Hazel McHaffie

Rachel Clarke

Caring in a time of Covid

Yes, I know, I know … I went to sessions on this topic at the Hay Festival, and here I am again, attending more of the same at the Edinburgh International Book Festival. Sad soul. But for me it was well worth the element of repetition to hear the important messages spelled out so clearly by those who really know. We do have to learn from the horrors, and now is the time to do so. Just this week our First Minister, Nicola Sturgeon, has announced concrete plans to begin a judge-led inquiry into how things were managed in Scotland, by the end of this year. Sometimes, though, in the face of relentless coverage of the statistics and long term consequences, it can be hard to see beyond the negativity.

The line up of panellists included Dr Rachel Clarke (palliative care specialist and ex-journalist) and Kate Mosse (novelist and unofficial carer of three elderly relatives) again, but joining them was Dr Gavin Francis (Scottish surgeon and GP). The two doctors have both been working actively on the frontline throughout the last eighteen months, and deserved the spontaneous applause from the live audience. But they were quick to identify the reality: caring is a privilege.

Nevertheless, the deficiencies in the response to the impending crisis, and the slowness of the powers-that-be to mobilise appropriate measures to deal with it, did stir their anger. Indeed it was this pent up frustration that led to the books they wrote.

Much of what they said was known to me, but still shocked. And I was horrified to learn that, not only has the number of unpaid carers escalated colossally during the pandemic, largely because almost all official care stopped, but that they were left largely unsupported. As were young people with special needs, and those with dementia. What kind of a price have vulnerable people paid for this failure? The toll on mental health especially has been devastating, as we know.The full consequences will only emerge gradually.

On the other hand, it was heart-warming to hear that frontline workers had themselves been buoyed up by witnessing the best of human nature too. And as Kate Mosse said, it’s what we all want: a society that looks after each other, that cares, that pulls together. Dare we hope lessons will have been learned for next time? Those who work in the medical world seem sure of one fact: there will be a next time. Sobering thought, huh?

It’s been great to be part of this iconic Festival once again, albeit in a hybrid form this year. A big step up from the cancellation in 2020. And I personally salute all the teams working behind the scenes to make it work – almost without a hiccup this time for me! I guess the person who inadvertently broke a connection will be hiding their mortification in a dark corner somewhere. Come out, come out, whoever you are; all is forgiven.

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Love, life, death in a time of pandemic

Rachel Clark was a television journalist before training as a doctor – that probably helps to explain her brilliance with words and her laser focus on exactly what happened, and when, in the early days of the pandemic.

Her latest book, Breathtaking, spans the first four months of the ongoing Covid-19 pandemic, January to April 2020. At its peak, during that first wave, a thousand people were dying each day. And every single day the grit and devotion of colleagues astounded her. She says she has never been prouder of, or more humbled by, the NHS and its people, but that doesn’t stop her probing beyond the heroism, the sacrifices, to the core of what went wrong.

She knew it would be impossible, and probably inappropriate, to try to convey her inside experience to non-medical friends and family, so she used her laptop to vent her feelings. Writing became an anchor, helping to distil her fears, a compulsion that took her through the night and into the early hours of many a morning. Looking back over her insomniac’s diary much later she discovered that what she’d thought of as an unrelenting stream of darkness was actually illuminated by pinpricks of light. Acts of kindness and solidarity, altruism and selflessness, resilience and decency, shone through the storms, and they glimmer throughout the book which evolved from her midnight ‘scribbling’.

Rachel Clark graciously acknowledges the public’s generosity and sacrifice in withdrawing from the public sphere, foregoing so much that makes society and relationship valuable, in order to protect NHS resources.
Invisible threads of everyday sacrifice tie the world outside to the one within the hospital.

But from the outset, she and her colleagues watched with growing horror and incredulity, the UK’s casual approach to the coming tsunami … the effects of deficient supplies of PPE … delayed restrictions … the exposure of the elderly and vulnerable to risk … the appalling gulf between public rhetoric and supplies on the ground … the Prime Minister’s defence of indefensible behaviour when his chief adviser flouted the rules he’d helped to devise … And she’s haunted by the sense that we are all complicit in the betrayal; the alarm should have been raised sooner, been more insistent, more strident.

She is shocked too, by the spin put on the tragedy. When the UK had the third highest death toll from Covid in the world, and was the worst hit in Europe, senior government figure were trumpeting ‘success’!
How very cheap, how spectacularly expendable, one human life must be to them if the avoidance of tragedy is consistent with the deaths of nearly 27,000 people.
(
Since then, of course, the death toll has risen vastly – currently in excess of 128,000.)

For this palliative care specialist every person, every loss, every family, matters. And in her view, the only reason the NHS was not officially overwhelmed was because so much of its function was suspended. Real people suffered the consequences. Many felt abandoned.

The professional workforce too paid a heavy price. Entering the personal spaces of strangers steeped in the virus again and again involved massive risk.
The Covid ward is humid and restive. We are on the move, no pausing or lingering, with strained expressions and a twitchy hypervigilance that is as exhausting and stifling as the masks we wear. It is all around us, the virus. It coats our clothes, our hair, the backs of our necks, the keyboards we type on, the surfaces we touch. It hangs in the air, it drops on to our shoes, it floats and waits, ready to be inhaled by anyone too unwell to be masked up in a hot zone.
They endured appalling working conditions, worked ridiculously long hours, put themselves through agonising processes. Their own families suffered. Some professionals lived in hotels rather than put their loved ones at risk. Some gave their very lives.

And on top of that they were unable to relate as normal to those in their care.
Kindness, undeniably, is the glue that ensures patients feel safe and hospitals humane.
But now, everything human was taken away – contact, personal details, names, faces, relatives (the cruellest feature of all).
Covid, in short, necessarily compromises every instinct to deliver humane and compassionate care. It violates something at the heart of good medicine – and the cost to the team is profound.
All they could offer from behind the layers and layers of protection seemed …
grotesque, a parody of communication. It could not be less warm, and more wrong.
And even in extremis, as death approached, they could only clutch at the remnants of human contact, to ensure no one was alone for that final stage.
In the end, as death bears down, there is almost no situation that cannot be made better by someone reaching out, with love and tenderness, towards one of our own. What we have, in our grief, is each other.

Rachel’s own compassion and care and humanity, perfect attributes for someone dealing with people at the end of life in palliative medicine, pervade the book. And for her, words are the most powerful drug used by mankind.
No one knows this better than a palliative care doctor. When drugs run dry, when cure is no longer an option, I deal in words like my patients’ lives depend on it. Words build trust, allay fears, dispel myths, inspire hope. They clarify, challenge, encourage and console. Words leap beyond the constraints of masks and gloves and gowns. Titrated carefully, dosed just right, words can take a dying patient all the way from the depths of despair to a place of hope and even serenity … Above all, our word must be our bond.

In the midst of this revelation of the flaws and deficiencies that have characterised the pandemic, the pain, the frustration, the humility, the dedication, glimpsed in this soul-searching book, are themselves evidence of what is right with the practice of medicine. Beyond price, beyond value.

 

 

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Hay Book Festival

I’m like a pig in muck this week!! Hay Book Festival is online again. Wahey! They’ve already reached upwards of 2 million people, and I feel privileged to be one of those visiting and enjoying such thought-provoking and stimulating events. I’m immensely grateful to the team that ensures it happens. They’ve had more than their fair share of technical glitches unfortunately, but I think we’re all acclimatising to those kinds of issues in this era of Zoom. Puts our own mishaps into perspective.

In this first week, I’ve already listened to vaccine hesitancy, the effects of the pandemic, motherhood, grief, the first human cyborg (who has MND), deafness, adoption, racial discrimination … I won’t bore you with a rundown on them all, but three really stood out as exceptionally memorable for me. (Please excuse the quality of the photo – screenshot during the performances, so no time for finesse!)

The title, Life and Death with Covid, sums up one brilliant session. Dr Rachel Clarke, Palliative Care Specialist/author, who’s always good value, was in the chair and sensitively and confidently steered the conversation between herself, the legendary author/poet/presenter Michael Rosen, and a specialist in critical care and anaesthetics/author, Dr Jim Down.

The two doctors spoke eloquently about the impact of the pandemic on staff, and the imperative and willingness to care –  really care – for all their patients, be they serial killers or prime ministers, to the end of their lives. Their selfless dedication shone through. Michael Rosen spoke from the Covid patient’s angle. He survived 48 days in intensive care and 3 months in hospital, and compared the attention he was given to the love that drives a father to sit all night beside the bed of his sleeping son. The NHS, in his judgement, is the most ‘caring collective cooperative thing’ he could ever imagine – polar opposite of the Holocaust that killed so many of his relations. One of the most engrossing literary events ever. I simply HAD to buy all three books: Many Different Kinds of Love (Rosen), Breathtaking (Clarke), Life Support (Down). Reviews will doubtless follow on this blog! They arrived lovingly encased in red tissue paper too!

I’ve heard Ruby Wax and Alastair Campbell on the topic of their depression before – both appeared again this year with new books to talk about, but new to me was travel writer and teacher of creative writing, Horatio Clare, talking about his mental health experience.

In Heavy Light: A journey through madness, mania and healing, he has eloquently captured the reality of being sectioned/detained when he developed bipolar disorder, an action he believes saved him. And he really underlined the importance of listening to the patient and tailoring care to individual need. What an articulate and sympathetic speaker. I was riveted.

Then there was Rev Richard Coles speaking to psychotherapist Julia Samuel (the ‘Queen of Grief’ as Richard described her). He spoke eloquently of the devastation, and the powerful emotions of anger, guilt, emptiness, he has experienced following the death of his beloved husband David, who was an alcoholic as well as fellow priest. No empty platitudes or trite sayings or pious hopes from him! And what sensitivity he must bring to bereaved parishioners. Julia Samuel concluded with poignant accuracy that, though he is still grieving acutely, he is taking David with him into a planned future of ministering to prisoners where the effects of addiction are seen as their harshest. A wonderfully honest and moving conversation, laced with humour, about a subject that needs more openness and candour. I’ve heard Coles speaking before; here I think he was at his best.

To be continued …

 

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