UK

Leadership is key, and other lessons learned from the UK’s Helen Bevan

Cathy Fooks, President & CEO

The way to get stronger is to let go of power, according to what Helen Bevan of England’s National Health System told a group of leaders in Ontario health care at The Change Foundation recently.

That seemingly paradoxical notion made sense to those of us gathered there once we grasped Bevan’s argument that only by shifting to different kinds of power, finding it in the hands of different people and using it in different ways will health systems be sustainable and provide the care patients deserve.

Bevan, the Chief Transformation Officer for the National Health Service (NHS) was the third speaker in a series on integrating care organized by The Change Foundation with partners from the University of Toronto — the Institute of Health Policy Management and Evaluation, the Health System Performance Research Network, and the Dalla Lana School of Public Health. The goal is to create a learning lab of ideas that will help leaders in Ontario integrate care, and we’re sharing insights from these important conversations more broadly through blog posts, to be followed by more in-depth articles in Healthcare Quarterly.

Bevan, who gave her presentation by video link, had three lessons about introducing large-scale change for the three dozen people watching her from The Change Foundation’s board room. The first was on the importance of the language and narratives we use when proposing change; the second, on shifting power and the new approach to leadership that requires; the third was on the choice between structure and agency as the means of bringing about change.

Bevan did not shy away from using the example of a big mistake the NHS made in the use of language for their current redesign. Their choice of the phrase “accountable care organization,” originally used in Obamacare, to describe new local partnerships of health and social services triggered an immediate backlash. Critics warned of “American-style” healthcare and privatization. Some of their work was put on hold as a result and the new name will be integrated care organizations.

Bevan said the incident was a compelling reminder of something she had long known — that to win support for large-scale change, you need to connect with people’s values and emotions, in this case through language and labels that are meaningful for people.

“You know if we had kind of stood back and thought about it, we should never have used the labelling ACO or accountable care, because it’s got connotations around U.S. health care privatization,” Bevan said, adding “You will smile at this, but the new labelling — rather than being an accountable care organization — will be an integrated care organization.”

I was more inclined to sigh than smile, because the incident was such a prime example of what happens when we don’t involve the public in what we’re doing. That’s a failure we’re often guilty of in health care, whether it’s in how we treat one individual or family, or responding to broader public needs.

The second lesson Bevan offered the meeting was that integrated care requires a different approach to leadership. She began by talking about old power, the norm in hierarchical organizations, including health care. She defined it as positional authority, based on commands and focused on meeting goals and standards. New power, by contrast, is based on collaborative relationships and the sharing of goals and ideas.

2 kinds of power

Old power clearly leaves little room for public input, or even the involvement of staff and providers. Moreover, since early efforts to reform the NHS actually put health organizations in competition with each other, moving to new power will require big shifts in leadership thinking, but they are essential.

“There can’t be winners and losers,” Bevan said. “The system has got to win.” Integration will only succeed, she added, if it’s built on relationships based on trust, which make it possible for people at all levels to work together to bring about change.

Bevan’s third lesson was that system-wide change is accomplished not only by structural means such as rewriting rules, setting new standards, or imposing top-down plans for restructuring, but also through agency (empowering people and groups to make positive changes).

Public sector reform over the past 20 years has focused on structural mechanisms, but giving people (or groups) agency to make changes is increasingly popular around the world. It’s faster, for one thing. Also, it brings many more minds to bear on an issue — ideally, the minds of people who work on or near the frontlines and know what the real issues are and what solutions make the most sense.

“We know that diverse groups of people will consistently make better decisions than small groups of senior leaders or experts,” Bevan said. “If we start doing things in different ways, if we start opening up our decision-making processes and we have different kinds of conversations with people, I think we can almost talk ourselves and think ourselves into different ways of doing things.”

This was an idea more likely to draw a smile than a sigh from me — because it shows how patients and families, as well as providers, can be change agents, if systems welcome and encourage them. Bevan called it “building power to make a difference,” and it’s done, she told us, by activating people, by improving their ability to make choices and building capability. If we do that, she said, we can build leaders everywhere.

Command and control not the way to integrated care

Jodeme Goldhar, Executive Lead, Strategy & Innovation

It’s a good thing the meeting room at the Change Foundation has big windows, considering the rate at which Geoff Huggins was throwing accepted wisdom out of them during his recent visit. Huggins is director for health and social care integration in Scotland. He described his role as one of strategic and policy responsibility — but added “both of those are really quite outdated concepts.” So that was the first idea of how to bring about change that got tossed.

Huggins was the second health leader from the United Kingdom to speak on integrating care at a series organized by The Change Foundation with partners from the University of Toronto — the Institute of Health Policy Management and Evaluation, the Health System Performance Research Network, and the Dalla Lana School of Public Health. We’re sharing ideas from these important conversations more broadly through blog posts, to be followed by more in-depth coverage in Healthcare Quarterly in the new year.

Scotland officially launched integrated health and social care with legislation that came into effect in April 2016. It created 32 “Integration Authorities,” (similar to LHIN sub-regions in Ontario) and put heavy emphasis on local action for local needs. (More detail on Scotland’s integrated approach to health and social care is available at: http://www.gov.scot/Topics/Health/Policy/Health-Social-Care-Integration)

Huggins told the meeting the move to integration was driven by the need to rethink a healthcare system that was unsustainable in the face of people living longer, even into very old age, often with chronic conditions.

Historically, he told us, Scotland would have taken a highly centralized approach to the issue.

“Our previous model was to publish guidance, to have budgets, to have projects…and to set targets, then expect the system, by doing all those things which we had centrally mandated, would produce benefits. That model doesn’t seem to be working.”

There went another piece of accepted wisdom out the window — that centralized policy and planning, firmly mandated from on high and carefully tracked and measured, is the essence of keeping healthcare sustainable.

Scotland is also bucking current thought on standardization. Where Ontario and most other jurisdictions strive to scale up good ideas and spread them, Huggins embraces variation. There is no guarantee that patients in each Integration Authority will get the same services as patients elsewhere; in a country with 300 per cent variation in hospitalization rates for seniors, one size will definitely not fit all.

Instead, Scotland set nine health and social care goals for the country, then asked each locality what it needed to achieve those goals, in the belief the government’s role is to remove barriers and enable change, not to dictate how goals are to be achieved. Each locality’s different mix of providers and population needs local solutions backed by government support.

Now, health officials are free to act locally — although not in isolation. “What we expect is that you know what everybody else is doing, how people are approaching the same problem, you know what the evidence base says, and you find the best solution for your area,” Huggins explained. “Whether it’s something somebody else has done, or something you build yourself, you then track it against outcomes and you evaluate it appropriately.”

It’s a big change for governments, Huggins said. They like holding on to power, telling people what to do and how to do it, because being in charge makes them look committed and effective, but it comes at a price.

“At the point where we become involved in being directive and controlling and monitoring, then we begin to suck the life out of people,” he said. “All of this reduces the ability of the system to do the things it needs to do. We have great people — we need to treat them as great people.”

Most healthcare systems try to control any change that occurs, so it was clearly energizing for Huggins’ audience to hear a high-up official of another country’s healthcare bureaucracy say categorically that relinquishing control and learning to support people making changes yields greater improvement than central planning.

In fact, when Huggins remarked “The role of government is to promote that capability and to support that system rather than to direct that system and tell it what it needs to do,” he was echoing the words of the speaker at the first meeting, Chris Ham, who said the goal of government and planning bodies in integrating healthcare should be “do no harm.”

There were other echoes as well. Both Ham and Huggins said integration must focus on people, not organizations. And both noted that integration requires surrendering power, and acting altruistically to put the patient or the team or the system ahead of the self, or the organization, or the professional silo.

It can be done — and according to Huggins works best on the front line. “At the point where you give teams of people the opportunity to work together and differently, they will generally find good and sensible things to do and our challenge is to be out of the way and not try to overly manage it.”

Watch Hot Talks on Health, A Spotlight on Young Carers

On November 20, 2017 we hosted our second Hot Talks on Health event focused on family caregivers. The event shined an important light on the often invisible population of young carers. We heard keynote commentary from the U.K. on the state of young carer supports, the journey to legislation recognizing the vital role of young carers, and how young carers are supported (or not) in the healthcare system. In addition, we heard the story of an Ontario young carer, as well as insights on the caregiver recognition and support movement in Ontario.

Panelists:

  • Abbigail, Ontario young carer
  • Jenny Frank, Strategic Consultant, Young Carers England
  • Janet Beed, Health Care Consultant and Advisor, Ontario Caregiver Initiative

 

If you were unable to attend this latest edition of Hot Talks, a full video from the event is available below.

Webcast video

 

Integrated care: reach across, don’t dictate down

Cathy Fooks, President & CEO

There’s broad agreement that integrated healthcare serves patients better, eases the burden on caregivers and improves system accountability and efficiency. There are excellent examples of it in many countries and multiple efforts to create it here in Canada. Yet progress toward it remains frustratingly slow.

For that reason, The Change Foundation is working with partners from the University of Toronto — the Institute of Health Policy Management and Evaluation, the Health System Performance Research Network, and the Dalla Lana School of Public Health — to organize a series of discussions on accelerating integrated care.

Our idea was to create a kind of learning lab: over the meetings, the same group of Ontario health-system leaders would hear from experts on how integration is developing in other countries. Their responses to the first discussion would shape the second, and the third would build on that. We’ll have more complete articles coming out about the discussions, but I wanted to share briefly the gist of our September meeting.

Chris Ham, chief executive of England’s King’s Fund think tank, was our guest speaker at the first session. He opened his remarks by showing a video the King’s Fund uses to illustrate the concept of integrated care. It’s a useful primer, but by now the concepts of integrated care are well known, without being well-used.

That failure to spread, according to Ham, is because the vast majority of attempts to integrate care go about it the wrong way. Successful integrated care, he said, is fundamentally about people and their families and carers—how we can best meet their needs and how we can give them the skills required to focus on relationships. Our efforts tend to flounder because we forget that, and focus our energies on institutions, professions and jurisdictions, as Ham illustrated in this slide: 

Challanges slides_the kings fund

It was easy to recognize the point Ham’s slide was illustrating: we’ve all been part of the strategizing and planning the column of technical challenges represents. Our efforts to integrate healthcare often, perhaps usually, boil down to debates over affordability and territory.

In a strongly centralized, government-controlled system, that’s no surprise. Healthcare is structured around budgets and institutions. But that is Ham’s point: it should be about people. People are not technical challenges. And that’s why successful integration shifts the focus to the second column, relational challenges.

That simple list was clearly revelatory for the people at the meeting. The idea that we need to focus on systems and collaboration to transform healthcare is not new, of course. What caught people’s attention was Ham’s firm belief that government needs to “stay out of the way” and let local groups draw on and build relationships in order to make care work for the people in their area. More specifically, government should create the right environment to allow local organizations to come up with the right solutions for them based on their populations, culture and resources.

Ham’s recipe for success, based on what he’s seen so far, suggests integrated care cannot be introduced in a system-wide, top-down way. The best efforts he knows start small scale, in neighbourhoods or communities, perhaps serving as many as 30,000 to 50,000 people. Small enough, in any case, that providers are used to working together, and building links among services is not too unwieldy.

Ham’s first example of that small-scale personal approach was the remarkable shift to integrated care in the English retirement area of Torbay. Change there was triggered by a failing grade given to the town’s social services system by government inspectors, he said, but the change itself was not dictated by government; rather, local healthcare providers, led by family doctors, got together to improve their patients’ lives.

He also described how the District Health Board for Canterbury, the region surrounding Christchurch on New Zealand’s South Island, undertook radical changes to its care services beginning in 2007, when demand on the system was mounting to the point where it looked unsustainable.

Key to that success, Ham said, was Canterbury’s close-knit community, where people already knew and trusted each other. But it was also about true and meaningful engagement of those who would have to implement the change at the frontlines. He believes real change cannot be dictated or transactional — it must be bottom up and developed at the person-to-person level. I’d add that it must also involve patients and caregivers to be meaningful, which is an aspect of engagement Ham admits has often been neglected.

Ham added a caution as he described these successful examples of integrated care. Because it depends on relationships and local community reality, he said, there is no single right way to do it, and one community’s successful model cannot simply be grafted onto another community. We should not look for shortcuts.

Burning Platform? Cracked Foundation? Either way, change is needed

Cathy Fooks, President & CEO

Often, it takes a spark — a burning platform – to make transformational change in our healthcare system. When there’s a lack of a major crisis or tragedy, there’s often the lack of wherewithal or ability to upend the status quo. So I wasn’t surprised to hear how concerns about a failing social services system was “the burning platform” to integrate health and social services in a small town in England.

It’s an expression you hear all the time when people get together to talk about improving healthcare. We need a burning platform, someone inevitably says, then we could get something done.

While it’s true a crisis often drives reform, it’s a pretty grim metaphor — do we really want to achieve better care in the future by having things spin out of control now? And what are we saying to people who are struggling with the system as it is when we imply regret that in Canada we can’t seem to manage anything worse than a smoulder?

Discussions often centre around what some Ontario organizations are doing to promote integrated care, or how badly the system is failing to deliver it for some patients. But the more I thought about it, the more I wondered whether it’s the right metaphor. We can debate whether Ontario has a burning platform in healthcare but the visual for me is different. I think what we have is a cracked foundation: somewhat hidden and getting worse.

The last decade of policy “reform” has focused on better integrated care across multiple access points – primary care, hospitals, home and community and long term care. No one is arguing we have achieved success yet. But, it’s clear the emphasis is on living longer at home and in the community, with proper support. This hasn’t completely arrived and the cracks are beginning to show, particularly as the load for basic care is shifting to families and friends – supported or not.

At The Change Foundation, we hear this again and again in speaking with caregivers and providers. Caregivers talk about increasing levels of stress and burnout and providers recognize people need support but don’t know how to access it and don’t have time to research local resources – if they exist.

The thing about a cracked foundation is that it’s easy to ignore even though the homeowner knows it’s there. You may choose to do nothing about it, but you know the house is crumbling. The floor sags, doors won’t close, lines creep across the walls, yet the house keeps standing. Until it doesn’t.

At the Change Foundation, we are working to change this. Four Changing Care teams are working directly with their family caregivers and their professional staff to fix that foundation. We are looking forward to showcasing their innovations. Some simple fixes perhaps but necessary repairs.

 

The State of Caring: UK & Ontario caregivers struggling with similar issues

Lori Hale, Executive Lead, Research & Policy

In July, Carers UK released their annual State of Caring report, which is based on the results of surveys with over 6,600 carers in the UK, and is meant to serve as a snapshot of life for carers in 2017. As I read through the report, I couldn’t help but notice the similarities between the carer experience in the UK, and the family caregiver experience in Ontario.

But before I get into it, I want to take a second to explain the terminology: the people we refer to here in Ontario as family caregivers, or sometimes just caregivers, are referred to as carers in the UK. But really, both terms are referring to the same people. And just to add an added layer of complexity, when family caregivers in Ontario are under 25 years old, we refer to them as young carers, not as young caregivers.

At The Change Foundation, we’ve done some research of our own into the caregiver experience in Ontario. As we presented in our 2016 report, A Profile of Family Caregivers in Ontario, we analyzed responses from 2,200 caregivers who participated in a 2012 Statistics Canada survey.

We also heard from 300 caregivers as part of our Caring Experience project, which we reported on in our Stories Shared, Voices Heard: Ontario’s Family Caregivers report.

While our surveys and Carers UK’s survey can’t be compared as apples to apples, due to many differences in terms of design, population surveyed and time period studied, there are nevertheless many common themes that emerged.

For example, the State of Caring report highlights the following themes:

  • Carers don’t feel valued or recognized. Three quarters (73%) of carers felt that their contribution was not understood or valued by the Government, and a majority felt that the public does not value their contribution.
  • Carers consistently aren’t being properly assessed and supports aren’t being put in place. Of the 68% of carers who said they had received a carer’s assessment, over half said their ability and willingness to provide care was not properly considered in the assessment and in the support they received; and only a third felt that the support needed to look after their own mental and physical health alongside caring was thoroughly considered and reflected in the assessment process. The Care Act in England defines new rights around assessments for carers, but as the State of Caring report points out “responses from carers show that this does not necessarily mean carers are getting the support the assessment identified them needing.”
  • Carers lack access to practical support and respite. A quarter of carers said they receive no practical support to help them with caring; for those who are caring 50 hours or more a week, 20% receive no practical support to help them. A quarter of carers said they hadn’t had a day off from caring for more than five years, and four out of ten said they hadn’t had a day off for more than a year. Without proper support, including respite, “carers are pushed to the breaking point and have to give up work, stop caring, or even go into hospital themselves.”

We heard very similar things from caregivers in Ontario. In fact, our Changing CARE project, which emerged from our Caring Experience work, is built around very similar themes: 

  • Communication: better communication and information exchange between health care providers, and between caregivers and health care providers.
  • Assessment: more identification and assessment of family caregivers to determine their needs, abilities and expectations.
  • Recognition: formal recognition of the role caregivers play in our system by the patient’s care teams and by caregivers themselves.
  • Education and supports: more opportunities for caregiver support and education to develop key care skills and knowledge.

Our commitment to family caregivers goes beyond the boundaries of Changing CARE—We are also committed to further engaging with family caregivers in Ontario to truly understand their experience as they interact with health and community care providers. We applaud Carers UK for their commitment to getting to the root of the carer experience in their jurisdiction. We plan to keep doing the same in ours.

Young Carers – The Invisible Population

TCF response to Kielburger article in the Huffington Post

Christa Haanstra, Executive Lead, Young Carers

To see Craig and Marc Kielburger shine a large spotlight on young carers, in their recent Huffington Post article, “Forced to Grow Up Too Fast, Canada’s Young Carers Face Trauma,” is extremely encouraging. This invisible population which makes up 28% of 15 to 24 year olds in Canada, has gone unnoticed for far too long. It becomes even more urgent when you consider there are many more youth left out of these statistics, as there is no data on caregivers under 15 years old. The sad reality is that caregiving responsibilities can start in children as young as five.

The Change Foundation is working in partnership with caregivers and health care providers to fundamentally change the way the health care system interacts with caregivers, and shine light on the vital but often unrecognized role of family caregivers. This includes young carers.

It’s much easier to explain young carers when we talk about it in the context of siblings living in, and helping out, in a household where one of their brothers or sisters has an illness – usually a chronic illness, disability or a serious health condition. But the truth is there are many young carers who play a notable role in supporting a parent or grandparent with a health issue. Those stories are harder to tell.

The Change Foundation has seen the impact of caregiving on young carers firsthand. Last year, we spent a week with eight young carers between 10 and 18 years old, who used photos, video and storytelling to bring a voice to their own personal stories. Six of them have bravely agreed to share their stories publicly.

There’s no question that there are two sides to the young carer coin. As poignantly stated in the article, “Panic attacks. Depression. Exhaustion. Social isolation. Poor academic performance and absenteeism. Behavioural issues,” happen as a result of their caregiver responsibilities. The other side was very apparent when I worked at Holland Bloorview, Canada’s leading pediatric rehabilitation hospital. I always knew there was something about the siblings of the children that we served. That something was usually a level of empathy beyond what most adults have, a degree of maturity well beyond their years, and a very high-achieving attitude.

As the article highlights, we know from the UK experience that young carers benefit greatly from both peer and professional support, as well as socializing with other young carers.

In the UK, under the Carers Act 2014, all caregivers, including young carers, are entitled to an assessment, followed by supports. Moreover, the onus is on health and social providers to identify young carers. Once a young carer is identified, they are assessed, and often the first step is to ‘right size’ their responsibility, by advocating for added services for the ‘cared for’ and for supports for the young carer.

Clearly, this doesn’t happen in Ontario. Not only is there a lack of awareness or understanding of young carers, there is an abject lack of supports and resources. Where can they turn for support? As a professional, where would you refer them? There are three small trailblazing organizations that offer some supports–Powerhouse Project (Niagara and Haldimand/Norfolk regions), Young Carers Program (offered by Hospice Toronto) and Young Carers Project (Kitchener Waterloo)–as well as a handful of researchers budding in academic centres. This is a start, but doesn’t even reach the tip of the iceberg.

At a provincial level, we’ve started to see more discussion and focus on the needs of family caregivers. As the momentum builds, let’s not forget about young carers.

At the 2017 international conference on Young Carers held in Sweden, the needs of young carers were highlighted on a global stage. For me, a slide from a presentation by Ingvar Nilsson, National Economist (Sweden) summed up the call to action well. “It might look expensive to support young carers…but it is almost always more expensive not to do it.” Known as the “silent population” we all have a role to play in giving young carers the attention and support they deserve.

 

 

A bird’s eye view on young carers services in the U.K.

Catherine Monk-Saigal, Program and Communications Associate

Early on in The Change Foundation’s year of listening and learning from family caregivers (2015-2016), young carers emerged as an often-overlooked group of caregivers. A focus on meeting the needs for young carers services in a variety of settings will be integrated in our work with our four Changing CARE partnerships.

We often use the U.K. as a measuring stick of how far our province has to go in terms of support, recognition, assessment, and identification for caregivers. In February 2017, I had the incredible opportunity to travel to the U.K. to explore young carer services, and learn firsthand about the incredible strides the U.K. has taken to recognize and support its young carers.

Throughout my time with several different young carer organizations, the sheer abundance of community supports was overwhelming, from programs within schools to group community programs to online communities. A majority of these support organizations are funded and nestled within local authorities and social care programs.  At times, it seemed as if there was an overlap of some support services. Quite an exceptional problem to have.

What was the driving force behind this?

Interestingly, all the agencies agreed that the Carers Act of 2014, coupled with the changes to the Children and Families Act have made a notable difference in their ability to provide services. For many, it opened the doors into schools, and health and community care organizations, including general practitioners. The legislation has helped increase awareness of young carers, but most importantly, it puts the onus on the health, community and education system to identify young carers and facilitate access to an assessment. It’s their legislated right.

Although the organizations we met with provide assessment and either refer or host supports for young carers, many also had a focus on enabling schools to create and independently run their own support and identification programs for young carers. In fact, several of the young carer organizations had created a criteria or scheme system for school programs, awarding schools based on the level of recognition and supports offered. Schools even took it upon themselves to identify a professional (teachers, counselors, principals, head teachers, etc) to act as young carer champions in their setting. 

One step further

Transition planning is a buzz word heard often as patients and caregivers try to navigate Ontario’s health and community care system. However, young carer agencies in the U.K. take this one step further. They realize that the role of young carers shifts when they move into young adulthood, so they are creating distinct young adult carer services within their agencies. Furthermore, there are a number of young adult carer services sprouting up in the U.K., to meet the unique needs of this population at a transitional time in life.

Although The Change Foundation is primarily focused on caregiver interactions with Ontario’s health care system, my time in the U.K. was a clear reminder that the role of a young carer surpasses the health care system. In the U.K., schools are a vital partner to local young carer programs. It was abundantly clear that without the national awareness of the role and the legislative push to ensure that the needs of young carers are met, the programs, services, and supports at a local and national level would not be as robust as they are today. 

As we move forward with our Changing CARE projects, we will continue to look internationally, in the U.K. and beyond, for inspiration. Look for lessons and takeaways from our own Jodeme Goldhar, Executive Lead of Strategy and Innovation, from her international meetings in our next newsletter. 

Across the pond: New reflections from the UK

CFooks 2The start of the winter season always brings tidings of joy, peace, and for some, relaxation. For many family caregivers, however, this can be start of an even more stressful period.

From providing emotional support to performing medical tasks, we know caregivers take on a host of roles and responsibilities, many of who also hold down paid employment. Add in the scheduling it takes to get together with family and the necessary adaptation to reduced hours from home care and other support networks, many caregivers may feel more stressed or isolated.

The situation can be even more difficult for young carers. Since schools close and various recreation programs take breaks for the December holidays, many young people may find themselves without their own support networks of friends, teachers, or other mentors.

It’s during this time of the year that the need for dedicated informal and formal caregiver support networks seems the most striking to me. Though pockets of promise exist throughout Ontario, we don’t yet have a consistent way to support and recognize caregivers across the province.

Some answers may lie across the pond. In October, I travelled to the United Kingdom, arguably one of the leading countries in terms of recognizing caregiver rights and developing supports. During my visit, I was astonished to see the simple and fairly easy types of caregiver support initiatives that were created on local, regional, and national levels—for example, Carers Passports.

Cathy Fooks speaking at CarersUK
Cathy Fooks speaking at CarersUK

Depending on the community or region where they’ve been developed, Carers Passports range from discount cards to passes for open visiting hours. Passports recognize who caregivers are in the health care system while at the same time connecting caregivers to a number of identifiable community supports. For organizations like Carers in Herts, carers passports leverage existing community institutions and businesses. To make initial contact and lessen the stigma that comes with seeking help, Carers in Herts uses local libraries as initial outreach posts and asks for caregivers to validate their passports by calling the organization. Once validated, the caregiver can use the passport as a discount card at local businesses, but have also had their information recorded by Carers in Herts for any further follow ups.

For this issue of Top of Mind, we share more our key findings from this recent visit. Most notably, we take a look the work organizations such as Carers UK and Carers in Herts have done to develop key caregiver support networks in our commentary article, written by Christa Haanstra, Executive Lead, Strategic Communications.  We also take time to feature John’s Campaign, a grassroots social media movement in the UK with one simple and successful aim: giving caregivers the right to stay in hospital with persons with dementia.

Our second feature gives an update on our long-term care residents’ councils and family councils project. As many of you may know, we released the project’s phase one report, Enhancing Care, Enhancing Life, in October which shared some key findings from a series of surveys to long-term care residents, families, and staff. In this feature, Research Assistant Stephanie Hylmar provdes her reflections on what these finding mean for Ontario’s long-term care sector.

Lastly, as this is our last Top of Mind for 2016, I want to wish you all a safe and happy holiday with your friends and family.

Big things are in store for 2017, including the announcement of our Changing CARE projects. I hope you’ll continue with us as we work to improve family caregiver experiences in Ontario’s health and community care sectors.

Insight and innovation in the UK

Christa Haanstra, Executive Lead, Strategic Communications 

Top insights from the Foundation's UK tourIt was on the train back to London from Hertfordshire when the enormity of just how much leadership, collaboration and focus is needed to make positive changes for caregivers in Ontario registered.

Throughout my work with The Change Foundation, I’ve been lucky to be a part of numerous caregiver engagement activities. In these settings, I’ve heard many caregivers share their experiences in Ontario’s health care system. It should come as no surprise that what made the difference in each story was the level of support and recognition a caregiver received. Sometimes it was as small as simply being asked how they were doing. Other times, it was as significant as peer support groups or formal counselling.

So this past October, as Cathy Fooks and I met with various caregiver organizations in the United Kingdom, it underscored for me just how far we have to go in Ontario to better recognize and empower caregivers.

Luckily for us, organizations we visited in the UK provided shining examples of the innovative and simple things that can be done to better support caregivers.

In the UK, the role of the caregiver has been in the national consciousness since the 1960s, evidenced by the large number of organizations and programs providing care for caregivers today. It was this critical mass of caregiver organizations that gained the attention of the lawmakers, culminating with the introduction of the Carers Act, 2014. This combination of grassroots efforts with formal recognition, such as legislation, has positioned the UK as a leader in supporting caregivers.

This long history is also reflected in the types of comprehensive regional programs that exist. For example, we had the privilege of visiting Carers in Herts, a leading regional organization working to erase the barriers that stand between caregivers and the support they need. Their passion, commitment and entrepreneurial spirit was evident every step of our visit.

Supporting a region of 1.25 million people, Carers in Herts provides carer information, advocacy, education and planning support. Their unique Carers Passport program has leveraged a creative partnership with the local library and local businesses and other services across Hertfordshire to provide rewards such as discounts to area caregivers. Seen as a kind of Certificate of Appreciation, the passports are a catalyst that connects Carers in Herts with caregivers to get them the support they need.

christa-cathy-nicci
Christa Haanstra (left) and Cathy Fooks (right) with John’s Campaign Founder Nicci Gerrard (centre).

Another outstanding program administered by Carers in Herts was their Make a Difference for Carers grant—a one-time sum of up to £500 for an individual caregiver’s positive health and wellness. The grant is designed to go towards an investment that best serves the caregiver’s unique needs as determined by an assessment with the caregiver. From a trip away for respite time, to an investment in a computer to facilitate new connections with other caregivers online, this small investment can have a huge impact on an individual’s life.

While Carers in Herts provided rich insight regionally, we were also impressed by Carers UK’s caregiver advocacy work nationally—in particular the Employers for Carers program. Through this program, Carers UK helps develop a work setting whereby any caregiver can self-identity to their employer and discuss what accommodations they may require, from flexible hours to additional time away. Although each caregiver-friendly workplace is unique, Carers UK typically follows a disability-friendly or mental health-friendly workplaces model.

Though many leaders I met were shocked at how little is being done in Ontario for caregivers, they also were quick to point to the issues facing caregivers in the UK. Many were all too familiar: perceived vs. real barriers to privacy; difficulty engaging health providers, the lack of caregiver self-identification; and the inconsistency in program implementation across regions. Despite the achievements in legislation and recognition, supporting the needs of caregivers is always a work in progress.

On the flight home, I took a moment to reflect on what we had seen. Though organizations like Carers in Herts emphasized just how far we have to go to in Ontario, the trip also renewed the Foundation’s drive to work with Ontario’s caregivers and providers.

The UK has provided the vision we see for Ontario. Now let’s make it happen.

 

 

WHAT’S BEING SAID

For our first case studies report, we profiled three pediatric centres: @MountSinai's NICU, @HBKidsHospital and @CHEOhospital. Review the case studies and the insights we’ve gathered here: bit.ly/2Stemsl pic.twitter.com/qQf09yEEIc