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Living with Covid-19: A Carer’s Perspective

Dame Philippa Russell DBE has been caring for her disabled son, Simon, for over half a century. Formerly Chair of the UK Government Standing Commission on Carers, she was made a Dame in 2009 “for services to Disabled Children, Young People and Family Carers”. Here, she writes about caring during Covid-19 and the road that lies ahead for the UK’s carers.

It is Carers Week 2020 and we are in week 11 of the Covid-19 pandemic. Life for the UK’s 6 million carers has changed overnight. My son Simon and I are feeling the pressure of his ‘shielded’ life. I admire my neighbours who have settled down to weeks of total social isolation and wish we could do the same. But, as is the case for so many other carers, it’s not that simple. Simon’s daytime activities, his precious art, his friendships through the local church, and his fitness classes have all gone. We feel very alone, and there is the very real terror of what would happen if either of us or his wonderful support worker Richard becomes ill.

Life under lockdown is different for all of us who care. Walking through Chichester’s pretty streets, people flit past us in masks and gloves. Simon doesn’t like masks. He needs to see faces in order to properly understand conversations. He asks repeatedly when we can see ‘real people’ again. But the world has changed and we need masks for a long-delayed hospital appointment. Masks seem a small price to pay for the reopening of the NHS for families living with long-term conditions and disabilities that need regular monitoring and treatment.

We hope that we are winning the war against Covid-19, but the aftermath will challenge us all. We have learnt some good things about human kindness and how local communities can come together. But many of us feel also that we have experienced ‘house arrest’, and we have so missed family and friends and it’s been hard. And, of course, we have seen challenges in our care homes and I feel passionately that we have to recognise, support and celebrate the many care workers who actually became part of our own extended families. Carers – in families and in the care workforce – must now work together to persuade Government and others to finally rethink what we mean by 21st century social care.

Covid-19 has brought major financial, personal and practical challenges to carers. Now, we must be part of the ‘recovery’ process as (hopefully) services and support reopen. Carers UK’s report, Caring behind Closed Doors, clearly sets out the challenges faced by carers living through the Covid-19 pandemic. Living well in lockdown has been hard. But Carers UK reminds us of the importance of solidarity, the value of carer networks and peer support and the importance of carers having a voice in any Covid-19 developments.

The crisis is not over. We must be part of the big debate about how we survive in a world where Covid-19 remains a long-term threat. My final thought is that if we clap again on Thursday evenings, we must clap for all our carers why not give ‘key worker’ status to family carers, and let them carry an identity card? Let’s celebrate our role and wave to prove ‘we are worth it’.

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