May 30, 2016, by Pat Morden, Caregiver Exchange
In April Heléna Herklots, CEO of Carers UK, a national membership charity with 25,000 members, visited Toronto to talk about caregiving in her country. Caregiver Exchange had an opportunity to talk to her. Here’s part of that conversation:
Q: Why is caregiving becoming a major social and political issue in your country?
A: It starts with demographics – the fact that we have an aging population and more people are living longer with long-term conditions. There is growing recognition that most care in the UK has always been provided by families, and as care needs increase, the issue becomes more critical. We’re also seeing economic issues, as caregivers struggle to stay in work and care at the same time. Companies are beginning to understand that they need to do more to support carers in the workforce if they don’t want to lose skilled people, especially those in their 40s and 50s. There is greater awareness of these issues through the media.
Q: What are the toughest challenges carers face in the UK?
A: Access to support and help is always a challenge -- just knowing what you’re entitled to, navigating your way through the system, and trying to join up the different bits of support you need for your loved one. Some people describe the coordination of care as almost more difficult and stressful than providing the care itself.
Caring at a distance is also very stressful. In the UK we’ve seen cuts to benefits for people with disabilities, which have created financial hardship. All of this is in addition to the emotional and physical effects of caring – the feelings of isolation and the impact on health.
Another huge and emerging issue is around what happens when the caring experience ends, particularly if you’ve had to change your whole life to provide care. Can you get back to work or do you have health issues that need attention. Some people just feel exhausted at the end of it.
Q: If you had a magic wand, what would you change to make caregiving better?
A: In the UK we’ve had some very positive developments in terms of legislation. We now have a Carers Act that ensures caregivers have the right to an assessment of their needs, and to support on the basis of that assessment. That’s a very positive step forward. One of the things we’re pressing for now is for the National Health Service to have a legal duty to identify and support carers.
Legislation is necessary but not sufficient on its own. We must see real change in attitudes and culture around caregiving. The vision of Carers UK captures it -- a society that respects, values and supports carers. We want to promote respect for the role of caregiving, recognition that caregivers are the experts in the circumstances of the person they are caring for, and value for the unpaid work they do and the incredibly important contribution they make to society.
The third area where we need change is practical assistance for caregivers – providing the things that make the most difference, and help them build resilience and coping skills. One of those things is breaks for carers, which can take many forms. Another is education and information so that carers know what is available and how to get it, and don’t have to struggle to join up the different bits of support.
Q: From your experience with Carers UK, what message would you like to send to Canadian caregivers?
A: When carers come together and share experiences and learning, they are absolutely a force to be reckoned with! I know it’s tough when so much time and energy is spent caring, but together they can make change happen.
Peer to peer support is incredibly powerful. Caregivers need to know that they are not alone, that it’s okay to feel angry or guilty sometimes. They also need to feel proud of what they do, and to understand that they do it well, so that they can find the laughter and enjoyment in caring.
Caregiving is a near-universal experience. When we care, we learn so much about ourselves and so much that we can share with others. Caregiving in whatever form it takes should be talked about. It is part and parcel of life, and needs to be supported and valued.