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Dame Philippa Russell: Living with Covid 19 and the aftermath – a personal perspective

We are in week 12 of the covid-19 pandemic, permission given for a first tentative exploration of the outside world. My son Simon and I both feel the pressure of his ‘shielded’ life. I admire neighbours who have settled down to weeks of social isolation. Simon’s usually busy life (and mine) have changed overnight. His daytime activities have gone. Chichester’s pretty streets look more like an empty film set than somewhere real people live. When we venture out, passers-by scurry past anonymous in masks. We feel very alone, and there is the real terror of what would happen if either of us or his wonderful support worker Richard got ill. I make a hasty mental note to update my own ‘contingency plan’! We may win the war against covid-19, but the aftermath will challenge us all.

Shielded or not, Simon, like many people with learning disabilities and autism, needs to go out. Government guidance permits us to have our regular walks, even have a little drive in the car. But on a Spring evening walk, we are stopped by the police and asked where we are going. Going out when ‘shielded’ is for our survival, not a luxury. We can’t get a home delivery and our daily routine means time-consuming cautious shopping, meticulous queueing and hand sanitisers.

Simon does not like masks. I realise that he feels cut off and needs face recognition for any conversations. I echo his wish to ‘see people smile again!’ But a forthcoming hospital appointment means staying safe and we practice with stylish masks made by a friend. We have missed too many appointments during the lock-down and we can’t wait any longer.

Walking home, Simon gazes longingly at the locked doors of his favourite community project. He misses friends and I miss my home in London! The days are long and tiring even if life is so limited. There’s dust on the pile of books that I meant to read, and the garden pond has more weed than lilies. It’s hard to get engaged when the future is so uncertain. At the end of the day, I have my own quiet moments sitting in the garden. Simon crosses another day off his calendar and asks if there will be holidays this year.

In the pandemic, we have learnt some good things about community and human kindness. But many of us feel we have experienced ‘house arrest’ and it’s hard. Now, with recovery in sight, we need urgent shared conversations’ about how we will live beyond the covid-19 crisis. Surely this is the ‘golden time’ to recognise the contribution of carers like myself to the ‘brave new world’ that we shall all be living in?

My final thoughts are that if we clap again on Thursday nights. we must surely clap for all our carers - why not ‘key worker’ status for family carers, with a badge and identity card to acknowledge our role? On VE Day, Churchill told us that we would need national solidarity in order to win the peace after a devastating world war! I have found and really valued that solidarity and the personal support from Carers UK and my local carers resource centre. Together, maybe, we can finally achieve the ‘parity of esteem’ promised by the Care Act 2014 and work as partners in achieving a better world for carers?

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