Blog by Dame Philippa Russell, DBE, a family and friends member.
This is part of the Future of Social Care series of members’ thoughts and views.
I am a ‘veteran carer’ (55 years experiences, good and bad)!
But in the 18th month of the covid-19 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) changed overnight. So many of his daytime activities vanished and grateful as we are for the gradual recovery of people and places, there is still the real terror of what would happen if either of us got ill.
Simon does not like masks. He needs face recognition for good conversations. I echo his wish to ‘see people smile again!’ But 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. For now we tread carefully.
In the pandemic, we have learnt some very good things about community and human kindness.
But many of us also feel that we have experienced ‘house arrest’ and solation and it’s hard.
Now, we need urgent shared conversations’ about how we will live through and beyond the covid-19 crisis.
The Government will no doubt publish a 2021 Winter Plan and I would like to see people with learning disabilities and their families contributing to the big conversation that we need in order to survive the winter and of course to finally reform social care.
What would ‘Recovery’ from covid-19 really look like for myself, my son and Learning Disability England members?
The 2020 Government’s Winter Plan asked 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 2020 Adult Social Care Covid 19 ask Force emphasised the need to ‘find new and innovative ways of providing outreach, virtual contact, short breaks and wider support’.
So, as a way of moving forward to recovery and in the true spirit of co-production, can I suggest that we create our own ‘Covid Recovery Collection’?
Stories matter and good things always happen from small beginnings – so can we provide the can-do- evidence that will inspire, encourage and enable the world to open up safely again?
Maybe we need to change the language when we talk about social care. TLAP, with Making it Real, underlines the importance of real communication. The Germans, reforming their social system a decade or so ago, talked about ‘Lebenshilfe’, getting a life.
We have lost so much ‘life’ over the past 18 months, but let’s see that loss as an opportunity as well as a challenge.
The Paralympics start in Tokyo next week – challenge and opportunity for many disabled people.
But as a competitor, Tony Parsons, said to the Sunday Times today, we still need an international campaign to end the invisibility of so many disabled people.
Many of us did feel invisible during the pandemic but now is our opportunity to come forward and share in planning a different future. What we say can become what we do.
This month is the anniversary of the most frightening night of my life.
In the last year of the Second World War, aged three years old, I saw my house bombed – everything destroyed, crushed under rubble.
I remember standing screaming until a kindly emergency worker took my arm. ‘Don’t worry love’ he said, ‘sometimes when things get knocked down, they get rebuilt better!’
He was right, the house was rebuilt ‘better’ and the UK got the NHS and the welfare state.
In many ways Covid 19 has been a third world war. But remembering my house being rebuilt and the NHS being created with no money whatsoever, I have hopes for the future.
Let’s become visible and codesign both the social care future we want and importantly speak up about how we recover from Covid.
As my war time rescuer said, ‘We can rebuild better’.