I was walking along thinking about what I would say in this blog, aware of the fact that it is National Intergenerational Week from the 8^th-14^th March, when my 6-year-old companion opined – apropos of nothing – “Ladybirds are different from caterpillars. They don’t look like, but they are the same; they are family; I like them both.” Now I suspect that this observation has arisen from an over-abundance of David Attenborough and Adam Kay’s Anatomy –(which if you have not read you should! ) – but it is so apposite.

Intergenerational Week is this year an online campaign backed by many organisations and is all about celebrating the times when people of all ages come together, make friends and work, learn, relax and change one another. In the year that has passed we have so missed those moments of connection and togetherness as lockdowns have separated old from young, generation from generation, and the absence has ached and hurt. Perhaps those who have missed the connection between different ages the most have been residents in care homes and even though in Scotland indoor visits are now starting again we all long for the day when children can see grandparents and great-grandparents.

The organisers of Intergenerational Week also point to a pre-pandemic reality which I know for countless folks rings true and that is that for many of us being connected across the generations has changed over the years. We are a long way off from the times when most families lived together across the generations, or at least in close proximity. Many of us live our lives a distance of time and travel away from our older generation not least because so many are having family later in life. Busyness, older parenthood, changing leisure patterns as well as mobility have all affected family generational connections.

Last week I wrote about the impact of loneliness and isolation during lockdown on the mental health of all people, but perhaps especially the old and the young. The pandemic has taught us a painful lesson about the risks of loneliness and isolation, and the importance of connections which previously we might have taken for granted. The pandemic has also in a positive sense shown us the ability of human individuals to reach out, to cross divides, to make the effort to get to know, to be concerned for, and to connect with those who are different from us regardless of age or circumstance.

Moving forward we need to work hard at not just restoring the inter-generational connections and opportunities we used to have before the pandemic, but we also need to put effort into making sure that we can create new opportunities for the age divide to be removed and shattered.

We need to, I believe, do much more at creating spaces and places where the generations can work and relax, live and simply be together. There is a real risk that we create divides in the name of infection prevention that limits our capacity to be close to others and to form new and meaningful relationships across the generations. One of the worst legacies of our pandemic response – though I know a health necessity- has been the idea of social distance. To be social you can never be distant, you have always to be close and proximate, alongside to touch and be changed by interaction.

But the pandemic has also shown us the risks of creating false divides across the generations. There have at times not least in media and popular dialogue, been the risk of creeping age discrimination. The prioritisation of the welfare of the young should never be seen as an opposite to caring for and the focus upon those who are older. Community cannot be created by binary choices or by accentuating the value of one group against another. Community is always nurtured when all peoples regardless of status or role, culture or origin, and critically regardless of age are included, valued and heard.

We can do many more things to work at promoting and advancing inter-generational activity and opportunity. We can resist the temptation to create older age into ghettos- in villages separate from the living of youth; we can create care facilities for those who require support in the heart of our communities and cities. We can resource better models such as student and older age co-operative living, which enable the generations to live, move and have their being in connection one with the other.

A couple of weeks ago I was in a meeting where representatives of Young Scot shared their issues in relation to technology, including the challenges of digital poverty and exclusion. On hearing these issues I was aware of just how similar the challenges they spoke of are for those of an older generation. In an era of increased dependence and reliance upon technology and digital, the risks of technological exclusion and digital poverty don’t discriminate on the basis of age alone. However the benefits of inclusion equally cross the age divide. The potential of those who are  young who possess the skills, confidence and familiarity with technology to share these with those who are older in order to enable technological and relational connection across the generations are immense.

The potential of inter-generational connection is immense; it is so often untapped and rarely prioritised, but in essence it is what creates truly inclusive communities, with or without technology.

The motto for the week ahead is Say No to the Age Gap – it is one grounded in the age-old insight that we are all of us so inter-connected that a focus that does not prioritise and attend to the needs of all, fails all. We need to learn to recognise beauty, flight and freedom in the caterpillar as much as we do in the ladybird. Age is but the outer skin of reality which hides the real person.

I love the insight of the continuous flow and connection between all ages and generations French poet Antoine de Saint-Exupery depicts in his poem Generation to Generation. His words also carry with them an injunction and encouragement to us all that it is our task and responsibility to be the both the teachers of tradition and those who learn from all ages:

In a house which becomes a home,
one hands down and another takes up
the heritage of mind and heart,
laughter and tears, musings and deeds.

Love, like a carefully loaded ship,
crosses the gulf between the generations.
Therefore, we do not neglect the ceremonies
of our passage: when we wed, when we die,
and when we are blessed with a child;
When we depart and when we return;
When we plant and when we harvest.

Let us bring up our children. It is not
the place of some official to hand to them
their heritage.
If others impart to our children our knowledge
and ideals, they will lose all of us that is
wordless and full of wonder.
Let us build memories in our children,
lest they drag out joyless lives,
lest they allow treasures to be lost because
they have not been given the keys.
We live, not by things, but by the meanings
of things. It is needful to transmit the passwords
from generation to generation.

Donald Macaskill

One of the saddest consequences of the Covid pandemic has been its impact, not least through lockdowns, on the mental health of tens of thousands of individuals. There is thankfully a wide and extensive acceptance of these impacts and a shared resolve across politics and society to do something about it.

I am also pleased that there is a growing recognition of the mental health impacts of the pandemic upon older people. This last week has seen an excellent article in the British Medical Journal on this very subject. But in a general sense, both societally and politically, the mental health distress and damage on older people has unfortunately been a lot less written and spoken about and yet it is, I would suggest, of equal criticality as the mental health impacts upon children, young people and those of middle age.

I was reflecting on these realities in preparing for a contribution this coming week at a roundtable organised by Voluntary Health Scotland and the Open University. The session is entitled Falling Off a Cliff at 65: serious mental health issues in later life. It is painfully clear in their work that the mental health of older people have been significantly impacted by the pandemic and lockdowns.

Undoubtedly, there has been in the last decade a growing awareness of the significance of dementia and delirium in the mental health of older Scots. The problem is, as those of us who work in older people’s care and support, know only too well, mental health and distress in older age goes way beyond these two conditions.

I wrote a blog on this subject some four years ago and sadly not a lot has changed. There has always been a risk that the focus on dementia has taken our eye off other mental health and life enduring challenges faced by older Scots. The absence of a distinct focus on older people’s mental health issues in the 2017 national strategy was particularly disappointing.

I remember speaking to someone who had lived with chronic depression most of their adult life and had received good supports until they got to 65 years of age. Then almost overnight, he told me, it felt like the system was abandoning him and the supports he had been used to changed and disappeared.

“It was like standing at a window and seeing everything and everyone who had helped you live your life, especially in the down times, walk down the street and wave goodbye. I felt really alone.”

That sense of abandonment is evident in the research undertaken by the VHS and the Open University and sadly it is the experience of too many once they have reached the age of 65 that it is like ‘falling off a cliff’ in terms of service provision. By March 2020 both organisations had gathered a level of evidence, but then paused their work due to Covid-19. You can read their initial report here. I am pleased it is starting again not least because the problems remain and have undoubtedly been exacerbated by the pandemic.

When I speak to frontline staff in the community and from what people tell me the pandemic has resulted in a worrying deterioration in the mental health of older Scots. Whilst there has been an understandable and appropriate focus upon the impact of lockdown on people in care homes, there has been less focus on the impact upon older people in the community.

People who might before have developed routines which enabled them to be connected to others and therefore to maintain their mental health have had those connections limited or severed. There has been an exponential growth in loneliness and isolation; self-help groups and therapies have stopped or become limited; and the reality of digital poverty for older people has meant on-line and virtual equivalents have not been an option for many.

Speaking to community nursing staff I hear stories of significant dehydration as people have neglected their nutrition and wellbeing, of increased confusion, loss of memory and motivation, increased frailty and depression. There is a growth in the number of people falling and losing weight. I have heard too many stories of older people separated from family contact, disconnected and downcast, alone and empty, isolated and too often ignored.

The mental health impact of Covid on older age is profound and shaming. This was already a population more likely to experience health inequalities, more likely to be socially isolated for longer periods of time and to suffer more profound impacts from the requirements to shield and protect.  All that we developed as tools for connection and protection have been used less by those of older age. This is a population much less likely- partly through frailty but also through fear, to exercise and self-motivate, to fight the black dog of the night through the light of activity and exercise. Depression has clearly increased to worrying levels and reports of self-harm at anecdotal level are deeply worrying.

Before Covid we needed to get much better at supporting people who have life enduring mental health challenges to transition from adult to older people services. This includes properly resourcing the older people care sector to train and equip staff to both recognise and to deal with mental health issues and challenges beyond dementia and delirium, and also to give greater priority to enable the development of new models of support which can cater for individual and particular mental health needs in older age. With age comes so many losses over which the individual has little control but around which it behoves society to provide support.

But much more than that we have to as a whole society take older people’s mental health seriously. We have to accept the crippling reality of hurt that is the daily grind of too many and has been for decades. Mental ill health is sadly not solely the experience of youth.

We need to get better at finding those who need to be found, naming the hurt and answering the plea. We need to remember deep inside that agony has no date by which it is spent, distress no destination at which it departs, depression no age by which it is managed. For too long we have swallowed the myth that age conquers the mind and its ravages, that with experience comes coping and with chronology challenges diminish. Mental illness has no use by date, it does not lessen as bone and muscle decline, it merely changes its whisper to shout louder in another tongue. What age seems to do is to increase absence and heartache for too many at just the time that some in society seem to consider that the expense and effort of support is best offered to others. Scotland has the opportunity to put the mental health of all our citizens first and foremost in our recovery from Covid, and a focus on older people’s mental health issues has to be central to that effort.

The model and actor Cara Delevingne beautifully captures the necessity that is the challenge to all of us – to be open to find, regardless of age, those who need accompaniment to journey through the landscape of the mind.

 Who am I? Who am I trying to be?

Not myself, anyone but myself.

Living in a fantasy to bury the reality,

Making myself the mystery,

A strong facade disguising the misery.

Empty, but beyond the point of emptiness,

Full to brim with fake confidence,

A guard that will never be broken,

Because I broke a long time ago.

I’m hurting but don’t tell anyone.

No one needs to know.

Don’t show or you’ve failed.

Always okay, always fine, always on show.

The show must go on.

It will never stop.

The show must not go on,

But I know it will.

I give up. I give up giving up.

I am lost.

I don’t need to be saved,

I need to be found.

Depression by Cara Delevingne

 

Donald Macaskill

I have always been fascinated by language and the way we communicate. Perhaps part of the reason for this is that in the early stages of my life it was an issue that dominated a lot of my waking hours. I was an identical twin born to two parents who spoke Scottish Gaelic most of the time. Like many twins – indeed over half – we developed our own ‘twin speak’ (cryptophasia). Twin language is a way twins use to communicate with one another and is a language others cannot understand. It is typically full of onomatopoeic sounds and new words adapted from adult language which makes it sound as if it is understandable but to the non-twins it is usually not. Combine that with a good dose of Skye Gaelic and when I went to primary school it didn’t take long before frequent sessions with the Speech and Language therapist became part of my weekly syllabus! It meant in practice that when we went to primary school we had to un-learn and unpack the communication constructs of our early years and learn to speak a language and a system of communication alien and foreign to us.

It was there at speech therapy – or at least in the estimation of the therapist – where I was taught to ‘speak properly’ and of course to speak English the self-declared language of the educated and professional.

That last observation is only a bit tongue in cheek. Gaelic has long been marginalised as a language unsuitable for intellect and knowledge. My late great-aunt was a strict Skye headmistress who had to discipline school children for speaking Gaelic whether in classroom or playground yet in her own home she hardly spoke English. She showed me the directives that instructed her to suppress Gaelic.  Indeed my own parents belonged to a generation where they had been ‘told’ even if they did not intuitively believe that Gaelic would keep their children back!

I’m reflecting on the issue of language and mother-tongue because tomorrow, the 21^st February is the United Nations’ International Mother Language Day designed to “promote the preservation and protection of all languages used by peoples of the world”.  It is a day where we are encouraged to celebrate the diversity of language in recognition of the role they play in cultural and societal diversity.

Language is critical – it can be a gateway to a world of discovery or a door slamming in one’s face, limiting progress and access, shutting off opportunity and possibility. I know that because Gaelic was taught out of me, given no value or credence, and as a result my own ability to express myself, to be confident in using English my non mother-tongue, held me back for a period of time. It undoubtedly created in me a dislocation where I wanted to use the tones and rhythms, the timbre and sound of Gaelic but was dragooned into the disciplines of what I felt then was an inexpressive English tongue.

My own early experience has meant that I am probably more sensitive to the importance of not making assumptions about those whose language is not my own and am utterly convinced that the suppression of any language causes cultural and individual damage and trauma. And yet we live, perhaps especially in the United Kingdom, in times where monoglot imperialism assumes that English should always be the dominant form of international exchange.

Language helps to knit our identity, it weaves us into the fabric of community and culture, it nourishes the poetry within our bones and feeds the dreams within our blood. Language is the bridge which crosses divides and can be the pull of lover, the painter of song, the harbour for unsettled times.

Due to globalisation the uniqueness, the colour, the vibrancy of language is increasingly under threat as the world rushes towards the grey homogeneity of the latest lingua franca.

Every two weeks a language disappears and according to the United Nations at least 43% of the estimated 6000 languages spoken in the world are endangered. ‘Only a few hundred languages have genuinely been given a place in education systems and the public domain, and less than a hundred are used in the digital world.’

I have always had a love affair with Gaelic, yearning for a lost fluency and familiarity, but she has been a mother tongue to whom I have been a less than dutiful child. It is a loss which I have increasingly regretted. not least because the critical importance of bilingualism came home to me a few years ago as I witnessed my own mother live her last years with dementia.

Her later years were a time where as the disease progressed she turned into the world of her earlier memories, developing sharp recall and detailed description for days long since lost in time. It was also a time when she increasingly reverted to her mother tongue, the language she knew from childhood, the tones and timbre of which were the companion of childhood and culture, the oxygen of love and belonging.

We now know from numerous research studies that being bilingual is one of the forms of cognitive stimulation that requires a very different and diverse range of activity within the human brain. On top of this we have solid and extensive research to show that the onset of dementia symptoms in individuals who are bilingual can be delayed by between four to five years compared with monolingual individuals.

Just as with my own mother I have heard stories from care home staff who have described how individuals with dementia who had reached a stage of little or no communication, came alive if there was a carer who was able to speak to them or sing to them in their own language. Just as with my own mother I have seen the spark of light in tired eyes as they have remembered moments and memories re-captured through the memory of song in their own native tongue.

We desperately need to value the ability to use mother tongues more than we do. So it is that a carer with a bilingual or multilingual skill is, I believe, a greater asset than one who is not. We have an impoverished view of language which limits not just our ability to meet the individual needs of people but diminishes the whole fabric of our commonwealth. Our language is not just the way we communicate, it is an intrinsic part of our identity, of who we are as a person. It is both an enabler of our belonging to community and a sign of that belonging.

So personally I will commit to do better to re-capture my lost tongue, even if my partner- in conversation is no longer around, but I will also continue to stress that for us as a society to truly care for another, professionally and personally, we need to tune ourselves into strange and different  tongues, we need to learn to love the language, we need to nourish all those sounds of colourful words unknown to us.

The poet W.S.Merwin in a haunting poem captures just what it is we lose when we lose a language.

LOSING A LANGUAGE

A breath leaves the sentences and does not come back

yet the old still remember something that they could say

 

but they know now that such things are no longer believed

and the young have fewer words

 

many of the things the words were about

no longer exist

 

the noun for standing in mist by a haunted tree

the verb for I

 

the children will not repeat

the phrases their parents speak

 

somebody has persuaded them

that it is better to say everything differently

 

so that they can be admired somewhere

farther and farther away

 

where nothing that is here is known

we have little to say to each other

 

we are wrong and dark

in the eyes of the new owners

 

the radio is incomprehensible

the day is glass

 

when there is a voice at the door it is foreign

everywhere instead of a name there is a lie

 

nobody has seen it happening

nobody remembers

 

this is what the words were made

to prophesy

 

here are the extinct feathers

here is the rain we saw

 

W.S. Merwin, from The Rain in the Trees, 1988, published by Alfred A. Knopf.

 

 

Donald Macaskill

Tomorrow is St Valentine’s Day and this year it will be markedly different for all of us. Doubtless Hallmark et al will still be much used though I suspect it will be as a result of mainly online card orders; there will be expensive Take Away Valentine dinners and no doubt the florists will still make needed revenue from exorbitant costly red roses. But for many Valentine’s Day will simply not be the same. For thousands it will be a day of emptiness and sadness, regret and remembrance.

This time last year the Guardian newspaper carried a story entitled ‘Love in the time of coronavirus. ’ It described the attempts of the crew of the Diamond Princess cruise ship to make Valentine’s Day as normal as they could for the thousands of passengers who were quarantined on the vessel as it sat off the Japanese coast. You might remember the story of how one by one crew and passengers were struck down by this new virus which had swept China and was beginning to affect many countries across the globe. By Friday 14^th last year 218 passengers and crew had shown positive results among just over 700 who had been tested. As the journalist commented: ‘The ship’s once carefree community, who until two weeks ago were making calls at ports across the far east, is now host to the biggest single cluster of coronavirus cases outside China – and by some margin.’

A year on and such instances seem almost unexceptional if not sadly routine as 2.7 million people have succumbed to this deadly virus with millions more having been infected.

This last year has witnessed such a degree of loss that it can almost be hard to contemplate. Indeed I came across a story this week which seemed to encapsulate the way in which our normal has become abnormal; but also the way in which folks are trying to hold onto something familiar and trusted when all the usual markers of life seem to be swept away.

Deborah De La Flor has been a florist in America’s Florida coast for over 40 years. She has never experienced a February like this one. “At a time when someone is sending you an ‘I love you’ card, someone is sending an ‘I loved you’ card,” said De La Flor,

As America’s Covid death toll sits near 460,000, florists are in equal measure creating wreaths and bouquets in a strange synchronicity of love lost and love held.

At about the same time last year I was meeting with colleagues in my role as chair of the working group creating Scotland’s National Bereavement Charter. Few of us could have expected that the very way we grieve and deal with loss as a society in Scotland would be changed out of all reckoning in the months ahead. Traditional means of remembering and celebrating the lives of loved ones have been altered beyond familiarity; we have lost ritual and the rhythm of farewells, and despite strenuous efforts a sense of the functional and mechanical has crept into moments of departing. I fear we are in danger of losing the comforting power and the necessity of mourning. This past week I attended a funeral and the restriction on numbers, the inability to be with people afterwards, to share memory and laughter, to hug and console, makes the whole experience of funerals during lockdown so hard for people.

Today in this weekly blog I want to reflect on two issues, the first is that of care home visiting, the second the wider implications of loss during the pandemic.

At the start of the pandemic care homes closed their doors in order to save lives and protect residents. Many managed through great professionalism and dedication to do just that. But the virus which we even then called the ‘novel’ coronavirus was so new and different that despite all efforts it got in and destroyed with horrendous harm. Throughout all the early weeks and months as numbers increased and we experienced the full impact of the first wave the doors of care homes remained closed to family and loved ones except sadly at end of life. Then over the months small steps were taken to open up, first outdoors and then indoor visiting, the latter only really starting with testing machines sent to care homes in mid-December. Some homes were confident in going further than the guidance, others were more reticent and concerned. Caution and protection were the bywords, but it became increasingly clear to many that so much avoidable harm was being done by the desire to protect at all costs as deterioration and decline, loss of motivation and connection became so evident.

Throughout these months many families and relatives have experienced anguish and heartache being separated from their loved ones. Others have been too frightened to even contemplate going into the care home. They have lost moments of togetherness that will never be re-captured. Care home staff and managers have struggled with the stress and strain of trying to do the right thing for all amidst growing pressures of demand.

All those involved in the tragedy of coronavirus in care homes share one desire – a safe restoration of life and contact as it used to be as soon as possible. Before the virus I could count on one hand instances of dispute and disagreement over family contact. Today the key relationship between family and care home staff is much more fragile than anyone would ever want. I have never met anyone who deliberately and consciously for no reason wants to keep people apart in our care homes; rather the best care homes have always recognised the role of family as not a ‘visitor’ but as a part of their community.

So as has been reported in the media many have been working hard to try to change all this despite the fact that we are in the midst of a second wave and living with a strain which is much less easy to control, manage and supress. Doing nothing has and is not an option. Moving forward ending contact should only be in exceptional circumstances never the norm. People must be safely brought together so that we end what has been a nightmare for so many. How we do that is what is so critical at this time given that we cannot simply go back to the way we were.

As has been reported in the media and noted by the First Minister, and in all likelihood next week, new guidelines for the restoration of meaningful contact will be published. They have been developed in wide consultation and partnership with family representatives, care home providers and Government clinicians and advisors. They are about working together to restore. What is important about them is that they are a steppingstone to something closer to normality. They are incremental in their nature but their outcome is clear and definite – the restoration of meaningful contact.

But in order for them to mean anything I am convinced that we need to make this journey together, supporting one another, assuring when there is anxiety, reducing fear, motivating through example and reducing the risk of creating rejection. In my experience the process of helping an individual whether staff or family member overcome fear will be one which requires us all to listen to the views of others, work through our shared intent, and together move forward. It is a time for individual conversation to address the needs of each person recognising that a care home is a community of multiple voices, it is not a time for blanket decisions and policies that forget the needs of each unique individual.

So as I sit here on the day before Valentine’s Day I think and know that this is our singular most important gift of love this year – to restore meaningful contact between families and residents in our care homes. I know I and many others will commit all energies over the coming days and weeks to enable that to happen. In so doing we will address fear, reduce anxiety and manage emotion. In so doing we will hopefully listen more and talk less.

I reflected above about how this has been a year of crippling loss and that is not only for the thousands who have died of coronavirus, but the thousands left without loved ones who have died from other conditions. It has been a harrowing and hard year with so many of us unable to grieve and say farewell in the way we have been used to or the way that has comforted us in the past.

I have written before about the need for a national day of mourning and I accept that we still have a way to go before such a formal national moment to remember can take place. But in all my work around bereavement and grief I increasingly feel that we need to come together – virtually and physically – to show one another the solidarity of our loving, remembering what has happened and is still happening. Maybe this becomes especially acute at this time of year not just because there are thousands who will be spending their first Valentine’s Day without the touch of the person they loved, but because we are coming close to the first-year anniversary of this pandemic.

Marie Curie have recently launched a #DayofReflection for the 23^rd March 2021. They want it to become an annual day which will give us all ‘time to pause and think about this unprecedented loss we’re facing, and support each other through grief in the years to come.’ On the Day they want to hold a national minute of reflection at 12pm as well as other events and supports. You can find information at https://www.mariecurie.org.uk/get-involved/day-of-reflection.

Such markers and events will not be for everyone but I think collectively we do need to do something as we try to deal with the pain and hurt of the last year.

There are too many who will never be able to re-capture the lost contact and touch which this virus has prevented them from experiencing; there are too many who have died alone with only the love of stranger to console and hold them. We cannot re-write that story but what we can do is to support one another, make the change that needs to be made and be determined to be there to comfort and hold up hurt.

In Finnish there is a concept called “sielunmaisema” – which literally means “soul-landscape” or “soul-scene”; it denotes a particular place that a person carries deep in the heart and returns to often in their memory. I think we all need to create such a space or place, external or internal, where we can cradle the moments of memory of those we have loved and lost, of those we are separated from. We need such a place as a society for I fear we will rush beyond remembrance to recovery without thought for the pain hurting at the centre of our community. But we also need to nurture that space for our own mourning and grief, and that for many might not be for a person, but for a dream, a role, a relationship, which the passage of time and the cruel reality of the last year has taken from us.

Valentine’s Day 2021 will be different, for most of us, it will be virtual, but I hope it will also be a time when if we need to we can take space to mourn, if we want to we can commit to action, and that we may all discover our own sielunmaisema. I end with words of a favourite Finnish poet Helvi Hämäläinen

For one day I’ve the right to mourn,
for one day I’ll shut the windows of the sky,
I’ll dismiss the blue,
I’ll raise a black sun to mark my mourning.
For one day I’ll wilt the flowers,
for one day I’ll silence the birds.

I’ve the right to mourn one day, I’ve the right to mourn.

Donald Macaskill

I used to live in West Lothian and over the years walked across much of the countryside. Occasionally I would come across a marker stone commemorating events which had taken place in isolated and yet hidden parts of the landscape. Similar markers exist across much of central and lowland Scotland. These are memorials to a turbulent period of Scottish history, the time of the Covenanters.

In the numerous religious disputes of the 17^th century thousands of Scots signed what was known as the National Covenant, in which they pledged to resist changes imposed by King Charles on the Scottish Kirk, and these disputes eventually led to violence and rebellion. After the 1660 Restoration of the monarchy, the Covenanters lost control and dominance, becoming a persecuted minority. During what was known as ‘The Killing Time’ hundreds died in a period from 1679 to 1688. Under severe persecution thousands gathered to worship in their own way out of sight, hidden in conventicles in the Scottish countryside. Attendance was very risky and a serious offence, and preaching at these locations was punishable by death. The memorials bear witness to their determination to resist and to re-shape a new way of being faithful.

All this came to my mind this past week when I read the Feeley Review or to give it its proper title the Independent Review of Adult Social Care in Scotland. The Review was published on Wednesday and has been broadly welcomed. I have read it a few times now and whilst a lot of commentary has been made on its central and core recommendation of creating a National Care Service there are some parts which, I would contend, are equally significant, but which have received less observation. One such is the idea of a social ‘covenant.’

The Report says:

‘One key factor in the realisation of [the aims of the report]… is the need for mutual commitment by citizens, representative bodies, providers, civic Scotland, and national government to set aside self-interest and each work together for the common good. Trust is not currently in plentiful supply in social care support and so we believe that there is a need for an explicit social covenant to which all parties would sign up. This will be particularly important if we want to achieve our aspiration for everyone in Scotland to get the social care support they need to live their lives as they choose and to be active citizens.

In their 2014 report, the World Economic Forum describes a social covenant as a vehicle for giving effect to a common set of values and beliefs:

• The dignity of the human person, whatever their race, gender, background or beliefs;
• The importance of a common good that transcends individual interests; and
• The need for stewardship – a concern not just for ourselves but for posterity.

Together, these offer a powerful, unifying ideal: valued individuals, committed to one another, and respectful of future generations. Fostering these values, which we believe would serve Scotland well as guiding principles for improving social care support, is both a personal and a collective challenge. We must do more than just talk about them; we must bring them into public life and use them to guide decision-making.’

I think the above summarises both the vision and aspiration, the integrity and ethos of this hugely significant landmark report. I personally consider that the time is absolutely right for all of us to rally round the idea of a new national covenant – one of and for social care.

The concept of covenant is an ancient and rich one. Perhaps its oldest use is in religious communities, not least the Judaeo-Christian tradition and scriptures. There it is used as a description of the agreement between God and the ancient Israelites, in which God promised to protect them if they kept his law and were faithful. The everlasting visual sign of this Promise was in the form of a rainbow.

But covenant also carries overtones of law and finance. The word is used today to describe an agreement or promise to provide or do something, or the reverse. It is a legal and defined agreement. In finance and banking it is used as a formal agreement to pay a fixed amount of money regularly especially to a charity.

But in essence both the ancient and modern use of the word carries a depth which goes way beyond the concept of a contract or a formal agreement which can often be based on self-interest. It carries with it a sense of relationship and promise, fulfilment and commitment, solidarity and intent. It is this element I want to focus on in what follows. Much has been written about social covenants and the way they are evident in many societies, but Jonathan Sacks summarises the essence well when he writes:

Social contract creates a state; social covenant creates a society.

The vision painted of a new social covenant in the Feeley Review is one that many of us have been waiting to see articulated for a long time. It is one which puts the autonomy and priority of those who use care and support front and centre. It is one which seeks to embed structures and models, processes and frameworks within a robust human rights perspective. It is one where the direction, the focus, the energy is centred on the citizen. It is one where care and support are not seen as a self-perpetuating means to their own end, but the tool, vehicle and energy by which individuals are able to be part of their own communities and play their full role as citizens.

There will be time elsewhere to go into the detail – because after all that is usually where we find the devil – but for now I think there is an urgency to gather round and to commit collectively to the need not only to reform and change a system which lies in many parts corrupt and broken, but to take the vision, share it, build upon it and implement it.

It has been said that a people without a vision perish. Perhaps we have not literally perished over the past decades in social care, but we have at best stood still, unable to move from principle into practice, from vision into reality. We have allowed aspiration to die and wither away, frozen by the fear of risk and change. The time for day dreaming is well and truly over. The pain of the pandemic has left us with the necessity to heal and bind up, to reform and re-design, there is an urgency to come together and to seek collective agreement and commitment. The three essential characteristics of such a new invigorated social covenant noted above are a good starting point for such a movement.

• The dignity of the human person, whatever their race, gender, background or beliefs.

The Feeley Review calls for a new social covenant where the dignity of the person becomes the cornerstone of all construction. Everything we do, say and implement needs to have the inherent inalienable dignity of a human being at its heart. Within those words is the necessity to change our systems of assessment and allocation, so that we truly listen to the needs and aspirations of those who need support in order to fulfil their lives. It necessitates an end to the iniquity of charging, the lottery of diagnosis, and the formation of equality of resourcing and priority. Dignity is about getting down on our knees to be in the chaos and hurt, the pain and distress that so many find themselves. It means the system and professional, taking off the clothes of authority and power, and re-learning the insights of empathic and affective listening and hearing. It means that we recognise the glorious diversity of individual human beings and not seek to squeeze the individuality of identity, whether race, culture, sexuality or age, into the strait-jacket of pre-planned and determined models and options. Each life grows gloriously unique, a social covenant of social care commits to feeding that growth.

Dignity presupposes a relationship. Dignity is beyond transaction and task rather it sits in the place of mutual learning and respect, it is led by the voice of the person not the sounds of the observer. Dignity is rarely seen in the duality of black and white decisions or statements but settles in the greyness and colourful vibrancy of contradiction and dialogue, of conversation and discovery. A social care system that is truly person-led needs to have flexibility, responsiveness, prevention and dynamic as core principles.

• The importance of a common good that transcends individual interests

Social care at its best is always about connection, not just the maintenance of networks and neighbourhood, but the fostering and creation of new community and new purpose. There is an inescapable public and outward dimension of social care which takes it away from the closed privacy of self-interest. So the Feeley Review is absolutely right, I believe, in asserting the case for fiscal responsibility and transparency in the expenditure of public monies. In a co-operative society true entrepreneurship and economic wellbeing is best served when individual ambition walks alongside collective and societal benefit. The covenants of old were never individual contracts defined solely to benefit self-interest, they were always about a sense of enabling individuals to flourish within a community for the betterment of all. Good effective social care and support does not foster crude individualism but enables the person to achieve their potential in and through being in relationship and community with others. If one voice is not heard then the music is silent; if one person is not present then the community is absent; if one life is not flourishing, then the tree is dying.

• The need for stewardship – a concern not just for ourselves but for posterity.

Stewardship is a concept with a not dissimilar ethical overtone to that of covenant. There is a spiritual and moral imperative to do well by what we have and receive, whether that is through the stewarding of the environment in which we live, or the stewarding of the shared resource we possess to create a better community. The Feeley Review creates a vision not only of a new system and model, but it posits the argument that when we use fiscal and human resources we have to have an intentionality of regard for others in such use. So it is that workforce training and development is so central. So it is that valuing the individual worker and manager by means of fair terms and conditions, by esteem and appropriate status is just as key to stewardship as a commitment to financial probity and transparency. Stewardship within a social covenant is a compulsion to create systems and structures not for the glorification of the moment, or for historical memory but for the inheritance of those who follow us. Short termism rarely creates that which lasts and on which those who follow us can build their own fulfilment.

Do please read the Report, catch a sense of some of its vision and aspiration. It is not all perfect – nothing ever is, but in its suggestion of creating a social covenant I think it is spot on. As people read and reflect, debate and discuss, not least in the next few weeks of political partisanship, I hope we can all find it in ourselves to gather round the need to hold to the vision that this report pulls us towards. I hope that we will have less rhetoric of defence and difference, less soapbox oratory, and more listening and hearing. That is why we need a social covenant for social care.

We cannot do nothing, so we must do something; we cannot sit still, so we must move, we cannot just be silent, so we must finally speak. The vision is there, the covenant is promised. In the glorious words of Miroslav Holub we have to open the door to our future…

The Door

Go and open the door.

Maybe outside there’s

a tree, or a wood,

a garden,

or a magic city.

 

Go and open the door.

Maybe a dog’s rummaging.

Maybe you’ll see a face,

or an eye,

or the picture

of a picture.

 

Go and open the door.

If there’s a fog

it will clear.

 

Go and open the door.

Even if there’s only

the darkness ticking,

even if there’s only

the hollow wind,

even if

nothing

is there,

go and open the door.

 

At least

there’ll be

a draught.

https://www.scottishpoetrylibrary.org.uk/poem/door/

Donald Macaskill

“I am story”.

In a very real and deep sense we are all of us wired into storytelling and story. It feels as if it is part of our DNA, wherever we are and whoever we are in the world we are surrounded by story.

Today marks the start of National Storytelling Week which before the pandemic had taken place in theatres, museums, schools, hospitals, and increasingly in care homes. In a virtual way the coming week will provide folks with a fantastic way to share their own story, or even invent something entirely new. National Storytelling Week is celebrated by all ages and celebrates the power of story to entertain and engage, to inform and include, to conjure mystery and to coracle sadness.

I have written before in these blogs about how I have always loved story and the tellers of tales which have inspired and encouraged me in my life. But at the start of a week where children will paint word pictures of adventure, where some will use words to express emotion and others will simply have fun, it is worth reflecting a bit on why story is important, perhaps especially in these pandemic times.

The best answer to that question, for me at least, comes in the work of Jonathan Gottschall, who in his book, “The Storytelling Animal: How stories make us human” suggests that human beings are natural storytellers—that they can’t help telling stories; that they turn things that aren’t really stories into stories because they like narratives so much. Everything—faith, science, love—needs a story for people to find it plausible. In the world of marketing and elevator pitches, of twitter and text – no story, no sale. Gotschall has said:

“We are, as a species, addicted to story. Even when the body goes to sleep, the mind stays up all night, telling itself stories.”

Stories provide a way of understanding our place in the world by giving structure to what is happening around us. That is the very nature of the big myths of humanity which from the dawning of time sought to explain the unexplainable and to give truth to chaos, safety to fear.

Stories root us in an on-going stream of history – they provide us with a sense of belonging and help establish our identities. Long before the written word there was the spoken word; the oral story constructs the text.

That is why every community, every people, every family has a heritage of stories which have become the truth for them and have helped to foster connection and meaning.

Gottschall argues that just as the brain detects patterns in the visual forms of nature – a face, a figure, a flower – and in sound, – so too it detects patterns in information. Stories are recognisable patterns, and in those patterns we find meaning.

Everyone then has a story.

Life is one long story … it takes us the whole of that life to tell it to its conclusion … Some spend their lives waiting to tell their story… waiting for someone to listen …

It’s not that folks don’t tell tales or share parts of their self but there is a deeper story which is more than just the amalgamation of a set of anecdotes.

It is the story which was told before fire discovered the cave wall, or pen discovered ink, or teenager discovered text … it is the story of who we are, the individual behind the identity we show the world.

This is the story that we want someone to listen to … to really attend to with their whole interest and self … because we may only tell it once, it might only be in fragments, it might only be through the whisper of a silence … but it is the story we NEED to tell.

So if for a moment we accept that story is fundamental to what it means to be human – as many psychologists suggest – what does all this mean for care and in particular what about story and its telling in Covid times?

The week that has passed has tragically seen the reckoning of two statistics – 100,000 people in the UK and 6,000 people in Scotland have died as a result of Covid having tested positive within the last 28 days before their death. Deeply heart-breaking and horrendous.

One of the most tragic aspects of the pandemic is that for thousands upon thousands of individuals their story has been cut short, the next chapter of a life has been left unwritten, they have not had the chance to say goodbye or to finish what they started in their loving and living. But what strikes me as just as sad is that because of the policies of exclusion we have adopted for now eleven months for too many in hospital and care home there has been no-one they have known present to hear their last words, no-one other than a loving stranger to hold their hands in the midst of fear. They have not been able to tell the story of their life and love, of their truth and tear, of their regret and delight.

When I heard these statistics this last week I could not help but think of the hundreds, the thousands, who have died in our care homes, locked away from hands of touch and love, from the presence of family and friend, for these never-ending months of time. I could not help but think of the pain and anguish of family I have spoken to and know and of the anxiety and fear of staff and frontline carers. And we have to remember that during these months we are numbering not just those who have died from Covid for we have had hundreds dying during lockdown. No one wanted or wants this nightmare to be and to continue.

My great inspiration the poet Maya Angelou once said:

“There is no greater agony than bearing an untold story inside you”.

Care is the incarnating of compassion and love so that it enables another person to flourish to their full humanity. Good care allows and frees an individual to tell their story, to be open and honest, vulnerable and authentic. Care is the listener and storyteller in equal measure. Covid has robbed countless thousands of the ability to tell their story, and of the presence of those who loved them to listen to its telling not just at the point of life’s ending but in the days and weeks before. We have been left with a harvest of hurt and harrowing regret which will take years, if ever, to overcome and which has and is traumatising so many today.

As we get vaccinations rolled out, and accurate testing, and PPE and proportionate infection control practices there simply must be a restoration of the presence of family into our care homes. I write that in full acknowledgment of the fear and anxiety, the terror and concern of those staff, managers and operators who have protected folks for so long that they are terrified of the virus infecting and destroying. In the days ahead as Government, providers, staff and families we all need to work together to ensure the restoration of safer visiting into care homes; we need to address the fear not ignore it; we need to remove the anxiety of staff and managers of liability, prosecution and culpability for any act whereby greater access may bring about harm. We need to recognise that life is about risk and relationship as much as it is about safety and protection. We need to work with those family members who are so anxious about visiting loved ones for fear of bringing hurt with them just as much as working with those who are desperate for the touch of love and to simply be with their relatives.

The pandemic has stolen the story of too many, it has corrupted the care we know which brings restoration and put up barriers which have blocked compassion. We have an opportunity to write a new story. We have the chance in coming days to do different and be better. We have within all our communities, by acting one with the other, not in criticism and condemnation, but in solidarity of shared concern, the capacity to write a conclusion worthy of our humanity to what has been a nightmare for too many. We have the power to write a new end.

When the story of this pandemic is finally written will there be space in its pages to tell of the lives of the thousands who are numbered and not named, will there be a space to allow us to grieve for lives unfinished and lost loves?   This pandemic is not just about statistics and science, political action and policy positions. The future should not just be about immunology and vaccines, it has to be about shaping our humanity to the stories of the last eleven months.

Will there be a chapter which shows that when we could we changed and worked hard together to allow people despite the fear of the virus to be together, to better balance protection and presence, to allow people to have folks to listen to the stories of their last months, days and weeks in care home and hospital?

Story is a moment marker and memory holder. We have the power not just in Storytelling Week but in all our hours, months and years to write a story which pulls us forward to a better humanity.We have the power to release the stories untold and to enable a listener to be present.  Let us therefore take up the pen and create it.

Donald Macaskill

The past week has been one of moment and history making. In a sense the Inauguration of any American President is something which tends to stick in the memory – although some of them maybe for the wrong reasons!

So it was that I sat down to watch Joe Biden being inaugurated after weeks of turmoil and anxiety, and amidst all the tradition and formality, I was moved and inspired by the powerful eloquence and rhythmic beauty of the words of the Youth Poet Laureate Amanda Garman. More of that later.

Joe Biden has been around American politics for some time and with age he has gathered a gentle wisdom and insight together with a steely ability to achieve consensus from disharmony. I first began to read a bit of what he had written when he won the election in November and I have been especially impressed by the honesty with which he has come through personal tragedy and the way he speaks about loss and grieving. He has also been someone who has long articulated how important human rights are to him and how they cannot be an add on but must be central to all decision-making, both at a local and international level. In that regard he has written:

‘human rights and fundamental freedoms are each — equally — the entitlement of all. It makes no difference where we live and no matter how we look, how we pray, or whom we love.’

On Thursday last week Scottish Care published a paper which I had written about human rights – it was a continuation of a conversation started a bit more than a year ago when I argued that we should see social care as an inherent part of the human right to health. In this new paper I attempt to do two things. The first was to describe what I believe are some of the key principles that must be present in a human right of social care. The second was to illustrate what that human right of care might look like in practice.

I want to reflect briefly on what that might mean fin these days of the pandemic.

I believe human rights are the foundation which enables us to create a social care sector fit for the future, worthy of the inheritance of hurt we have endured, and a legacy to the hopes, aspirations and dreams of those who work, run and live in our care homes and who work in homecare in our communities.

One of the reasons why human rights speak to me is that they enable us to get closer to articulating a ‘social dimension of social care.’ This is not a play with words but I believe it is important because I feel that in the last eleven months we have seen a creeping clinicalisation or medicalisation of the way in which we support and care for people both in the community and in care homes. That might be partly inevitable in a pandemic, but it must never be our future. We need a recovery of the social dimension of care, a dimension that sees support and care as enabling people to fulfil their potential as citizens, to belong to communities and to enhance their contribution. That is what is social about social care – it is connectedness, community and active participation. It is just as important to finance and resource helping people play a part in their community as it is to repair the fractures of their bones.

Social care is about enabling the fullness of life for every citizen who needs support whether on the grounds of age, disability, infirmity or health. Social care is holistic in that it seeks to support the whole person and in that they it is about attending to the individual’s wellbeing rather than simply their physiological health. It is about removing the barriers that limit and hold back and the fostering of conditions so that individuality can grow, and the independent individual can flourish.

That full citizenship does not happen by accident and for some people it has to be nourished and enabled by social care supports. That is why social care is more than just keeping the clock of life ticking over, it is about filling days with purpose, meaning and value.

Intrinsic to a human right of social care is the ability to enable individuals to be autonomous – this is not a crude individualism, but it is what allows a person to be psychologically, spiritually and physically their fullest self – it is what enables people to flourish into the fullness of who they are as human beings.

If that is true then there is also a truth in that we have stripped out autonomy too often in our response to the pandemic. There is still too little space and place for the voice of those who receive care and support to be heard. There are still too many instances when we do to and advocate for, rather than being attentive to hear the insights, needs and command of those citizens we support in social care and health – even in an emergency pandemic situation. Yes we are in a once in a lifetime emergency – but when do we start to enable people to grow into their individuality rather than restrict them to the conformity of our commands? When do we give control to the individual who receives care and support in care home and own home?

Good care and support are grounded in the realisation that regardless of any cognitive or physical impairments that every human individual has the right to exercise choice, control and autonomy to the best of their abilities and capacity. But that choice has to be rooted in a diversity of options to enable it. A one-size-fits-all model or approach, a take it or leave it offer, does not enable choice, individuality or personal control – it is the State-knows-best attitude which denies authentic autonomous citizenship and corrupts community.

In social care and health care it has become one of the core ethical standards that an individual must be involved in decisions about their own health and wellbeing; must have ultimate control and say in that decision-making and must have an ability to exercise informed choice. So it does indeed matter that I have choice over which care home I want to live in, which worker enters my house to deliver personal care, which service best meets my individual needs.

Choice in social care is not a consumerist added-extra but rather it is the heart of the enabling of the individual to be heard and valued through the way we work to support them. I’m not convinced at all that we have done all that we could have to protect individual choice and personal control during the pandemic.

Now of course, we do indeed use all the right language –  I have read libraries of books about person-centred care over the years – that sense that we put the person and individual at the centre of our compassion and care – all of which no one could disagree with. But a human rights basis of social care is about really empowering individuals and communities. It is about ensuring that the professional is there on tap not on top – ensuring that the primary direction is from the individual. That is always a challenge perhaps especially in environments like a care home where we are living one with the other not as a company of strangers but a community of friends.  What would it take for the system to give real power to the citizen? How can we change to adopting the principle and effect of person-led care and support which empowers an individual to take control and to be autonomous, to exercise real and meaningful choice rather than what happens to be available or what another decides is best for them?

There is a great deal of debate about the future of social care in Scotland and no doubt in the days and weeks to come that will become a loud, partisan and party-political debate. I hope it also becomes one where we all can play our part and have our voices heard. This is everyone’s business – how we develop a social care system fit for the future is far too important to be left to our politicians alone.

The future of social care is I believe, one that has to be grounded on key principles which advance the human right to social care. It might be challenging especially during a pandemic, but these are principles which value the social just as much as the clinical, they enable the autonomy and control of the individual, they offer real meaningful and informed choice, and they foster independence and personal fulfilment in community, care home and own home. I want a social care system in Scotland that is properly resourced, that values the workforce by trusting and rewarding them appropriately, that nourishes skills through education and learning, but which more than anything else is at all times led by the person who uses that care and support, not politicians or policy makers, not worker or provider, not processes or targets, not budgets and finance, but by people whose outcomes truly matter.

I mentioned the inspiring Amanda Gorman who’s poem at the Inauguration stole the show – ‘The Hill We Climb.’  As I listened to it I felt that it could well be a description for the future of social care as a human right in our own nation. This will not be easy, there will be the sweat of energy spent as change is achieved, there will especially in these days of pandemic fear and anxiety, be a sense of being overwhelmed but …

The way we care for those who require to be supported in their citizenship is the truest mark of our identity as a nation – it is nothing short of the fulfilment of society, the enablement of community, the ownership of citizenship – it is about connecting, communicating and celebrating in togetherness.

In the words of Amanda Gorman:

When day comes, we ask ourselves where can we find light in this never-ending shade?
We will rebuild, reconcile, and recover.
In every known nook of our nation, in every corner called our country,
our people, diverse and beautiful, will emerge, battered and beautiful.
When day comes, we step out of the shade, aflame and unafraid.
The new dawn blooms as we free it.
For there is always light,
if only we’re brave enough to see it.
If only we’re brave enough to be it.

(There are many places to see the full text https://www.townandcountrymag.com/society/politics/a35279603/amanda-gorman-inauguration-poem-the-hill-we-climb-transcript/ )

Donald Macaskill

 

 

 

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 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

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