Public Policy

A presentation made by Tom Shand, Executive Director of CMHA Alberta, to the Standing Committee on Health on February 4, 2009.

Good morning Mr. Horne and ladies and gentleman of the Standing Committee on Health:

My name is Tom Shand and I am Executive Director of the Alberta Division of the Canadian Mental Health Association.

Thank you for providing this opportunity to speak with you today on a very important subject – the sharing of one’s personal information, as reflected in the proposed Bill 52 – the Health Information Amendment Act, 2008.

I am here today speaking not only on behalf of the Canadian Mental Health Association, but more importantly in the interests of the hundreds of thousands of Albertans currently living with mental illness or who will experience mental illness at some point in their lives. Although it is not the type of illness for which it is possible to obtain an exact number as to how many people fall within this description at any point in time, it is conservatively estimated that it includes at least one in five Canadians, which would equate to more than 600,000 people living in Alberta.

Although many of my remarks will apply to others as well, I will focus on putting forward a perspective reflecting what we know of the needs and concerns of many of those living with mental illness.

As I expect is likely the case with the majority of those presenting to you, I am not here to suggest that electronic record keeping does not have value. Clearly, we recognize that Albertans living with mental illness also require physicians and other caregivers to have accurate, relevant information available to them on a timely basis when seeking to make a diagnosis or to effect treatment.

However, there must clearly be a balance between a person’s right to privacy and the need for sharing of their personal information for medical reasons. We believe that Bill 52 has exceeded that balance at the expense of the individual’s right to privacy. Over the next few minutes, I will outline our greatest concerns as well as what we believe could be the consequences should this Bill be passed in its present state.

We have not sought to analyse the wording of each clause or to suggest alternative wording. Rather, I will try to express our concerns in the most clear-cut manner and leave it to your resources and expertise to determine if a given clause should be removed or revised.

As is no doubt the case for most of us in this room, sharing personal information relating to one’s health is a very private matter. It is not done lightly and most often with only very few people, including one’s physician or medical team. With this group, there is a trust that the information shared will be kept in confidence and only given out on a need-to-know basis to a very restricted circle. Further, it is expected that, should requests come from outside that circle, the individual should have the right to deny permission for access to information not absolutely required or, at the very least, be provided knowledge of what disclosures were made and to whom.

For many, even this very limited sharing of information is not comfortable and any breach of this trust or confidentiality is not soon forgotten. Even if nothing untoward results as a result of this sharing of information, there is a grave risk that the trusting relationship with the caregiver may be damaged perhaps irreparably.

And that is the situation for most people. But for a person who has been treated for mental illness, the potential downside is far, far greater.

For starters, the comfort level for sharing information about their mental illness, either past or present, is much less. Saying that you were treated for depression three years ago is far removed from saying you broke your leg skiing. It is not unusual for a patient to fear stigma and potential for discrimination resulting from disclosure of treatment for a mental disorder for the rest of their lives, even if the person is in perfect health now.

Unfortunately, the risk of stigma and discrimination relating to mental illness is real – in the workplace, at school, amongst one’s family and friends, with housing, insurance – and the list goes on. There is good reason that the Mental Health Commission of Canada has made reducing stigma relating to mental illness a top priority and that organizations such as the CMHA are continually fighting that same battle. Reducing stigma and discrimination is a very real and very important step in assisting people living with mental illness to be able to effectively seek treatment and achieve optimal recovery.

It is difficult enough to discuss very personal mental health issues, either your own or those of family members, within your small circle. It is an entirely different matter knowing that those records can be accessed by 26,000 or more people. And worse yet, that your physician may be forced to divulge information beyond absolute need or that there is not even complete control as to who will be able to access those records down the road. And worse again, that you will be helpless to control the process or even discover who is accessing those records.

Clearly those risks, or even the possibility or perception of that lost privacy, are not warranted or justified. Even if there are no abuses or system breakdowns that cause harm, the realization that such a possibility exists will be harmful – and even more so for those amongst us who have increased sensitivity about others negating their right to privacy.

For many people, particularly those needing treatment for mental illness, the result will be that they will not divulge certain medically relevant information to their caregivers or they will not seek treatment at all. This would be catastrophic and unto itself reason enough to change the parameters of this bill.

To help alleviate these concerns for unreasonable invasions of privacy, we would recommend the following:

• Put in place appropriate safeguards such that information shared is limited to that information absolutely required and by those with an absolute need to know in the best interests of care of that patient.
• That physicians and caregivers not be forced to comply with providing information, beyond what they deem as required.
• That the ability to mask unneeded information be maintained.
• That use of information continue to be seen as disclosures and that the patient maintains the right to review such disclosures.
• That individuals may appeal what is on their record and how it is used.
• That records be not sold or otherwise made available to outside sources, e.g. employers, employee benefit programs, insurers, justice system, law enforcement, etc., without the expressed consent of the individual or by subpoena or other form of legal review.
• That the Bill include enough restrictions regarding uses and users to ensure that necessary safeguards are in place and that such restrictions are not trusted to the regulations which are too easy to amend, at a later date, without adequate discussion or consultation.
• That extensive public consultation take place before consideration be given to a Bill that has the potential to seriously jeopardize one’s privacy.
• That Netscape or any other means of gathering and disseminating electronic patient records be thoroughly examined on an ongoing basis for potential flaws or leaks.

In essence, this amendment has taken something that is essentially a good idea and wrecked it.

I do not know whether this amendment is salvageable or if it’s back to square one, but I am positive that this Bill, if left as proposed, is bad for Albertans and particularly those many Albertans living with a mental illness.

Thank for your consideration.

Respectfully submitted,

Tom Shand

A presentation made by David Copus, Chair of CMHA Alberta, appearing before the Minister’s Advisory Committee on Health on October 19, 2009.

Dear Mr. Horne, Ms. Prowse and Members of the Minister’s Advisory Committee on Health:

As Chair of the Alberta Division of the Canadian Mental Health Association, I am pleased to present to you today on behalf of not only our provincial office but our eight regional offices across Alberta, our Centre for Suicide Prevention and, most importantly, on behalf of the many thousands of Albertans living with mental illness.

I am joined by Brenda Wentzell, who is a CMHA Board member with both the Alberta Division and Edmonton Region, and sits on their respective Social Policy Committees, as well as our Division Executive Director, Tom Shand. I will make a brief presentation, and Brenda and Tom will join me to help answer your questions.

Firstly, I would like to thank you for the opportunity to provide input into this process. Although the time frame given did not allow us to explore the subject areas in any great depth, the outline provided an excellent framework from which to build our commentary.

We have focused our presentation on the principles for renewed health care legislation that the committee has shared. I will not attempt to comment on all the points provided, but will focus on discussion on those directions of most importance from a perspective of mental health and mental illness.

With regard to discussion of the whole, I think it is fair to say that the guiding principles and themes suggested appear to us to be progressive and positive, but it is difficult to anticipate how they may ultimately be interpreted or what nuances may be attached that are not immediately obvious. Therefore, we have chosen at this time to not give overall endorsement, but rather to provide input as to those values that we hold dear. We see this as one step in a process and we look forward to reviewing your recommendations to the Minister and to further input into whatever changes will be forthcoming in future health-related legislation.

Basic Principles

A perfect example of potentially misleading nuances can be seen in the two starting principles with which you were working:

We are supportive of the first, being “the public health system will serve the interests of all Albertans regardless of their ability to pay” – although this might be better stated as “Alberta’s publicly funded health care system.”

We are less certain of what is meant by “access to publicly funded health care will be fair and effective” as the nuances of the terms “fair” and “effective” are not known.

The explanation that this means “publicly funded” and “accessible” is reassuring, but adding in “patient-centred” is an entirely different point not encompassed in those two principles. While we are strongly in favour of patient-centred” care, we are also aware that it can be interpreted in many ways (for example, when is it meant to include family and when is it only patient?). It has been our experience that the term ”patient-centred care” is commonly presented as a value in today’s health care principles but, in practice, it is often largely in name only.

I cite these examples not to attempt to wordsmith the text provided, but rather to point out the complexity of the task at hand, both for yourselves and for those of us asked to comment.

I would like now to speak to the seven principles provided. In short, all seven are solid and important to our health care system and to the legislation supporting it.

In looking at each from a mental health and illness perspective, we observe the following:

1. Comprehensive, universal, portable, accessible and publicly funded

These are all laudable goals but far from what those living with mental illness experience today in Alberta.

Care of mental illness today in Alberta bears little resemblance to a system embracing those principles. While the health system does a good job of serving the needs of most of those institutionalized with severe mental illness, it has nowhere near the capacity or ability to provide even adequate support or treatment for the vast majority of those thousands of Albertans living, and trying to cope with and recover from, mental illness.

We receive calls daily from individuals with mental illness, or their family members, who are frustrated because they cannot get access to the treatment that they need in order to get better. Even those fortunate enough to be able to see a psychiatrist often find that their visit involves only examination of the effectiveness of medication, while not providing them therapy. And for many, they do not have a health care plan to pay for private therapy or funds to pay for it on their own.

Waiting lists for existing resources are long, leaving people’s mental health in jeopardy. And most community resources, such as those supplied by CMHA, are often designed to provide support services, not direct care.

Therefore, while the principles may be, and need to be, in place to support comprehensive, accessible and publicly-funded care, this is not the reality for many Albertans when it comes to timely and effective treatment of mental illness.

2. Quality, appropriateness and efficiency

These are also solid goals, but again not consistently in place, at present, from one program or area to another. There are substantial opportunities for improvement in this area as the system moves towards increased consideration and application of the entire continuum of services and supports, both in the AHS system and in the community.

3. Focus on wellness and public health

This, too, is a laudable goal. As is reflected in our name, the Canadian Mental Health Association believes strongly in the importance of building mental health and not just treating mental illness.

Too often, mental health is only a term that is used as a euphemism for mental illness. Promotion of mental health and prevention of mental illness are both important goals, if we are to make progress on reducing the amount and impact of mental illness.

Mental health is not an absence of mental illness. It should be understood that people living with mental illness can be in good mental health, and conversely, that people without a diagnosed mental illness may be in poor mental health. Mental illness is common and should not be something to be embarrassed about, but mental health affects us all.

It has also been shown that as high as the cost of mental illness is to our health care system and our society, the lack of mental wellness, as expressed in limiting one’s ability to flourish, is an even great cost.

For these reasons, we strongly endorse the focus on wellness and public health. It is also an area that organizations like AHS, with its focus on acute-care treatment, does not generally do well. Therefore, we would suggest that governments look to invest more extensively with other partners to help deliver wellness and promote good health.

4. Patient-centred care across a continuum of health services

This principle too is consistent with our core values, although it may be advisable to separate this into two sections, as providing care through a continuum of health services is significant enough to be regarded as a principle unto itself. That principle, if extended fully, looks not only through the lifetime of patients but also at the integrated planning and delivery of services through various service providers, including those provided by the NGO sector and its community-based service delivery programs.

As was noted earlier, the role of family or one’s personal support network must also be taken into consideration.

5. Protective of infirm and vulnerable Albertans

This principle certainly applies directly to varying degrees to those living with mental illness. For instance, in considering privacy rules for patient information, improper sharing of information relating to a person’s mental illness can have dire consequences for that individual in terms of potential discrimination or fears of such.

We should also emphasize that people’s status can change as to their capacity. CMHA advocates strongly that the principle of recovery be a major goal of the health care system and our society, particularly when it relates to people with a mental illness. The role of helping people to enhance their mental health and to help them gain more control of their lives is a philosophy that we would like to see applied not only across the health care system, but also throughout our public services, in areas such as justice, housing, employment, education and social services.

6. Accessibility regardless of ability to pay

CMHA strongly endorses this principle. Given that mental illness can impair one’s ability to work and make a decent living, this is fundamentally important to those we serve. Increased accessibility also enhances recovery, thereby decreasing long-term costs of treatment and social services, while improving people’s quality of life and potentially their income.

7. Best care according to best evidence

This, too, appears to be two principles rolled into one. Care according to best evidence relates to supporting and making use of research. The right care, at the right place at the right time and by the right provider, relates more to quality of care and accessibility, which has already been discussed. However, we should not lose the importance of doing and using good research. Certainly in mental health, research is far behind that done in most areas of physical illness and much more is currently unknown than known in this science. Advances in research, including new medications, are making a significant difference in the treatment of those with mental illness and it must continue to advance.

Themes

The directions suggested in this section are essentially sound, so we will expand upon certain areas, again relative to a mental health and illness perspective.

1. Optimizing capacity and competencies of all health service providers

Making optimal use of resources is certainly wise and an area of potential improvement. However, in doing so, don’t restrict consideration to only AHS employees. While there is certainly significant room for improvement within that workforce, there are many health care providers outside of that formal system, including the NGO sector and in home environments.

While community-based care is dealt with somewhat under the theme of access to service, it is important to recognize the potential capacity of the caregivers who can provide that care, as they may require additional training or supports in order to optimize their effectiveness and meet the standards required.

2. Access to care and services, in the right setting

Full consideration of NGO and home-based community services needs to be recognized and supported, not just as a fallback position when bed reductions are being considered in our institutions, but their needs and capacity to serve must be built into the overall planning process if they are to be counted upon and be effective.

There are thousands of people providing supports and services for friends and loved ones from their homes. If this were properly recognized and supported, this network of home support would expand, thereby relieving pressure on institutions and more formal care. Much of the bed blocking that currently prevents optimal use of beds in all levels of facilities could be alleviated with stronger support for home-based care. This certainly is applicable, but by no means exclusive to, people living with mental illness.

We would also suggest that the concept of care “closer to home” could be built into this theme. This is an important consideration both for the patient and the family. This is particularly true of those with mental illness for whom family and community supports are important factors to successful recovery.

3. Integrating care across the full continuum of health services

This is important and can be exemplified by the recent merging of mental health and addiction. Often those with concurrent disorders were rejected service at one because of the existence of the other. The philosophy of every door is the right door is important because people are complex and not one-dimensional.

Further, it is important to coordinate services beyond just the health care system. For instance, Senator Kirby of the Mental Health Commission of Canada has said that about two-thirds of the costs (and needs) of mental health are outside of health care, including housing, justice, employment, education, families and other social services. This means that whatever changes are proposed to health care legislation need to be coordinated with changes in other areas of public policy.

This is particularly important in light of the current moves towards reducing the reliance on acute care beds and moving care into the community. Appropriate community supports are the only way for such a transition to be successful. Not only will community health services need to be expanded, but also, supports in housing, employment and social services will be needed. Otherwise, any financial savings in health care will be costs borne by other parts of the public system such as policing and justice.

4. Make decisions based on best available evidence and technology

As mentioned earlier, research in some areas, such as mental health, is clearly lagging behind other areas of care and much could be gained by improvements in this area. Access to research worldwide is certainly of benefit but, by having the research done in Alberta, attracts top minds to our province, thereby stimulating thought, attracting other specialists and forward thinking people and creating centres of excellence that have great overall benefit.

This area may also be where access to best possible medication is dealt with, an area of great concern and interest to those living with mental illness. Too often, leading-edge new medications are being held up by cost considerations, if they don’t show an ability for improved treatment. What is often not weighted heavily enough is that the newer medication has far fewer or less severe side-effects which not only increase its value in terms of quality of life for those taking it, but also increase the likelihood that people will stay on their medications. The potential consequences of people with mental illness going off their meds are very costly, both in terms of their medical setback and increased long-term cost of support and treatment, but may also have an impact on safety to the individual and others.

5. Support for change

We are also in support of this point, as people need to have reason to do what is best for themselves and for society as a whole. For instance, by only providing people access to certain drugs when hospitalized may be reason enough for a person to seek hospitalization. Another sad example from a mental health perspective is those patients who will self-harm or claim to have formed a plan for suicide in order to be accepted for treatment. Addressing deteriorating health as a criteria for committed treatment through Bill 31 is an excellent example of legislation that should positively change patterns of behaviour for some people. It is also an example of how the system not needs to ensure that there is enough capacity for treatment of these individuals.

In summary, we commend the Health and Wellness Minister for his efforts to ensure that our legislation allows the government and health care system to operate more effectively. We thank you for the opportunity to provide input into the principles guiding these changes and hope that the points that we have made will add to the quality and comprehensiveness of this work, particularly as it may benefit those Albertans living with mental illness.

Presented by: David Copus, Chair
Canadian Mental Health Association, Alberta Division
October 19, 2009

An addendum report submitted by Tom Shand, Executive Director of CMHA Alberta, following up David Copus’ October 29, 2009 presentation before the Minister’s Advisory Committee on Health.

Recommendations

As per the request of the Committee, I am pleased to submit the following specific recommendations on how the system can better meet the needs of Albertans, from a mental health perspective:

1. Increase Accessibility

• Put in place system navigators (case managers) to help people with mental illness and their families get better access to available resources. The needs in this regard extend beyond the formal mental health system to community services, other ministries and to social determinants of health, which are so critical to recovery. These include housing, employment, counselling, social services, education, justice, and seniors and community supports.

• Develop an online mental health resource centre that provides a reliable, extensive source of information. At present, this is fragmented and not reliable. Often those with mental illness or their families wish to access information on their own, without fear of stigma. This can also include online self-help programs that have proven to be cost-effective in reaching large numbers of people, not only assisting them initially, but also leading them to seek treatment when needed and to improve results of such treatment. This may be done in conjunction with phone-help programs. Such a centre could also be linked with the Centre for Suicide Prevention, in Calgary.

• Put in place more mental health nurses, psychologists or social workers in hospital ERs to facilitate screening and triage. This will assist patients in receiving treatment, law enforcement officers and others will have less time wasted, and it will ease the burden on ER staff. In larger urban hospitals, a designated mental health ER treatment area would assist in this regard. These same individuals or the navigators described above need to support people leaving the hospital in connecting to appropriate resources, including their own support systems, such as their families. Otherwise, the cycle of ER visits just continues.

• Consider funding plan for psychologists for counselling of those with mental illness. Initial, timely counselling has been proven to reduce long-term illness and enhance success of recovery. At present, treatment is only accessed by those with medical plan coverage or higher incomes.

2. Enhance community supports

• Provide funding for and facilitate supportive housing initiatives from the NGO, private and government sectors.

• Expand Assertive Community Treatments (ACT or similar) for mental health patients to allow supports and treatment required to enable institutional decentralization.

• Continue to build supports through such programs as mental health diversion, AISH, Alberta Pharma Strategy and others to support recovery and quality of life for those living with mental illness.

3. Increase capacity

• Overall capacity for mental health treatment, including beds, must increase, using both institutional and community resources.

• Help improve sustainability of NGO sector to allow it to expand to absorb a greater part of the burden of care. At present, contracts are largely not competitive with government or private sectors. This needs to be more equitable.

• Work with community and NGOs to assess their capacity and potential then engage them in joint planning for service delivery. Shift more non-clinical supports to NGO sector, in partnership with government and private sectors, e.g. mental health promotion and prevention, and stigma reduction. Programs can be better delivered at less cost.

4. Increase research

Collaborate with universities, private sector and NGOs to increase focus on mental health research in Alberta – both clinical and community/systemic research. There is a great dearth of information and knowledge, even of basic statistics relating to the numbers of people receiving treatment in Alberta. The research is not only much needed, but will attract quality people in those fields to Alberta, thereby helping us to move to the cutting edge of treatment and systems, as well as research.

5. Advocacy

Currently, only the estimated 9,000 patients certified under the Mental Health Act have their advocacy needs being handled, through the Patient Advocate office. This leaves about 300,000 Albertans, having a diagnosable mental illness in a given year, without somebody to hear and act on their concerns.

Groups such as CMHA, the Alberta Mental Health Self Help Network (Fellowship) and the Alberta Alliance on Mental Illness and Mental Health do represent some of their systemic advocacy needs, but do not have the resources to help with their individual needs.

We would recommend two possible solutions.

• To expand the mandate and funding of the Mental Health Patient Advocate office to include all Albertans living with mental illness.

• To establish a provincial Mental Health Council that has the ability to influence all areas and ministries of government with regard to mental health and to advocate on behalf of those with mental illness. Speaking to one’s MLA or staff at Health and Wellness or Alberta Health Services does not have the same impact as would such a council. This is particularly important for mental health, given that support and recovery of those living with mental illness extend far beyond clinical health concerns, and governments are not set up to effectively deal with such encompassing issues.

Thank you for your consideration of these recommendations. We would welcome an opportunity to discuss them further.

Respectfully submitted,

Tom Shand
Executive Director
Alberta Division
Canadian Mental Health Association

A presentation made by Tom Shand, Executive Director of CMHA Alberta, at the Giving Voice: Advocacy and Mental Health forum held in Edmonton on November 9, 2009.

Good morning,

My name is Tom Shand. It is my pleasure to present to you today as Executive Director of the Alberta Division of the Canadian Mental Health Association and as Chair of the Alberta Alliance on Mental Illness and Mental Health.

In a few moments, I will speak to the role that these two organizations currently have in representing the interests of those living with mental illness in Alberta and the apparent voids that exist in that regard for the majority of those individuals.

In so doing, I am the first to recognize that I am a mental health novice relative to others you will hear from today and probably most of you who have come to gain insight from their respective wisdom and viewpoints.

That being said, I don’t think it takes a lifetime in the system to recognize the systematic and societal shortfalls that now exist relating to the unheard voices of many thousands of Albertans when it comes to concerns relating to their mental illness or that of family or friends. And there is an equal if not even greater void when it comes to speaking out for better mental health for those who do not have a diagnosed mental illness.

The mere fact that we don’t even know how many people in Alberta have experienced a mental illness in a given year should be a telltale sign that our health care system does not have a very good handle on this largely forgotten, long-standing pandemic.

To give you some idea of the scale of this issue, let’s use the commonly held estimate that one in 10 Canadians have a mental illness at any given time. In Alberta, that works out to about 350,000 people.

Of these, about 9,000 – or 2.5 per cent – are patients under the Mental Health Act, with their rights legislatively protected by the Mental Health Patient Advocate. I will not speak to advocacy for those individuals, as they will be well addressed in other presentations.

My remarks, and concerns, relate to the other 340,000 Albertans living with mental illness, and who speaks for them.

Who speaks for the person who discloses that he is being treated from depression and finds himself no longer eligible for promotion – or a soldier or police officer now stuck doing paperwork instead of being out in the field?

Who speaks for the family whose daughter needs therapy and can’t wait for their spot on the waiting list, nor do they have the funds for her to be treated privately?

Who speaks for the person in Grande Prairie who has to come to Edmonton for treatment at times when there are no psychiatrists there to help?

Who speaks for the person who loses his apartment because his illness has caused him to miss work that month and is too late with his rent?

Who speaks for the person whose personal health information has leaked out of the AHS system without her permission and is now being used against her?

Even in my small office at CMHA, I hear these types of complaints almost daily and have no ability or resources to help. And I know I am not the only call these individuals and/or their families have made in an effort to seek help. With each day, their frustrations grow. And with no help, their ability to cope with their illness, or to recover, diminishes.

Some will be heard because they will end up becoming eligible for support from the Advocate’s office as a result of having become a danger to themselves or others. Or, as per recent changes in the Mental Health Act, it can be demonstrated that their health is seriously deteriorating – or perhaps they presented themselves that way in their desperation to seek help. The cost to society is huge as these people become less productive and sometimes a burden. And the cost to their health and welfare is often beyond measure.

So who can help? In a perfect scenario, Alberta Health Services would work cooperatively with NGOs and across the spectrum of other departments and social agencies to provide much broader and comprehensive service as, and when, needed by these individuals. But resources are clearly not currently there, and never have been there, to properly address the needs of many of those people living with mental illness. Efforts are most often concentrated heavily on those few most severely ill who could pose a threat to themselves or others. Recovery for those with less severe symptoms seems a secondary consideration, especially when resources are tight.

And cross-ministerial programs are few and far between, although now beginning to emerge, as evidenced by homelessness initiatives and mental health diversion, which works cooperatively with the justice system.

Community organizations like CMHA do their best, with very limited funding, to provide support services, but come nowhere near meeting the demands for services such as supportive housing.

And the Alberta Alliance on Mental Illness and Mental Health, while constituted well – with 10 professional associations and community organizations to represent people with mental illness as a whole in fighting systemic or legislative issues – has no mandate or resources to assist individuals.

It is difficult enough for any person to fight for their rights or for needed services, but it is that much more difficult for many people living with mental illness, who have an uphill fight with the stigma surrounding their illness, the lack of resources dedicated to mental illness, the crossovers of their needs from one department to another, and often a lack of income or capacity to carry on any type of extended action, particularly one involving litigation.

So who can help those who fall through the cracks or are being treated unfairly?

There is no simple answer but it is clear that the present system is not working and a large number of people need help.

Addressing the need is a huge subject unto itself, and time is too short to go there right now, but I do have a couple of suggestions to help address the advocacy needs when people living with mental illness need to voice their individual concerns.

I would suggest that at a high level, there needs to be governmental action to set in place an empowered body, such as a Mental Health Council, that has the ability to cross departmental lines and address the needs of those living with mental illness, whether they be through the health care system, education, justice, housing, employment, social services or elsewhere.

I would further suggest that either the Patient Advocate’s office have its mandate and staffing expanded to go beyond those committed under the Mental Health Act, or establish another staffed office to do so.

And finally, more funding is needed of those organizations of the mentally ill to assist them in better speaking for themselves. Often there is now a call for a so-called consumer voice to sit on various committees but an inability to find people who could be effective in that role.

The solution lies with us. We must be vocal in raising the profile of mental illness and the need for improved mental health to a higher level, and we must be ensure that the hundreds of thousands of people living with mental illness in our province get the help they need and are able to be heard when their needs are not being met. It is the right thing to be doing to support those individuals with their recovery and also a wise investment for our province and our society.

Thank you for your attention to my remarks today, and I hope they left you with some food for thought.

I would also like to thank the organizers of this forum for putting this together and for giving me the privilege of presenting to you. This is a significant step forward, and I hope the start of a movement to a brighter day and a stronger voice for those living with mental illness in our province.

A presentation made by Tom Shand, Executive Director of CMHA Alberta, at the Chronic Offenders Conference in Edmonton on January 26, 2010.

Ladies and Gentlemen,

It is a pleasure to speak with you today and shed some light on mental illness and the impact it has on our society.

There is no way in the next 20 minutes or so to deliver a comprehensive Mental Health 101 lecture, nor is it my intent to try and speak to all of the many challenges mental illness presents to your line of work. I am confident that, through the two days here, you will hear many interesting perspectives in that regard.

My small part in the program will be to try and describe the parameters of the mental health problem in Canada and to touch on some of the approaches being taken to improve the situation, particularly here in Alberta.

In so doing, I should disclose that my remarks are not from a clinical or other health professional perspective, but rather as a person who advocates for those living with mental illness, both as Executive Director of the Alberta Division of the Canadian Mental Health Association, and as Chair of the Alberta Alliance on Mental Illness and Mental Health. Over the past three-and-a-half years, through these positions, I have had the opportunity for exposure to the plight of those living with mental illness and also to participate in trying to come up with what I think are best described as common sense solutions – although what seems like common sense to many of us now has certainly not often been the case in the rather sad history of treatment of mentally ill people in our country.

In my short time on this watch, there has been tremendous progress in advancing the mental health agenda, including the formation of the Mental Health Commission of Canada, which you will hear more about later. And, in Alberta, no less significant have been the steps forward in working cooperatively with the courts and law enforcement.

To paraphrase Commission Chair Michael Kirby, “Canada’s streets and prisons have become the asylums of the 21st century.”

This is not a statement to be taken lightly, and not so much a condemnation of our justice system, but rather a reflection of many years of misinformation, poor directions and inadequate resources dedicated to dealing with mental illness.

So why is this – who is to blame and what can be done? In short, there is no simple solution or easy answers. It would be easy to blame the healthcare system, but that, too, would be too easy and largely miss the mark.

Those working in the mental health field do tremendous work with relatively little resources. They need more support and to be funded equitably to physical illnesses.

But what has been even more underestimated and largely neglected, is that most of the work needing to be done pertaining to mental illness does not even fall within the health portfolio. It has been estimated that only 30 per cent of the costs of mental health are actually within health, and the balance are largely in what we have referred to as the social determinants of health, including: justice, employment, housing, children and family services, seniors, and the list goes on.

Simply put, our governments are not structured well to address such multi-faceted problems. Another enormous barrier is the stigma relating to mental illness. People would rather not talk about it and basically have kept the problem in their proverbial closets.

We need to create strategies to cross departmental lines and also to address stigma.

Change is coming in that regard, only with the emergence of the Mental Health Commission of Canada, but it can be seen changing almost daily in the knowledge and attitudes of politicians and gradually in that of their constituents.

We see it in the emergence of such entities as the Canada Post Foundation, which has established mental health as its first priority; and we see it here today with professionals from many walks of life eager to learn more about how we can find solutions to this shared problem.

We can no longer ignore the implications of so pervasive a problem.

So how big is it? Well, for the sake of consistency, let me use Mental Health Commission statistics. In its most recent estimates, it has said that “this year alone more than seven million Canadians will experience a mental illness. That’s one in five people and about 700,000 Albertans.

It is further estimated, that one in two people will experience a mental health issue of some degree at least once in one’s lifetime.”

I’m not going to ask people to raise their hands if they have experienced a mental health problem, but I think you get the idea. The statistics can be debated and change depending on what is encompassed in the classification, but there is no denying that the issue is huge and also costly not only for individuals and their families but also our economy.

Again to use Commission statistics, the cost of mental illness to the Canadian economy is estimated at $33 billion per year or roughly a thousand dollars for every Canadian. And this does not reflect the loss of people’s ability to flourish when, while not having mental illness, they are not in good mental health.

So who are these people? Some are receiving treatment in hospitals or mental health facilities but, in Alberta, this only accounts for about 9,000 people per year – who are classified as “formal patients” requiring treatment under the Mental Health Act. This is only a little more than one per cent of those estimated to have an incident of mental illness during the course of a year.

In addition, it is also easy to identify the homeless, of whom perhaps 80 per cent live with a mental illness and most also deal with addiction issues. And addictions are not restricted to the homeless and destitute. A recent estimate of those identified as living with a diagnosed mental illness in either Calgary or Edmonton, showed that one-third also had a substance abuse problem.

To a large extent, historically our mental health systems were set up to keep the public safe from that small number of people with severe mental illness, and to keep them safe from themselves. In fact, it was just recently in Alberta that the criteria for admitting a patient for formal treatment was expanded from the danger criteria, which you hear regularly in shows like Law and Order, to include deterioration of one’s health or mental health.

In other words, the greatest priority was protection. Treatment would then be given, but recovery was pretty much not considered.

Accessibility to treatment and hope for recovery are essential if we are to help people to live the best possible quality of life and to contribute positively to our society and life in our communities.

Fortunately, advances are happening as we speak. And I would be remiss to not point out some of the very positive examples of how that is happening – right here in Alberta.

Homelessness is being addressed with a 10-year plan to eliminate homelessness in Alberta – a plan being driven by the major municipalities, including Mayor Mandel of Edmonton. Housing First is also being adopted as a philosophy of choice, where the first priority is to get people off the streets and into safe, secure accommodation, without which there is little realistic chance of effective treatment.

Individuals are being dealt with more holistically, particularly recognizing that mental illness and addictions are often co-existing and both need to be treated. In Alberta, Alberta Health Services has just completed a draft strategy for this combined emphasis on addiction and mental illness. In the past, it has not been unusual for those with addictions to be refused mental health treatment until their addictions had been dealt with and visa versa. Alberta was not the first province to go in this direction, and hopefully the days of people being refused treatment because they don’t fit in the box of those providing the treatment will soon be in the past across Canada.

Community Treatment Orders are now in effect in Alberta, as they are in some other provinces. This allows some individuals to be treated in the community instead of in formal facilities. The intent here is to not only improve the quality of life for the individuals but to also put an increased onus on improving support services and accessibility to treatment in our communities. Again, the emphasis is on treatment, as early as possible, to enhance the potential for recovery.

And, as you will hear more about from other speakers, there is tremendous cooperation taking place between health, police and justice to try and keep people living with mental illness out of jail and into treatment. Two major programs that serve this function in Alberta are the PACT (Police and Crisis Teams) and the Diversion programs. PACT sends mental health workers out with police on certain crisis calls, in an effort to treat the problem, rather than sending mentally ill people to jail for minor offences or to emergency wards, where the waiting times for both the individual and the police are often ridiculously long. It has been a great success in Edmonton and is now being expanded.

The diversion program is equally important, as it allows individuals living with mental illness to obtain treatment rather than spend time in jail. It was piloted in Calgary, Lethbridge and St. Paul and is now being expanded to other locations in Alberta, including Edmonton.

We will also soon see treatment of those with mental illness in Alberta prisons being taken over by Alberta Health Services, which should improve the continuity of care for individuals not only within the institutions, but also as they move in and out from them. It is also hoped that, with this improvement in the consistency of treatment, more people will be successful in recovery and less likely to reoffend.

It should also be noted that without proper supports and treatment, people with mental illness are also far more likely to become victims of crime.

These programs are tremendous not only for the work that they do, but because they reflect a better understanding of the full dimensions of mental illness and the ability of our systems to work together to better serve the needs of our society.

The incidence of mental illness in Canada has already reached pandemic proportions and an incredible amount of work is left to be done before mental illness is treated on a par with physical diseases. However, I am confident that we have turned a corner and are moving in the right directions to increase both understanding and treatment of mental illness both here in Alberta and across Canada.

Thank you for your attention and for your efforts in improving our society, particularly for those individuals living with mental illness. I hope these few minutes have been of interest to you, and I hope you enjoy the rest of the conference.

A presentation made by Tom Shand, Executive Director of CMHA Alberta, on March 30, 2010.

There are many issues particular to employment of those who live with, or experience, mental illness. Please note that this is not a comprehensive listing or formal study but rather an outline to provide a sense for this area.

1. Mental Illness Not Homogenous

It should be noted that mental illness comes in many forms, with many different types of diseases and disorders that vary in severity and also vary from person to person. Therefore, the following statements do not pertain to all individuals who live with or have experienced a mental illness. A person’s ability to perform well in the work place certainly varies according to many factors, one of which is the nature and severity of the mental illness.

2. Mental Health vs. Mental Illness

It is also important to recognize that mental illness and mental health are not one and the same. There are people with mental illness who, with supports and treatment, live in a good state of mental health. There are also people without a diagnosed mental illness who would not be considered to be in a good state of mental health. It must be said that good mental health is not equivalent to the absence of mental illness. In some definitions, it can be said that a person is in good mental health if they have “the ability to thrive.” Both the presence of mental illness and a lack of good mental health are factors in one’s ability to perform in a given position.

3. Very Substantial Number of People

With one in five Canadians experiencing a diagnosed mental illness in their lifetimes, this has a huge impact on our society, including the workforce.

4. Cost to Employers

Between 75 and 79 per cent of short and long term disability claims relate to mental illness in Canada. The cost to the Canadian Economy due to mental illness in the workplace is estimated at $33 billion. The fastest growing category of disability to Canadian employers is depression. This makes this a very serious issue to employers and more measures need to be taken to support those in the workplace experiencing mental illness.

5. Working with Serious Mental Illness

The percentage of people with serious mental illness who are unemployed is between 70 to 90 per cent but the percentage of those with serious mental illness who want to work is 80 per cent. Great potential exists to close this gap for the good of the individuals and the employers.

6. Part-Time Work

For many people with serious mental illness, the stress of working full time is too much of a burden. It may work in the short term but be counter productive over a longer time. Yet, they may be very effective employees if able to work part time. Full time work should not be viewed as optimal for all employees.

7. AISH

Programs like AISH need to be more progressive in encouraging individuals with mental illness to earn more income than at present without losing AISH support. While improving in this regard in recent years, it still remains a concern and reduces the
incentive to seek employment for those able to work on a less than full time basis.

8. Privacy of Information

There still remain circumstances where a person who has been part of a police call to deal with a mental health incident has that on record and it then shows up in employment record checks. Some improvements have been made in this recently but it remains a barrier to the person seeking employment for many positions. It may also influence the person or their family from seeking treatment for fear of such
future implications.

9. Employer and Employee Education

Commonly held misconceptions based on a lack of knowledge about mental illness often cause employers and fellow employees to not know how to deal with a person who has been identified to have suffered from a mental illness. This not only impacts a decision on whether to hire a person but also has a very detrimental effect on supporting that person through treatment or rough periods as well as after returning to work after having had an episode of mental illness. Good programs are now available to assist employers in this regard.

10. Stigma

Perhaps the greatest barriers to effectively employing people with mental illness are stigma and discrimination. This impacts a person’s willingness to disclose a mental illness, and therefore often not seek treatment or support. This results in conditions not being treated in a timely fashion thereby reducing the level of recovery and increasing the time required to recover. Stigma also often impacts an employer’s willingness to hire somebody with a known mental illness, regardless of that person’s ability to contribute. Efforts are being made nationwide to reduce stigma but there is a huge way to go before it becomes the same as dealing with a person’s physical ailments.

11. Health Benefits

While AHS covers psychiatric services, which means people can get access to medication; there is often little availability for therapy from psychiatrists. Benefit plans need to cover private counseling, eg with psychologists, in order to provide effective treatment for many people living with mental illness.

12. Mental Health Pervasive

Effective management of issues relating to mental health require extensive cross-ministerial planning and cooperation as only about 30 per cent of the mental health portfolio is actually in health, as effective treatment and supports involve much more than prescribing medication. Other areas impacting effective employment of people with mental illness include: housing, justice, transportation, social and community supports, information/privacy, and communications.

A presentation made by Tom Shand, Executive Director of CMHA Alberta, to the Alberta Teachers’ Association on March 18, 2011.

Three little words that can mean so much and possibly even save a life.

For that reason, this is the message being delivered jointly by the Canadian Mental Health Association (CMHA) and Alberta Teachers’ Association (ATA) in schools across Alberta.

When a young person breaks an arm or is burning up with fever, whether at home, at school, or in the community; there is seldom a question of what course of action needs to be taken. Most physical ailments are like that. Nobody wants them but neither are people afraid to seek help in order to get better.

Unfortunately, most instances of mental illness are not looked upon the same way by most people. They are too often seen as a sign of individual weakness or some type of character flaw. It is not that people purposely want to malign others but mental illness is largely misunderstood and therefore either mistreated or ignored.

This is difficult enough for adults, with lived experience to help them cope, but it can be even more so for youth, who are dealing with many changes and pressures and have not yet developed the skills to put personal issues in perspective.

Experiences of youth are critical. The roots of mental illness and the first signs of their emergence most often occurs during one’s youth. It is estimated that more than 15 per cent of young Canadians will experience mental illness – or about five students in a given class of 30. It is a serious problem not only because of the numbers of people it affects – youth and their families and friends – but also in its potential severity as suicide is the second leading cause of death for those between ages 15 and 24.

The good news is that recovery is very achievable, to various degrees, for most people living with mental illness. Discovery and diagnosis are key. For most people, the sooner help is sought the better the chances for a speedier and more complete recovery.

For young people, symptoms of potential mental illness can often be dismissed as bad moods, reactions to bad experiences, the impact of living in tough environments or various social circumstances or school experiences.

For example, symptoms of depression in youth can include:

• Lack of motivation for an extended period of time
• Persistent feels of hopelessness or helplessness
• Loss of interest in activities previously enjoyed
• Disruption to sleep patterns
• Talk or thoughts of suicide
• Physical symptoms such as fatigue or headaches

It is certainly part of life to experience anger, sadness and frustration as responses to stimuli or life circumstances. However, when large changes in moods or behaviour extend for longer than two weeks, there is a good chance that something has changed in that person and he or she may need help. “Can we talk?” is a good place to start in encouraging that person to seek help and letting one know he or she is not alone and it is okay to talk about it. You don’t have to be an expert to be a good listener or to open the door to help. It is normal for people to feel uncomfortable or frightened talking about personal issues so it is important to create an environment where they feel safe doing so.

So what causes mental illness? There is no single cause but usually a complex interplay of factors affecting a person’s mental health. Triggers include: chemical imbalances in the brain, psychological and social factors and genetics. Prolonged severe stress and/or traumatic events, such as child abuse and violence can often lead to mental illness, although a person may not be immediately symptomatic.

In Alberta, Alberta Health Services recognizes the importance of reaching people at a young age, both in treating mental illness and in creating a better understanding of mental health and mental illness.

Given how much time that young people spend in school and the tremendous influence of their fellow students and teachers, the CMHA was delighted to be approached by the ATA to work together to help overcome stigma and increase understanding of mental illness in our school through the “Healthy Minds, Bright Futures” program.

By increasing understanding and increasing enlightenment, discussion of mental illness will help it emerge from the shadows thereby fostering an emerging attitude of hope which is so critical to recovery. “Can we talk?” – three little words that can mean so much.