carers

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.

 

 

“Stay With Me”—John’s Campaign revolutionizing hospital care in the UK

Catherine Monk-Saigal

Courtesy of John's Campaign
Courtesy of John’s Campaign

Imagine a health care world where the term “visiting hours” doesn’t exist and caregivers or family members of people with dementia are invited to stay with their loved one in hospital.

Open visiting hours may still be a work in progress in Ontario, but thanks to a small but very powerful grassroots movement, it’s a reality in over 400 hospitals in the United Kingdom.

The reason? John’s Campaign.

John’s Campaign was born out of Nicci Gerrard’s experience watching her father John’s rapid decline during an extended hospital stay. At 86, John, who had been living with dementia for over a decade, was brought into hospital to be treated for debilitating leg ulcers. During his stay, an outbreak of norovirus within the hospital kept Nicci and the rest of John’s family from visiting. As time went on, John’s cognitive and physical condition began to decline rapidly and he had little contact with any family or friends. Five weeks later, although fully recovered from his leg ulcers, John left the hospital immobile frail and unable to perform even the simplest tasks he had been able to partake in just five weeks earlier.

For Nicci, seeing this change in her father was heartbreaking. However, what was more shocking was just how common this experience was for people living with dementia and their families. Recognizing this as an important issue, Nicci took action.

Fortunately, she didn’t have to look far for a model that works. In the pediatric system, parents are encouraged to stay with their children in hospital to help them feel safe and comfortable in a strange environment. But Nicci wondered: why not take a similar approach for dementia patients who may become confused, scared, or agitated when left alone in hospital?

Like that, John’s Campaign was born.

The premise of the campaign is simple: open visiting hours for people providing care for someone with dementia. Their tagline “Stay With Me” calls for families and caregivers of people with dementia to have the same rights as the parents of sick children, and be allowed to remain in hospital for as many hours as needed. It may sound simple, but for caregivers it makes a world of difference.

“Carers should be allowed to stay with those suffering from dementia. It should not be a duty but an inalienable right, a matter of moral decency and simple human kindness,”

– Nicci Gerrard

While the campaign is primarily centred around an influential presence on Twitter (@JohnCampaign), in just over two years, 407 hospitals have joined a growing coalition that supports a more carer-friendly healthcare environment. Though the Campaign’s main focus is to get hospitals to sign on for open visiting hours, this has also led to a much broader system-wide commitment to recognizing and meeting the needs of carers.

The campaign has achieved such unprecedented success and momentum that in early October 2016 it hosted its first conference. With over 150 health care providers in attendance, and countless caregivers and family supporters, the conference allowed families to share their experiences and unite their voices on the major issues the campaign addresses. It also provided a much needed forum to discuss what’s next for this simple yet transformative cause.

John’s Campaign first came to the attention of The Change Foundation during a recent trip to the UK to meet with caregiver-focused organizations. During the trip, Foundation staff, including President and CEO Cathy Fooks, was struck by the campaign’s power to create system-level change through a grassroots movement.

As The Change Foundation partners with Ontario health care delivery/service organizations to actively integrate, recognize and support caregivers in the important role they play within the health care system, this movement serves as an important reminder of the powerful influence grassroots action can have in shaping and changing formal health care structures.

Action through policy: Legislation supporting family caregivers

Cayla Baarda

family caregiver legislationOver the last few years, governments around the world have started taking action to improve legislative and policy supports for caregivers. As part of our research and discovery work, The Change Foundation took a closer look at some of the recent changes in legislation and policy worldwide. Although we found promising policy developments in many jurisdictions, there were three recent changes gaining momentum in the U.S., Canada, and Scotland which were the most relevant for our work, which are summarized below.

The United States: Caregiver Advise, Record, Enable (CARE) Act

In 2014, Oklahoma enacted the Caregiver Advise, Record, Enable (C.A.R.E.) Act, an interesting approach to recognizing the caregiver as part of the care team. The Act requires hospitals and rehabilitation facilities to allow patients to designate a caregiver when the patient is admitted, and hospitals must inform the designated caregiver when a patient is being discharged. As part of the discharge process, hospitals must also consult with the caregiver to describe the patient’s aftercare requirements.  Within the past two years, 21 more states have signed the C.A.R.E. Act into law, six states have passed the bill, and four states have introduced the bill into the legislature, signaling strong support for its measures nationwide.

Canada: Enhancing Support for Working Caregivers

In early 2016, the Canadian Federal Government announced a significant expansion of compassionate care benefits from six weeks to 26 weeks. Compassionate care benefits are Employment Insurance (EI) benefits paid to people who have to be away from work temporarily to provide care or support to a family member who is gravely ill. The policy change signaled an intention to alleviate the financial burden of taking time off work to provide care or support to family and friends.

Shortly after the announcement, Nova Scotia became the first Canadian province to more than double compassionate care leave from eight weeks to 28 weeks. Compassionate care leave is unpaid leave to provide care or support to a gravely ill family member. Several provinces have followed Nova Scotia’s lead, with Manitoba and New Brunswick already implementing 28 week leave, and Saskatchewan expected to extend their policy by early 2017.

Scotland: Supporting Caregivers’ Health and Well-being

As part of the Scottish Government’s vision of healthier and fairer Scotland, Scotland’s Carer’s Act came into force in 2016. Following the momentum of England’s noteworthy Care Act 2014, the Act will formally give caregivers rights in law for the first time in Scotland. The Act includes provisions for local authorities to involve caregivers in the planning of service delivery, create specific support plans for both adult and young carers, and create an information and advice service for local carers to access. As part of the legislation, carers have expanded rights and control over their health care and that of the person they care for.

Though only three examples among many, these policy development help to illustrate the larger momentum shift towards better supporting family caregivers.

The Change Foundation plans build and drive this moment in Ontario through our Changing CARE initiative which will invest in innovative projects designed to improve the experience of caregivers in Ontario. As we do so, we will continue to track developments in in other jurisdictions as they develop new policies, programs, legislation, and supports that recognize and support caregivers.

To read more about legislation, policies, and programs supporting family caregivers, visit The Change Foundation’s Family Caregiver Overview or Caregiver Resource Hub here.

Cayla Baarda is Research Associate in the City of Toronto’s Urban Fellows Program and holds a Masters in Public Policy from the School of Public Policy and Governance at the University of Toronto. She was hired as a Research Assistant at the Foundation during the summer of 2016.

Watch Hot Talks on Health with Heléna Herklots

On April 27, 2016, Ontario policy makers, health professionals, family caregivers, and patients met to hear Heléna Herklots, Chief Executive of CarersUK speak on the development of supportive policy for caregivers in the United Kingdom and what Ontario can learn from the UK experience. Family caregiver and author Katherine Arnup, PhD, also addressed those in attendance with a moving response based on her own experience providing care for her sister and parents.

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

Webcast Video

Photo Gallery

 

WHAT’S BEING SAID

Where do #caregivers go for information and supports? We gained insights from our survey with 800 caregivers for the Spotlight on Ontario's Caregivers however we wanted to hear from our Caregiver Advisory Panel members as well. Check out what they said: bit.ly/2KJpOOm pic.twitter.com/WJG3ehZI0X