Carer Lynn Williams reflects on the trauma experienced by unpaid carers during the COVID-19 pandemic.
Fear has been my constant companion over these long, lockdown months. Not a welcome companion, but always there – lurking in every corner, slithering into sleep, shrouding light and colour in a blackness which, at times, I can almost feel and touch. As sole carer for my husband, I wake up every morning with a gnawing anxiety; every day and every activity are risks to weigh up for fear of contact with a virus which is clever and utterly without compassion.
A recent work meeting forced me to face this terror head on – terror I have learned to live with over these long, lonely months. I could see the ways that I had developed my own armour and that I had become ‘uncomfortably numb’ – just to prevent my psyche from shattering into thousands of pieces. I was (still am) the last line of defence, trying hard to stop COVID-19 from getting to my clinically vulnerable husband.
Living during this pandemic has been like living in a horror film with no apparent ending. Unpaid carers have been a hidden and unappreciated frontline in an everlasting war. Until those in power acknowledge this, I cannot see how COVID-19 recovery will make any difference to me, to my husband, to over one million people now providing unpaid care, in every corner of our country.
There have been chinks of light – of hope – during this dark, dark period for our country. The Social Renewal Advisory work was one of these. We also have work to consider a minimum income guarantee and the Scottish child payment – all portrayed as radical policies for recovery. But the reality for disabled people, for unpaid carers, calls for far more – for urgent, far reaching action.
The reworking of Scotland’s social security system is not what many of us had hoped for. The Feeley Review of adult social care doesn’t immediately help people who haven’t had a shower for months or learning disabled adults who are utterly isolated, with no sign of services restarting properly. Life is nowhere near normal for far too many people and when you’re only just getting through each day, the current wider debate on Universal Basic Income (UBI) is one which may have little immediate relevance to you.
Yet, it’s a concept and a potential policy which provides a focus and a spot of light at the end of a long, dark tunnel. I have always believed that Scotland could be doing something with basic income policy for unpaid carers, if there really was the political will, and because of that belief, I was pleased to be able to talk about UBI and what it could mean for carers at the recent BIEN conference.
Hope is in desperately short supply just now but through BIEN, we had a series of events with an international audience which truly sought to nourish and build ambition for a better world. However, as we discussed in the ALLIANCE session, basic income alone is not sufficient to tackle the decimation of our economy and the societal impact of COVID-19. It provides a foundation stone for families, but the collapse of key public services during the pandemic – notably social care – hint at wider challenges ahead.
Scotland’s unpaid carers have been clear about what needs to change if there is ever to be an inclusive COVID-19 recovery. We’ve asked for carer specific recovery plans. Other ‘asks’ are not new – significant investment and flexibility in care, accountability, choice in how to use care budgets. Had this been the pre-pandemic normal, we may not have faced the heart-aching breakdown of social care over the last 18 months.
So, a recovery which leads to the kind of country which disabled people, older people and carers want to see must also include social care recovery. A recovery which sits alongside work to implement the Feeley Review. We must strive for social care which works with our families, with less bureaucracy and with power being shifted from huge, immovable public bodies to the families and individuals who need social care to live well.
Money helps, financial security for all is something we can all hang our hats on – but it is not enough. Not by any stretch of the imagination. Those who are thinking and creating recovery policies need to be open to those of us at the hard end of this current crisis. Shifting of power, and opening up the corridors of decision making is mission critical for COVID-19 recovery and for the advent of truly radical and positive change.
This piece is in response to the Health and Social Care Academy‘s panel discussion as part of the Universal Basic Income BIEN Congress (this link will take you away from our website) on Thursday 19 August 2021.