Living with COVID19—a personal perspective

 Dame Philippa Russell has a long and distinguished history of championing carers and people with learning disabilities. She has a son, Simon, who is disabled so her professional life has always been informed by her personal experience. During the current pandemic, Philippa has co-chaired the Carers Advisory Group, which worked with the Adult Social Care COVID19 Task Force on   its recently published report and the Winter Plan. Philippa is a member of the TLAP board, representing Carers UK, of which she is the Vice-President.

I am a ‘veteran carer’ - 55 years’ experiences, good and bad! Now, in the ninth month of the COVID19 pandemic, I am not sure that I am on the winning side of the war. My son Simon and I both feel the pressure of our ‘shielded’ lives. Simon’s usually busy life (and mine) have changed overnight. His daytime activities have gone. We feel very alone, and there is the real terror of what would happen if either of us gets ill. Our daily routine means time-consuming cautious shopping, meticulous queueing, hand sanitisers and closed doors.

Simon does not like masks. He needs face recognition for any conversations. I echo his wish to ‘see people smile again!’ But hospital appointments mean staying safe and we cover our faces and brave the outside world. ‘Shielding’ sounds so cosy and safe, but it can become a prison. Many of us will need a ‘re-entry’ strategy to cope again with what once seemed very safe and ordinary lives.

Walking into town, Simon gazes longingly at the locked doors of his favourite day service, a community art project. He really misses his friends, the shared experiences and the sense of being part of a community. I miss my home in London and the days are long and tiring even if life is so limited.

In the pandemic, we have learnt some good things about community and human kindness. But many of us also feel that we have experienced ‘house arrest’ and it’s hard. Now, we need urgent shared conversations about how we will live through and beyond the COVID19 crisis. The government’s Adult Social Care Covid-19 Task Force Report and its Winter Plan have now been published and offer opportunities as well as challenges.

The Winter Plan asks that we should ‘put co-production at the heart of decision-making, involving people who receive health and care services, their families and carers.’ The task force emphasises the need to ‘find new and innovative ways of providing outreach, virtual contact, short breaks and wider support’.

TLAP has already published some COVID19 Stories of Promise which show how organisations, councils and communities have been adapting to the pandemic with some great, creative solutions to keep people connected. We need to continue to collect and share the evidence of can-do responses that will inspire, encourage and enable the world to open up again. So many disabled people and their carers are struggling because they’ve lost the wide range of community activities which they relied on. We desperately need a can-do rather than a ‘keep doors closed for safety’ approach, across the whole of the UK, so that people like Simon can be happy and fulfilled once more.


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