From the ashes, new dreams start

Lynn Williams, unpaid carer, blogs about caring, COVID-19 and about building new dreams and hope even as we struggle to understand the full impact of the pandemic.

There is no level at which the Corona virus pandemic cannot be seen as anything other than a catastrophic tragedy – a tragedy the likes of which we often see played out in less wealthy parts of the world.

This time, it’s on our doorstep. This time, it’s our families, our friends and colleagues. It’s our fellow citizens.  The impact is both direct and indirect and it is devastating. Dig deeper and there’s a hidden layer.  We are currently worrying – rightly – about the immediate impact of isolation and imposed vulnerability on the collective mental health of communities and our nation.   The crisis for some may wane in time. Some may get back to whatever normal looks like – for others though, the shadow of Covid-19 will be hanging over our heads for a long time to come.  That may be through continued isolation or it may be through deeper poverty or poorer physical and mental health.

Public and political enquiries later may assign fault and perhaps we WILL learn lessons (more on this later).  But in all of that future analysis of what we did do – what we could have done – I wonder if we will TRULY recognise that those hardest hit were those who already faced challenges most of us can barely imagine.

Disabled people, our BME communities, our older citizens – already battling structural barriers and inequalities, poverty and poorer wellbeing – are at the heart of the fall out, here in communities and in homes across the country.

Women at every level are deeply affected; they are more likely to be care workers, to live longer (and therefore live in care homes), to work in part time or lower skilled jobs, to be lone parents and to be more dependent on the benefits system.

And they are more likely to be unpaid carers.  There are almost 800,000 people in Scotland who look after and support disabled or sick loved ones.  If they are very lucky, these carers might get around £77 a week for doing that, but only if they meet a strict set of benefit eligibility criteria.  It’s around £10 a week less if you live in England and Wales.

Carers are more likely to be in poverty, to struggle in the labour market, to be ill as a result of caring.  They have been propping up ever expanding holes in the care system for a long time.

Unpaid carers are the unacknowledged key workers sitting at the heart of the COVID-19 storm.  They are protecting loved ones and trying to protect themselves because there is probably no safe place for their loved ones should they get sick.   As an unpaid carer for my husband, that deep fear haunts many waking nights.  Where is the safe and suitable replacement care for him should I contract the virus? Worse still, what if I died?

The emotional and physical toll of having to provide additional care during this pandemic, as highlighted recently by Carers UK, is made worse by the further contraction of social care; the loss of schooling for disabled children and particularly for those with multiple and complex needs.  Proper breaks from caring have all but vanished; carers face deeper poverty and financial distress as they cope with the additional costs associated with isolation e.g. heating, food delivery, purchasing hygiene equipment such as hand sanitiser and PPE, often at vastly inflated prices.

The survey by Carers UK “Caring Behind Closed Doors”, starkly acknowledged what many of us have felt keenly over the last few weeks – the contribution of unpaid carers has been largely taken for granted.  That not one government has proposed an increase in Carers Allowance to at least the level of Statutory Sick Pay is a stark illustration of this point.

I speak to carers from every part of the UK – they feel abandoned, they feel unvalued.  They have been left to deal with unimaginable levels of stress; they have to deal with their children self-harming after losing the stability and support of school; they have had to make the tough decision to stop formal support for family members to protect them, without knowing if they will ever be able to reinstate those services in the future.  They have had to take risks caring for multiple family members when formal social care services have let them down – even if they themselves are in one of the ‘at risk’ groups. Over half feel that they will ‘burn out’ over the coming weeks.  What happens then?

I have come close to that tipping point myself – I have been anxious, scared and have felt utterly alone.   My own fear is magnified when my husband looks on with terror in his eyes – as he sees himself in every older or disabled person who dies as a result of this pandemic.   At times, the pressure has felt like a heavy weight on my shoulders.

That fear is living in the homes of disabled people and unpaid carers across Scotland and beyond.  We are left to feel helpless when we have no say in the policies and responses which so profoundly affect every aspect of our lives.

And now, we look towards a ‘new normal’ (whatever that means). We hear phrases like ‘a chink of light’ as we move away from the horrific peak of this horrific disease.  Our political leaders talk about the future – some more honestly than others.  And boy, is that honesty important.

Honesty about post-COVID reality must take into account the policy failures which preceded the crisis – the inequalities that that have been magnified by the pandemic.  And honesty about all of this must be accompanied by hope.

Hope is needed – carers must be given a reason to keep fighting and to keep caring as we all work through a deeper understanding of the impact of COVID-19 for our economy, our public services and our wider, national wellbeing.   A new normal requires a new politics and proper, total and open inclusion of those hardest hit in shaping the way forward – in shaping their own future.

The title of this piece comes from a song about love and kindness – a song which is both lovely and full of hope.  We cannot continue as we were before the COVID-19.  We must build new dreams, a new vision that sees everyone in our country as being valued and supported to live their best life.

When we say lessons will be learned, we must mean it.  It’s time for human rights and wellbeing to be at the heart of everything we do.  From the ashes, new dream start.