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

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

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

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

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

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

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

Participation.

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

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

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

Accountability.

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

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

Non-discrimination and Equality

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

Empowerment

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

Legality

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

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

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

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

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

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

 

Donald Macaskill

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Donald Macaskill

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

 

#homecareday

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 Essential

 Up, doon, the length of our land –

Aberfeldy, Ardnamurchan –

There’s uplift, sharing; pass the baton!

A frontline forming, hand to fierce hand.

Shopfront workers, doon the aisle;

New-era queues metres apart.

The chemist’s prescription warms the heart.

Delivery folk vanish, ghost a smile.

Volunteers at the local food bank…

Shy half-moon in a clear Scots’ sky.

We leave with tins, groceries, goodbyes…

Clap in the gloaming when we say our Thanks.

And the sky greets with stars

And the bold birds sing

As we clink in our links in the Kindness line;

Holding absent hands for Auld Lang Syne.

 

 

Donald Macaskill

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

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

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

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

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

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

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

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

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

Yearning

I am yearning for the day

when my heart does not sink

into emptiness

at the absence of you.

 

I am yearning for the day

when I do not see a stranger

walking along

and hear the echo of your steps.

 

I am yearning for the day

when the eyes of another

shadow in the light

and hint at the sparkle of you.

 

I am yearning for the day

when laughter in a room

awakens the pang

and I feel the ache of you.

 

I am yearning for the day

when I can breathe beside

when I can look inside

when I can touch

when I can feel

you

here

near

warm

tender.

 

Last Saturday like many I suspect I watched scenes of celebration and happiness, and some of regret and disappointment flicker across my television screen with the announcement that Joe Biden was destined to become the next President of the United States. In the days that followed, despite the antics of the present incumbent, the President-elect has gone about his business quietly preparing for government and reconciliation, using words to bring healing and purpose.

In the last week I have discovered a lot more about this man who will doubtless play a significant role in all our lives even though most of us will never meet him. His loss of a wife and infant daughter in a car crash, the more recent death of an adult son to cancer, the agony of parenting through grief and sadness, all have given me an impression of a man who keeps going with quiet but strong determination, one who is intimate with heartache and the pain of loss. I may be wrong but there has to be something more than just the narcissisms of personal ambition to present yourself several times for election and to taste rejection and failure but to keep going. His prize, the office of presidential leadership, will be a hard one but one which I hope he will live up to, so that hope can indeed be incarnate in kindness.

The past week has also brought us the positive news that a vaccine is close to being signed off. Political, media and popular talk has changed from ‘if’ to ‘when’, phrases like ‘light at the end of the tunnel’,  a ‘new spring’ and ‘fresh dawn’ have become commonplace.

Despite my Hebridean Calvinist origins I am an optimist at heart, a glass half-full person, so I warm to the positivity of the moment. But I cannot help harbouring a concern that in rushing towards the light we lose sight of the need to continue to struggle and persevere, to remain resilient and cautious. I cannot help but agree with clinicians and commentators who urge us to remember that the path ahead is one which requires us to continue to abide by what we know works, namely the need to act in a way which suppresses the virus. Doubtless we will hear of more vaccines able to offer positive hope of a return to a new normality, but they are a horizon to pull us forward not a support on which we must lean upon today. Our actions in this moment, in the days and weeks ahead, are the only bulwark we have against the viciousness of this disease.

I know that is easier said than done. I have had several conversations with folks this week where I have been struck by their sense that our lives are in routines and ruts, predictable paths of behaviour and conduct, and that for some getting up every morning to do the same things, in the same space, with the same people and with little physical discourse with others, has become a real struggle. It might be the shortness of days and the flow of the seasons into coldness, but I detect a real weariness and tiredness. Many are desperately wanting something new and novel, something which disrupts our familiarity and the pattern of our hours, something unplanned and unexpected.

Yet deep within me I know the truth that we have to remain steadfast and despite all the difficulties, and doubtless the times of failure and disappointment ahead, the only way in which we can achieve a positive future is by our own hands and behaviour. This is the time for perseverance not for letting up, losing control, or falling away.

I was a teenager when on a wet afternoon Edwin Morgan sat in front of my class and read his poem ‘In the Snack Bar’. You should read it if you get the chance. https://www.scottishpoetrylibrary.org.uk/poem/snack-bar/

When I first heard Morgan read the poem it struck me that this was about a life determined to continue, to grasp the ordinariness of breathing and remain dignified despite dependency. It depicts the poet’s encounter with a disabled man who asks him for help in going to the toilet. Its honesty in describing the minute mechanics of a basic task from the perspective of someone who cannot see is searing. The poet has to change the rhythm of his movement to the pace of another. They have to go downstairs slowly, and then after the act is complete to climb again. Every detail is magnified with meaning, echoing towards a conclusion.

‘Inch by inch we drift towards the stairs.
A few yards of floor are like a landscape
to be negotiated, in the slow setting out
time has almost stopped. I concentrate
my life to his: …

And later the poet says:

‘He climbs, and steadily enough.
He climbs, we climb. He climbs
with many pauses but with that one
persisting patience of the undefeated
which is the nature of man when all is said.
And slowly we go up. And slowly we go up.’

The poem for me is the essence of perseverance, the ‘persisting patience of the undefeated.’

This is the perseverance through mundanity and routine, the determination to renew through pain and sadness which we so need at this time as we face Covid through the dark days of winter. It is a perseverance which determines to go on despite all.

But it is also a perseverance where we need the help and support of others. We need to have someone to take our arm, to lean on when we are uncertain and unsure. This is what ‘In It Together’ is all about – not a slogan or soundbite, but a way of being one into the other, one alongside each other.

So, there is a light dawning into the future, offering hope to drag us forward. It will come no doubt, but we must support one another in that journey from the present into the dawn of belonging.

I always remember being told by my old uncle as I confidently climbed yet another childhood ‘Everest’– typically just a Skye moor! – that it was harder to come down than it was to ascend. There is such truth in that as anyone involved in the hills will know – the tiredness and fatigue of descent is always harder than the thrill of ascent. You can lose your feet far more easily when you are on the way home than when you are aspiring for the summit. So it is that the next few weeks and months as we move towards a prize of being together once again, that the work and the walking, the journeying and the edging to that future will perhaps be much harder than arriving at the point of this day at which we can spy hope on the horizon. This is why we need perseverance.

It is the sort of perseverance captured by another poet, Mary Anne Radmacher  who once wrote that ‘Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying ‘I will try again tomorrow.‘

‘And slowly we go up.’

Donald Macaskill

Remembering is in the air. Today marks the end of the ‘To Absent Friends Week ‘ which is an astonishingly creative and vibrant festival. The festival is based on the premise that people who have died remain a part of our lives – their stories are our stories, yet many Scottish traditions relating to the expression of loss and remembrance have faded over time.  To Absent Friends gives people across Scotland an excuse to remember, to tell stories, to celebrate and to reminisce about people we love who have died. To Absent Friends, a People’s Festival of Storytelling and Remembrance is an opportunity to revive lost traditions and create new ones.

But today is also a day which falls in the midst of Remembrance Week as we approach the  11^th November when at 11 am we engage in a very long tradition of acts of national remembrance for all those who have lost their lives in war. Even that process though will be very different this year with many public acts now not taking place because of Coronavirus.

Remembrance Day will provide many with the opportunity across the world to stop and in silence think of all who have died or been scarred by humanity’s inhumanity. It is a time for recollection and story, albeit that those with first-hand experience of the wars of the 20^th century are becoming fewer in number by the year.

For me Remembrance Day is indeed a day of story and recollection. A day when I especially remember my own grandfather who left his Skye village as a boy at the start of the First World War and returned years later a man.  But although he returned with a box of medals for his bravery, he also brought back the scars of encounters and experiences that would fragment his living and mark his heart until he died. I was young when he died, but I always felt an air of distant melancholy surrounded him, a sense of absence for those gone from his life.

Remembrance is many things to many people. It is both an act of literally ‘re-membering’, of putting back together the stories of a broken past but it is also about a resolve and a conviction that the lessons of that painful past need to be so real and so vital that the journey into darkness can never be repeated.

Many years ago, in Orkney I spent an afternoon on the week before Remembrance Day in the company of two men who had just recently got to know one another. They were unlikely friends but one thing, their experience of war and their desire not to talk about it, joined them into a life-long friendship. One was in his sixties and bore the literal scars of years of brutality and torture as a Japanese Prisoner of War. Every movement jarred his present with the pain of those days. But he was a man of astonishing positivity and optimism. He never talked about the war or his experiences. The other man was much younger, a soldier during the Falklands War when he would have been really young. He too had been forever changed by his days of battle. His scars were inside him. He spoke about never being able to have a night’s sleep without the sounds of crying and fear waking him into a sweat. Anxious and manic in movement and gesture he was continually agitated. But he too was silent about his suffering. For both men Remembrance Day was something they simply could not thole – they wanted not to remember but to forget.

But that afternoon and well into the evening something happened. I don’t know what it was. Maybe the sense of calm, or the warmth of the place, or the drinks that were shared. But they started to talk. At first slowly and with hesitation and reluctance but then freely and openly, almost with a need to expel the memories from inside, a catharsis of inner pain. They spoke and told their story and what I saw in the telling was a healing of wounds, a discovery of togetherness and the creating of a bond that would never break. They spoke that day but that was it; emptied of memory they never spoke about their experiences again, but they were changed, one with the other, a connection which brought a peace only they could understand.

Finding another to tell our story to, to be authentic, open and honest, to be who we really are without mask and pretence, is perhaps something we are all searching for. Those two men found each other that day and by the power that comes from togetherness, they upheld one another in the days and nights to come until one of them died. The story healed … it bound them … and once told it was enough.

Story has a real almost primordial power within it. It is not simply in the act of re-telling or re-membering our story that we are changed but in the way in which story enables us to be honest and real, raw and truthful. In the next few days it might be harder for many to find a face to face encounter, it might be hard to find the normal routes to tell our story and find connection, but there are so many ways to re-member and tell and talk. For it has never been more important to find space and place to tell our story even if it is to ourselves for the first time, even if it is into the silence of the day or the emptiness of the night. For in the telling there is healing.

This last year has brought so much pain and hurt for too many; lives lost to Covid19 before they had left their mark or finished their tale; hardness and heartache of those left behind, those who have spent themselves in care and giving; those anxious and worried, detached and separated. We need not just to remember but to use the energy of memory to create purpose to change, to do different and be better. That is what remembrance is for me – not an act of precision and poise, of stiffness and formality, but a movement of memory and re-making.

So as I go for a walk on Remembrance Day I will sit and ponder, reflect and remember, and I will allow my story to be told inside my heart, and like my two Orcadian friends I will seek to memorialise those who I have lost not in words but in action, in a commitment to be and to do better.

The bench

I look out at the sea

crying in the dark tonight,

shedding its tears on the shore;

washing down the face of the land,

hiding in the shadows,

yet never silent,

always roaming around

desperate for welcome and warmth.

 

and I close my eyes and think

who are you nameless one on whose seat

strangers come and settle in loving embrace;

your future folded forever

in slatted curves of wooden shape

overlooking the encroaching tide?

 

for here you rest in silence,

28 years old the plaque proclaims

but yet hushes the laughter,

tears and story of your days;

as your name nakedly

witnesses untold tales,

as gossip and truth mingle here.

 

how many of your lovers have forgotten

your touch and smell?

how many now strain to the memory of your

voice welcoming response?

how many come and sit

and weep at your going too soon?

 

I do not know

and can only close my eyes and imagine

 

for like the sea you are here

in season and out

taking tears and turning them tender

accepting brokenness and moulding forgiveness

sharing joy and directing hope

recognising fear and caressing sadness.

 

and like the sea you smuggle

love into my imagination,

washing away my anger

showing me that in death you rest in my living

and become my future.

 

Donald Macaskill

Perhaps it’s because I have the blood of generations of Gaels coursing through me that I have always been fascinated by Halloween, or should I say, Samhain. Samhain is the ancient Celtic festival which culturally we have by in large turned into Halloween, in turn whose connection with the Christian festival of All Hallows is probably lost to many. Samhain was believed to be a time when the veil between the real world and the other world of witches, the wee people and the departed was at its thinnest. In times gone by our forebears would leave an empty chair and food on the table to satisfy any passing ancestors. Traditionally celebrated on 31^stOctober -1^st November it marks the end of harvesting and the start of the ‘darker half’ of the year.

I am writing this in the early morning of a day which is dark beyond dawn, wild and wet with the threat of gale and damage in the air. The atmosphere could not be more apposite for the day. What holds my fascination for this time is not the monsters and ghouls, the ‘dooking’ for apples or the endless carving of turnips or pumpkins – but that the day offers an opportunity to celebrate the harvest of the earth and to prepare and reflect for the darkening of the season.

But this year everything is different. There will be no knocks on the door, questionable poetic renditions or feigned childish shyness. Restrictions have limited traditionality, the streets will be much quieter tonight. But probably more than in any other recent year the original purpose of the day is all the more necessary  – a time to reflect on the year and to carry hope into the dark days to come.

One of the things that we have probably largely lost in our modern celebrations is the sense in which Samhain and its Celtic successors was a collective and shared experience. It was a time when people recognised their binding into each other, their connection in community and belonging , their rootedness in the earth and to the soil on which they stood, all of which would be to them so important in the coming days of a hard winter. It was a time to celebrate togetherness and to re-commit to being concerned and committed to each other in the days of dark.

This past week has been a strange one. I have spoken and written enough about the Public Health Scotland report on the discharge of people from hospitals into care homes so I will not mention the substance of its contents here. What I do want to reflect on in is the reaction both in the media and within politics. I have to confess to a real sense of disappointment and dismay. One national newspaper used language and description which maligned frontline staff, debates I have heard have been heated and vexatious, argumentative and dismissive. Now I am no shrinking violet and have been as robust as the next person when I have seen injustice or behaviour which is unacceptable. But the level of blame, the point-scoring and the desire to apportion guilt has been quite shameful . The reason for my disappointment is that many seem to have too readily lost sight of the fact that behind every statistic and number, is a human person, is broken grief and heartfelt hurt.

In the spring when we experienced the first wave of the virus there was an amazing degree of political, media and societal togetherness. There was a real sense of solidarity. That all seems to have disappeared in the heat of the summer and to lie in tatters in the empty harvest fields around us. The days of ‘In It Together’, of rainbows on windows thanking staff and key workers, of clapping for carers, of a sense of mutual regard seem a distant dream away.

Solidarity is a wonderful concept. In its French original it’s definition means a   “communion of interests and responsibilities, mutual responsibility,” a sense of demonstrating real interdependency.

In the first wave of the pandemic there was a real sense that we had consciously put aside personal and political ambition and put on a mutual resolve to determine through common action our regard for one another, our desire not just to protect ourselves but those around whom we lived. I remember the scenes of neighbours helping one another, of strangers becoming friends, of unity across garden fences, and a real growth of community at its best. The harvest of those actions was a real literal suppression of the virus. We need to re-discover our solidarity in this coming season.

When I speak to folks around me, whether carers or families, workers or clinicians, there is a real and palpable fear and anxiety. Unlike the days of spring, we know about this virus, we know the pain and distress, the loss and grief it can cause. There is fear in knowing what we know. Unlike the first wave in a spring that reached out into the warmth of summer, we know this second wave is coming at us in a winter which at least in Scotland can sometimes feel as if it is never-ending. So, it is all the more important that we hold each other up, that we re-discover the solidarity of the spring, as we enter into the darkening days of winter.

This day teaches and tells us that darkness is always followed by the dawn, it reminds us that in the cold hard barren earth that seeds of growth and renewal are already dormant waiting to struggle into life. This day should show us that through collective action, mutual aid and support, that we do and will meet the struggle, and come through the other end. We will not do so by creating islands of self-interest or reverting to a narcissism in politics or social discourse, we can only do so by leaning on the humanity of each other, by bringing friend and stranger close into our company. This is the solidarity which alone will beat this virus.

So it is that we have to re-discover the sense that the only way we protect those who are most vulnerable is by our own individual action. IPC, PPE, testing and vaccines are all critical tools in the fight against this virus, but most important of all are the individual actions we all have control over. What I do impacts on my neighbour. We all of us need to be responsible for each other.

And that is where the hope really is. Because we know deep within our bones, that the fear never truly overwhelms, that the warmth and light of new beginnings will spring into being, and that constraint and restriction will be replaced by renewal and reconnecting.

So it is that through careful determination, by linking our arms in the solidarity of common interest and concern, that I am optimistic that all our sacrifices, that all the separation and loss, the pain and anxiety, the death and emptiness,  will bear a fruit of renewal. But only if we seek to be a community rather than a collection of individuals.

The night of Samhain  helped our forebears in their beliefs to glimpse the past and the present, to be in touch with meaning beyond understanding, so our actions in the coming days will show us the future of our being together, as individuals, as families and as a nation.

I leave you with some of the elegiac words of the American poet Annie Finch whose love of Scotland in all seasons comes through so much of her work:

Samhain

In the season leaves should love,

since it gives them leave to move

through the wind, towards the ground

they were watching while they hung,

legend says there is a seam

stitching darkness like a name.

 

Now when dying grasses veil

earth from the sky in one last pale

wave, as autumn dies to bring

winter back, and then the spring,

we who die ourselves can peel

back another kind of veil

 

that hangs among us like thick smoke.

Tonight at last I feel it shake.

I feel the nights stretching away

thousands long behind the days

till they reach the darkness where

all of me is ancestor.

 

I move my hand and feel a touch

move with me, and when I brush

my own mind across another,

I am with my mother’s mother.

Sure as footsteps in my waiting

self, I find her, and she brings

 

arms that carry answers for me,

intimate, a waiting bounty.

“Carry me.” She leaves this trail

through a shudder of the veil,

and leaves, like amber where she stays,

a gift for her perpetual gaze.

@ Annie Finch

 

Donald Macaskill

Heroes come in all shapes and sizes. At different stages of our life we probably most of us need heroes. For some they will be the celluloid stars of imagination, sporting greats or fashion and style icons. For many they are the famous and extraordinary, the remarkable and amazing. Our heroes will doubtless change over time but at the risk of exaggeration most of us need a few heroes in our hearts. They are the people who inspire and motivate us, who are exemplars of something we admire and whose lives push us to be someone we want to be. Regular readers of this blog will probably have guessed that most of my heroes are individuals who are not well known, many of them folks I have met along the way, but all of them people whose compassion and care, humanity and sensitivity have made them for me heroes of our humanity. That’s why during the first wave of the pandemic I spoke about ordinary frontline carers as being the real heroes of this year.

But in a more traditional way there are some people who have always inspired me and who have taught me something important about the essence of what matters. For most of my life I have found the story and example of Rosa Parks to be truly inspiring. Many of you will know her claim to fame and the heroism of her actions.

On December 1, 1955, in Montgomery, Alabama, Rosa Parks when travelling home from work on a bus refused to give up her seat in the “coloured section” to a white passenger after the whites-only section was filled. Bus segregation was part and parcel of the law at the time and was a physical embodiment of the race laws that existed in the United States. She was arrested for civil disobedience in violating Alabama’s segregation laws. Her quiet dignity led to many in the black community to boycott the Montgomery buses for over a year which became the first major direct-action campaign of the post-war civil rights movement. Eventually in November 1956 the courts decided that bus segregation was unconstitutional. She became in many senses the ‘mother of the civil rights movement’, spent her life thereafter fighting for equality and now even has a day named after her to commemorate her actions.

After years of struggling to achieve justice , after her retirement, Parks wrote her autobiography and continued to insist that the struggle was not over and there was more work to be done. In her final years, she lived with dementia and spoke and wrote with passion about the rights of older people and those with dementia.

Today is the 15^th anniversary of the death of Rosa Parks in 2005. It is with a real synchronicity of time that today is also the 75^th anniversary of the founding of the United Nations.

On October 24, 1945, 51 countries came together to create the United Nations. Its purpose was to promote peace and cooperation around the world.

The 75^th anniversary is happening at a time of massive upheaval and uncertainty for the world living as we are through the  global health crisis which is the COVID-19 pandemic. The pandemic is resulting in severe economic and social turmoil. But as the UN has said this week it is also a reminder that times of struggle can become an opportunity for positive change and transformation. It is at such times that we learn what is intrinsic to life, why collective action and inter-national co-operation are so important, and perhaps why most of all peace is what remains the aspiration at the heart of the founding Charter of the UN.

There may be occasions when we can be tempted to forget the way in which the actions of others impact on our own story, but the global pandemic has shone a light on the way in which we are all inter-connected, one with the other, co-existing in our humanity and on our planet.

The COVID-19 pandemic for many of us has become a watershed. Even as we now respond to a second wave and no doubt prepare for future waves of the virus; even as we accept the reality that pandemics will become part of the pattern of our future, we are now being presented with opportunities to do better and be different.  These are the times when the lessons of our heroes can come off the page of our imagination and be written into action and response.

So, it is on this United Nations Day and in recognition of those who have stood up to injustice that I want to argue that Scotland needs to urgently decide to commit to creating the role of an Older Peoples Commissioner.

There has been much debate over the years about whether or not the time is right for Scotland to join Wales and Northern Ireland in the UK, and many other countries across the world in appointing an Older People’s Commissioner. I would argue that the time for such debate is over and that the pandemic response requires such a role to be created.

Ageism has been at the heart of so much of what has been the experience of older people during this pandemic. Whether it has been the suggestion that Covid19 was a ‘baby boomer harvest’ and only affected the old, all the way through to comments in the media this past week about the requirement to ‘segregate the old and vulnerable’ in order to protect and safeguard them. Throughout the pandemic there has been an obscene , conscious and at times unconscious, ageism at the centre of much social and media commentary. In practical actions, from a questionable ethical Guidance document which used age as a proxy for decision making, through to the inappropriate use of DNACPRs, to unequal treatment of older people in terms of access to social care packages, to the lack of agency and voice to those who receive care at the table of decisions – this pandemic has been a shameful enactment of profound age discrimination right across Scotland.  It is time for that to change. It is time for Government and political leadership across the parties in Scotland to take older age seriously and create a post for a Commissioner.

Scotland does indeed have a Minister for Older People but that is not enough – that is part of the structures of government, an Older People’s Commissioner is someone who is appointed by a parliament, responsible both to it but primarily to the older people of a nation, and who is enabled to speak and act with independence, able to hold those who rule and decide to account for responsible human rights based actions. She/he becomes an advocate for older age.

In the last few months I have had the privilege to work alongside Helena Herklots and Eddie Lynch, the Older People’s Commissioners in Wales and Northern Ireland respectively. Their ability to champion the voice of older people, to challenge and remind, to articulate and to speak out has been inspiring. Scotland needs such a voice to hold all of us to account, to remind all of us of our responsibilities. The election in 2021 should offer us that as a legacy to all who with older age have struggled in these last few months. I recognise  the creation of such a post is in itself no panacea but it is the first step in a journey to equality regardless of age. As a people, as communities and as a nation we must challenge the pernicious acceptance and allowance of age discrimination.

Growing up I was very aware that others had heroes who sat alongside those I held important. It felt to me that every night in my teenage years that I feel asleep to the sounds of the music of Bob Marley, the undoubted super-hero of my older brothers’ world. Over time – perhaps with sleep appreciation – I have grown to appreciate the awesome power of Marley’s words. One verse in particular resonates today as I remember those who have stood up for equality, justice and peace throughout the 75 years of the United Nations, including Rosa Parks who literally refused to move, and as I continue to work with others to create for Scotland an Older Peoples’ Commissioner.

Get up, stand up, stand up for your rights
Get up, stand up, stand up for your rights
Get up, stand up, stand up for your rights
Get up, stand up, don’t give up the fight

 

Donald Macaskill

 

 

In the week that has passed one thing has dominated my conversation and consideration – care home visiting. On Monday the Cabinet Secretary published Guidance which amongst other things extended the potential of outdoor visiting to include up to 6 people, indoor visiting was enhanced to enable the possibility of physical touch (with PPE), longer visits (up to four hours) and involvement in activity with residents. In addition, there was permission given to allow children, pets, and hairdressers into care homes.

In the hours and days after the announcement I have held and heard many conversations with individual family members, providers, managers and staff. The conversations have sharply illustrated the degree of disagreement both about the visiting guidance but indeed about the risks and opportunities around visiting altogether.

I am writing on this subject this week to partly reflect the variety of views but also to attempt to identify steps that might be taken in the weeks ahead to give greater reassurance, and most critically to argue that unless we all of us work collectively over the next few weeks then the winter we are about to face will be a very dark one indeed.

There can be no doubt about a point of overwhelming agreement and consensus – namely that everyone involved in care homes both recognises the importance of restoring a more normal and natural family and resident relationship, and that there is growing evidence of the physical, emotional and psychological harm that is resulting from the enforced and extensive separation that has occurred over the last seven months. There can also be little grounds to dispute the knowledge that the risks of Coronavirus upon those who are our very old, frail and elderly are immense and considerable. No one wants to see a return to the devastation which brought such heartache and sadness to all our lives in the spring and early summer. But there are also points of real tension beyond agreement.

I have heard this week from providers, care home managers and staff who are deeply concerned and very fearful indeed about the measures which were announced on Monday. The grounds for their concern are numerous but chiefly they feel that the timing of the announcement and the start of increased visiting is miscalculated. They argue that at a time when cases of the virus are increasing in the community, when hospitals are beginning to fill up and when large parts of society are facing increased restrictions in order to protect, then this is not the time to extend visiting and increase the risk of transmission from the community into care homes. They further argue that the safeguards which we have been operating over the summer months are now at a state of real fragility, this is especially the case with care home testing where the experience of many is that delays in the UK Portal mean that some staff are having to wait for test results for a period of up to and beyond a week. They express further concern that without the testing of visitors that there will be real harm to residents from the risk of asymptomatic individuals coming into the care homes. They state that they have a duty of care not just to individual residents but to all residents and staff. They have also highlighted the huge pressure extending visiting places upon already stretched and exhausted care staff and managers at a time when they should be focussing on keeping people alive.

In addition, I have heard from family members who have written and spoken to me who are alarmed at the extension of visiting and see this as posing a risk to their family members. They have stated that they are the silent majority who are either happy with the level of visiting as it exists or simply fear for the extensions on similar grounds to those I have already mentioned. I know of families where some visit and others refuse to do so.

Then there are other voices, and I have spoken directly to many including representatives of the Care Home Relatives Scotland Group who I met alongside some providers and managers on Thursday evening. They have long campaigned for a normalisation of visiting and have broadly welcomed the new enhanced Guidance. Their case is simple, that it is a human right for an individual to be able to be with their family; that care homes are not prisons and that we have to respect and listen to the desires and will of those who are residents. They point to the research evidence from SAGE and others that the risk of transmission of the virus into care homes is very low, almost absent, with the appropriate use of PPE and certainly lower than other associated risks. They point to research which shows the level of deterioration and decline being experienced by care home residents devoid of contact and encouragement, presence and family love – they point out that no matter how good the quality of paid care is in a care home it can never replicate the love and touch of husband and wife, son and daughter and family in general.

I think it is important to state that everyone involved in this discussion and debate is starting from a point of real sincerity and desire to protect, keep safe and enhance the quality of life of residents in our care homes. The way that is to be achieved are the points of disagreement.

Even though the First Minister has made clear that guidance will not be mandated it is critical we work collectively together to move issues forward. I do not think this is the best place to go into the various individual elements of some of the debate, but I do think there are several actions which can be taken to improve things on the ground.

Firstly, we need to get to a working Covid testing system as a matter of urgency, one that can give as much assurance as possible to staff working in care homes. The current UK system is not working and the sooner there can be transfer to a robust NHS Scotland system the better.

Secondly, we need to develop a mechanism which will enable family members to either become part of the standard staffing testing system or much more desirable to introduce either in every care home or on a local community basis a rapid testing system that would enable them to be tested and get their results quickly, recognising their critical role in the care and support of their relatives.

Thirdly, the Scottish Government and COSLA need to make very clear that additional costs which result from enabling visiting to happen will be speedily met so that providers of all sizes are able to be sustained.

Fourth, we should collectively work to develop a system whereby the sheer managing of visiting (in these current circumstances) becomes the focus of one individual in each care home, whether volunteer or not, because we cannot over-burden existing staff who are already tired, exhausted and focussed on keeping life going and maximising health and wellbeing.

Fifthly, it is time to develop a National Care Home Visiting Action Plan and Statement where we bring together all the diverse voices and commit to how we will move forward into the spring. This is as important an area as any of the other realms of winter planning and will itself be no doubt impacted by other threats such as the growth of seasonal respiratory conditions, the flu and Brexit fall-out.

Sixthly, we need a degree of consistency around decisions taken by Public Health officials over when visiting is restricted due to community transmission. Explicitly we need all of us to know not only when this happens but also why. So why is it in some parts of the country that even window visits are being restricted but in other parts they are allowed? Why do we exclude visiting for 28 days in instances that a staff member tests positive and is not at work? This seems disproportionate and risks closure to visits becoming a rolling reality for some homes.

Seven, it is increasingly clear that we need more localism in the implementation of decisions. We need to find a better balance that avoids blanket positions being adopted and which enables individual care homes in specific parts of the country to work together with their stakeholders and family members to take decisions locally which reflect the risks in the local area. We are losing the ability to trust our care professionals.

Eight, as was shown in an open letter from some of our leading Infection Practice and Control experts in yesterday’s Nursing Times, we have to urgently develop a way of understanding infection practice in our care homes which is not simply the adoption of what works in acute health settings. Care homes and their residents are not equivalent or the same as hospital wards and their patients. One is an institutional setting, a care home is not; it is a home of friends and companions, who interact, mingle and mix. As we move into winter the ‘IPC fundamentalism’ which has been adopted around infection control practices needs to be replaced by an understanding of the imperatives of infection prevention which work for a different context.

Lastly, we must all of us get better at communicating and consulting. There will be many times when decisions have to be taken which are hard and challenging. It is especially important at such times that all involved both understand reasons and feel involved in the taking of these decisions, where it is possible to be so involved. It is equally important that when any new future Guidance is developed and issued that those most impacted are the first and not the last to know.

At the heart of all the debate and discussion I have held in the last week, one thing has continually struck me, and that is the need for us all to work together. At a time at which wider society is obscenely chattering about the possibility of segregating the old and most at risk, in some pretence of humanity, it is incumbent on all who are committed and concerned about care in care homes and in the wider community, to be united rather than divided.

It is not always easy to see the perspective of the other, especially when the urgency of action, the desire to protect, the passionate need to be present with loved ones, the fear of failure and blame, the terror of the virus, dominates our thoughts, But we can achieve very little without working alongside others.

The next few weeks and months will be ones of challenge for all who care. The nights are already growing longer and the evening sets earlier with each day. I have always been more at ease in the draughts of winter than the rays of a summer sun, but one thing I have discovered is that you cannot rest for long in winter, you have to keep moving on to the hope which spring beckons, bringing a new start and new beginnings. We cannot simply settle content with the ways things are at the moment – we need to work together to make sure contact with family is enhanced and safety of residents is deepened.

One of the poems I read this week is an old favourite. It is ‘Stopping By The Woods on a Snowy Evening’ and is one of Robert Frost’s earlier poems. It describes the woods as a place of beautiful silence and peace, but it is also a place that exists alongside danger, stress and activity, amidst obligation and responsibility. For me it is a reminder that we all have promises to keep, not just to keep going, but to be better, to restore, and to re-build. That is the essence of care wherever it is delivered. We cannot stand still in the winter peace – we have to move forward. “I have promises to keep, And miles to go before I sleep.”

As we move into winter it is critical beyond the obvious to state that we must find ways of being open in our dialogue, working together and making sure that we maximise the protection of folks from the virus but at the same time increase the alongsideness of family presence. I believe we can do this but not in our own defensive and reactive siloes. We owe it to those we love to work together with a responsiveness and mutual regard which is at the centre of all good care.

“Whose woods these are I think I know.

His house is in the village though;

He will not see me stopping here

To watch his woods fill up with snow.

 

My little horse must think it queer

To stop without a farmhouse near

Between the woods and frozen lake

The darkest evening of the year.

 

He gives his harness bells a shake

To ask if there is some mistake.

The only other sound’s the sweep

Of easy wind and downy flake.

 

The woods are lovely, dark and deep,

But I have promises to keep,

And miles to go before I sleep,

And miles to go before I sleep.”

Robert Frost

 

Donald Macaskill

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Japanese Maple

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

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

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

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

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

© Clive James, 2014

Donald Macaskill