Who Cares? An exploration of caregiving and care receiving

On Friday 27 September, we hosted a panel event in partnership with The Exchange, as part of their ‘A Place To Call Home’ exhibition and the ESRC’s Festival of Social Science: Who Cares? An exploration of caregiving and care receiving

Through the event, we wanted to explore the care relationship through a mix of lived experience, academic and practice knowledge, to create an interesting discussion through a variety of lenses. This is in line with IMPACT’s approach to evidence, and the varied conversations we have more widely.

We were joined by:

  • Emily Kenway, author of ‘Who Cares: the Hidden Crisis of Caregiving and How We Solve It’ and social justice activist
  • Clenton Farquharson, a disabled person with lived experience who draws upon health and social care, Chair of TLAP’s programme board and Quality Matters, trustee of the Race Equality Foundation and ambassador for Disability Rights UK and Skills for Care
  • Jon Glasby, a qualified social worker by background and IMPACT’s Director, Professor of Health and Social Care at the University of Birmingham, and on the Board of an NHS Trust and of a local authority children’s service
  • David Brindle, a senior commentator on UK public services with an expertise in health and social care – he was the Guardian’s Public Services Editor for over 16 years – and is Chair for Ambient Support.

Emily started by sharing that one of the biggest things she learned through her experience as an unpaid carer was the “sheer invisibility of being a carer” – something she described as extreme. She also experienced discomfort with the role, through people say they “couldn’t” do it, which can lead to an othering of those who do choose to take on caring responsibilities. It’s important to recognise that most care is provided or given, unpaid, by one in ten of us – predominantly by women.

Emily described caring as something that no one can dodge, and that we should be thinking:

“Do we take it on ourselves, or pay others, or do we rethink our who approach to family, community and networks?”.

Recognising that unpaid carers outstrip paid carers three to one, Emily highlighted a flaw in the idea more paid carers will solve problems. She said care needs can fluctuate which makes a planned service difficult to execute and that people want to make choices around how their care is delivered and who by, which can lead to people refusing care from services – there will always be a need for some level of family intervention.

Emily concluded that care is something that is stitched throughout all of our lives.

Clenton shared:

“The world of caring really didn’t resonate for me, and then I realised […] the reality was a wake-up call – things are not in place.”

Clenton added that this is personal, to him, his family, and society – it’s more than the political. Using his houseplant analogy, Clenton emphasised the importance of care allowing people to live their lives to the fullest, for there to be room for love and joy.

“We talk about systems, structures and services – people want a life.”

Jon seconds Emily’s point on invisibility, adding that it was a key issue identified by the House of Lords Adult Social Care Committee. He said the sector is fragmented and there’s a sense of taboo that perpetuates the invisibility of care providers.

On language, he said that recruitment is challenging and that it could be reframed as an opportunity: “Caring for people stems from caring about them.” He highlighted that it’s important not to be naive but also to be optimistic and aspirational about the possibilities.

David asked the panel if they think it’s damaging to use the word “crisis” when talking about adult social care. Emily said her moral position is that she needs to reflect the urgency of the issue and the personal effects caring can have. She asks: “Why comms, not action? Organise and unionise rather than reframing and language”. She acknowledged an underlying crisis, considering the structures of capitalise and gender norms that do not work or exist anymore.

Emily asked if we need to define “family carer”, saying it’s of us at some point of our lives. Emily also talked about societal adaptations – things like the four-day working week, and architecture.

Clenton highlighted the recommendations of the Archbishop’s Reimagining Care Commission, particularly focusing on rethinking attitudes to care and support. He said:

“The NHS saved my life, social care changed my life – and we need both to work together.”

Jon described IMPACT’s approach to evidence, the importance of including practice knowledge and giving people clearer access to solutions. He says this works best when the evidence links to motives. Rather than it leading to an extra thing to do, evidence can be a tool to help.

David then asked whether we should be taking a top-down or bottom-up approach. Clenton said everyone has a role, Emily said she doesn’t look to government with hope, so we have to take action ourselves, and Jon said it’s both/and, but have to be collaborative and innovative.

David closed with a final question on the solutions or innovations that have given our panel hope. Clenton mentioned Gig Buddies/Stay Up Late, which allows people to live those gloriously ordinary lives. Jon shares a case study of innovation in a school. Emily shared that it’s when people who are not connected to the issue engage, and initiatives like Hilary Cottam’s Circle.

Find out more about the Festival of Social Science.