What needs to change for carers?

Emily Kenway, author of Who Cares, outlines what needs to change for carers and how we need to change how we view care generally.

View of older hands holding the hands of a lady lying down depicting care


Emily Kenway is a writer, researcher and former carer. Her second book, ‘Who Cares: the hidden crisis of caregiving and how we solve it’, was a finalist in the 2023 Orwell Prize for Political Writing. She is completing a PhD at the University of Edinburgh. Emily will be speaking at the Cambridge Festival next month on a panel titled How can we fix the NHS and social care. The event is in person and livestreamed. Here Emily talks about what prompted her Who Cares book and what can be done to help carers, at home and at work.

Q: What prompted your book?

A: When my mum got cancer, I became her main carer because she was single and other family members lived far away or had small children. I discovered first-hand how caring is made difficult by current political choices and social attitudes, and how desperately change is needed. Everywhere I looked, care was talked about as if it was solely a paid job, when in fact the vast majority of care is performed unpaid by loved ones, and they’re doing so in totally unsupported, impoverishing and heart-breakingly isolated circumstances. Most people should expect to be carers in the future and as things are today, it’s going to be a period of immense suffering – but it doesn’t have to be. I wanted to show what care is like today and make a case for bold and imaginative way forward.

Q: What is the main thing that needs to change in order for us to better support the carers that many of us will need or will become?

A: There are several changes we need, and the best chance we have of a better caring future is to understand that they are interconnected. I think and hope ‘Who Cares’ makes the case for ideas which are fully realisable right now, like changes to the work world so that we, as carers now or in the future, can have the rights and resources we need, and also changes that will take longer, like shifting our fear of neediness and mortality which underpins so much of the silencing of carers and care. If I had to choose one single thing, I would say that the key change is for each of us, every single person, to understand that they will likely be a carer, and to stop pretending that isn’t the case by relegating care, psychologically, to some ‘other’ – a worker, a woman, etc. This mindset shift radically undermines current political choices and opens up exciting new ways of addressing care, which I explain in the book.

Q: What practical help could employers and policymakers provide informal carers who need to keep earning?

A: Employers should do three things immediately: first, educate yourself about care – if you haven’t been there, you probably underestimate wildly the toll and impact it has on your employees (and, I remind you, yourself in future); second, do an anonymous survey of your workforce to understand how many people are currently affected by unpaid care and repeat it annually – the Harvard Business Review found that employers were wildly underestimating this, and also underestimating the impact external care commitments were having on employees’ work; third, introduce paid carer’s leave so that people who have unwell loved ones aren’t using holiday to support them nor losing pay. Relatedly, policymakers need to introduce a shorter working week for everybody (allowing it to be voluntary on behalf of employers will only lead to inequality) – this would immediately normalise part-time work and create a more sustainable work/life balance for working carers. We also need job protections so that if we have to take time off work due to caring responsibilities, our jobs are kept for us on our return – this is already the case for parental leave, so why not for the rest of carers?

Q: What one main thing could improve carers’ experience of the NHS and social care? 

A: I have nothing but respect for NHS staff, and appreciate the huge pressures they work under. I would like to see more recognition from NHS staff of the role and relevance of carers – after all, we are the people ensuring whatever they’ve prescribed or recommended actually happens. I am appalled how often I sit on panels or similar with people who’ve worked in the NHS who think of unpaid carers as irrelevant when we outstrip paid care workers by three to one and are the main way in which care occurs outside medical settings. On social care, I’d like to see more collaboration between both sides – the paid care workers, and the unpaid family/friend carers. We often end up pitted against each other, but our struggles are the same – we all want the right to be with loved ones, to have a good standard of living, and to have our skills respected. I’d love to see people working on social care policy integrating unpaid carers into their research and recommendations.

Q: What has the feedback to the book been?

A: It’s been an amazing experience – exciting, heart-breaking, and hopeful. ‘Who Cares’ was shortlisted for the Orwell Prize for Political Writing 2023 which is a huge honour and I think many carers will feel made a bit more visible by that. I have also received an overwhelming number of emails and messages since it came out from carers around the world, as well as speaking with people at signings. People share with me their suffering as carers, their isolation, desperation and invisibility – of course, I know that was the case, as a former carer myself, but every time someone contacts me, it has made me even more certain that ‘Who Cares’ needed to exist. Overall, it feels hopeful – I know lots of people still don’t want to engage with the topic, but I also know that ‘Who Cares’ is helping to change that, and bringing compassion and solidarity to carers along the way.

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