If you had told me six months ago that any of the support we relied was going to be taken away from us as a family (until further notice), I would have considered locking myself in my bedroom.
Ask me to home school ANY of my children = tears (there is a reason I am not a primary, secondary or SEN teacher)
Take away morning care for my son = crying
No more night carers = rocking in a corner
No more respite nights = whimpering
An end to date night = weeping
I would have thrown the mother of all tantrums and chucked every single toy out of my imaginary pram believing there is no way I could cope.*
Enter Coronavirus and Covid-19 and it was all taken away.
It was as though the anti-fairy-God-mother swooped in in the middle of the night on a broomstick and whisked away everything which was keeping us afloat.
All other priorities flew out the window along with our support. Protecting our loved one became our single focus. Suddenly there was a deadly virus roaming the streets and lurking in the touch and care of people dedicated to support us. Simply remaining Covid negative was our number one aim.
In one announcement we lost our inner circle of care, those people whose daily and weekly touched our family’s life. Physically, emotionally and practically. The pit crew who sustained us were stopped from entering our home. Then the second wave of loss came as we lost the voices and advice of the outer circle of specialists in the community and hospital.
The past 3 months has seen a peak of Covid-19 and an essential lockdown.
Families have hunkered down and survived. Research shows the majority of families have felt abandoned, isolated and overwhelmed as reported by the BBC.
But we can’t stay here forever. The virus isn’t going to completely disappear any time soon. So now we need to lift our heads and make a plan. We must work out the next steps, then have the courage and support to take them.
But we need guidance, clarity and hope. We need connection and people working with us.
We need help walking the covid-19 tightrope.
Firstly, to you incredible parents/relatives and carers looking after people with complex needs, this isn’t anything you haven’t done before. You assess risk every single day. You make difficult decisions about safety all the time.
Whether it is getting the car to go on holiday (when your child just doesn’t seem right).
Choosing a destination (close enough to emergency care).
Simply having a date night with your partner (and leaving your child in the care of someone else).
We risk assess, make judgement calls and clinically assess our child every single day – and night. You can do hard things. Although this feels bigger, we have lived in a world of life-changing decisions long before coronavirus turned up.
We need advice from the government nationally and locally for families shielding loved ones. We need support from health, social care and education which reaches into our situation. It is great charities like Well Child and the RCPCH are providing guidance but we need more. Families need guidance about how they care for loved ones with complex needs as safely as possible alongside the mechanisms of support to carry it out.
We need clarity about carers coming into our home.
We require training for us and our children’s carers.
We need PPE and the confidence to use it properly.
Overarching all of this is the confidence that professionals, with evidence and clinical knowledge, help us to make decisions which are sustainable. Help us connect with our inner circle of support once again.
Finally, those myriad of practitioners who support families with advice and expertise. The medical team, community healthcare, physio, OT, dietician, teachers, LSA’s, LD nurses and more – each one of us needs to reimagine how to connect with families. Covid-19 has given us a golden opportunity to take a deep breath and revisit our values. To reimagine our ways of working. We have a choice to either try and squeeze the old way of doing things into this new normal through contortion and manipulation, or we can dare to dream.
Maybe there are better ways to do things in a world with Covid-19?
Could collaboration, communication and co-production be at our core, in our policies and daily practice? This might be the time to make real change and connect with families who love people with complex needs in a new way. If professionals and parents were to unite our collective voice we might just be heard above the political rhetoric and promote real lasting change.
Alongside Sarah Clayton (CEO Simple Stuff Works) and Lucy Parr (Trainee Educational Psychologist), Born at the Right Time is training practitioners to step up and out. We believe together we can take this opportunity to #Bridgethegap and Reimagine communication and co-production with families in a post-covid world.
By grappling with the challenges, the difficulties and opportunities, we can create something better. Join us to reimagine a better future for everyone.
*I was right I couldn’t cope. Many of parents have (tip cap in complete respect). I was on my knees after 2 weeks of 24-hour care until an utterly awesome human-being agreed to live with us and help with caring.