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.

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