Care homes beyond the headlines: a longing for renewal.

Next week for three days folks will pop in and out of the Care Home Gathering which is Scottish Care’s virtual event for the care home sector. It comes at a time of real continued challenge and uncertainty for all those who are residents, their families and those who work to provide care and support.

A lot has been said and spoken, written and commented upon in relation to our care homes over the last year. The headlines have been full of stories, many of which have been ones of sadness and loss as the vicious effects of the Coronavirus have been felt across the country. People who have never been into a care home have taken upon themselves to comment and analyse, with a real mixture from voices of strident certainty arguing their views to those of a more reflective tone. But whilst others have commented and observed and in the midst of all the debate and blame, the castigation and mud-throwing, there have been the tens of thousands whose homes these places are, whose place of work these communities are, whose loved ones call these places ‘home’. For so many of them there has been a real grief not only for those they have known and lost but also for the very place they call home, for its rhythm and sense of peace.

There is a real sense of grieving for what has been lost and is in danger of still being lost combined with a longing for a restoration and a return to the familiar and the trusted past.

One of the greatest contemporary writers on loss and bereavement, and a huge personal favourite is Brené Brown. Her words on courage, vulnerability and empathy are well worth a look. In ‘Rising Strong’ she wrote:

Grief seems to create losses within us that reach beyond our awareness–we feel as if we’re missing something that was invisible and unknown to us while we had it, but is now painfully gone…Longing is not conscious wanting; it’s an involuntary yearning for wholeness, for understanding, for meaning, for the opportunity to regain or even simply touch what we’ve lost.

‘Longing is not conscious wanting; its an involuntary yearning… to… touch what we’ve lost.’

The tragedy which we have witnessed in the last year tells only part of the story of what care homes are really like. In this job and over nearly five years of doing it I have had the privilege of seeing what care homes really are, small and large, in village and city, on island and in suburb, fragile and strong. No single one is the same as another, any more than the homes we live in are alike.

But in truth they are ordinary places of brick and glass where extraordinary people live; not just extraordinary because of their age or what they have done or who they have been, but because they are people who are still sharing and telling, still creating and giving, still full of life and loving.

I long for the day when we get beyond easy soundbites to understand what a care home really is. It is not a place to be garrisoned from life and risk, to be secluded from loving and the reality of pain. They should not be places of antiseptic cleanliness but the mess of living. They are not places to cocoon older age but to enable people to live out every ounce of breath until their last. They are in no way places where individuals go to die, quite the reverse, they are places where one lives to the fulness of your hours; where compassion sits down beside fear and strokes away hurt with a hand of assurance. They are often amazing places because they are honest – for there is nothing more authentic than in living in the last days of one’s life and doing so in a way that enables you and others still to grow, to achieve, to create new starts and new loves, and to share touch and tenderness.

I long for the day when we can end the silence in care homes. The last year has brought emptiness to care homes, a quietness of absence where we have separated family and resident in the name of safety and protection. This has been an aching and harrowing time for all involved. No one I know in a care home as a manager or staff member wants to be keeping family out, but they are many of them struggling with fear and anxiety that the virus if it comes in will destroy all that is good about the place. They are struggling with being blamed and investigated, fearing being dragged into the court of media and law. So, in the midst of all this fear and fragility, we must together find a way to use vaccinations, robust and trusted testing, PPE and good infection prevention and control to restore relationships and re-unite families. We have just passed ten months of a separation that has saddened and destroyed in equal measure to the virus. We simply cannot continue for yet more time to be lost to individuals who are not ‘visitors’ as if they were casual and occasional observers of life but are rather in many instances the very reason a resident has for living.

I long for the day that we can with confidence address the fear and anxiety of the countless numbers who write to me and who are frightened to go near the care home to visit loved ones because of the dread of the virus. I know these folks need to be supported by assurance and safety to re-connect and return.

I long for the day when we can see activities and entertainment, music and laughter return to care homes. Now I know that staff have been doing an astonishing job to keep the spirits of people up, to keep folks active and engaged, through a whole host and variety of creativity and involvement. But they would be the first to say that we all need other voices and experiences, sounds and songs, to stretch our memories and keep us going.

I long for the day when we start to respect again the skills and professionalism of care home staff, from managers to frontline carers, nurses to cleaners. There are times in the last year when it has felt to far too many workers in care homes that their professionalism, expertise and skills have been cast aside, ignored and neglected. The 50,000 plus staff who work in our care homes are dedicated and trained, compassionate and caring. They know what they are doing and at times it has felt that ‘experts’ from outside have been telling them how to suck eggs. But I have also lost count of how many visiting professionals have confessed to me how they now marvel at and respect the skill of the work which occurs in care homes. So, I hope in my longing for the future that greater collaboration, mutual respect and understanding of roles can be cherished and nurtured.

I long for the day when staff in care homes can have a rest and can be renewed and restored in mind and spirit as much as in body and muscle. This has been a time of emptying the heart, when there have been too many tears shed and moments of real soul-sapping sadness. Frontline staff facing yet more assault from this virus are exhausted and drained and they need space to mourn and grieve, to re-connect with who they are and with those they love.

I long for the day that we stop treating care homes as mini hospitals and that we recognise, because an awful lot of commentators, policy analysts and so called ‘clinical experts’ have wholly failed to recognise, that a care home is first and foremost someone’s home and not an infectious control unit. I am increasingly frustrated when I hear people talking about ‘institutions.’ A care home is NOT an institution it is the gathering together of individuals to live alongside others in a way that they can be supported and cared for, nurtured and loved. At its best it is a living out of being in community and togetherness with others.

I long for the day when the hypocrisy of our political and chattering class is replaced by a reflective honesty which accepts the fact that care homes and social care in general has been for too long the forgotten sector, under-resourced and under-valued. It is astonishing the degree to which some politicians have discovered their voice to comment about care homes when for decades they have at local and national level presided over tightening budgets and restricting terms and conditions. We need an honest debate about how we are to fund and resource our care or we will continue with the complicity we have had which has kept social care out of sight and out of mind, given the leftovers of fiscal allocation. We need a debate which goes beyond easy soundbites and gets to grips with the fact that workers are underpaid for what they do, charities are leaving the sector because they cannot continue to subsidise the State’s failure to fund, and where there is a desperate need to invest in both people and organisations. And let’s not make this about a debate rehashing old lines of defence – let us be honest about the need to work together, to build a care service enshrining the autonomy of the individual at the heart of all we do, rather than the needs of organisations or systems.

I long for the day when we centre the essence of who we are as a community and a nation around the women and men who receive care and support in care home and in their own homes. The way we care is a mark of the depth of our humanity and the extent to which we are open to others. At the moment I think we might be found somewhat lacking.

But most of all I long for smiles and laughter, gossip and rumour, memories and story to return to our care homes. These are amazing places with astonishing lives. I hope that when circumstances permit those who have talked so much about these places of brick and mortar, who have pontificated and judged, opined and observed, will knock the door, be invited in, walk around and watch, listen and learn of the loving and the giving, the sharing and the togetherness, because behind the headlines there is humanity.

We have the chance to restore and renew… lest we forget what we are in danger of losing.

‘Longing is not conscious wanting; its an involuntary yearning… to… touch what we’ve lost.’

Donald Macaskill

Please think of joining the Care Home Gathering for all or part of it – for debate and discussion, honesty and reflection, remembrance and creativity. See https://scottishcare.org/care-home-gathering/ and follow the hashtag #CareGathering.

“I am weary.” a personal reflection in the new lockdown.

I don’t know about you but for me one word and feeling has come to express the days that have passed since the start of the year – and that is weariness.

My late mother used to describe January as ‘mìos sgìth’ the month of weariness or tiredness. Her oft heard remark in these winter months was “tha mi gu math sgìth” “I am very weary. I am very tired.” A phrase that became the soundtrack to many a day.

The dictionary describes ‘weariness’ as an extreme tiredness, fatigue and debility; a reluctance to see or experience any more of something.’ How better can we describe so much of what so many are feeling right now?

Weariness is not just a tiredness of the body it is a depth of tiredness that gets into the bones much like the damp and cold of this time of the year. It drains us of the energies’ of hope and togetherness, it saps the strength of optimism and confidence.

It is perhaps little surprising that so many of us are weary.

There is a weariness brought about by the announcement on Monday that we were returning to a strict lockdown and indeed around the fear that in the coming days that strictness may need to get tighter yet still.

There is a weariness amongst the care home staff and managers I have spoken to this week. Having got to the point of the end of the year, having overcome outbreaks and working through the exhaustion and emotion of the months that have passed, there was hope that we were turning the corner, then news of the new Kent strain came and it felt that things went back to the beginning. Their weariness and exhaustion has been compounded this week by yet more demands through increased testing of staff and others, tragically many more outbreaks of this deadly virus, staff absence and sickness, loss of individuals now shielding, all adding up to a painful the sense that we are in Groundhog Day yet again. One manager said it all felt like the light going further away rather than getting closer. People are weary beyond description.

There is a weariness amongst family and friends of those in care homes. Ten long months of separation, 300 days of absence, hundreds who have passed away not just from Covid but other conditions, and still for the majority there is no touch, no embrace, no sitting alongside and holding hands; no intimacy and sense of togetherness. We had been getting better in addressing the fear of care home staff, managers and relatives, better by introducing the prospect of lateral glow tests, in slowly opening up care homes to days of closer normality, and then Tier 4 restrictions ended all but essential indoor visits. People are weary beyond description.

There is a weariness amongst the workers and folks who work in care at home and housing support, who are in all weathers, in cold and ice , going out and bringing care and comfort, presence and support to thousands in our communities. They are weary of the continued failure of the others to prioritise their needs, to initiate a robust system of testing asymptomatic staff whilst the new strain runs amok around them; they are weary that all the response of others seems to be a Thursday clap when what they need is recognition, value, resourcing and prioritising in vaccination, testing and in contracts that do not diminish life into 15 minute segmented visits. People are weary beyond description.

There is a weariness amongst health colleagues not least in hospitals. The massive increase in admissions, the growing statistics of those needing intensive care despite new treatments for Covid, and the sad daily reckoning of death and loss, are taking a huge toll on the morale, sapping the energy, and draining the reserves of a workforce and system which has been on over-drive for months. People are genuinely frightened about whether the health and care system can sustain itself unless the wider population begins to act as if we are all infected and to behave accordingly with an urgent cautiousness. People are weary beyond description.

There is a weariness in the wider community. The return to lockdown has meant again the challenges of juggling work and home-schooling and all that comes with that; the strains of keeping children and others motivated and positive when there is little to do. For others this last week of frost and snow has restricted the ability to get out and exercise for fear of fracture and fall. Thousands more are terrified that what they have built up in businesses and the careers they have nurtured over the years, incomes they require to pay bills and simply to live, will be lost the longer we remain under lockdown. There is real raw fear of loss of hope and role, of identity and self-value. The adopted normality of autumn has been replaced by a closed inwardness which is so much harder for so many in these winter months. People are weary beyond description.

There is a weariness for the countless thousands who are struggling with emotions and mental health. The inability to connect with others, to engage in the routines of exercise and activity; to be able to do what keeps you healthy and balanced, has been a devastating blow in the last few days. And what makes all this worse is that we have all been here before. The very predictability of uncertainty, the fear of a never-ending roundabout, is causing a tiredness which empties individuals of positive energy and hopeful spark. People are weary beyond description.

In the face of such weariness, what should our response be? I do not have the answer – but all I can do is reflect back to the weariness I saw so often in my own mother in this ‘mìos sgìth’ ‘month of weariness and recollect her own actions. They were simple, rest, restore, relate and renew. Not her words but upon reflection this is what she did so often

When she got to the point of being tired and exhausted – which was quite often bringing up six children, she would stop, sit and yes typically have a cup of tea. But this was not just an ordinary activity. All her children knew and sensed the moment that she was not to be disturbed, that this was her time for herself. It was the moment which she needed to continue being. It was not that the tea was any different, or what she ate, or the length of time she took. What she did was to dis-connect from the activity and the concern and to retreat into her own space and place of time. For her it meant putting on the radio and listening to the Gaelic programmes. It was an escape in the midst of encounter and activity in order to be renewed and reconnected. It was a charging of the batteries.

I know when I am weary and tired and exhausted I need to do the same. It might be in the genes, but I need to go away from people, listen to some music or read some poetry, and simply sit and rest and be. I think the coming days and weeks we all need to find what it is within us that helps us to rest and be apart from the chaos and concern, to sit and be, to rest and renew. We cannot continue to give and to be present, unless we are able to re-store the energies within us. We all need to find, whether by mindfulness or meditation, exercise or conversation, silence or sound, the spaces and activities, the inaction or moments that rest and renew us. We cannot overcome weariness by the exhaustion of hyper-activity.

The other critical thing that helped my mother deal with her weariness was to re-connect with others. Through relationship she found a solidarity of support which gave energy and assistance. Through conversation and chat, gossip and laughter, on topics unimportant and irrelevant, she found a way to disconnect from anxiety and activity and to be with others. Now I recognise this very ability to relate is diminished by the restrictions we are all living under, but I think again it is critical for us all to re-discover the importance of conversation, of talking through our troubles and airing our concerns, which we were so much better at in the spring. ‘No man is an island’ has never been a more true saying than it is in these dark days of disconnected and isolated January. We have to find ways to converse with difference which drags us out of what we are doing, and which helps to give us a different world view or perspective. It may seem strange but for so many, myself included, the act of talking helps to renew and restore.

But perhaps the most important lesson I learnt about the way in which my mother dealt with weariness was the sense she always arrived at – her awareness that you cannot wallow in weariness but have to work through it to a point of renewal. Even writing that seems glib and dismissive. It is a lesson I took many years to learn and at times still struggle with. It is the insight I saw all around me when I look outside this last week. It’s been a cruel and hard sharp frost where I live, and my garden has been covered in snow and ice. But as I have walked out into it this morning I have noticed with the slight increase in temperatures, an astonishing number of bulbs now showing in pots and borders. Silently, secretly, without notice and regardless of the harshness of temperature and the hardness of earth, the renewal of spring is happening all around me. I have simply not noticed.

So, weariness is ultimately re-energised by a hope of renewal and change. On Monday we started vaccinating using the AstraZeneca vaccine and yesterday we heard the news of the Moderna vaccine and the first positive research showing that the developed vaccines seem to work against both the Kent and the South African strains. This is our bud of hope bursting through a hard soil of anxiety, hopelessness and exhaustion. Vaccination and other activities of precaution will drag us into a spring of hope. These will be hard months and very challenging days indeed, but we are being pulled through by the light of hope into a tomorrow which will be changed and chastened, but which will be better than the sapless emptiness of these times.

So, “tha mi gu math sgìth”  ‘I am weary’, but I know I must, like my mother, sit and rest, restore and reconnect, and remember promise is growing around us silently, urgently, overcoming hard soil and cold days, to give birth to tomorrow.

And to end, as in so many times I find John O’Donohue insightful with some words from ‘A Blessing For One Who Is Exhausted’ :

‘Weariness invades your spirit.
Gravity begins falling inside you,
Dragging down every bone.

The tide you never valued has gone out.
And you are marooned on unsure ground.
Something within you has closed down;
And you cannot push yourself back to life.

You have been forced to enter empty time.
The desire that drove you has relinquished.
There is nothing else to do now but rest
And patiently learn to receive the self
You have forsaken for the race of days.

At first your thinking will darken
And sadness take over like listless weather.
The flow of unwept tears will frighten you.

You have travelled too fast over false ground;
Now your soul has come to take you back.

Take refuge in your senses, open up
To all the small miracles you rushed through.

Become inclined to watch the way of rain
When it falls slow and free.

Imitate the habit of twilight,
Taking time to open the well of colour
That fostered the brightness of day.

Draw alongside the silence of stone
Until its calmness can claim you.
Be excessively gentle with yourself.

Stay clear of those vexed in spirit.
Learn to linger around someone of ease
Who feels they have all the time in the world.

Gradually, you will return to yourself,
Having learned a new respect for your heart
And the joy that dwells far within slow time.’

Donald Macaskill

New Year Promises for social care: to break or to last?

Over the last few days I have had the chance to get out and walk a bit more. I am fortunate to be only a couple of minutes from a beach that goes on for miles and with the coming of much colder and frostier days it has been a quieter place. As I walked along the pristine, settled and perfect sand marked only by the currents of the cold sea I was reminded of Jackie Kay’s New Year poem, The Promise:

Remember, the time of year

when the future appears

like a blank sheet of paper

a clean calendar, a new chance.

On thick white snow

You vow fresh footprints

then watch them go

with the wind’s hearty gust.

Fill your glass. Here’s tae us. Promises

made to be broken, made to last.

At the start of 2021 after a year which has brought much trauma and heartache there is indeed a sense of a ‘clean calendar, a new chance.’ There are still inordinate challenges to face in terms of Coronavirus not least in terms of the roll-out of the vaccines and ensuring equity of treatment and response. But the opportunity for a new chance, has perhaps never been more the case than it is for social care services and supports in Scotland. We have the findings of the Independent Review of Adult Social Care due later this month, combined doubtless with significant debate as the political parties gather their policies together to present to the Scottish electorate in May. There will be a lot of talk and chatter about care. So, after decades of political obfuscation and silence, the time has finally come for social care to become a central actor rather than a small walk-on-part on the political stage. This will be a critical year for the future of social care in Scotland. I hope it will be a year where we do not miss the opportunity of making a real difference and where we can also avoid the pitfalls of party-political wrangling where ambition is placed ahead of reality and truthfulness. I hope it will be a year of promises made to be kept not to be broken.

Yesterday Scottish Care launched a further contribution to that debate. It is an encouragement to folks to make it a ‘new year resolution’ to shape the positive future of social care. Back in November 2020, Scottish Care developed the concept of a ‘Social Care Garden’ through its Collective Care Futures programme as a way to imagine and share our vision for the future of social care in Scotland. This was included as part of the ‘What If & Why Not’ submission to the Independent Review of Adult Social Care.

Scottish Care is now taking this a step further by inviting people to be part of this collaborative vision for the future to capture our collective aspirations. To do this they are curating a ‘Social Care Mosaic’ for the Care Futures Garden.

Through the ‘Social Care Mosaic’ they aim to capture the imaginations of the people of Scotland to better understand the values of social care and generate collective action to support the wishes and dreams people have for this context for the future. You can share your ‘tile’ for the mosaic by sending a virtual postcard to  https://scottishcare.org/social-care-mosaic/

So, what would I put on my tile? What are my hopes and aspirations for social care in 2021? What are the promises I want to see lived out?

A promise to people. Social care is first and foremost about people. It is not a series of transactions and tasks; it is not about services and supplies. It is not about ‘doing to’ but working alongside. It is not telling and instructing but listening and adapting. It is not about creating a service and expecting the person to fit into the shape of what you offer and allocate, but changing the system and the services to be shaped around the needs and wants of the individual. This is a huge challenge – this is not person-centred care but person-led care. It is a disempowering of the centre in order to empower and enable the individual to flourish.

A promise to communities. Social care at its best is about creating conditions where communities of people can flourish through the individual contribution and insights of the individual. It is all about relationship – keeping people connected, independent and autonomous whilst reducing loneliness, isolation and despair. It is an authentic working through of problems rather than an illusory attempt to solve marginal concerns. That is why commissioning 15-minute visits for someone which deny them the ability to relate, to talk, to be and which instead treat them as functional units to be attended to, are so abhorrent to me. Relationship can never be achieved by a timepiece it can only be fostered by the freedom of respect and dignity.

A promise to listen. We have as a society become too accustomed to the voice of ‘informed’ commentators who have not walked in the shoes of those who live their lives receiving support and care, those who work at the care face and those who manage and support. I hope that whatever is designed in 2021 originates from, is resonant with, is consistent to the lived experience of those who are most important, the people who are impacted by social care and the systems politicians, commissioners and organisations create. And let us be careful that we do not just listen to those whose voice is loudest and most articulate, it behoves us to search out those whose silence and diffidence resonates with truth, who are not often included in what we have come to create as an industry of consultation and engagement.

A promise to enable choice. Individual choice and control are at the heart of a human rights-based approach to social care. If you remove them, if you limit diversity, if you create a one-sized fits all, take it or leave it approach, then you reduce the capacity of an individual to take control of their life and to be truly independent. Those who want to keep control and power never want to devolve  choice to individuals. they offer instead the mirage of choice which is limited and safe. real choice is a radical ownership of control by the individual. That is why care is a collaborative activity which upends the expectations of those outside by taking heed of the desires, ambitions, and dreams of those who matter most – the person requiring support and care. That is why the individual has to be the navigator of their own journey, the controller of decisions about their own life. Choice is not the enemy of individual rights, but uniformity just might be.

A promise to resource. Of course, during any election period, perhaps especially one after the trauma of a pandemic, the air will be full of aspiration and promise. But if they are promises and commitments made without costing, without a grip on fiscal reality; if they are sold without a price-tag attached then they are empty, vacuous, dangerous and frankly insulting. We cannot continue as a society to buy care on the cheap and cast blame away from those who originate contracts and allocate budgets. We cannot continue to allow the inequity which sees some have to sell their inheritance to care for their family, and others largely unaffected simply because of the lottery of diagnosis. If we are to truly keep the promise to social care in 2021 then we need a grown-up debate about how we are all collectively going to pay for that care. To do other is to take us all for fools.

A promise to value. Will we get to the stage where the value of those who receive care and support is acknowledged; their contribution as citizens fully enabled , and their role as intrinsic to community recognised? We have still too much passive aggressive dismissal of the central and critical role of those who use support to enable contribution. Will we finally not just ‘clap for carers’ but create systems of properly commissioned contracts which reward workers and value them properly, with terms and conditions that are equal regardless of who the employer is. Will we end the shameful hypocrisy of one part of the system lauding itself for being fair in employment and practice yet purchasing care from others in a way that prevent equality and fair work. Care needs to be elevated from an after-thought to become a mirror of our society at its best.

A promise to be ambitious. Ambition here is not about model or structure, about ownership or system. Ambition is about humanity. Will we seek to create a social care system where the citizen has control and autonomy, where power rests with the individual rather than the State, where the ingenuity of inventiveness is encouraged just as much as the predictability of the routine? Will we create a system where the pathway from home to hospital to home or care home is led by the needs of the individual rather than the professional; will ‘professionals be on tap or on top’? Will we create models where the person most affected is the evaluator of quality and where improvement is an exercise of mutual creativity and reciprocal trust? Will we be pulled and stretched by the creativity of our collective ambition or limited by the constraints of the predictable and familiar?

Lots of promises, lots of hopes and all of them rest on our working together not apart, seeking the interests of the many not the few.

 I finish with the words of someone who to my mind is one of America’s greatest living poets, the environmentalist W.S.Merwin. It is a poem on the importance of keeping hope alive, and I really do trust that the promises for social care keep being fulfilled in 2021. I yearn for a year where  the promise of social care to transform our common humanity grows into fulfilment, rather than have that promise lie shattered in the fragments of our hoping:

To the New Year

With what stillness at last

you appear in the valley

your first sunlight reaching down

to touch the tips of a few

high leaves that do not stir

as though they had not noticed

and did not know you at all

then the voice of a dove calls

from far away in itself

to the hush of the morning

 

so this is the sound of you

here and now whether or not

anyone hears it this is

where we have come with our age

our knowledge such as it is

and our hopes such as they are

invisible before us

untouched and still possible

 

W.S. Merwin, “To the New Year” from Present Company (Port Townsend, Washington: Copper Canyon Press, 2005). Copyright © 2005 by W. S. Merwin.

 

 

Donald Macaskill

 

 

 

 

 

 

A lament for 2020: loss and grief in a pandemic year.

In this last blog of 2020, I find it difficult to do anything other than reflect on the events of the last ten months.

Throughout my childhood I was brought up with an awareness that remembering the past in all its joy and pain, putting together the stories of sadness alongside memories of happiness, was not escapism and delusion, but rather essential and intrinsic to living life to the full. Indeed, failing to do so prevented you from moving forward into both a personal and a collective future.  Remembrance is essential for a person and a people to be and become whole.

In my upbringing I was reminded of the truth of this reality every time I looked out of the window of my mother’s croft house in Glendale, Skye, towards the distant hill on the other side of the glen beyond which was the small township of Borreraig. In that clachan of crofts, the great MacCrimmon family had for generations lived and held sway. They were the exemplars of the great tradition of piobaireachd music for the Scottish bagpipes. “MacCrimmon’s Lament” is perhaps the most famous and is often played at Highland funerals, dating  back to the Jacobite uprising of 1745. Within piobrocheead the classic theme of the music is one of lament, which itself is a form in literature, art and music that constitutes some of the oldest creativity in the world.

Lament is not a wallowing in the pain and distress of the past, but rather a gathering up of the threads of brokenness until they are woven into a rhythm of resonant recollecting. To lament is to mouth or sound out one’s pain, to seek to make sense and to simply be present in grief. Its insight is that the act of grieving and remembering are woven into our humanity. We cannot have hope unless we remember.

At the start of the year when in February along with colleagues I was writing a Guidance document for Coronavirus for the care sector, few of us could have imagined the nightmare which would begin to unfold both across the world and in Scotland. Most of us thought that as we went into lockdown that we would be talking a few weeks at most – never many months. None of us could have fathomed the depths of loss and desolation that would become the experience of thousands  especially in our care homes.

There will be time for examination and investigation, for Inquiry and Review, but as this year comes to its closing, I earnestly believe that it is more important than ever that we take time to remember every single individual who has lost their lives both directly to the virus and as a consequence of the pandemic and our precautions.

Throughout this year and in this blog I have shared stories of dozens of folks, some I have known, others who started as strangers, but mostly of those who have struggled with grieving and loss, with absence and loneliness in these Covid times. I have never been so privileged as to have become the companion of such lives.

The daily arithmetic of statistics on TV or media can sometimes deaden our appreciation of the truth that behind every single number there is a story of a man, woman and child; a mother, father and brother; a lover, husband and wife. Each one known to someone or maybe to too few, some sadly known to me personally but most of them people whose parting and death have brought aching emptiness and sorrow.

Behind every number there is a face which will never again break into a smile of recognition or with glinting eye welcome family and share laughter.

Behind every number there is a life cut short, stories and tales untold, ambitions and dreams unfulfilled.

Behind every number there was someone who mattered, who lived and breathed, who left a mark on the earth they were bound to and to which they will return.

Behind every number, there was someone who was the whole of life, the totality of everything, the purpose of someone’s loving.

Behind every number was someone who still had laughter to share, forgiveness to offer, and a future to unfold.

Behind every number was someone who was birthed into being through pain and love and now is no more.

And therefore, we must never forget or be allowed to simply grow accustomed to the numbering of loss and the predicability of this pandemic.

I lament not just for those who have died from Covid but all who have died in a year unlike any other without the assurance and strength, without love and family.

I lament for those who have been unable to celebrate the lives of those they have lost and be together in love through ritual and recollection.

I lament for those who have lived their lives cocooned in protection but hidden from love, absent from the touch of family, distant from the reach of embrace.

I lament for those who have struggled with the anguish of losing their jobs, of disappearing self-worth, whose sense of self and purpose has disintegrated.

I lament for those who have been confronted by the demons of addiction and the anguish of their inner self, wracked by mental distress and trauma of memory.

I lament for those frightened by the fear of this pandemic to a point that they have lost their joy and hidden themselves away from hope.

I lament for those who are simply tired and weary of worrying and protecting, of masking and distancing, of working and encouraging, of being there, and being present for others.

There is much to lament for and there is necessity to do such.

2020 demands from us the spirit of lament, not one that settles in the distress of days gone by but one that seeks through that recollection to give energy to a determination to do things differently, to be better, and to change our future.

In my mother’s tongue December which is bringing this awful year to its end is called an Dùbhlachd, which means literally ‘blackness.’ But in the oral tradition of my grandmother, it is also a word which has within itself the sense that December is a time which also brings us the stirring of the seeds of hope and renewal. This last week I have watched the winter solstice and the slow turning of the seasons towards the lengthening of days. There is within an Dùbhlachd a sense of renewal and turning. Nothing stays dark forever. There is nothing more powerful than the flicker of light in the deepest darkness.

So, the day after we have celebrated Christmas, which for many was the strangest and saddest of days, and in the between time of our festive celebrations, I will lament and mourn, I will remember and grieve … but over time the words and the music of such sadness and loss which 2020 has given will become distant and disappear into silence. Tomorrow and the next day I know that I will need – as all who grieve – to turn my face to the dawn, to rise up and to face that future. The lament will become an echo, a memory, but one whose sound will remain inside for ever.

Lament

Being old did not define them
the lives they lived
the lives they gave and made
through hardship and hard work
with few if any luxuries.
The loves they loved and gave,
the hugs, the smiles,
some tears, much laughter.

They were our mums and dads.
We gave them the joy of our children
to make them great and grand for another generation.

This is who they were.
They were not expendable.

We are not the herd.

In memoriam for Pat Cooper b 14.09.1925 d 28.03.2020

Trish Davies
Deputy Chair, Relatives & Residents Association

 

Donald Macaskill

Extraordinary humanity: Christmas stars and ordinary humanity.

On Monday December 21st  and for the next couple of days until Christmas Eve in the early evenings along with many others I will be looking up into the sky hoping it will be cloudless as I attempt to see evidence of one of the celestial rarities. I will be searching for what is called the Great Conjunction which is the coming together of Saturn and Jupiter in their closest alignment since 1226.  The event happens  when the solar system’s two largest planets appear side by side in a “great conjunction” above the horizon soon after sunset.

It has been reported that the Vatican believes that the original Star of Bethlehem may have been such a Great Conjunction. Be that as it is may at the end of the coming week, we will be celebrating the Christian festival of Christmas. It will be a time of especial importance to those of Christian belief but even to the millions of others who are not Christian, Christmas Day has a significance way beyond its 24 hours. This year we will be spending the day in very different ways to the norm. This will be exceptionally hard for many not least those who have been separated from their loved ones for too long in care homes and in community.

Twenty-nine years ago, I was privileged to spend some time in Bethlehem and in Israel-Palestine in general. Bethlehem is a town of modernity etched with memory; its significance as a place of new beginning and possibility is worn wisely upon its ancient shoulders. It was also beyond the romanticism of tourist trinkets and pilgrim souvenirs, a place of grinding poverty, inequality and discrimination. But one of my lasting memories of my time there was that it and its predominantly Palestinian inhabitants were singularly proud of belonging to a place of becoming, of being citizens in the birthplace of the Christ. I remember talking to someone there and quizzing them about what was special about the place given that there was huge historical and archaeological debate and scepticism about most the so-called ‘holy sites.’ The response was simple, ‘This is a place where the ordinary is turned into the extra-ordinary.’

There is indeed a truth in that analysis. Throughout the history of both the cultural and theological depiction of the birth of the Christ, there is an inescapable simplicity of interpretation, which would contend that this is all about the ordinary becoming extraordinary. In a turning of the tables of expectation Christians believe that divine power and omnipotence incarnates itself into the fragility of flesh and blood. The power of the universe and creation is imaged in the vulnerability of a new-born, defenceless child. The assertion is that the extraordinariness of divinity becomes the ordinariness of humanity, and by this the Christian story asks for the elevation of humanity in all its reality, vulnerability and pain.

So, next week when I look to the skies, I might not be searching for a Star of Bethlehem, and given the Scottish weather I might not even see a Great Conjunction, but I will spend time reflecting on the truth that it is in the ordinariness of our living that we are surprised by the extraordinary, that wonder and awe is enshrined in our humanity lived at its best.

And as I reflect, I will know deep down that the year that has passed has evidenced that truth. We looked out from lockdown and watched folks going about their daily work despite carrying the burden of fear. They were ‘ordinary’ people doing ‘ordinary’ jobs which on any other day and at any time would have gone unnoticed, unheralded and poorly rewarded. They were the home carers, the cleaners and supermarket staff, the nurses and bus drivers, the care home staff and hospital porters. They were evidence of the ordinary being turned extra-ordinary.

As most of us sat cocooned in safety away from the virus, we witnessed communities coming together in acts of generosity and kindness, finding solidarity in the midst of suffering, and supporting one another to be our better selves. Whilst the air may have been tangible with absence and isolation, there was also as sense of mutuality and concern, which went way beyond the clapping of a Thursday night or the platitudes of politicians.

Christmas is about turning the tables of expectation upside down. The coming days will undoubtedly be filled with concern and anxiety for many, regret and loneliness for yet more. They will be days of memory when the absence of a loved one who has died will ache particularly hard. There will be moments when Christmas days of the past, togetherness and laughter will fill memory and bring tears. But I hope it will also be a time when we think of those who have given to others in so many ways in the months that have passed. They have given to each of us the priceless gift of compassion and community. This may be a Christmas less ordinary but it is also one whose strangeness should give us space to reflect and remember, to be thankful for and to commit to being different and better.

One of the most famous poems of this season is the ‘Journey of the Magi’ by T.S.Eliot. Written nearly a 100 years ago, and now most definitely of its time, it describes the experience of the Magi, the ‘wise men’ of our childhood nativity stories who followed a celestial happening to arrive at the birth of a baby. In one glorious phrase Eliot describes them changed by the experience of following that star to see birth contradict expectation. The experience transformed them forever so that they could not go home to the routine predictability of their past life. ‘We returned to our places, these Kingdoms, But no longer at ease here, in the old dispensation,’

I hope that whatever we do on Christmas Day and whoever we are with, that we might look to the skies and spend some time thinking of those whose ordinariness of living and loving in the last nine months has the potential to transform us all, and as we do to remember those for whom this season is one of sadness and absence, and who this year will be more alone than silence. I hope we will give space and time to all those unnoticed and unloved. I hope that we can all have the courage to find a determination to learn from the pain of the last few months and commit not to return to the way things have been or still are, but to walk together into the creation of a new, more human way of being. I hope that we will carry with us into that future the gift of ordinary loving made extraordinary.

Happy Christmas  when it comes.

“A cold coming we had of it,
Just the worst time of the year
For a journey, and such a long journey:
The ways deep and the weather sharp,
The very dead of winter.”
And the camels galled, sore-footed, refractory,
Lying down in the melting snow.
There were times we regretted
The summer palaces on slopes, the terraces,
And the silken girls bringing sherbet.
Then the camel men cursing and grumbling
And running away, and wanting their liquor and women,
And the night-fires going out, and the lack of shelters,
And the cities hostile and the towns unfriendly
And the villages dirty and charging high prices:
A hard time we had of it.
At the end we preferred to travel all night,
Sleeping in snatches,
With the voices singing in our ears, saying
That this was all folly.

Then at dawn we came down to a temperate valley,
Wet, below the snow line, smelling of vegetation;
With a running stream and a water-mill beating the darkness,
And three trees on the low sky,
And an old white horse galloped away in the meadow.
Then we came to a tavern with vine-leaves over the lintel,
Six hands at an open door dicing for pieces of silver,
And feet kicking the empty wine-skins.
But there was no information, and so we continued
And arriving at evening, not a moment too soon
Finding the place; it was (you may say) satisfactory.

All this was a long time ago, I remember,
And I would do it again, but set down
This set down
This: were we led all that way for
Birth or Death? There was a birth, certainly,
We had evidence and no doubt. I had seen birth and death,
But had thought they were different; this Birth was
Hard and bitter agony for us, like Death, our death.
We returned to our places, these Kingdoms,
But no longer at ease here, in the old dispensation,
With an alien people clutching their gods.
I should be glad of another death.”

T.S.Eliot, Faber and Faber.

 

Donald Macaskill.

Welcome creates community: a personal reflection on migration.

Regular readers will know that my family roots for generations are in the peat and crofts of Skye. My own parents were the first of their line to venture permanently from their villages to seek livelihood elsewhere. They were representative of thousands who sought economic security and prosperity away from the straths and glens of their upbringing. In the years after the wars of the 20th century echoes of emptiness began to fill once vibrant places. My parents were part of the so-called ‘Highland Diaspora’ which formed in the cities of the central belt and most especially Glasgow. Indeed, my late mother used to say that she heard more Gaelic spoken on the Dumbarton Road in Patrick than in her own home village. So much so that my earliest memories are filled with recollections of ceilidhs, song, poetry and entertainment which almost became a weekly ritual of re-connection, a binding back to home and a renewal of identity. What they found in their newly adopted city was a place of welcome, a people open with practical ways of making you feel that you belong, neighbours able to catch hold of hurt and offer healing, a place willing to learn from the stranger and change when it was needed, a community moulded by warmth to make the stranger feel at home.

But despite a real sense of belonging, I also always felt in my parents a sense of dislocation and tension. They loved Glasgow and it’s in your face realness and freedom, but they also ached for the abandonment of hills and the warmth of Hebridean belonging, they yearned for the familiarity of language and dialect, for the predictability of the changing landscape of their childhoods. They were in every sense of the word migrants in a city of tenement and sandstone, and maybe it’s not surprising that their friendships were often with those who knew the rhythm of their own heritage and sensed the timbre of their own tale. It is maybe not surprising that my mother especially formed friendship so easily with those who came new to the neighbourhood, regardless of which part of the world they came from. In their eyes she saw the sense of yearning but also the desire to belong.

It is I suspect because of the sense of being the child of those who had not fully settled, those who felt at first strangers amongst the people around them that I have always warmed to the experience of the incomer, the migrant, and the new arrival.

A lot of those emotions came back to me last week when I received an email from someone I know who works in a care home. She is Polish and with her family has made Scotland her home over the last decade and a half. Her letter was one of both gratitude, sadness and anxiety. Like many others in our care homes during Covid19 she has gone above and beyond in compassionate care for those who she supports. She is no less committed to ensuring the dignity of residents today than she was at the start of the year. But what has changed is a growing sense within her that she is increasingly not welcome, not by her colleagues, her community or even her nation. Rather she expressed a deep concern about the implications both of the Brexit negotiations and also what the new measures on UK immigration might mean for others she knows. She described a growing media rhetoric and political tone which has made her feel she is not needed, not wanted and not welcome. I find it deeply sad that she is so unsettled by a political environment which has created such uncertainty, division and at times xenophobia. The contribution which she and so many thousands of others have made over the years to making Scotland into the place I call home can never be under-estimated. Over 6% of our care workforce in Scotland come from countries in Europe other than Scotland. They have shown themselves to be the best of us, full of life and love, compassion and care, a living example of how you build community by having an open door rather than a closed gate. Yet in recent weeks and months so many have been made by others to feel unwelcome and unwanted.

Next Friday, the 18th December, is the United Nations International Migration Day. It is a day to recognise the astonishing contribution of those who leave their place of birth to go elsewhere. It is a day to affirm their human rights.

In a very real sense, we are all of us the inheritors of the courage of those who despite all the odds moved from their own place to go out and to seek a better future and a new life, some because of little choice, many because of the ambition of their humanity. Scotland perhaps more than any other nation is a nation of migrants.

The mark of any civilised society is the extent to which you prepare a place of welcome for the migrant. It is a descriptor of the nature of true community which we are increasingly called to protect and advocate for. The UN states that today more people than ever live in a country other than the one in which they were born. While many individuals migrate out of choice, many others migrate out of necessity. In 2019, the number of migrants globally reached an estimated 272 million, 51 million more than in 2010. One of every ten migrants is under the age of 15.

As the son of those who were strangers in a new place, and as I remember those from my widest family who left these shores to go to distant parts of the earth to make their own beginning, I recognise both the ache and the loneliness of their experience, but I also acknowledge the vibrant, ingenuity, contribution and skill brought about by those who together seek to create a new community and a new nation. The Covid19 experience has taught us all how connected we are one to the other across the globe. It has shown that the solidarity of compassion is stronger than self-interest.

Today as I write this blog there is real uncertainty over the future of our relationship with the European Union as Brexit talks go to the wire. But regardless of the traumas ahead one thing I remain convinced of, and that is that to be strong, creative, contributive and compassionate, we need to hear voices that are not our own, dialects which are new to our ears, ideas which challenge our practice, innovation which upsets our predictability – in other words we need to be a nation that welcomes the migrant and the stranger. It is only as we weave together the threads of our common humanity into shared purpose that we create true community and a modern nation.

Years ago, I spent time reading the stories of those who had been immigrants from Europe into North America. Many of these were Scots and I remember looking for my family name on the etched memorial stones of Ellis Island and searching for ancestors amongst the stories of arrival in Canada. Their memories resonated with the feelings of my own parents and forbears who left Scotland.

In Halifax, Nova Scotia, where so many from Skye arrived as strangers, there is a tremendous collection of poetry written by the new settlers, some at that moment, other years later. I end with one of these because its simplicity shows what we gain by being a place of welcome, by having an open door to the world. It shows that what our care sector has cherished the most from its international workforce, is not solely an economic or physical contribution, but rather the dedication of individual hearts which is daily given to create new community. We dare not lose this.

It was a
rough crossing

their landing
delayed by fog

& darkness.
Four of them

travelled inland
knowing nothing

of this land now
theirs. A

lifetime later
the sole survivor

returns to
this place bearing

witness to
an act of courage

recorded now
on fragile paper

& on the surface of
a human heart.

A poem written by Harry Howie, a Scottish Immigrant, who travelled aboard the Aquitania, arriving October 1948 in Pier 2, Halifax.

Donald Macaskill

Towards a human right for infection prevention: a blog for Human Rights Day in the year of the pandemic.

One of the most famous pieces of writing about human rights undoubtedly belongs to the so-called Mother of Human Rights, Eleanor Roosevelt who wrote:

“Where, after all, do universal human rights begin? In small places, close to home – so close and so small that they cannot be seen on any maps of the world. Yet they are the world of the individual person; the neighborhood he lives in; the school or college he attends; the factory, farm, or office where he works. Such are the places where every man, woman, and child seek equal justice, equal opportunity, equal dignity without discrimination. Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world.”

Today is UN Human Rights Day. It is an annual opportunity to reflect upon and to celebrate the role and value of human rights in modern society. For Eleanor Roosevelt, in order for human rights to have meaning and purpose they had to speak to the ordinariness of human living, the mundanity of interaction and the essence of what it meant to be related both to friend and stranger. This last year has been a year unlike any other for all of us but perhaps especially for those living in our care homes and for their families. Theirs has been an experience of a world turned upside down and inside out. Places of interaction and busyness have overnight become empty and silent; the love and touch of family has been excluded in the name of protection and suppression of the virus; the devastation of death and disease has taken too many lives and harmed beyond healing the lives of yet many more. This has been a truly awful year and for many remains so.

In this short piece I want to reflect on human rights and what has happened in aged care facilities and in care homes. I have commented elsewhere and will leave to another time a fuller analysis about whether what has happened in Scotland and what we have permitted to occur has indeed as is oft commented upon been on the one hand a ‘human rights scandal’ or on the other hand been the necessary yet distressing proportionate balancing of protection with freedom. Here I want to reflect on one of the major challenges both in our response to the Coronavirus to date but also inevitably into the future – the role of infection prevention and control (IPC). In doing so I am drawing on thoughts from a talk to the New York Academy of Medicine a few weeks ago in which I took part in an international exploration of the role of IPC in care homes across the globe. I am very grateful to colleagues for insight and conversation. In that conference I called for the urgent articulation of a human rights-based approach to IPC. I think such a development would be an appropriate legacy as together as societies we seek to live in the face of pandemics.

My starting point in this reflection is the personal supposition that human rights are essentially first and foremost about relationship and only secondly about legal recourse. The development of the UN Declaration of Human Rights was an attempt to set right the perversity of human interaction and exchange which had so corrupted and destroyed millions of lives. The inability to be truly human and to treat the ‘other’ with dignity and respect had cruelly overshadowed the world, leaving lives shattered and annihilated in the horrors of the Second World War. Those who gathered together in New York in 1948 sought to state in ink and on paper a framework for relatedness and co-responsibility which would act as a mirror for a world seeking to grow again and heal itself after the rotten harvest of hate reaped in the years before. Their aim was to centre humanity upon principles of mutual regard, respect, togetherness, solidarity and peace. But critically, as Roosevelt opined, these principles had to be and were to become rooted in the realities of normal encounter and community. They were not the statements of a paper treaty, inscribed on a parchment scroll unopened and unchanged – they were and are a living, breathing and vibrant document by which the world would be changed into togetherness, and in response to such change the Declaration would itself seek to grow and mature.

So, against this premise that human rights are about relationship, the restoration of co-responsibility and mutual regard, what about the way in which infection prevention and control has worked out during the pandemic in care homes?

I want to use the international framework PANEL to pose some questions and raise some issues. PANEL stands for participation, accountability, non-discrimination, empowerment and legality.

Participation.

The embedding of a human rights-based approach to any scenario or situation requires participation and involvement of those most affected either by a practice or by decisions being made. There is I believe a very real sense that we have as a society failed to engage with, include and involve those who have been most affected by decisions to lockdown, to limit, constrain and exclude. ‘We’, whoever that ‘we’ have been, have done to and decided for.

Now I am the first to accept that in a crisis, when the ship is about to hit the rocks, then you need decisive action not debate to steer away from the danger. So, in the initial stages of the pandemic decisions could not be as participative and inclusive as they would ordinarily be. It was entirely proportionate and reasonable, in order to achieve the legitimate aim of immediate protection and safety, to literally save lives, to take measures without consultation and engagement. But… there comes a time when the prevention of infection and the control of it by actions which exclude and potentially cause more harm, necessitate not just compliance but owned acceptance and consensual agreement. There comes a time when the autonomy and rights of individuals, whether residents or family members, mean that they require to have their voice heard and their words listened to. We have, I would contend, failed to adequately hear and listen to the voice of individuals who have been residents in our care homes. Now I am not talking about direct care and support because staff and others have continually engaged and involved residents. What I do mean is the extent to which decisions have been taken, suppositions made, and positions adopted  without the direct consent and involvement of people most affected. Acceptable initially, but increasingly indefensible as time has progressed and most certainly inexcusable nine months on. This relates not just to general guidance around visiting and exclusion, but also around self-isolation, encounter and interaction in a care home, around the ability of ‘free’ citizens with capacity to leave a building and their right to engage as equal citizens in normal activity and as part of wider community.

In summary, infection prevention and control measures have at times not been rooted in the human rights principle of participation, involvement, agreement and consent.

Accountability.

The second element of PANEL details that in any human rights practice there must be clear lines of accountability and responsibility. At essence when restrictions have had to be enacted there must be a mechanism to ensure the proportionate and reasonable application of restrictions. I fear at times we have used a sledgehammer to crack a nut. I fear that we have adopted IPC measures suitable and appropriate for an acute hospital setting and have sought to utilise these – with very little adaptation – into an environment which is a home. Care homes are not institutional settings but environments where there is group living and exchange, interaction and neighbourliness.

Another aspect of accountability must also surely relate to the degree to which scrutiny and inspection is used to assess and protect the human rights of any individual in any context. I seriously question whether scrutiny has achieved this outcome. Scrutiny in human rights terms involves a monitoring to ensure that the rights of citizens are protected even in instances where the State decrees an intervention is appropriate and proportionate. I think we need to have a serious debate about the extent to which the curtailment of individual human rights in the name of infection, prevention and control and to enable the safeguarding of the many has been accountable to the legalities of our human rights frameworks. Criticaly there is a clear necessity for independence in advocacy and voice where it is felt that the rights of individuals have not been given due accord.

Non-discrimination and Equality

This PANEL principle states that all forms of discrimination must be prohibited, prevented and eliminated. It further states that people who face the biggest barriers to realising their rights should be prioritised. I do wonder if our response to the challenges of aged care facilities across the world, not just in Scotland, has been influenced by widespread ageism and discrimination. Have we treated older person care and support in the way in which we would have others – in terms of prioritisation, resource, support and focus – I fear we have not. Have we sufficiently adapted measures and interventions to take account of the peculiar needs, for instance of those living with dementia and cognitive decline? You only need to speak to a care worker to learn just how impossible it is to encourage compliance around isolating in a room from someone who has no memory of instruction or understanding of their actions. Have we really understood the fear and hidden silence of those whose lives of encounter and banter were marshalled overnight into detachment and distance, where touch was removed, and contact curtailed? These are profound human rights questions which go to the heart of not just what is desirable in our infection prevention practices but what is morally and ethically acceptable and achievable without the limitation of autonomy and individual rights.

Empowerment

At the heart of this is the sense that everyone should understand their human rights, and be fully supported to take part in developing practices which affect their lives. I have stated above the absence of voice from those most affected. But when I look around at the global response to aged care, I see little evidence that internationally we have enabled professionals in care to be the leaders and to act autonomously in infection prevention and control. Rather the international commentary and contention has been that an overly clinical approach with all its assumptions has been utilised in aged care settings and that we have failed to adapt measures around IPC, resulting in a lack of fit for context and serving to dis-empower and negate the professionalism of care staff.

Legality

Lastly on this day especially I have to pose the question about the degree to which our international use of IPC measures has indeed been legitimate, proportionate and even legal in accordance with national and international frameworks and treaties.

Article 2 of the European Convention of Human Rights seeks to protect life – but it also acknowledges that the preservation of life is not the same as existence and the continuation of days. Have we protected life at all costs failing to respect individual wishes (even in a collective and group living environment)? I will never forget the email I received from a man of 104 who simply wanted to have a few hours with his children rather than months of isolation.  Article 3 clearly states that to treat individuals in a manner that strips away individuality, that damages their wellbeing both physical and psychological can be deemed to be equivalent to treatment which is degrading and demeaning of humanity . But perhaps most explicitly have we adhered to the requirements of Article 8?  Have we enabled people to exercise family life, to maintain and enhance psychological and physical integrity?

For all the legal requirements preventing human rights abuse is only one step towards the  fulfilment and realisation of these rights. There must also be active agency which results in deliberate intervention and action to promote and enhance these self-same rights. It is not enough just not to do; we are compelled positively to act.

I know I have posed more questions than offered answers. I know there will be some who read this as a treatise in simplicity, but on this Human Rights Day I would contend that it has never been more urgent than it is now to develop and articulate a response to infection which balances the rights of individuals better than what we have seen and still see in many places across the world. I would suggest it is a critical human rights question of our time.

There is no smaller place, no place closer to home, than the places and rooms, than the care homes and aged care facilities of our communities. We owe it to our better selves to ensure that we develop a more proportionate, risk-balanced, rights-respecting global approach to infection prevention and control. Not one that ignores the science but moulds that science to the realities of living and community; that grounds measures of intervention and restriction in a way that upholds and enhances the dignity, autonomy and human rights of all affected.

“Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world.”

 

Donald Macaskill

Care as community – a tale of Springsteen and homecare.

Over the last few days, I have spent some time reflecting and preparing for Homecare Day which will take place this coming Wednesday 9 December. The theme of the day is ‘Care Community’ and all that homecare, and its workforce does to enable people to live and thrive, to nourish and nurture community in their own space and place.

This online and virtual day is organised by Scottish Care and the United Kingdom Homecare Association (UKHCA) and it aims to raise the profile of care at home and housing support services across the United Kingdom.

The choice of ‘community’ as the theme is a deliberate one, created in order to focus on how homecare services are essential parts of the health and social care community, as well as local communities in Scotland and further afield. Homecare services and staff provide high quality, person-centred care to support the health, wellbeing and independence of people in their own homes, with staff demonstrating skill commitment and compassion every day.

As part of my reflection, I have been pondering about the nature of community. It’s a concept which means many things to many people and one that has oft been misused for various political and philosophical ends.

Regular readers of this blog will know that I have a very strong musical weak spot – Bruce Springsteen – so the arrival of anything new by the Boss immediately gets my attention. The busyness of the last few weeks has meant that I have not had the time to do my usual with his latest release – the brilliant ‘Letter to You’. My normal behaviour would be to obsessively devour every track on a constant repeat –  but in light of the positivity of the last few days I have managed a few listens!

Springsteen has many consistent and constant themes in his music, but one of them is undoubtedly that of ‘community’. There has even been an academic paper written on the subject!  He has a distinctive although not always consistent view of community in his songs. Its not a word he uses a lot, but he sings a lot about the essence of community.

Despite my personal ambivalence about the way many commentators use the concept of community, Springsteen, for me at least gets to the heart of what community is and the tensions within the idea. At times, I fear, we can have an overly romantic view of community, a yearning for some lost essence and idyll. Folks reflect on the lost communality of days gone by when neighbour knew neighbour, when mutual regard was common practice, when you could leave your door open in safety in the busiest street. We paint pictures of connection, purpose, and unity. But as we all know life was never as bucolic as the flickering images of our memory. There is equal truth in the desire to get away, to form individual identity, to make a mark and be someone beyond the reputation of upbringing, the restrictions of association, the crowding bonds of family, birthplace and reputation.

Nevertheless, there is undeniably substance to the accusation that increases in societal  loneliness, a growth in mental health distress, a fragmentation of connection and purpose have in some part to do with a loss of connection, co-responsibility and at their heart a loss of community.

Springsteen in some of his classic songs describes this tension, both a yearning for and a need to escape the ‘battered blue collar communities of post-industrial America.’ The world of his memory is both one of claustrophobic conditioning and yet of an urgent desire to belong, to return and to be assured. For those who might want to go and listen – compare tracks on one album alone as reflecting these tensions. Listen to The River album and the three tracks “The Ties That Bind”,  “Two Hearts” and “Out in the Street”  and you can get a flavour of the inner tension of community.

“I tear on the leash
That keeps me contained and controlled
Let me go
I want to break free
And bite my way out of this hole

One last hope
To rise and break away
Above the faded line
Way beyond the ties that bind.”

Community is at the heart of homecare. The work of those who every day of the week get up and go out into our streets and homes, is about enabling another to flourish and thrive. These women and men, who not least through Covid19, have despite the challenges, are the heart of a sector so often undervalued and so frequently unappreciated. The shameful reality of basic terms and conditions, of a lack of resourcing and funding of worker and care organisation alike is an indictment against all our society. We talk the talk of hospitality and care as a society, but we fail to walk the walk in being willing to pay and sacrifice to enable those realities to come true.

Community if it is to be anything more than the lyrics of a song, or the echo chamber of idealism, needs to be paid for and fought for. The true nature of community is a solidarity that gives space, a togetherness which does not suffocate but which liberates the individual, it is a collectivism which has a common purpose broad in its reach and extensive in its arm; it is not the stuff of romantic image or syrupy memory, but rooted and raw, real and vibrant … it is what enables the beating heart to become the breath of belonging.

In essence community is the work of homecare. To be independent when you are afflicted by decline or constrained by disability requires support and care. It does not need you to be ‘looked after’ as if you have no capacity, individuality or voice. This is what homecare does day in and day out. It liberates life to belong, it enables individuals to be independent rather than dependent on others. This is why homecare should never be the afterthought when costing and commissioning social care, it is the essence of who we are as a society. Homecare embodies and emboldens human community.

The reason for that is that behind all the romantic idylls of community is the truth that we become better and more human when we replace an individualistic narcissism with the desire to be there for others, to bind ourselves into a regard for the stranger, and to commit ourselves to forming real belonging and relatedness. Care creates community.

So, it is a shameful indictment on our society and those of us who call ourselves citizens that we even in the shadow of a pandemic continue to undervalue care at home and housing support services. Because if care is the best of us, then the lack of resourcing, the marginalising of the workforce and their concerns, the lack of prioritisation for its contribution should be to our embarrassment.

This last week I have answered emails from managers and staff who simply cannot understand why they are still not being tested for Covid19 on a regular basis – months after I wrote and spoke about the need for this. I’ve received emails from those at the breaking point of exhaustion and fatigue because of the demands of wearing PPE and the continual stress and fear they are living with in their daily work. But perhaps most shameful of all I have received messages from organisations saying that they are being asked to ‘pull lunch visits’  in order to save on the packages of care for the most vulnerable. Just picture it – a 15-minute visit , during which as a worker you have safely to don and doff your PPE, then get someone up for the day, deliver personal care and attention, make sure they have their breakfast and have taken their medicine, to do all this with dignity and respect, care and compassion – then someone says to you – oh and make them a sandwich rather than go in at lunchtime. And all in 15 minutes because that’s all that the Council can or will pay for.

This is where all this talk of community sticks in the craw. We do not create community and real connection by talking (or singing) about it – we create it through our actions, the way we spend our money as a society, the way we make our decisions, and prioritise (or not) those who need care and support. On that front, pandemic Scotland is failing and falling well short.

The state of homecare is rotten to the core, it is a stench not of the making of worker or care provider, of those supported and their carers, but of those who cost and price, who save and contract, who electronically monitor and fiscally frown. We simply have to do better and to reform with a sense of urgency.

Care community is the theme for Homecare Day, and I hope you will join the social media message and conversation which will be happening on Wednesday. But in doing so I hope you will agree to work for a change that truly ensures ‘community’ is at the heart of all that we seek to do in the coming weeks and months. They will be a time requiring us all to lean upon each other, to have regard for neighbour and to listen to the stranger; they will require the amazing dedication and professionalism of the women and men who work in homecare, care home, hospital and many more places. Community never just happens by accident ; it is always an intentional act from an instinct of regard and mutuality. In these days more than any other it needs nourished and protected so that it might flourish into a spring of support.

I leave you with some words from a favourite Bruce Springsteen track. They speak of that sense that true community, true love, means no one is left behind, no one walks alone, that we have to have regard to the pace of others, that it is in our leaning on one another that we discover a belonging, a togetherness, a community beyond cost.

“ We said we’d walk together baby come what may
That come the twilight should we lose our way
If as we’re walking a hand should slip free
I’ll wait for you
And should I fall behind
Wait for me…

Now everyone dreams of love lasting and true
Oh, but you and I know what this world can do
So let’s make our steps clear that the other may see
I’ll wait for you
And if I should fall behind
Wait for me… “

Donald Macaskill

Please join Homecare Day on Wednesday 9th and for more details see https://scottishcare.org/homecare-day-2020-9-december/

 

#homecareday

The Kindness line: a reflection for St Andrews Day

I was struck by a beautiful image in the last few days. It is the postcard at the bottom of this blog. Created by Edinburgh-based illustrator Emily Hogarth it is a core part of the One Million Words of Kindness campaign which was launched in the last few days by the Scottish Government.

It is a campaign which is asking people across the country to recognise the value of connecting with and helping others by reaching out to friends, family, neighbours and communities near and far in a bid to generate One Million Words of Kindness by Monday 30 November to mark St Andrew’s Day.

Apparently more than 100,000 free postcards which feature the beautiful image have been sent to 104 Lidl stores across Scotland for shoppers to pick up and send messages of thanks, hope or a simple hello to mark Scotland’s national day. You can download and share online from the Scottish Government’s website: www.onescotland.org/st-andrews-day

St Andrews Day is of course our national day, and it is entirely apt in a year of challenge and hurt that we should be focussing on kindness.

I have to confess that I’ve had to delve into my books to try and find out a little bit more about Andrew such is the rustiness of my memory these days. Once I started reading, images of Andrew the fisherman, one of the first followers of Christ, came rushing back. They offered me a man of dynamic determination, practical matter of factness, and of someone strongly associated with place and people, with kith and kin.

Apparently, in Scotland we have been celebrating this man from Palestine since the 11th century. From the signing of the Declaration of Arbroath when he officially became Scotland’s patron saint through to our national flag, the St Andrew’s Cross, Andrew has been prominent.  Even the ancient town of St Andrews was named due to its claim to being the final resting place of St Andrew – or at least one of them! We know surprisingly little about St Andrew but one of the characteristics he seems to possess both in legend and through tradition is that of kindness.

The last year has seen some astonishing acts of generosity and kindness. People have walked the extra mile in their compassion and care, in supporting neighbour and stranger. Folks have noticeably been there for one another and the world has felt for many a little less lonely and a bit more connected.

But at the same time as we all know the pain and hardness of lockdown has caused ache and hurt for so many, with thousands struggling with their mental health and wellbeing, many feeling isolated and lonely, cut off and despairing. We know too the tragic loss that this virus has wrought in care home and community, in family and hospital. Lives have and still are being destroyed and ruined.

So, on St Andrews Day I will indeed think of the words of kindness that I have heard in the weeks and months gone by. I will think of the words spoken from pain and loss but which still thanked staff who were there to hold the hands of a dying husband; I will think of the words of kindness from shop staff who despite their own fear brought a laugh and smile to those confused by a new way of shopping; I will ponder the words of generosity from those who helped dig the garden of a disabled neighbour; the word of encouragement from the teacher to a student fearing a lost career and the word of assurance from the carer to a person who had lost touch with friends after feeling shackled up in their own house.

I will also think of the words of kindness that we need to say to one another and hear from others in the days and weeks ahead. These will be challenging times and whilst hope is on the horizon there is a hill to climb before we achieve that summit. So, we need to be less judgemental and more forgiving, we need to discover again the solidarity of the spring in the darkness of December. We need to hear these words of kindness and need to offer them also.

One of my favourite modern poets is Scotland’s Makar, Jackie Kay, who wrote a stunning poem, ‘Essential’, at the height of the pandemic which captured the acts of kindness which we were seeing all around. In an interview with the BBC, she reflected on why she wrote the poem. I hope that in the weeks before and after Christmas we can all of us find the kindness line.. that even in absence we can sense the links of our family under the same sky,  that we will reach out and touch our belonging to one another as the pulse of our togetherness, that we can bind ourselves into one another like yarn around the wheel of our days, and that we can be the strength underpinning one another should we stumble on the path to our hope. Not just for St Andrews Day but that for many months to come we can make our journey into the future by sharing One Million Words of Kindness.

Jackie Kay said to the BBC: (see https://www.bbc.co.uk/news/uk-scotland-52310996)

“In these harrowing times it’s been really heartening to see how much people have actually come together, how much kindness there’s been out there and how dependent we are on all essential workers.

“Not just people in the NHS and carers who have done an amazing job. The child care workers, the post men and women, the delivery workers, the people in the food supply chain, the people stacking the supermarket shelves.

“We’ve become as a society and as a world even more aware and are more appreciative of every single thing that people do.”

 Essential

 Up, doon, the length of our land –

Aberfeldy, Ardnamurchan –

There’s uplift, sharing; pass the baton!

A frontline forming, hand to fierce hand.

Shopfront workers, doon the aisle;

New-era queues metres apart.

The chemist’s prescription warms the heart.

Delivery folk vanish, ghost a smile.

Volunteers at the local food bank…

Shy half-moon in a clear Scots’ sky.

We leave with tins, groceries, goodbyes…

Clap in the gloaming when we say our Thanks.

And the sky greets with stars

And the bold birds sing

As we clink in our links in the Kindness line;

Holding absent hands for Auld Lang Syne.

 

 

Donald Macaskill

Yearning for Christmas Past in Covid times: a personal reflection

Well, I have seen my first one of the year – my first Christmas tree – and it is not even the start of December ! I have spent a lot of the past week talking and planning for Christmas. Even though it is 5 weeks away there has been an awful lot of debate and discussion about Christmas. The media has been filled with stories of the four administrations of the United Kingdom being in dialogue with one another about what they can do in order for individuals to have a ‘better Christmas.’ People have been expressing the hope of being together with family and friends and of holding something which is more like the Christmases we have known. There has been discussion about what every day of ‘freer engagement’ will mean in terms of societal restrictions both before the Christmas season and in January.  I have found the debate and discussions both fascinating and frustrating.

Now I should state at the outset that I have always been a lover of Christmas. In fact, disproportionately so it is probably my favourite time of the year. I am a sucker for its traditions of carols and music, whether the dulcet tones of Bing Crosby or the modern classics of a Michael Bublé; I adore the food and the celebration, the conviviality and community; the sense of connection with past and the optimism of possibility.  I have grown ridiculously fond of the rituals of movies such as  ‘It’s a Wonderful Life’, or the classics of ’Scrooge’ or my latest love ‘The Grinch.’ I mention all this lest I be instantly dismissed as a modern-day Scrooge or a reincarnation of the Grinch himself.

When I have reflected on the fascination and interest in Christmas this year the feeling that comes to mind is one of ‘yearning’. There is a deep longing and desire to have something which is familiar and deeply ritualistic in days which have been scarily different and lacking in the securities of patterned predictability. Feed into that the fact that for many people the essence of Christmas is indeed about longing, nostalgia and a re-enactment of memories in the moment and you have a concoction of desire that means that folks are desperate for a non-Covid Christmas.

My personal concern and I know this is shared by many in the conversations I have been having is that we are at risk of undoing all the hard work and sacrifice that so many have endured and suffered over the last nine months in order to have connection for a few days at Christmas. Now that may sound callous but those who have worked so hard to keep people safe in care home and community, who have had to experience the desolation of absence and lockdown, who have witnessed and lived through the tragic instances of the virus spreading and killing so many, those are voices which are fearful and anxious about what a Christmas period might bring.

However, let me be clear there are some things we need to nail straight away. I have heard from care home providers this week that they have been told not to allow presents or cards, not to put up decorations or Christmas trees. What tosh and folly. There is absolutely no reason in terms of infection prevention and control measures for any of these restrictions. A tree and decorations are perfectly possible if they are placed in locations which prevent them from being touched; cards and presents can be given, as they always have been, providing they are cleaned and isolated for some time and so on. We cannot allow fundamentalist and erroneous interpretations of IPC to become the modern day grinches.

What is equally important is all the work that I know is going on to ensure that rapid testing devices are in place in as many homes as possible to enable more immediate family visiting and contact to take place not just during the Christmas period but beyond. The essence of Christmas is belonging and togetherness and more than anything else this is the prize of this season for the care home sector, residents and families alike.

Having said all that in the rush to re-create a nostalgic sense of the familiar, to be together with family and friends we have to recognise that there are consequences of removing wider community and societal restrictions. The virus will not be taking an amnesty simply because of our desire to be together; it will not, despite ecclesiastical aspiration be any less deadly and fatal in the season of Christmas and the New Year. So, any actions we take have to be against the knowledge that there are very real risks which for some will mean that January could be a month of death and desolation. We have to as a society ask ourselves what is the price of Christmas togetherness that we are prepared to pay? How do we best enable connection and belonging,  meet the emotional and psychological needs of the many and at the same time protect those who are most at risk of an increase in the virus?

The debate and discussion about Christmas is really hard. We know that the essence of Christmas is about kindness and family, about togetherness and belonging, and that for countless thousands these last few months have been aching moments of separation and absence, with a really devastating impact on mental health and wellbeing. I know that for many being together around a table this Christmas might just be a lifesaver. But I also recognise and share the fears of those who are anxious that what we do in the Christmas season needs to include prioritisation of the vulnerable and those most at risk. No one wants to reap a harvest of tears and regret in January with escalating deaths and broken-hearted families. The decisions taken by our politicians and the actions we undertake ourselves in the coming weeks will be critical.

To yearn, to desire to be together, to be alongside those who are our kith and kin, to be with those we love and are loved by, is natural and healing, but the pain is that that togetherness may this year be at a cost. How do we get the balance right?

Yearning

I am yearning for the day

when my heart does not sink

into emptiness

at the absence of you.

 

I am yearning for the day

when I do not see a stranger

walking along

and hear the echo of your steps.

 

I am yearning for the day

when the eyes of another

shadow in the light

and hint at the sparkle of you.

 

I am yearning for the day

when laughter in a room

awakens the pang

and I feel the ache of you.

 

I am yearning for the day

when I can breathe beside

when I can look inside

when I can touch

when I can feel

you

here

near

warm

tender.