we get the care that is required for disabled and mentally ill family members who can be seen as failing to accept required treatment when the reality is that there are no supports/accommodations made to support compliance. What we have is a system simply moving problems along from here to there and avoiding the real work of transformation.

Your silence with reference to these adverse events will not save your family members. Only your stories said to the world will ensure that the system is changed by families to meet the needs of vulnerable defenceless citizens. The time for change is now. Finally, if change does not happen by dialogue, political action and good citizenship -change will come through the legal system as this family is having to do:

http://edmontonjournal.com/.../family-of-suicide-victim...
Family of suicide victim sues Alberta Hospital for $750,000 for alleged non-admittance

TONY BLAIS
More from Tony Blais
Published on: February 26, 2016 |

The family alleges that Peterson, who is diagnosed with schizotypal personality disorder, had twice tried to commit herself to the Royal Alexandra Hospital’s psychiatric unit for her own personal safety and she was denied admittance, provided with cab fare and told to go home.

According to the statement of claim, Peterson posed a clear and imminent threat to herself on Feb. 22, 2014, and her daughter and a friend took her to Alberta Hospital.

The family alleges Peterson clearly presented as suicidal and likely non-compliant with her medications and the admitting nurse assured them that she would be assessed.

However, instead of assessing or admitting Peterson, the family alleges that the hospital turned her away and called her a cab.

According to the statement of claim, Peterson checked herself in at the downtown Chateau Lacombe and jumped to her death from the seventh floor on Feb. 23, 2014.
LikeReply3 mins

http://edmontonjournal.com/news/local-news/family-of-suicide-victim-sues-alberta-hospital-for-alleged-non-admittance


Family of suicide victim sues Alberta Hospital for $750,000 for alleged non-admittance

Published on: February 26, 2016 | Last Updated: February 26, 2016 3:52 PM MST
A nursing station inside Building 8 at Alberta Hospital in Edmonton. File photo.
A nursing station inside Building 8 at Alberta Hospital in Edmonton. File photo. JOHN LUCAS / EDMONTON JOURNAL
A mentally ill Edmonton woman’s family is claiming she jumped to her death from the seventh floor of the Chateau Lacombe after being turned away at Alberta Hospital.
And the family says in a recent $753,000 lawsuit against the province that it was the third time she was refused admittance at a psychiatric facility — despite her clear need for treatment — and sent away in a taxi.
In a statement of claim filed in court on Feb. 19, the daughter, parents and brother of Janette Peterson allege she was a diagnosed psychiatric patient who had been hospitalized for suicidal tendencies a number of times.
The family claims she took “definite and extreme steps” to attempt suicide in February 2014 — including renting a hotel room and hiring strangers to harm her — and say that and all of her treatment records were fully available on the net care system for medical professionals to review.
The family alleges that Peterson, who is diagnosed with schizotypal personality disorder, had twice tried to commit herself to the Royal Alexandra Hospital’s psychiatric unit for her own personal safety and she was denied admittance, provided with cab fare and told to go home.
According to the statement of claim, Peterson posed a clear and imminent threat to herself on Feb. 22, 2014, and her daughter and a friend took her to Alberta Hospital.
The family alleges Peterson clearly presented as suicidal and likely non-compliant with her medications and the admitting nurse assured them that she would be assessed.
However, instead of assessing or admitting Peterson, the family alleges that the hospital turned her away and called her a cab.
According to the statement of claim, Peterson checked herself in at the downtown Chateau Lacombe and jumped to her death from the seventh floor on Feb. 23, 2014.
The family alleges the death was the result of negligence by the doctors and staff at the two hospitals for failing to admit her, failing to properly monitor her and for failing to notify the family that she had been denied admission.
They claim the defendants, which include Alberta Health Services, Alberta Hospital, Royal Alexandra Hospital, the admitting nurse and several doctors and staff members, have a duty to both Peterson and the general public to admit those who are suffering from mental disorders and are likely to cause harm to themselves or others.
The statement of claim also alleges that the defendants have a duty to ensure that “bed pressure” does not result in patients in demonstrable need being turned away.
Statements of defence have not yet been filed.
Statements of claim and statements of defence contain allegations which have not been proven.

Julie Ali ·
Unfortunately the mentally ill have no voice in our society. Family members get burnt out and when there is no one advocating, the mentally ill patient can fall through the cracks in the mental health system which are very big.

If you are mentally ill you don't have insight and might also refuse treatment. The role of an advocate is therefore essential. When family are not present it is the responsibility of medical staff to advocate and work in the best interests of a patient who has no insight.

When the system fails, the mentally ill patient will have no one and incidents like this happen.

Or you have cases where the system gets fed up and puts a "Do not resuscitate" Order on the patient. This happened to my handicapped sister.

This sort of system wide failures with overburdened family taking care of mentally ill family members, a mental health system that lacks psychiatrists and failures to provide complex care plans for these patients results in tragic consequences that are fully preventable if resources, money and trained staff were allocated. It's curious to me that the death by doctor business in Alberta was provided with extra staff but mental health services don't seem to get a similar increase in funding.

In my opinion, there is no damn reason for any of this junk. The GOA needs to see mental health as health --in other words as a service that must be provided. If you can provide chemotherapy for cancer you can provide mental health beds and treatment for mental health issues of citizens.

The only reason why mental health is not a priority in Alberta is because of stigma, powerlessness of the afflicted and indifference. The mentally ill are discriminated against, can't speak for themselves and families are too burnt out or afraid to speak for them.

Families need to do their best to speak publicly about the stress of caring for mentally ill family members, the problems in accessing psychiatric services, the lack of mental health beds and system wide failures to provide required services.

This family is being very courageous and I applaud them for doing the lawsuit. It's unlikely to change the entrenched system of health bureaucrats at Alberta Health and AHS but at least this family is giving a voice to their harmed family member.
LikeReply1Feb 7, 2017 10:36pm
Darren Thompson ·
Works at RankLogic
Having had a friend with serious depression issues and suicide incidents - it became clear with the hospitals that if you were deemed not a threat to others - then you were released because there was such a huge demand for the bed and resources you were taking up. On a side note - criticizing the family is very low class guys - until you have personally dealt with some who is suicidal - you have no idea how difficult and messed up it is to be the people dealing with them. I always though suicide was an excuse until I had someone that I cared about struggling with it.
Chris Blair
Hey Darren, Let's stick to the facts of the article and not make snide assumptions about other people's experiences with such a delicate subject.
LikeReply1Feb 26, 2016 11:22pm
Darren Thompson ·
Works at RankLogic
Chris Blair what are you talking about Chris - I was talking about the article and the comments on here criticizing the family of the women who died - what are you talking about ?
LikeReply2Feb 26, 2016 11:39pm
Jacquie Dziwenko
Chris Blair, I'm sorry, but where is Darren Thompson's "snide assumptions" in his comment? Criticising the family is in bad form....many families have tried to help and get help for their family member or friend, its not their fault that the psychiatric care centres sometimes let people fall through the cracks. The onus is on the health care professional to provide this help...if hospitals are turning people away when they are obviously unwell...whether with family present or not....that is a huge problem and should not be happening.
UnlikeReply1Feb 27, 2016 10:43am
Julie Ali ·
Jacquie Dziwenko Thank you. Famlies with mentally ill family members beg for help. One doctor at the Grey Nuns hospital indicated that there were no beds in the inn. What the heck? She told our family to call the MLAs.
If you have a critically ill patient with a heart attack they make room for you at the hospital. But if you have a mentally ill patient you are disposable. The doctors at the Grey Nuns Hospital were writing -Do not resuscitate on my sister's files for years. Why? I guess she was not of value. They would never try this junk on a "normal" citizen but for the disabled citizen--it is simply accepted. As is the lack of mental health services.
LikeReply1 min
Helen Loraas Harding ·
Sadly this happens too often- being sent away. It is like roulette and I bet overworked staff. My niece worked in oncology as head nurse. She was depressed and suicidal. Under treatment but still put on a happy face until she committed suicide at home. What could have saved her when her medical staff couldn't get all the dots connected?
Julie Ali ·
If you are lucky you have a psychiatrist with hospital privileges who might be able to get you in.
If you are unlucky you just don't have much luck.
It's a matter of who has some way in and most of the folks don't know how to get help.
I can tell you how to get help.
Write publicly about the problem.
Go to media.
Ask for help everywhere.
And make sure that the politicians are getting the message.
The only way to get help is to become an "emerging issue" for the government of Alberta.
That is the only way folks.
Sad but true.
LikeReply5 mins
Carole Carnahan ·
Yup, blame the hospital, why didn't they(family) stick around to make sure she was admitted...I mean they must have left her, as the hospital supposidly got her a cab
Julie Ali ·
If you are burnt out from repeated crises you would understand why this sort of cycling through emergency becomes intolerable.
If you don't understand don't bother to give your ill informed opinion.
LikeReply4 mins
Chris Blair
The family couldn't wait around to ensure their suicidal family member was admitted to care and assessed correctly? I never would've left someone in that state of mind in a waiting room. RIP.
LikeReply4Feb 26, 2016 5:33pm
Julie Ali ·
If you have not got a family member with mental illness you will not understand the level of burnout experienced by families
It is an ongoing struggle. This family should not be blamed for leaving a family member at the emergency.

They are to be commended for sticking with the horror of our mental health system and helping their family member as much as they did.
Do you know anything about the hell experienced by the mentally ill and their families?If you don't then don't talk to us about the system and how to access help that is not there.
LikeReply8 mins
Jacquie Dziwenko
I was approached by Alberta Child Services to provide a place for the daughter/granddaughter of my closest friend in a "crisis" situation for a "short period of time" that they couldn't determine. This young lady (14 years old) had to be removed from her home due to severe psychiatric/psychological issues that made her a danger to herself and others as well as animals. I declined to take her because of the threat she posed to my animals as well as myself. She clearly belonged in the hospital. My converstion with ACS was over an hour long with me telling them that the place for someone that was not only suicidal but was also highly dangerous to animals and people was in the hospital and not removed from a "safe" environment and put into mine because they felt that because she liked and trusted me therefore I could help her and that she would stabilize. It could not be guaranteed (by the worker) that this girl would not harm me, my animals or another person that lived in the residence which was a male. The young lady had a history of accusing males with sexual abuse and rape. I mentioned a male lived in the residence and could she guarantee that he would not become involved in a situation with police regarding false accusations from an obviously mentally ill person, nor could she guarantee that she wouldn't attempt or succeed in taking her own life. Social worker said no, she couldn't. ??? What the hell is that? It was the weekend and the social worker from ACS was in a hurry to get out of the office (they closed at 4 and it was already 5:30 when she called). Without a doubt she belonged in a hospital, under very close supervision. I also let her know that it was her responsibility to find the proper care in this crisis situation and not hand off the responsibility of her job to me or anyone else especially when we would be put in a potentially dangerous or legal situation. I was told by ACS that the guardians could take her for an assessment at the U of A Psychiatric Centre the following week and that all should be fine because she trusted me. As difficult as it was to turn my friends' daughter/granddaughter away...I had no choice. She was left with other people that were obviously unaware of the potential danger to them. (This information was not forthcoming from the social worker...I asked the right questions because I knew what was going on with her...and it was terrible).

The family took her to the U of A Psychiatric Centre the next Monday where she was assessed and categorized as a "critical emergency" and was booked in for attention at that level. The appointment for that was 2 weeks down the road. "Critical emergency", danger to herself and others and they're told to bring her back in 2 weeks!! Well they did that...and nothing was done for this girl. She ended up living on the street, finding a boyfriend whose family took her in, getting pregnant, and delivering a 1.5 baby approx. a year later. The baby remained in NICU for 3 months in order to get her up to a weight safe enough to go home which thankfully, the baby made it. Hospital staff were not sure the little one would survive as her organs were'nt fully developed, etc. Thankfully, the baby was apprehended in the hospital at birth and eventually placed in the care of her grandmother.

I'm sorry, I know the story is long...my points are:

1. This young lady's family did EVERYTHING they could to get her into hospital; a safe environment where she would receive the care she needed. They could not. They called CWS themselves in order to get help...CWS passed her off to someone else that were not told of her behaviors and imbalance and the subsequent danger of her being in their home.
2. The U of A hospital did not do the right things, in my opinion, to ensure her safety or the safety of others even though she was assessed as "emergency critical". She never did get any hospitalized care but was referred to a "counsellor" if you can imagine.

This child was 14 years old. She was sick. No help whatsoever was given to her or her family. Both ACS and the hospital were highly negligent in following up and taking appropriate action in this situation. To this day, I believe that the young lady is living out on the street somewhere...still a threat to herself and others. This is not right for her, this is not right for the rest of society. Why is this kind of thing happening in Edmonton...in Alberta...or in Canada...we're a civilized society. It's absolutely heartbreaking. How many others are not being given the help they need?
UnlikeReply6Feb 27, 2016 10:37amEdited

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