When the story of the pandemic is finally written I hope that one of the chapters in that tome will be the recounting of how as individuals and as a society we have dealt with death and dying. Today is World Hospice and Palliative Care Day which provides an annual opportunity to reflect on the importance and significance of palliative care in societies across the world. Scotland is blessed by having a level of palliative care provision and excellence rarely matched elsewhere, even if we have fallen short of our aim that by 2021 all who need and require palliative care would achieve its easy access. But what can we say of palliative care during the pandemic?

“Without the skill and quiet professionalism of the palliative care nurse none of us would have got through what we have just experienced.”

Those were the words of a care home nurse at the height of the first wave of the pandemic. They mirrored the experience of dozens more. There was and still is a real sense of palliative professionals wrapping their arms of support around social care and health colleagues in care homes across Scotland. Where others talked, they walked in and worked in honest care partnership. It was my privilege to take part in weekly then less frequent virtual calls with palliative care colleagues from across Scotland and I can lay testament to the truth that some of the real unsung heroes of the last few months have been the women and men who work in palliative care and palliative medicine in both our hospitals and in the community. Their lack of recognition is perhaps itself illustrative of the discomfort of wider society in relating to issues of death and dying.

Today is an opportunity to reflect upon the criticality of palliative and end of life care to thousands upon thousands of people across our society. For me personally it underlines the importance of recognising that access to good palliative care should be considered as a fundamental human right in much the same way as we recognise that access to health in general is a human right. Last year I argued this case in a session at the Scottish Parliament stating that the way in which we care for and support those who are dying is as important as the way in which we care for and support those who will go on to recover and live through any illness. I’m not at all convinced we are there yet!

If we are able to prepare for our own death, then we engage upon the most person-centred activity we will ever undertake. Being in the presence of those who are dying teaches us that every death is unique and individual and that the art of such presence is to learn to mould your care to the needs and wishes of the person who is dying. It is to learn the lesson that silence speaks more than sound, that touch teaches more than restraint, that our hearts cradle hope. There is no textbook on the last days and hours of life albeit that we recognise the signs and symptoms of life ebbing away as the body shuts down and breath departs. Every death is unique and the care of those who are dying requires skills of empathy, compassion and alongsideness which are nurtured over many years.

If it is an overstated truism to say that death encourages us to live our lives to the full then it should also be transparent that we all of us need to learn how to die well. Palliative care is not just about the last few moments of breath but the times in which we are supported and cared for in the days, weeks and months before we die.

But of course, as a society we have never really been comfortable with talking about never mind planning for death. Death is always something that happens to someone else and we let it into our head only when the death of those we love, or a person of our own age reminds us of our own fragile mortality.

It is too early to say what the pandemic experience will mean for our collective understanding of death and our ability to be more skilled at living in the face of our own dying. For some undeniably the experience has been one of acute pain where we have been prevented from being at the bedsides of loved ones, have been unable to say goodbye and be present with touch and tear. For some it has been an experience which has robbed them of precious time to spend with others and do all that was planned as they have lived with terminal illness in a world locked down on loving and togetherness.

There are many things we need to learn to do better and differently. There should never be any excuse or reason for denying the presence of family and loved ones (properly protected) in the days before and at the moments of death. There can be no justification for allowing people to die without those they love and want beside them – even with the caring professionalism of strangers beside them – for that is a loneliness we can never end. We have to do better at recognising that end of life care in care home or hospital is not just in the final hours when someone has lost so much of the spark that is their self but, in the days, and weeks before. We have to get better at balancing risk with love, presence with absence, quality of life with quantity of life.

But over all of this the pandemic and its daily echo of mortality as numbers of lives lost etch themselves into our hearts, should also teach us the essential truth of palliative care. We all of us should be better at preparing and planning for our dying and the last days of our living. That is what anticipatory care planning is all about. It is the recognition that if we are able, planning our own death is as important as the plans we make for the birth of new life into the world. Tragically the abuse of Do Not Resuscitate forms and their indiscriminate, ageist application by some during the pandemic, has damaged the concept of planning around dying. But the ground must be recovered because a life which does the work of death before the moment of dying is one that is undeniably more settled and peaceful for both the person and those around them.

I am reminded of this truth whenever I read the words of those who are dying. Now lest anyone accuse me of simplistic naivety I have been around death long enough to know that moments of quietist peace are balanced by times of angry fear and raw rage. Death can be terrible and terrifying in equal measure to its ability to be peaceful and calm. But as possibly one of the most important things we will anyone of us do then we owe it to ourselves and those we love to be prepared.

I have seen over the years that dying can create new life and family restoration, it can bring about healing and forgiveness. Past experiences are seen through a new prism of priority and what truly matters. Dying moments can be our best time, they can gather up the story of our living and loving into a gift of touch and solidarity that nothing can equal. That’s why we owe it to all to be present at times of death. That’s why we owe it to all to give time in the weeks and days before death. Honesty grows slowly in ground which has been fallow but its fruit is a memory whose taste remains forever. That is what good palliative care is all about.

Over the years as I grew up, I came to love the acidic and wise wit of the Australian Clive James. After being diagnosed with leukaemia and emphysema in 2010, James said that his terminal diagnosis led him to “start saying goodbye” through his poetry.

He captured the pain and agony of departure, of planning and preparation in his usual witty style in a poem called Japanese Maple, which is about a tree given to him by his daughter. In it James adores the tree’s soft presence in the back garden of his home, yearning to live until autumn in order to see its leaves “turn to flame”.

Japanese Maple

Your death, near now, is of an easy sort.
So slow a fading out brings no real pain.
Breath growing short
Is just uncomfortable. You feel the drain
Of energy, but thought and sight remain:

Enhanced, in fact. When did you ever see
So much sweet beauty as when fine rain falls
On that small tree
And saturates your brick back garden walls,
So many Amber Rooms and mirror halls?

Ever more lavish as the dusk descends
This glistening illuminates the air.
It never ends.
Whenever the rain comes it will be there,
Beyond my time, but now I take my share.

My daughter’s choice, the maple tree is new.
Come autumn and its leaves will turn to flame.
What I must do
Is live to see that.That will end the game
For me, though life continues all the same:

Filling the double doors to bathe my eyes,
A final flood of colors will live on
As my mind dies,
Burned by my vision of a world that shone
So brightly at the last, and then was gone.

© Clive James, 2014

Donald Macaskill

 

 

If the weather allows this weekend I will hopefully escape the house and get into the garden to start to prepare the soil for the seasonal planting of bulbs. I’ve always loved gardening and open spaces, perhaps it’s me getting in touch with the Hebridean genes of ancestors who farmed the land, even without their skill and ability. Even when I have been in a place without a garden I have always wanted green life in my space. This time of year, in particular, is one that gives me a sense of the natural rhythm of existence, as planting bulbs kindles my inner hope for renewal and rebirth after the anticipation of the deadening and bleakness of winter. But of course, as any gardener knows only too well the quality of the resurrection of vibrancy in the spring, the depth of colour and vigour of harvest, is always conditioned by the soil and its preparation. You cannot sow hope in rotten soil.

On Wednesday along with colleagues I will be starting a three-day ‘Homecare Festival. It is an attempt to focus on the astonishing work of care and support that happens in the heart of our communities. On any one day of the week there are tens of thousands more people being cared for and supported in our communities than in our care homes and hospitals combined. They are being supported to play their part as full citizens of their communities. It is a care and support that gives them independence and freedom, meaning and purpsoe, contribution and value. Yet the homecare sector is one which is often ignored and rarely recognised. Never has that been more true than during the last few months of Covid19. Despite attempts it has been rare for the media to tell that story or focus on what has been happening in our communities. Perhaps understandably but no less inexcusably our focus in society has been on events in care homes and hospitals, and not in the homes beside our living. This needs to change.

In the last few days as I have prepared for the Scottish Care Homecare Festival, I have read report after report detailing the silent and invisible pandemic which has been affecting our old and disabled in communities right across Scotland.

At the start of the pandemic tens of thousands of packages of support were withdrawn – in part by local authorities seeking to prioritise resource and in part by families who feared that staff going from home to home would bring in the virus. The effect of these interventions is only now becoming clear. A couple of weeks ago a homecare worker wrote to me and detailed some of what she was witnessing and seeing. She spoke of older folks she had known for a long time showing visible signs of decline and deterioration; of a gripping sense of isolation and loneliness because with restrictions some people living with disabilities were cut off from friends and family; she recounted the growth in cases of body sores because folks had become immobile without exercise and unable to go out into the community; and most worryingly she told of the dozens she knew whose mental health had been shattered by lockdown. The stories of thousands of individuals who receive homecare supports will not often be heard or told but their pain during the pandemic is no less real for the lack of telling.

We stripped away thousands of packages of support and it is clear as we start the possibility of yet more restrictions moving into autumn and winter that many of these have not been restored. Some undeniably because family are still caring because their work has not re-started. But I fear that many more have not been re-started because of a decision to save money and a presumption that if people coped during the pandemic then they can cope now. I have heard such folly voiced and foolishness it is indeed. If for no other reason we have to reckon in that calculation the truth which tells of a 25% increase in ‘excess deaths’ in our communtiies of people living with dementia, diabetes and orher conditions.

Even before the pandemic homecare in Scotland was in crisis, it was rooted in a rotten soil. That rottenness was for many reasons. Chief amongst them was because we have failed to embed ground-breaking legislation which gave citizens control and choice of their care, instead the ‘system’ has held on to its power and resource by refusing to inform, to give people control over their budgets, and to really empower people to take control of their lives. The system has played the game of ‘self-directed support’ but not released its spirit, vested interest has cut off the shoots of real change before they could flourish.

Even before the pandemic we witnessed the perversity which comes from presuming that care can be delivered in fragments of time. Across the country there are packages of care counted out in 15 or 30 minutes created by number checking commissioners of care without regard to the urgent need for people to be treated as human beings rather than coins in a machine. There is no way one can deliver dignified, rights-based care and foster and nourish relationships in slivers of time.

Even before the pandemic we treated our frontline care workforce shamefully. Local authorities whilst boasting of their own Living Wage Employer and Fair Work practices bought care on the cheap by drawing up contracts with care companies knowing that their allocation of resources prevented those organisations from delivering fair terms. And to add insult to injury the same authorities introduced electronic monitoring systems to effectively ‘tag’ frontline carers so that they could be stalked and controlled.

The pre-pandemic state of homecare in Scotland – and therefore by volume – social care as a whole was shameful, pathetic and rotten. And it still is. Radical change is needed. If we are to flourish and come to a spring of renewal the soil needs to change and the system needs to be overhauled.

So, at the Homecare Festival I hope we will hear of a vision which will be about giving control and power to the citizen who is supported and who uses care rather than to commissioners and bean-counters. I hope we will hear of a vision where workers are trusted and given autonomy, not clocked and checked at every turn. Where terms and conditions are resourced for equality and fairness rather than a two-tier system where local authorities look after their own first and others get the fag-end of attention and support. I hope we will hear a vision where prevention rather than reaction is at the heart of the packages of support we create. And most of all I hope we hear of a vision which adequately resources the care of people in their own home rather than seeks to buy care on the cheap. All of this would show we care about care rather than empty slogans.

At the heart of all this – as we enter a Covid autumn and winter, I hope that when we plan, we remember that many of the thousands of family carers who took over care or carried on care without support are absolutely on their knees. Families are exhausted, the act of 24/7 caring has spent and drained them. They urgently need support especially where traditional day services and respite opportunities have been stripped away during the pandemic. We need to critically re-prioritise homecare and seek to invest more not less.

Across Scotland today there are thousands of people in urgent need of support to rehabilitate their physical bodies after months of decline, there are hundreds in need of psychological and emotional support after isolation and emptiness; there are yet more in need of being made to feel that they matter, that they are noticed, that they are valued.

There is much talk of winter planning –but if we do not plan to tackle this pandemic in our communities and in the homes of those who require support and care then we will reap a terrible harvest of regret in the spring. We need to renew the soil, replace the rotten practices of the past with refreshed vision and humanity. We can only sow hope and healing in conditions that allow it to grow.

The great Irish poet Derek Mahon died on Thursday night. He was a poet of his time asking uncomfortable questions to those who would rather not hear. I think homecare asks us the same. We can go through the next few months choosing to ignore the silent pandemic in our streets, in the homes around which we settle our living, or we can open our eyes to create a vision of a better way of caring for and upholding one another. We can collude with the ‘old conspiracy’ of staying as we are, settling for the soil we have or we can create a fresh hope for spring because the truth of homecare around us should surely ‘exact more interest than casual pity.’ Mahon says it all in his brilliant poem  ‘Spring in Belfast’ and its last stanza in particular.

 

“Walking among my own this windy morning

In a tide of sunlight between shower and shower,

I resume my old conspiracy with the wet

Stone and the unwieldy images of the squinting heart.

Once more, as before, I remember not to forget.

 

There is a perverse pride in being on the side

Of the fallen angels and refusing to get up.

We could all be saved by keeping an eye on the hill

At the top of every street, for there it is,

Eternally, if irrelevantly, visible —

 

But yield instead to the humorous formulae,

The spurious mystery in the knowing nod;

Or we keep sullen silence in light and shade,

Rehearsing our astute salvations under

The cold gaze of a sanctimonious God.

 

One part of my mind must learn to know its place.

The things that happen in the kitchen houses

And echoing back streets of this desperate city

Should engage more than my casual interest,

Exact more interest than my casual pity.”

 

Donald Macaskill

To find out more about the Homecare Festival from Wed 7^th to Friday 9^th  see https://scottishcare.org/cah-conference-2020-2/

Today the 1^st October marks the 30th Anniversary of the International Day of Older Persons. It is a United Nations event which focusses on continued age discrimination across the world and which this year, also the “Year of the Nurse and Midwife”, seeks to highlight the role of the health care workforce in contributing to the health of older persons. In doing so it seeks to give special recognition to the nursing profession and to give a primary focus to the role of women in health and care.

When these themes were decided some time ago no one could have imagined that we would have faced the traumatic year that we have had and are still experiencing. It has been a year which has underlined the need to focus on older people not least because of the appalling truth that the majority of the million people who have died as a result of the Coronavirus pandemic have been aged over 75.  At different points over the last few months we have had occasion to reflect on the existence of unequal treatment of those who are old in the way in which society has responded to the pandemic. At the start we had casual careless talk describing Covid19 as a ‘baby-boomer harvest’, then we had questionable ethical frameworks which envisaged age to be the main criteria to use in any decision to withhold treatment should resources become restricted, and most recently we have heard of suggestions that we should ‘lockdown the old’ in order to let the rest of society get on with life.

Our attitudes to older age, whether positive or negative, are, I believe deeply influenced and shaped by our experience of older age in our early years and upbringing. It is those experiences which will to a greater or lesser extent embed within us a belief that older age is something that continues to have value and offers contribution, or alternatively that we associate older age with deterioration, incapacity and a lack of creativity.

I have mentioned before in this blog my Aunt Effie from Skye. When I think of age, and older age, I think of her. She was a character who stood physically tall and strong, intellectually robust and rooted, at one and the same time melancholic and reflective, fun and frivolous. I marvelled at her daily consumption into her nineties of the written word from novel to textbook, from newspaper to magazine. I was left enthralled by her forensic ability to trace her family tree back three hundred years, a feat achieved in the pre-internet age through telephone and letter – and all at the age of 95. So, for me age has always been a chronological clock that granted the individual free expression, space and time, that blossomed creativity and insight. That is not to deny my own personal awareness and family truth of those who have been limited and imprisoned by dementia and decline, whose lives have been shortened by the lostness of disease and whose living has spoken of sadness and confusion. But overwhelmingly older age is for me a positive characteristic.

So it is that I have always been very fond of the brilliant iconoclastic poem ‘Warning’ by Jenny Joseph which at one stage was the most popular poem in the UK. You might know it: –

“When I am an old woman I shall wear purple
With a red hat which doesn’t go, and doesn’t suit me.
And I shall spend my pension on brandy and summer gloves
And satin sandals, and say we’ve no money for butter.
I shall sit down on the pavement when I’m tired
And gobble up samples in shops and press alarm bells
And run my stick along the public railings
And make up for the sobriety of my youth.
I shall go out in my slippers in the rain
And pick flowers in other people’s gardens
And learn to spit.

You can wear terrible shirts and grow more fat
And eat three pounds of sausages at a go
Or only bread and pickle for a week
And hoard pens and pencils and beermats and things in boxes.

But now we must have clothes that keep us dry
And pay our rent and not swear in the street
And set a good example for the children.
We must have friends to dinner and read the papers.

But maybe I ought to practise a little now?
So people who know me are not too shocked and surprised
When suddenly I am old, and start to wear purple.”

There is a delicious irony in that when she grew older Jenny Joseph was asked if she would start wearing purple anytime soon, to which she replied, “I can’t stand purple. It doesn’t suit me.”

Today as we reflect on what active and healthy ageing is all about – even in the midst of a pandemic which threatens older age – I think it is time for us all to start to wear purple. It is time to turn upside down the conventional assumptions about age and challenge the prejudice which devalues older age and puts youth on a pedestal. It is time to shout down and decry the subconscious discriminatory presumption that the old are incapable of individual choice and decision, of creative contribution and radical change.

On too many occasions during our pandemic response we have treated those who are old with an obscene paternalism and syrupy protectionism which ignores their intelligence and capacity, their autonomy and energy. We have talked about corralling residents in care homes into units to protect them; we have failed to ask and give voice to those whose lives we have restricted and whose capacity for consent we have removed; we have done to rather than working with. Even today we see this paternalism in the desire of some politicians and commentators to rush to become the jailers of the elderly on the pretence that we must protect those most at risk.

The old are not passive passengers in life but they are the living witnesses of years of hard knocks and experience. Age enables in many the ability to nurture the humility that comes from error and failure and from that ground to grow an honesty and sensitivity to others. We ignore that insight at our peril as we repeat the mistakes of the past in every passing moment.

Stepping into the future with our older citizens, wherever they live in our communities, whether alone or with others, is about making a commitment that no one will be left behind, no voice will be unheard because it has lost its strength, no contribution will be dismissed because it is articulated by age.

To be valued, to find a place, to be able to give, to contribute, to participate are fundamental to our health and well-being. Healthy ageing is not about keeping simply the body and the frame of skeleton alive, it is about enabling the passion and power of age to express itself in the whole of our lives and communities. So, as we all grow older in Scotland, I hope we can also tap the potential of every individual in order to maximise the health benefits which come from feeling you can still make a difference.

So, in your place of home, in your place of work, in your place of relaxation, think today about how you can include all the generations, and value especially the gifts, abilities, capacities of those who are older. Think not just about how we protect and keep safe but about how we listen to, learn from, allow to grow and critically allow older age to disrupt and contradict.

Let us all therefore work together to step into a future where every older person can find their place to give, share and be. Let us all  wear a red hat that doesn’t suit and learn to kick over the traces of conformity! It is time for all of us to start to practise for the days of purple.

Donald Macaskill

 

 

On Monday it will be 200 days since March 12^th/13^th when the majority of Scotland’s care homes shut down in order to protect residents from the emerging threat of coronavirus. It is a point in time which comes as the seasons change from a late summer into the shortened days of autumn beckoning in the coldness of winter. Spring and summer have been and gone and the world as we knew it at the start of the year is unrecognisable. These have been days of real pain and emptiness for thousands, and of waiting and yearning for countless more.

I feel it is an anniversary of time which needs to be marked and which should cause us to pause and reflect on how we should be planning and preparing, both practically and psychologically, for the seasons and days to come.

Since the first days of spring when Coronavirus started to reap its harvest, we have lost countless thousands across the country to this virus. We have learnt many lessons taught us in a school of pain and cruelty, sadly some have come too late for the knowing and others have been appreciated too slowly. The daily statistics have become like an inexorable tick of a clock with numbers increasing every day, yet their regular recounting hiding the true story of thousands whose lives have been changed for ever.

As we remember 200 days, we know that there are too many who have lost their lives before their time, too early for parting, too soon for absence. We know that there are thousands who have not been able to be present, to sit alongside loved ones to say goodbye, to hold a hand and caress a face, to wipe a tear and simply to be silent before endings. We know that there are thousands who have not been able to celebrate lives well lived, to spark memories with others and laugh and cry together in funeral and farewell. This has been the unbearable cost of these days.

During those 200 days there have also been those struck down by the virus who have recovered, both in care home and community, but who are marked by the legacy of the disease in a way that has forever altered their living. What has become known as ‘long Covid’ is a set of conditions and a legacy of illness, that we are only now beginning to appreciate, and which will result in extensive need for rehabilitation and recovery for countless years.

So, there has been no shortage of emptiness drained from life and community in the last 200 days. The emptiness of grieving, of lostness and aloneness. There has been the emptiness felt by those who have struggled with the full reality of lockdown, whose mental health and self-esteem have been shattered and diminished; whose hopes and aspirations for their lives have been set aside; whose businesses and careers have been wrecked or abandoned. This has been six-months of real desolation for too many – and yet for so many it has been pain endured in silence, in absence, in hiddenness and on the edge of noticing.

These have also been days of waiting. Waiting to return to normal only to learn the language of a new normal; waiting for life to re-start and living to re-open only to discover a reality unfamiliar and unrecognisable; waiting for exam results and university to start only to experience the pain of anxiety and a strange new beginning; waiting for furlough to end only to be told of redundancy and loss of role; waiting to be re-connected, for shielding to end and encounter to start; waiting for a tomorrow which feels more like our past.

200 days which have changed us all. 200 days which have brought out the best of humanity, have shone a light on the exhaustion of love and giving, but have also witnessed the predictability of ambition, selfishness and frustration.

So, what of the future. As we sense a slipping back into the inevitability of more restrictions, the fear of a return to a pain which is now one that we know all too well, a diminishing of the loss of hope – what now?

I have held many conversations over the last 200 days and in the midst of sadness and emptiness, the characteristics and emotions that have struck me the most, whether on the part of carer, manager, family member, supported person or care home resident, has been a sense of determination and hope, of energy and commitment of care to the other given to the point of exhaustion, of a deep yearning to survive and do better in the midst of the waiting and the absence.

So, the next 200 days can and must be better even though they may be harder – for if we do not believe that, then the sacrifices and loss of the former would be too much to bear.

We need to plan and prepare to a degree and extent which we have never before attempted. Of course, I am not naïve. I do not imagine that even with the best precaution and best planning that we can prevent yet more pain and yet more damage from this virus. But whether it be by getting a testing system that really works rather than promises and fails to deliver, whether it be through robust practice in terms of infection control in our communities and care homes, whether it be through supporting those on the edge of despair and hopelessness in our communities, whether it be through simple acts of neighbourly kindness,  then we can build on what we have done to prepare better for tomorrow.

And some of my personal hope would be:

That we recognise that we have to create opportunities for family members to better re-connect with their loved ones in care homes. We know the desolation and emptiness; we have heard the cries of lostness and have seen the signs of deterioration and decline caused by enforced absence and the loss of touch and contact. Whether it be through extending the time for visits, better resourcing care homes to have additional staff and volunteers to support visiting, by the use of testing to protect visitor and resident, we are all of us determined to learn and improve. We all of us need to make the next 200 days better and more connected.

That we really accept that we need to start to prioritise what happens in our communities as much as in our care homes. There is a growing awareness of all those who have lost their lives in our communities both to Covid and more significantly to other conditions in the last 200 days. We need to make sure we do not remove the homecare and supports which are the lifeline of so many as we face challenge of resource and workforce into the winter. We need to recognise that we have depended on family carers who are now exhausted and drained and cannot face the future without respite and recovery.

That we recognise that just as it was in March, so it is in October, that the first line of defence against this virus is the individual action and responsibility of every citizen. We need to rediscover a collective solidarity which strengthens us to sacrifice our freedom and intention in the service of and for the protection of others who need our loving and caring to be seen in our actions.

That we develop a testing system to protect all whether young person or old, whether care home resident or worker, whether schoolteacher or student, homecare worker or NHS staff member. The imperative of using testing as a protection has never been louder but so too is the importance of recognising that it is not a panacea merely a critical tool in the battle we are engaged in.

That all who can will take up the opportunity to be vaccinated for the flu recognising the real risks of overwhelming care and health systems in the weeks ahead.

That we recognise that there are thousands of staff in care home, community and hospital who are not simply weary but drained and exhausted, and that we do not just speak of support but show it in actions both large and small to alleviate, recognise and reward.

That we do not lose hope and that we continue to feed and foster our yearning for a better tomorrow, a brighter spring and a healed summer.

For even in the last 200 days life has won through against all the death and destruction. At 103 John fought off this pernicious disease and now sits laughing and story-telling with his fellow care home residents. At 38 Jane was able to come through weeks of intensive care and rehabilitation and is now able to hold her child and laugh at the small things of unimportance. At 17 and in a strange university experience there are students falling in and out of love with equal measure in the predictable rhythm of life; that in ceremonies across the country there are lovers committing to a future of togetherness; that in creative ingenuity ideas are being born out of hard work and reflection; that there are artists painting a future of purpose and poets ploughing the depths of emotion; that there is even in the midst of autumn a renewal which overcomes the decay and despair.

The next 200 days will undoubtedly be hard and there will be times of barren emptiness and pain but one lesson the last 200 has taught me is that we cannot make the journey onwards alone, but must all walk through into our future together, without casting casual blame, scoring points, asserting ego but upholding one another and speaking love into emptiness.

We pull ourselves forward together through our yearning. In the words of Seamus Heaney in ‘The Cure at Troy.’

“No poem or play or song
Can fully right a wrong
Inflicted and endured.…

History says, don’t hope
On this side of the grave.
But then, once in a lifetime
The longed-for tidal wave
Of justice can rise up,
And hope and history rhyme.

…

Believe that further shore
Is reachable from here.
Believe in miracle
And cures and healing wells.”

 

Donald Macaskill

I noticed in my calendar this morning that Monday is International Peace Day. It’s a day designed to promote peace among nations and peoples. The UN established the day and its website describes the day by stating that ‘peace is recognized as both an innate state of being, and a dynamic evolutionary process wherein constructive growth can occur and the children of this and future generations may gain hope for a better world to inherit.’

A bit wordy but in essence peace is both internal and relational. Reading the description reminded me of a phrase from the work of one of my favourites, the contemporary American novelist and short-story writer Veronica Roth, who wrote that:

“In order to have peace, we must first have trust.”

I will leave world peace to the Nobel prize winners but there is a truth in the linking of peace and trust which is inescapable. Whether in the realm of international politics, in the interactions of lovers, in the contracts of care or during a pandemic there is a profound interconnection between a sense of peace and ease and the extent to which trust is present.

But the problem is that if there cannot be peace and what comes with it without trust then there has been very little trust both before and during the pandemic in the realm of social care.

Where else would you get the extent of mistrust as in some of the contractual terms and practices between local authorities and social care providers. Explicitly what does it say of trust when electronic call monitoring systems originally designed to keep lone workers safe are used in homecare services to effectively electronically tag workers, to pay providers only for their contact time and to penalise for late arrivals or only to pay for a proportion of attendance. As one colleague put it – it is almost like saying to a nurse in a hospital you only get paid for the time you are at a patient’s bed but not your walking between them. There is little trust in the way we contract and provide care at home and housing support in Scotland. Without trust there can be no maturity of relationship.

Where else but in social care in the community would we treat workers with so little respect and maturity that we clock them in and out like some sort of Victorian factory, failing to give them autonomy and the capacity to make professional decisions? So, if they come across someone who is distressed by loneliness and simply wants company they have no capacity to sit and have a cuppa which restores. Why do we not have a system that instead of clock-watching care enables a worker to design their day around the needs of the supported person  rather than the demands of the system? Instead we have a system  of mistrust designed to drive down costs as much as possible.

This lack of trust was endemic during the last few months not least in relation to additional financial support for social care providers where in some local authorities the support and collaboration has been remarkable but in far too many the level of forensic examination of applications for financial support for things like PPE, extra staffing and additional costs, has been equivalent to trying to get money out of the Royal Mint. Without trust there can be no growth in relationship.

In all the talk in the last 24 hours about a second wave of Coronavirus I think that we need to reflect on the nature of trust both in the last few months and as we move forward. For perhaps the evidence of lack of trust and therefore absence of peace can be seen at its sharpest during some of our responses during the pandemic.

Much has been and no doubt will be written about the way in which as a society we failed to protect the most vulnerable in our care homes; the prioritisation of the NHS, confused Guidance, misuse of DNACPR forms, the absence of testing till late in the day and so on. But where a trust deficit has been perhaps seen most acutely is in the degree to which we have responded to the issue of allowing families in to see their loved ones in care homes.

This morning one of the main stories on the BBC website along with news of a second wave was from the English social care minister talking about visiting into care homes and making it very clear that all visits would require to be strictly supervised. This is all about trust. There is no trust when you have to police the love and care of family for their loved one. There is no trust when you have to have care wardens dressed in PPE to remove the privacy of individuals and disproportionally limit their rights of exchange. There is no trust when it is assumed that more harm will come from family rather than, at least for the last two weeks, the risks of a failed and broken testing regime designed to protect staff and residents alike.

It is time to start trusting rather than on the edge of a second wave to retreat back into positions which put up the walls of defensiveness. It is time for all to start to trust the professionalism and dedication of care home staff and providers rather than assume ignorance, lack of professionalism and ability. I have heard this week of one nurse manager who after 40 years of dedicated professionalism has resigned because in essence there is a lack of trust in her professionalism which has kept people safe from Covid from those who know nothing of what a care home is and does. Without trust there can be no community of care.

Trust is that most elusive and intangible of human emotions and characteristics. It is, however a fundamental for human relationship and community cohesion. It is an essential requirement for social care. Trust is diminished by lack of knowledge, by fear and the absence of relationship. It is fostered and grows by being alongside, by asking questions rather than knowing all the answers, and by taking proportionate risk.

I think as well as all the work we are doing in directly fighting the virus we also need to do the necessary work to build trust collectively as politician and commentator, carer and family, community and provider.

The psychologist Dr Andrea Bonior argued that there are some six requirements for building trust – I suspect they have a place in these days on the edge of a second wave:

1. Say what you mean and mean what you say – In the noise of conflicting priorities there is a need for clarity and clear communication. We often hear what we want to hear rather than that which is said. I hope in the weeks ahead as we face new challenge we can be clear and concise, truthful and honest.

2. Be vulnerable – Vulnerability is often used to describe that which is fragile and broken, limited and unwhole, but rather, I believe, our vulnerability should be seen as part and parcel of our humanity. It only becomes a weakness when someone uses that vulnerability for their own negative ends, it is a strength when we live through that vulnerability to be authentically who we are. So, in the days and weeks ahead let us not pretend to be who we are not, to know what we do not have the knowledge of, but rather to own our limitations and lack of certitude.

3. Remember the role of respect – Respect comes from an ability to understand the other and to see the value and essence of who they are. It is also rooted in a mature understanding of our own self. So, in facing the next few weeks I hope we can as professionals and colleagues come out from positions of defensiveness to recognise the ability in the other, the knowledge and expertise in that which we do not know, and to be honest in admitting our own frailties.

4. Give the benefit of the doubt – There are times in human relationships when we simply have to go into the unknown trusting that the other will not hurt or harm us. This is perhaps the hardest thing to do especially if there have been reasons for a lack of trust in the past. When pressure comes it is of the ultimate importance to be able to take a risk that the other will be true to their word, will adhere to what they say and walk their talk.

5. Express your feelings functionally, especially when it’s tough – it may not surprise many that there is a real emotional illiteracy in much of society and those who work in and around social care are no stranger to that lack of maturity. To hide emotions to the extent to which they overwhelm and overcome is not a sign of strength or ability but rather the reverse. One of the insights that I have gained from the last six months is that it is only by the honest display of feelings and emotions in all their raw pain and reality, that we can meet the challenges of a virus which can overwhelm and of emotions of grief and loss which can become so all consuming.

6. Take a risk  – I wrote last week about risk – but it is important to recognise that risk is not a solo activity but a mutual journey. Trusting the other that they are able to take a risk but one grounded in a mutual concern is the essence of being together in all human relationships. In facing challenges there are always moments and times when we venture into the unknown and the fearful, it is at such times and moments that we need to have the certainty that our risk-taking is upheld by the regard and support of others – we all need to know that there is someone there to have our back.

I hope as we move into the next stage of this pandemic, into days which will have their times of darkness and fear, that we seek to build the trust that gives us peace; that we work together to respect the knowledge and professionalism of the other, and that critically we work as hard as we can to continue to foster connection and contact between care home residents and the co-carers who are their families.

There will be many pressures in both community and care homes, upon our staff and families, but these will not be overcome by retreating into fear and blame, but only through trust and developing relationship. The future of social care in Scotland whether in community or care home can only be one built on trust and then perhaps we might have the peace we all seek.

Donald Macaskill

This weekly blog is a day later than normal. I spent yesterday cutting a hedge or to be more accurate doing the manual labour when my suitably qualified and certificated brother used two vicious large petrol hedge cutters! This happens about twice a year – it is a big hedge! Conditions were not ideal – a sharp wind and not so occasional showers but the job is now completed  – even the tidying! Only when I put the machines away do I realise what dangerous and risky pieces of machinery they are.

I have been thinking a lot about risk in the last couple of days. Risk is part and parcel of everyday living. There is no context which is completely risk free. The way in which we grow from children into adults usually teaches us how to manage and deal with risks, having been protected from them as children to a greater or lesser extent. We learn strategies for dealing with risk, we develop models and systems and we fashion an internal risk management system! For there is, in reality, no such thing as total safety but rather there are degrees of safety and levels of risk. Risk is therefore a given of human living and relationships.

It is also a truism that risk is highly personal. I may make judgements and undertake activities and consider them normal and safe e.g. going skiing or mountain climbing but another person may consider those to be highly risky and never to be touched.

The influencers on how we manage our approach to risk are numerous. The way we have been brought up, the extent to which we have taken risks and things have worked out well, the impact of our behaviour upon others, especially those who are important to us – all are factors which influence our approach to risk. But by in large, part of adulthood is that we develop strategies that enable us to have a healthy approach to risk and to develop an acceptance that safety is often illusory and subjective.

Life is all about risk and risk is all about relationship. As someone who worked in both child and adult protection and having trained hundreds of staff in safeguarding I have always been acutely aware of how important it is to get the management of risk right. The failure to analyse and assess, to take action, to guard and protect can be literally a matter of life and death. But equally there are dangers of over-protection and risk avoidance which can result in care and support which suffocates with kindness and which serves to limit individual autonomy and personal control.

In conversation last week with colleagues from around the United Kingdom I reflected that where we are now in our current response to Covid is all about risk management. How we manage the obvious risks around us and the decisions we make and take will have a profound impact on the way we control the disease and also the nature of the communities and societies we are forming in that response. But whilst risk may frequently be an individual decision and action, it is influenced by and in turn affects relationships. I can make and take decisions which are appropriate for myself but when those decisions are impacting upon others or are made on behalf of another for whatever reason then the management of risk needs to be forensically examined and transparently justified.

The debate which is for so many of us the most critical and crucial discussion we are having these days is how do we improve and increase the access to care homes to allow families to get back together. In essence that debate is all about risk and how we manage risk. It is far from an easy consideration, in fact it is heart-breaking.

Yesterday’s Big Interview in ‘The Times’  newspaper was on Prof Sir David Spiegelhalter from Cambridge University, who has impressed me every time I have seen him on television during the last few months. But he is also someone whose work I have known for some time because he is an ‘expert on risk.’

Spiegelhalter a long time before the pandemic said:

 “The media want to make things exciting and usually alarming, so there’s a tendency to present figures in a way that makes them look dramatic, and we should be able to take these stories apart…it’s important that it’s not just left to the very senior people to draw attention to the misuse of evidence or statistics.”

And how true has that been in the last few months! –  don’t we all know the truth of the deception of statistics and the perversion of data.

In his book, The Art of Statistics,  Spiegelhalter argues that there is an onus on scientists like him to explain risk to the general public in a way that achieves the appropriate balance between informing and causing alarm. He appreciates that we all understand risk in  an often very individual way and even two scientists looking at the same data may come up with a diverse interpretation because of the moral paradigm of risk that they are working with.

At the present time we are witnessing an alarming increase in daily cases in Scotland in no small part generated by the risks which those of a younger age have taken around house gatherings and behaviours in hospitality settings. There are so many ways in which I can understand their behaviour. The data seems on the surface to present the risk of Covid to them as one which is relatively low and so the accompanying warnings that it is still a virus that can result in crippling long-term damage to young people are not heard. What dominates is the desire to get back to normality, to live life to the fullest, to reconnect and to enjoy. All perfectly understandable. But as Spiegelhalter states:

“The point is that risk is not just risk to yourself it’s risk to others as well,”

The challenge is, in part, that our understanding of risk as a younger person is palpably different from risk as we deal with it when we are older. At times I think the psychology of our public messaging has failed to appreciate that risk really does feel different dependant on the age you happen to be. So rather than an emphasis on risk the narrative should rather focus on our mutual responsibility one to the other not in order to ‘guilt out’ folks but in order to tap into the altruism and humanity which so many showed during the depth of the pandemic in the spring. For me in the last few weeks the biggest impact on local lockdowns has been on our older population and especially those families prevented from visiting residents in care homes which have had to close to indoor visiting just as they were beginning to open up. Individual actions can lead to a real desolation for others at this time perhaps to a degree that individual risk-taking has never impacted on others before. But I am not convinced those taking ‘risks’ truly understand the consequences upon others.

When we consider the issue of care homes I think we are getting to the heart of the risk debate that many of us are daily struggling with. The continual debate I have with clinicians and advisors is how do we get the balance right between protecting people from the virus and enabling them to have a quality of life which is enhanced by contact with their families and the wider community.

Spiegelhalter states:

“This whole crisis has turned into an issue of risk management. That means perpetually a balance of potential harms and benefits. There’s no such thing as safe, there’s no such thing as right or wrong. Everyone has to carry out that balancing act.”

As we move into winter and face the challenges of weather and potential increased instances of lockdown we need to find a better risk balance to enable people to be reconnected. I think we can learn some lessons from the world of safeguarding as we pursue that balance. At times I fear that maybe not surprisingly during a pandemic we have become automatically risk avoidant rather than risk enabling. We need to correct that imbalance.

In ‘normal’ times in health and social care a traditional risk aversion approach has gradually been replaced in the last few years with talk about enabling risk, and with the development of new models and ways of working which enable individuals to re-develop strategies for risk-talking and managing risk even in situations and contexts where familiar securities are no longer there, such as post illness or with declining capacity.

A major Department of Health consultation ‘No Secrets’ examined their approach to adult safeguarding and risk, and stated:

‘A balance needs to be established between empowerment and protection and between the rights for self-determination and the duty to ensure safety of people… We want to support people to be citizens and take risks that they understand. ‘

Good adult protection and safeguarding is about balancing risk. We all live within environments which are not risk neutral, but we have developed the skills and tactics to minimise, control and live in the face of such risks. That is part and parcel of what good support should be.

Risk enablement is about proportionality. It’s about nurturing within those who might be more vulnerable the insights and abilities which enable us to live in the world.

During a pandemic and especially now it is as we struggle to get a better and more proportionate balance between risk avoidance and risk enablement that I think we need to appreciate that for those who are at the end stages of their lives that seeing family, being able to be held, being together  – all with appropriate protection – trumps an approach to  risk which is in danger of adding to the number of days lived but diminishing the quality of those hours to a point at which they cease to have any real value. There really is more to life than chronology; more to our life than mere existence. There are no easy answers but simply asserting data and science as the sole predicators for decision-taking on risk is no longer sufficient or responsible, not least as it fails to value the rights of individuals.

I will let Spiegelhalter have the last word:

“Experts aren’t always right, they disagree, scientific disagreement is an integral part of science. When I hear a politician saying, ‘We are following the science’, that is when I start screaming at the radio. You do not follow science because it doesn’t tell you what to do. It is sitting there beside you humming and hawing.”

Dr Donald Macaskill

When I was at school my English teacher brought many poets to come and read to us. I probably didn’t appreciate then just how lucky I was. I do now. I can remember many and have forgotten more. But one I will never forget because he spoke in the timbre of my own first tongue with a rhythm I related to and a language I felt inside me was Norman MacCaig.

He wrote:

Aunt Julia spoke Gaelic
very loud and very fast.
I could not answer her —
I could not understand her.

She wore men’s boots
when she wore any.
— I can see her strong foot,
stained with peat,
paddling with the treadle of the spinningwheel
while her right hand drew yarn
marvellously out of the air.

Hers was the only house
where I’ve lain at night
in the absolute darkness
of a box bed, listening to
crickets being friendly.

She was buckets
and water flouncing into them.
She was winds pouring wetly
round house-ends.
She was brown eggs, black skirts
and a keeper of threepennybits
in a teapot.

Aunt Julia spoke Gaelic
very loud and very fast.
By the time I had learned
a little, she lay
silenced in the absolute black
of a sandy grave
at Luskentyre. But I hear her still, welcoming me
with a seagull’s voice
across a hundred yards
of peatscrapes and lazybeds
and getting angry, getting angry
with so many questions unanswered.

Norman MacCaig’s ‘Aunt Julia’ is now one of the poems taught in Scottish schools as part of the exam curriculum. I’ve always loved it. Aunt Julia lived on Scalpay on a croft not unlike that of my own family on Skye. She only spoke Gaelic and no English. Again, something that resonates with me as I only learnt to speak English ‘properly’ after I was five. She reminds me of my Aunt Effie in black boots and black skirt, whose apron painted a canvas of egg stain, peat and flour. Even though they could not share a language MacCaig adored his aunt, as I did mine. In words of poignant regret, it was only after her death that MacCaig learnt enough Gaelic to have been able to communicate with her. Now she is absent, his questions lie unvoiced and unheard. There is a separation that nothing can bridge. So many questions unanswered and he is angry.

To be absent from the hands that caressed you every day of your life; to be invisible to the face that woke your dawn with a smile; to be silent to the lilt of voice that spoke as music in your ears; to be distant from the touch that cradled your pain and held your laughter … that is separation.

To be separate from those we love and those whose bone has become the very marrow of our being is an ache which can never be put into words or remedied with any solace. If one has power over it happening, it can only be a conscious and deliberate action if it is for the protection of that very love whose absence creates ache and tear.

This week I want to write about separation.

Getting the balance right between keeping people safe from a pernicious virus and enabling individuals to be restored to the fullness of relatedness was never going to be an easy task. I have been reflecting on whether or not we have got this balance right in the last week partly because of a mounting unease within me and partly because of the tear-inducing correspondence I have been receiving, I have read so many Guidance documents and suggestions from across the world about how it is possible and what steps have been taken to restore a balanced safe normal to older people’s residential care including this week taking part in an international conversation.

I have written before that I think the early measures taken to exclude visitors and shut down our care homes were entirely legitimate and proportionate because the threat of the virus to life was self-evident. It was not an easy thing to do but restricting people’s human rights was acceptable and the right thing to do at the time. As we began to understand the danger of asymptomatic transmission, as a nation we have escalated testing of staff to the level it is now, and we have used PPE, especially masks, to the level we now do. As a result, and because of the wider actions of others in lockdown we have significantly diminished the impact of the virus though as witnessed in the last few days the virus is still present and can tragically still take life in care homes and community.

Last Thursday was the 25^th week since the start of lockdown. In the last few weeks we have introduced visiting outdoors and then extended it, started visits indoors and on Thursday there was an announcement about the return of visiting professionals and the greater use of communal space.

But 25 weeks on it is still the case that thousands have not been able to meet up because of the restriction on numbers and the capacity of care homes to staff and supervise visits, because of the Scottish weather and more recently because of local lockdowns and decisions to close care homes to visitors.

There is now a growing anger in the wider care home community about the proportionality of many of the restrictions which in the initial Guidance seemed appropriate. People are weary of being separated and they are struggling to see the justification for what they perceive to be a disproportionate removal of the rights of those in care homes. I have reflected elsewhere about how we have failed to adequately hear the voice of residents and are increasingly, I am afraid, diminishing the human rights of citizens with capacity who happen to reside in a care home by failing to allow them to take decision and action in an autonomous way.

If some form of separation is necessary for protection then the way in which we do it simply has to change.

We have to get better at including and involving families not just to help them understand what Guidance says but to take control and co-write that Guidance so that they are more in control of decisions. Family members are not visitors into the lives of their loved ones they have the right to do be present (with consent) and no-one should diminish that right over such a long period of time without the most profound justification. Clinical paternalism, public health risk aversion or political caution have their place but we must also find a space for the exercising of the rights of residents with capacity to knowingly take control of their decisions and the risks they wish to take providing others are protected. We are witnessing on a daily basis that people are switching off their lives having decided that there is no point in living in this twilight existence of separation and absence. The distressing effects on the mental health and wellbeing of residents and family members alike is  a scandalous trauma.

We have to become more proportionate in the rules and requirements we make. I have yet to see any clinical or scientific reason why a family member wearing appropriate PPE cannot sit alongside their loved ones and hold their hand or stroke their face or feed them their meal. We have to encourage protected touch rather than strip physicality away from encounter.

We have to banish the distance of togetherness by removing the 2-metre distance requirement when people wear appropriate PPE. If a professional carer can be close then why can family not do the same?

We have to get to a stage where we prioritise the new faster tests that are being developed for family members seeing them as critical and essential key workers in the lives of their loved ones.

We have to extend the time that family can be together and get to the stage where there is more control for individuals.

We have to restore privacy to individuals so that they can meet and be together without supervision or oversight. Care homes are not prisons nor are care staff wardens for the behaviour of others.

We have to allow people to go out in the community and not expect them to isolate themselves for fourteen days when they come back to their own home. Which one of us would go out to the shops or for a meal and then imprison ourselves for fourteen days?

There is, I believe, much more that we can and must do. It is clear that we will be living with the pain of separation for some time. We can lessen that pain by ensuring that the times of togetherness are as normal and as natural as they can be. At the moment I fear we have simply created an abnormal new normal.

Donald Macaskill

 

 

In life if we are lucky we are sometimes fortunate in meeting people whose words and insights resonate with our own. For me one such individual was the Irish poet and philosopher John O’Donohue who I had the good fortune to hear and meet on a number of occasions. His words both in prose and poetry speak to me with an insightfulness on the subjects which matter most in my life and with a wisdom which few have equalled since. In particular O’Donohue in his writings on grief and dying seems to reach deep into the truth of the universe. In ‘For Grief’ he writes:

“When you lose someone you love,
Your life becomes strange,
The ground beneath you becomes fragile,
Your thoughts make your eyes unsure;
And some dead echo drags your voice down
Where words have no confidence
Your heart has grown heavy with loss;
And though this loss has wounded others too,
No one knows what has been taken from you
When the silence of absence deepens.

Flickers of guilt kindle regret
For all that was left unsaid or undone.”

Tomorrow is National Grief Awareness Day. It is also the day when I will remember the 10^th anniversary of the death of someone very special in my life and to those I love. It is a day when I will reflect on my own memory and silence. A day when rushing into my heart will be all those words unsaid to all those absent from my living but not my loving. So, I hope you will forgive me if I reflect today on grief in these strange times because it has been much on my mind this week and it is something which is troubling me more and more. This is the case because virtually every day this past week I have received two or three heart-rending emails from family members of people who are living in care homes under continued restriction. We grieve not only for those who have died but sometimes for those who are living.

Over the years as I have grown to know more about dementia both professionally and personally I have understood the aching truth that even before the death of a loved one we start the walk of grief, that we acclimatise ourselves to the increasing fragments of connection as the disease turns our beloved into a shadow of themselves. It is not that we ‘lose’ the person and give up on them. They are still there, locked inside the shell of flesh which imprisons their smile and happiness. We still want to be present to re-connect, to mirror memory and to soothe distress. We never give up on the yearning and hope for that spark of the old and familiar. People have described these feelings as a waking death – witnessing our loved one slowly slip away from the grasp of your togetherness. And in such times we prepare for the parting; for the time without, for the emptiness and the ‘silence of absence’.

The peculiar sadness of these days is that because of the ravages of Covid there are countless hundreds who are not able to be close with those they love, who are shut out on the other side of doors and windows, waving at their loved ones, shouting across two metres unable to be heard and to be understood. This is heart-breaking to endure and hard to witness and watch. The sheer agony and pain I have read and heard in the weeks that have passed has changed all of us and yet I despair at the casual behaviour of others routinely returning to ‘business as usual’ without recognising the silent pain happening in our midst.

It is not that people, from clinicians to carers, from politicians to policy makers, are not sensitive to the hurt. We are all trying to feel our away through this unknown to get the balance right between protecting people and keeping them safe and restoring the relationships which are intrinsic to who we are as human beings. Personally I am convinced we must find better ways in which we can increase that togetherness, where families are not allocated slots of time to enable their love to be shown; where through the use of testing and PPE we allow people to be held, to hug and to feel love through their touch one with the other. Our detached observance of our mutual love cannot remain as the new model of our being with one another. For so many the aloneness of grief is being felt now as lives slip slowly through their fingers, as loved ones change in sight of but beyond family comfort. This is a grief made real.

But as I think about our National Day of Grief tomorrow I am also mindful not just of the pain in our care homes but the real sense of emptiness being felt by many thousands across Scotland at the present time. Yet so few are talking about this hurt – it is almost as if it is too painful for our society to talk openly about what and who we have lost.

Yet again in the past week I have heard and spoken to those doing amazing work to support others through their bereavement – this time the remarkable Macmillan supported bereavement project and work at Glasgow Royal Infirmary. Bereavement support and services have always been delivered in a patchwork manner across Scotland with some astonishing work being undertaken by a range of organisations. As a society we have through Covid experienced real change and trauma and I think that urgently we need to prioritise the funding and mainstreaming of bereavement support so that it is embedded as a strategic priority for and part of who we are as a community. Sadly, not everyone can do the work of grief on their own, some of us need support to put together again the broken pieces of our heart. We need to get better as communities in ensuring that such support is there for individuals. Becoming more confident about talking about death and dying might just be one of the legacies of the pandemic age we are living in, but such articulacy must also be accompanied by a societal willingness from political leadership down to local communities to resource and prioritise the provision of bereavement care and support.

O’Donohue speaks of the way in which with time, care and compassion, after being held by others we come to live with our grief:

“Gradually, you will learn acquaintance
With the invisible form of your departed;
And when the work of grief is done,
The wound of loss will heal
And you will have learned
To wean your eyes
From that gap in the air
And be able to enter the hearth
In your soul where your loved one
Has awaited your return
All the time.” 

I hope on National Grief Awareness Day more and more of us will be able to wean our eyes ‘from the gap in the air’, but we also need collectively to remember, support and be present for those whose pain is raw and real and whose tears are still wet. We need to own the anger and hurt before we can change and move on. Grief is something we work at and do – it is as hard a labour as we will ever encounter but ignoring the pain will just serve to deepen the emptiness. Part of that work in the coming weeks as we move into winter planning is I am convinced the need to work collectively to reconnect people in care homes and communities, to rebuild the bonds between young and old, son and daughter, lover and beloved.

I leave you with words which remind me of all those whose lives will never be the same again:

 

Nobody ever told me.

Nobody ever told me

it would be this hard;

that I’d wake up in the morning

and think that you were there

lying beside me in our bed;

that I’d walk down the street

and recognise your shadow

following me in the sun;

that I’d listen to the radio

and hear your voice

inviting me to sing;

that I’d sit in the park

and watch you go by

in a group of strangers.

 

Nobody ever told me

it would be this hard;

that I’d wonder why I should

get up in the morning;

that I’d think making plans

was a children’s playground game;

that I’d rage with anger, red and raw,

at your leaving;

that I’d wonder was it me

who did something

that made you go away.

 

Nobody ever told me

it would be this hard.

 

Why can’t someone tell me instead

how I can stop crying

and dam the tears from soaking my pillow?

How I can start again when all I want to do

is rest in our lost togetherness?

How I can ‘move on’ when I only want to settle

in the place of our memories?

 

And please someone tell me

when will this time come,

the time they all talk of

in easy careless cliche,

the time which they say

will heal all things

and help me to live again?

 

 

I am unashamedly an enthusiast for technology and gadgets. I may not have the latest phone or gizmo, but it is likely if you do I will look on with more than a modicum of jealousy.  As part of this fascination I have always been intrigued about the role of technology and digital in our care and support services.

This interest led me two years ago to write a report exploring the role of human rights in the developing fields of Artificial Intelligence, the Internet of Things and Big Data. Now before you scroll away, my central premise and interest in doing so was to explore the extent to which we can keep the human and especially rights at the heart of our use of technology in health and social care.

I have had quite a few conversations in the last week around technology, in part because along with colleagues, I am preparing for the Scottish Care Care Tech3 event next Friday. This virtual event will bring together those who have been using technology and digital in the delivery of care services and will include designers and developers as well as frontline staff and users. The equivalent event last year saw the launch of a Human Rights Charter for Technology and Digital and this year my colleague Dr Tara French will be sharing the Scottish Care Tech Vision rooted in the human rights and autonomy of individuals.

For me technology at its best is explicitly an art or a craft (indeed that’s what the word tekne means in its Greek root). Its potential is immense in that it can deepen and enrich human encounter and experience, can foster connection and enhance relationships. However, too often, I feel, we get so caught up in the mechanics and the technicalities of new technology, that we lose sight of the art, the creativity and the humanity. Equally we can get so obsessed with using technology as a cost-saver and as an efficient alternative to the human that we endanger the willingness of citizens to adopt and trust.

The Covid pandemic has seen the most amazing advances in the use of technology not least in the health and care sectors. The pace and speed of intervention and design has been breath-taking. The launch in the last week of an app to help care home providers share critical data and information on a national level has been astonishing, moving as it has from wire-design to delivery within weeks.  We have witnessed a massive increase in the use of video and tele-consultations between GPs and their patients not least through the Near Me technology supported by Scottish Government. Remote diagnostic tools have been developed and many more practical and helpful innovations including the use of virtual reality have enabled technology to come off the paper and change lives, indeed, probably to save lives.

Perhaps most importantly, on a very human level the experience of many of the residents in our care homes has been that through the use of tablets and other video devices they have been able to keep in touch and remain connected with their family members during the forced lockdown when physical contact has not been possible.

But it is as a result of my many conversations with families and residents and those who used health and care services during the pandemic that I feel that my own enthusiasm and evangelism about technology needs to be more balanced.

Now I am not suggesting that we are in danger of some dystopian nightmare where automaton have taken over and that as a result we need to develop a fear of the technological future. Covid19 whilst it has highlighted the real progressive power of tech and digital has also served to underline the critical importance of embedding a human rights and ethical framework in its use in health and social care.

Technology within a care context should primarily be about enabling the betterment of interaction and facilitating the intensity of relationship. It should always be about improving outcomes for the person rather than simply making life easier for the professional. A GP who uses Near Me to consult with someone in a care home is positively providing an immediacy of response and especially during a pandemic reducing the risk of virus transmission. However, few would deny that the subtleties of body language, the dynamic of inter-personal relationship, the signs and signals of encounter can be equally achieved through a virtual encounter compared to a face to face meeting. Video consultations are fundamentally important, but we have to acknowledge their limitations. We have to appreciate that there are those with visual and hearing impairments, those with advanced dementia and other neurological conditions ( i.e. the majority of care home residents) who struggle to engage with such tools and who are dis-empowered by any sole dependency upon them, to say nothing for the effects on their personal privacy and autonomy. We have equally to acknowledge the reality of digital poverty which if not adequately recognised will serve to exacerbate and compound the very real health inequalities which have scarred Scotland.

I know from practice that one of the most important things I learnt was to give space to ‘doorknob’ conversations. These were the conversations which happened as someone got to the door, placed their hand on the handle, and turned around and said to me ”Oh there is something else I meant to say…”  And you just knew that this interaction was the primary reason they had come to see you but just could not get up the courage to talk about face to face.  Not much chance for the occasional, by-the-way alongsideness of such conversations in a video consultation. So too those of us involved in talking to others about hard and emotional subjects recognise that it is not just what someone says that communicates their truth and feelings but also the way they say it, the timbre of their voice and the silence between the sounds of their words.

But there has been one conversation more than any other during the last few months which has helped to balance my digital enthusiasm. It was with the daughter of a care home resident who had provided a tablet for her mum to speak to her and keep in touch. After weeks of growing frustration with both the device and her mother’s inability to comprehend what was happening and to use it –she said to me – “I want to hold her and hug her, I want to touch her not give her a digital kiss.”

As I researched the report I mentioned earlier I spoke to many around the world from California to Tokyo, Edinburgh to Oxford, about what the future of technology and care might look like. At the end of six months of Covid I believe we are closer to that future than we could ever have imagined at the start of the year. But for all the immense progress in the last six months I am left with the conviction that my concerns in that original report over data privacy, citizen disenchantment and the intrinsic value of human presence are now more valid than ever they were before.

We need to work together to create a Digital Plus world where we celebrate and appreciate the contribution of technology and digital to change our lives and improve our health alongside  the critical importance of enhancing human interaction and developing models which are right for the individual rather than appropriate for the system. We need to assure those who are anxious about how their data will be held and accessed and be confident in ethical principles and the human rights of privacy and personal control. We need to address the fear that human touch and contact will be marginalised by electronic encounter and exchange.

In a world of robotics and care bots, in a realm of accelerated data and machine learning, we dare not lose the human at the heart of the machine. Technology can enhance connection but can never replace touch; a machine can foster memory but can never give the feeling of a hug, held close, warm and affirming full of a depth of meaning beyond calculation.

So I will continue to be enthusiastic about the potential of technology but I will balance that with the lessons of Covid which more than anything else have taught me that when it matters most we want to be present, to feel we are heard, to recognise the rhythm of another’s concern, and to be held. If we get the balance right then we will really experience the touch of technology.

 

Dr Donald Macaskill