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Life interrupted: preparing to do better. A blog from our CEO

I have been thinking a lot this week about the weather.

The weather has always fascinated me, which is probably just as well for someone born in Scotland and with my surname (that latter observation will be lost on anyone born after 1980!) My love of all things meteorological was renewed when in Skye two weekends ago I saw the weather continually change in the distance with the regularity of a dance, one minute bringing torrential rain and the next blazing sunshine. Skye is a place where  Crowded House’s ‘Four Seasons in One Day’ should be the theme tune of existence. With a wide vista and far horizon, it is indeed possible to ignore weather forecasts and simply look out of the window and know what you need to wear – at least for the next hour.

This last week for many of us has been a reminder of the unpredictability of the weather with torrential thunderstorms and searing heat bringing with it destruction and devastation alongside sleepless nights and irksome hot working days.

One weather phenomenon I fell in awe of was something I witnessed years ago when on another island – the storm. Living in Holm, Orkney for a year gave me the experience of feeling the intensity of the ‘calm before the storm’, that stilling of life and sound before the flick of a celestial switch brought roaring power and breath-taking energy raging down upon you.

There is a sense for me that the recent past, these present days and what the future might hold feels a bit like experiencing an Orcadian storm.  

The last few months have been a time of unreality. It is hard to remember what life was like in pre-Covid times. Indeed, when I see on television a programme filmed before March my instant reaction is to recoil at the lack of social distancing and question the absence of masks and PPE! Our worlds of perception have changed markedly.

Life as we know it has been interrupted, whether you are a young person aspiring to a career dependent up certain grades or someone wanting to go on holiday to France or Spain; whether you are simply wanting to be with your mates in a pub, go to the football, travel to visit family, have that operation and procedure you have been waiting for, life has been put on hold. The rhythms of our ordinary living have been interrupted and removed by coronavirus. We yearn for a return to ordinariness and yet we are told by our leaders that we should not be feeling and doing things as if life was ‘normal.’

But the last few months have for countless thousands also been a period of real pain, loss and hurt.

It feels as if now we are in a hinterland, in a waiting time. The focus of so much of my time in the week that has just passed has been spent on preparing. Preparation for a resurgence of Covid, for the impact of the winter flu, for the unknowability and the uncertainties of our Brexit exit. Preparation to ensure that the social care and health systems are able to withstand the barrage of another assault, a different battle and a new challenge.

But as with a sense of calm before the unknown we have time to reflect and think, to recollect and to change. So, what should we be doing in this hinterland time? I think we have to in this liminal space between our past and unpredictable future prepare to do better and to be better.

There are aspirations I have for restoring a better way of interrupting life and normality so that we can come through future challenges in a way which is closer to who we want to be both as individuals and as a society.

So, in this hinterland of life interrupted let us prepare to do better.

Let us prepare to listen to those who are experiencing the agony of aloneness and mental health fatigue and breakdown. We have to attend better to the issues that  mean that people are struggling in their mental health with the interruption of the normal – we are all creatures of habit to a greater or lesser extent and the habits of our humanity have been thrown out of kilter. There are countless who have suffered in isolation and who today are anxious over the prospects of their future, potentially being unemployed or unable to achieve their dreams and aspirations.

Let us prepare to do better in supporting those who have lost loved ones during the pandemic and who might do so in the future. We have to do better at talking about death and dying, to stop ourselves becoming numb to the statistics of death and start finding a vocabulary that enables us to speak and to share grief with one another. In England hundreds have died from this virus in the past week yet their deaths are diminished by political silence and absence from media comment. We have to do better at working at the solace of comforting one another.

Let us prepare to do better in our care homes by really listening to what residents and families want in these changed times. We have to start to really include and involve people whose lives have been turned upside down by the pandemic. Emergency response may have justified non-inclusive action and decision-making, but in these times and moving forward we have to find better ways at making sure the autonomy and individual rights of those who reside in care homes and their families are considered just as important as the views of ‘experts’, professionals and staff.

Let us prepare for the future by making sure that we really learn the devastating truth of deterioration and decline in the health and wellbeing of care home residents by better managing measures taken to protect but which have stopped people living a life which is theirs by imprisoning them from contact and relationship, from movement and activity in their care homes. We need to do better at protecting and advancing holistic care and support including making sure in the future health professionals are physically present in care homes.

Let us do better and prepare to change a system of community social care commissioning which treats individual citizens as packages of commoditised care and let us start to re-discover the essence of relational support. There is a wave of unmet need and family carer breakdown in our communities about to overwhelm us.

Let us prepare to ensure the physical realities of ventilators and stand-by hospitals, of PPE and medical supplies are in place but let us also remember we need to continually do something about the health and wellbeing of an exhausted and sometimes demoralised staff. In particular let us face up to the reality that many working in leadership and management in social care are at breaking point with exhaustion not least from the continual demands from an insensitive system over which they have no control. We need to appreciate that we are at risk of haemorrhaging managers from the care system because of a lack of professional respect and understanding or simply because they are spent and knackered by the weeks and months that have passed.

I could go on, but I am convinced in this time and space we have to not just learn lessons but to start working on doing better.

And perhaps the biggest challenge is one we all face and one which I think only now we are beginning to truly appreciate – and that is that we are all of us needing support in order to live this life less ordinary. We need support to learn to live with a lack of the familiar and routine; whether that be working from home, coping with different models of learning for our children; not being able to be as autonomous as we once were, or simply how to ‘be’ healthy in a world of social distance and physical detachment. In a sensual physical world, we have to learn to give assurance and affection without touch and presence. We all of us have to live in our mid-Covid hinterland between past lives and future uncertainty.

In the fragmented space of our normality, in that hinterland between ordinary days and unknown future, we have to work together to create a response which roots us in our shared humanity and our collective need to be compassionate and to care. As we yearn for the familiar and the ordinary, we have to support each other to find our ways through the fractures of feelings which for many are raw and painful, confused and conflicted.

On the other side of the storm the world is forever changed. There is a freshness of air and a breath which invigorates. As we gather up the driftwood of our past we find a new purpose and direction for our present. I hope that will mean for many of us the finding of beauty in the ordinary and meaning in the mundane. We will be able to look out and see the clouds and the sun gathering on the horizon and feel at ease with who we have become as individuals, as a care system and as a community, and we will find the clothes we wear are dignity, care and compassion. It is a future we have to prepare for just like the Scottish weather.

Donald Macaskill

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The invisibility of loneliness: an opportunity to change – a blog from our CEO.

Like many others working in social care I receive invitations to attend events and conferences. This week I have received notification of no less than three conferences in the next two months looking at the issue of loneliness and isolation both during the pandemic and before/beyond it. Loneliness seems to be an issue of real concern at the present time.

I don’t suppose any of us would have imagined in March that as a society we were going to be starting a process of months of social isolation and social distancing, being physically apart from those who matter to us and distant from those we know and love. For many of us that has been very hard indeed but the slow return to connection and relationship has been one of the few positives over the last few weeks of summer. But this sadly is not the case for everyone.

In a world and at a time when relationship and connection seem to be all the more important there are those in our communities who are dis-connected and alone.

At the height of the pandemic I received a call from someone who before Covid19 led an active life contributing to a diverse range of organisations and groups. To do so they required the support of a carer because of their own life-long disabilities. With the start of the pandemic all that disappeared as their social care package was reduced and then frozen. Virtually overnight they became disconnected, deeply impacting on their sense of self and identity. For this individual isolation meant a loss of more than simply being able to be out and about, it stripped them of their confidence and self-esteem. Incidentally like so many this person’s package of care and support has still not been renewed. They have been told that they seemed to have ‘managed’ without paid care!

Coronavirus and the imposed lockdown has deeply impacted thousands of individuals and created for them a sense of loneliness and isolation. In June an ONS Opinion and Lifestyle Survey found that about 1 in 4 people aged 55-69 and almost 3 in 10 people aged 70+ felt lonely in the preceding week. There have also been a range of academic papers and studies highlighting the degree to which people of all ages have felt lonely and isolated during the lockdown.

It is clear even at this early stage that this has and is having a profound impact on mental health and wellbeing. What might surprise some is that those most impacted by loneliness have been those in younger and middle years. Sadly, for those working in social care this may not be a shock – mainly because we have known that older people have experienced loneliness and isolation for many years!

In a world which presupposes relationship as being intrinsic to well-being years of research have shown us that loneliness is the day to day, week by week, month by month experience of older people in Scotland. One survey by the National Campaign to End Loneliness undertaken a couple of years ago found that of the older population of the city of Glasgow, it is estimated that 10% can go days or weeks without having any contact with anyone. It stated that loneliness and its impact can have such negative health determinants that it is the equivalent of smoking fifteen cigarettes a day.

With over 1.4 million people in the United Kingdom reported as being lonely, the issue has been known for years. During Covid19 an estimated 6.1 million people were living on their own, of whom around 2.2 million people are over 75. For millions Covid19 lockdown was a time of real loneliness and deep isolation.

As we come out of strict lockdown and as we prepare for winter and the challenges which it will bring in our management of Coronavirus I think it is urgent that we address now issues of loneliness and the hugely negative impacts that isolation can have on the health and wellbeing of people. It is clear that this has been the case in our care homes. However, the impact of isolation and loneliness in our wider community has not received the focus and attention that it urgently requires. Without any sense of hyperbole loneliness can kill.

Now lest I get accused of over-simplification. I recognise that for many being on your own is not intrinsically negative and admittedly much of the recent debate has ignored the benefits of solitude. There is a world of difference between social isolation and forced loneliness over which you have no control and which you do not desire, and the reality for many which is a decision to be single and alone. There has been an automatic presumption of the negativity of aloneness in much of the consideration of these issues. So, what we need rather is a serious debate about what loneliness is and what interventions are needed, which will be beneficial for both the individual citizen and society as large. That is a debate we urgently need to have in these mid-Covid times.

I hope as we consider the impact of loneliness we also reflect on what social care can bring to that debate. Social care in essence is not about engaging in a set of transactions and functional tasks rather it has at its heart the enabling of individual citizenship and the fostering of relationship. In decades gone by the person who used to be known as the ‘home help’ was an individual who not only carried out daily tasks but much more importantly spent time with and gave time to those they cared for. They were the eyes and ears of protection and prevention, they were the carrier of community insight and gossip, they were the ear to listen to and the person to unburden upon.  When we stripped out this element of care in the reforms of homecare in the 1990s we lost not just individual characters, but we lost a sense of connectedness and cohesion. Care is about a relatedness which reduces isolation and fosters connection by creating community.

Moving into the autumn and winter I hope as we restore packages of support and care in our communities, as family members return to work and ‘paid carers’ take over, I hope we use this time to address the challenges of loneliness. Now is the time to change our view of what homecare is all about. Now is the time to restore time, relationship and connection.

For years people like me have criticised the way in which as a society in Scotland we have apportioned and commissioned social care for our older citizens. Before the pandemic Scottish Care estimated that at least a third of Scottish councils commissioned 15-minute visits for the provision of personal care. Despite all the political rhetoric to the contrary we still have thousands of people experiencing the indignity of the degrading practice of flying visits. For many individuals receiving support at home, 15-minute personal care visits barely allow for tasks to be completed, let alone to develop a positive relationship between the individual and their carer. Never mind the battery care-hen pressures they place on the worker by electronic call monitoring and checks.

We must surely use the opportunities presented by Covid19 to invest more in the care of our older citizens in the community. Whatever happens with a second wave or with outbreaks and lockdowns we have to do better by those who require care and support in our communities. One way of addressing loneliness is to stop treating people as a problem to be solved but rather to empower them to be in control of their packages of care. That is what we have already in legislation (the Self-directed Support Act) but the system and vested interest and mantra has prevented real control and power being given to those who require care. Let us end 15-minute visits, let us pay for people to spend time with our older citizens, to be present rather than to be clock-watchers for the next call.

A society where loneliness becomes a political policy priority, but not where the same political system is prepared to allocate resource to address the issue is less than it should be; a community where contact is reduced by the arithmetic of affordability does not in any sense value those who it should care for; and a place where older age is considered to be beyond contribution – such a society needs to rediscover the essence of a love and regard for others, which would be a true pandemic legacy.

Loneliness is not just the absence of others rather it is that emptiness created by absence which reaches inside a person and holds them. It is the sense of physical and emotional abandonment and complete aloneness; the sense that no one is there for you, no one is listening to you, and no one is truly hearing you. That tragically is what too many feel today. A social care system worthy of its name should seek to support and uphold not just by care but by being ‘social.’

Donald Macaskill

@DrDMacaskill

 

 

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Home: a place of shielding and freedom: our CEO’s weekly blog.

I’m writing these words from the Isle of Skye where I arrived yesterday to visit family for the weekend. Every time I come to Skye I have a sense of coming home.

As the child of two Skye parents my life-story is punctuated by journeys ‘home’ to Skye; not least the activity of packing and going on the seemingly never-ending journey north from Glasgow. Decades ago, it did indeed feel like an intrepid adventure taking as it did an inordinate 12 hours for one large family to travel by buses and taxi and arrive at the place which for generations my family had called theirs. I possess memories of ridiculously hot summers spent with grandparents who seemed to me already ancient beyond years; I resurrected my Gaelic by listening in on the latest gossip; I gained insight into the strong cultural dialects of church and tradition, of music and poetry; I have memories of the rituals of crofting as my eldest son father took his part in shearing sheep, repairing byres and erecting fences.

As I grew up I recognised that deep within me was an inner truth that I sensed a wholeness of self only when I was in that space of open glens and brooding mountains, breathing in a beauty so raw it’s reality caught your breath, witnessing the vibrant power of nature in daytime storm and evening calmness. I also sensed a need to be away, to be distant, to be free and far. I now know that this was a sense of ‘home’ which despite all efforts I did not have away from this space.

To return home restores and renews, it re-invigorates, and it gives balance. I know acutely that this is not true for all and I am not blind to the brokenness of my own story. Home is not always a place of happiness but can be a harbour of hurt and a painful prison. But I also know from years of conversations with those who have never found a space to be themselves, and to feel secure and safe, that there remains a yearning and a desire to find that space which we often call ‘home.’

In this last week I have been reflecting with many others about the value of home.

I am especially mindful today of those who have spent months shielding themselves from Covid and who are being ‘allowed out.’ That is the phrase used by someone who wrote to me this past week. Fiona is receiving treatment for cancer and has been unable to go and see her father in a care home not just because the care home has been closed but because she has been shielding herself in her own home. She reflected in her letter the way in which she feels safe and secure, protected from harm and the unknown of this virus behind her windows and doors. She reflected that she was concerned about how she would cope with being away from that place of protection; a place where in her own words she has ‘cocooned herself from harm’.

Our home is a place of memory and belonging. It is not just a construction of brick and mortar, of stone and wood, though the physicality is part of what makes a place special. Home is a place and space which enables us to be authentically who we are as a person. It should be a place that we feel protected, able to be who we are without mask or pretence, able to be at ease inside our own skin.

But I also recognise that the best homes are places which enable you to have a sense of confidence and freedom to go out into the world to be changed and to grow, to fail and to flourish, and in both to be able to return with the confidence of acceptance, welcome and warmth.

So, I am thinking of those who are making that journey out today for the first time from the place of shielding to encounter and engagement with others. It is one which will no doubt be faltering at first but which I hope the rest of society will support not least by adhering to the safe practices which will keep us all safe from this virus.

But I am also thinking today about what home has felt like for those who have been caring for a loved one in their own homes. Many of them lost the packages of support which they had before the pandemic and these are only slowly getting back. Others chose to cancel care packages because they feared that workers would bring in the virus and these have still in most instances not been renewed. I am very aware from conversations this week that family and ‘informal’ carers across Scotland are exhausted and at the stage of really needing immediate support. The task of caring for a loved one is draining and depleting even of the energies of loving. Yet day centres remain closed and many sources of traditional respite are shut off to carers, including many care homes. There are older Scots at home who today are anxious about getting access to their GPs, unsure about when the podiatrist or community physiotherapist will next see them, who know that their own health has been affected by lockdown whether as an individual or as a carer or as someone who has been technically shielding.

Lastly when I reflect about ‘home’ today I am thinking of all those who I have spoken to and been in communication with in the last week about the place which their mother or father, wife or husband, grandparent has called home – their care home.

Yet another week has passed, and we still have not had an announcement about what date residents will be able to be visited inside their care home. I have said before and I fully acknowledge the need to carefully balance the risk of the virus getting into our care homes with the desire and urgent imperative to restore the rights of family and residents to be re-united. I am not naïve to the hardness of these decisions, but I am increasingly concerned that our scientists and others are not aware of the damage and effects of separation.  There are thousands who have not seen a family member for 21 weeks. Their care home is their home, a place of security and safety, a place which they have been protected in despite the ravages of this disease. There is a growing sense of anger and frustration that as the rest of society prioritises children going back to school and as snooker halls and bingo, funfairs and casinos are given dates for opening, we still do not have a date to restore life to our care homes, to allow indoor visiting, to inch closer to making our care homes back into real ‘homes.’

Home is a space and place,  a feeling and sense of being at ease and secure, of being able to become who you are and be what you dream of. Home is a place of memory and dreaming, of creating and growing. But home does not just happen – it is a work of heart and soul, of sinew and sacrifice.

Today we need to work with even greater energy to ensure that family homes are spaces where the old and ill, those shielded and in need of extra protection, feel they have the level of support and care, guidance and assurance that they need. Today we have to renew our efforts to ensure that our care homes do not become antiseptic units of infection management devoid of presence and humanity but are restored to being places of encounter and life. We need to get family back to start re-creating home not least for those whose time is in days and weeks, not months and years.

Home is the labour of those who feel the need to root their loving and compassion into a place and space, to create a cradle of belonging for family and friend, stranger and guest . When I close my senses there is only one place which webs me together. In that I am lucky. For at least a couple of days I am ‘home’ but with the conviction that we must restore and affirm that sense of home to and for all.

“In the distance day was dawning,
Comes to me the early morning,
Something tells me that I’m going home

The brand new sun shining bright
From the darkness fields of light
Something tells me that I’m going home

Going home
When the summer’s coming in
And the moonlight on the river
Shows me where I’ve been

Soft the rain is gently falling
Lightly cross the city morning
I get the feeling that I’m going home

Across the moorlands, past the mountains,
O’er the rivers, beside the new streams,
Something tells me that I’m going home

Going home
When the summer’s coming in
And the moonlight on the river
Shows me where I’ve been

As the train is rolling nearer
Ah, the feeling just to be there,
Something tells me that I’m going home

Now the skylines reach my eyes
The ridge stands out in highland skies
I just can’t believe I’m going home.”

(Lyrics of ‘Going Home’ by Runrig)

 

Donald Macaskill 

 

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Dying of a broken heart: the pain of care home deaths. A personal reflection.

I interrupted one of my many Zoom meetings this week to go outside briefly and stand with others as the hearse carrying the remains of a neighbour left his home for the last time accompanied by the small family group able to attend his funeral. I was saying goodbye to a man of quiet dignity and constant smile who had left his home for the last time just before the pandemic as his dementia worsened to the extent that he needed to enter a care home.

As I stood there clapping with others in memory and thanks I could not get out of my mind the words his now widow had spoken to me a few days earlier. I had met her and as I expressed my condolences she told me of how she had been unable to see him for four months until his last few hours. She had nothing but praise for the care home staff but she was deeply upset about restrictions that prevented them from being in contact as they had for virtually every day of their married lives. I parted with her words ringing in my ears. “Donald you have to sort it. His death certificate said he died of his dementia, but I wanted them to write in it that he died of a broken heart, but they wouldn’t. He died of a broken heart. I just know it.”

As the weeks have gone on fewer and fewer people thankfully have died from Covid19 in our care homes and this past week we have seen the lowest level since the start of the pandemic. But sadly, in the rhythm of time there are still people dying in our care homes as there always has been and always will be. Care homes as I have said elsewhere are increasingly hospices in the heart of our communities; places of living in fullness and love until the end; places which give solace, comfort and care as folks come to the end of their days. So, there is nothing new about death and dying in our care homes. Indeed, over the years the ability to get to know residents as individuals, especially those wracked with dementia and its horrific hold, have made care homes places capable of giving people as personal and as appropriate an end as possible.

During Covid19 the natural humanity of caring has been interrupted. Part of the rhythm of a death which is expected is the necessary and essential presence of family and friends, to give assurance, offer comfort and to simply be present. Being with the dying is our greatest gift to a human life; surrounding a life with love and memory, holding one another in our first steps of grieving are intrinsic to good bereavement. The times I have been privileged to be with someone as they have died will forever be etched in my soul, without diminishing the aching sadness and emptiness that those moments brought. I have learned more about life in the presence of death than from any textbook or any teacher.

“He died of a broken heart.” Living is not just the intaking of breath into the frame of a physical body of flesh and bone; living is not just the occupying of space and earth; living is not just being there. Living is about relatedness,  knowing that you are part of a story, being assured that you matter, that your voice is heard and your personhood upheld. What is the point of simply continuing to be here when all that is of worth and meaning, of value and heart, is absent and held back from you. The number of our days are as nothing without a quality within those days.

So it is that I do indeed believe that there are many others just like my neighbour who have died and are dying in our care homes not because of the vicious virulence of a virus but because of the measures put in place to protect and save their lives.  I am definitely not saying that actions taken to protect are misplaced or wrong, certainly not in the earliest days of this virus. But now we have entered the 20th week of lockdown in our care homes and with regretfully no immediate move to visiting indoors, I have to with all honesty and I hope with integrity and sincerity, question whether we are now doing more harm than anything else.

I cannot imagine what it is like to have been in love with someone for decades, to have so become inter-twinned with another, that your steps are as one, your memories wrapped up in an alongsideness so intimate that there is nothing to separate them – and then to be separated, kept distant, only able to touch through glass, or speak through a machine. I cannot conceive the agony that it has been and still is for so many hundreds of not being able to touch and hold and be with those you love. I dare not imagine what it is like not to be with those I love.

There are loads of attempts to find a vaccine for this virus. But what I want – in the sad awareness that this virus will be around for many many years to come and that a vaccine may not work for all – is that we put equal effort into finding ways in which we can  better balance protection and presence; that we can devise ways in which families can be with their loved ones so that the scar of separation is removed from our care homes.

I have seen it before, and I know deep inside myself the truth that my neighbour spoke. It is possible to die of a broken heart; to turn your face to the wall because the voice that gives you confidence is not heard; the hand that strokes you in assurance is not felt; the smile that lightens your soul is not present. There is no science for such an assertion only the evidence of experience and the truth of knowing.

In the weeks and months ahead, we have to get better systems of Infection prevention and control for our care homes which are appropriate to their nature as a home first and foremost and not simply adopt measures and approaches from an acute hospital setting. In the coming weeks we have to give very serious consideration as testing techniques develop to appointing at least one relative for each resident to enable the continuation of contact and human presence throughout any future outbreak. Over the next few weeks we have to really start to hear and listen to the voices of those who have autonomy and rights. We have to stop doing to and for and start listening to the voice of resident and family.

We cannot mend a heart which is broken; we cannot bring back a life which is lost or fill the emptiness of the days which hundreds have experienced, but moving forward we all, I believe, need to commit to responding better and doing differently in the future of this pandemic.

There are few poems about loss and dying more beautiful than Maya Angelou’s ‘When Great Trees Fall.’ I end this piece with the last stanza of her poem because it reminds us that when anyone dies they leave not just a memory but a call to action based on their living. The hundreds who have died in care homes in the last few months, my neighbour amongst them, need action not memorials, they deserve change so that no more hearts may break, and to that I for one will commit.

‘And when great souls die,


after a period peace blooms,


slowly and always


irregularly. Spaces fill


with a kind of


soothing electric vibration.


Our senses, restored, never


to be the same, whisper to us.


They existed. They existed.


We can be. Be and be


better. For they existed.’

 

Donald Macaskill 

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The essence of hope: the dangers of Covid19 optimism.

 

Hope is not optimism,

which expects things

to turn out well,

but something rooted

in the conviction

that there is good

worth working for.

 

– Seamus Heaney

 

Hope is one of these intangible commodities. If we lack or lose it we diminish our abilities both individually and collectively to achieve and to continue. It is an emotion which has been very present in a lot of the conversations and exchanges which I have had this week.

Hope was there when with others I attended the NHS Mobilisation meeting chaired by the Cabinet Secretary. It was a hope that through deliberate and focussed action we could begin to restore NHS and social care services to where they had previously been, learning lessons from the pandemic response and ensuring that we are as prepared as possible for the coming winter. It is a hope not based on day-dreaming but solid hard work which through a cautious ending of lockdown and opening up of society means that we will meet the current and future challenges of Covid19 with as much preparedness as possible.

Hope was there when I spoke to a manager who had to deal with the family of a co-worker who had died as a result of Covid19. It was there when I spoke to the family themselves. It was a hope that tomorrow would be better, that they would slowly be able to put back together the shattered pieces of their lives and find a new way of living without the strong presence of their loved one. It was a hope which they desperately needed to pull them through into their future  because right now they are drowning in the emptiness of loss and the pain of grieving.

Hope was there when I read a beautiful pain full letter from a mother unable to hug and hold her adult daughter because she lives in a residential home and is subject to the current restrictions on visiting, including the wearing of PPE and social distancing. The mother’s poignancy was the hope that the time would come soon when they could be properly together as once they had been in an intimacy of touch and belonging.

Hope was there when with so many others I was moved by the hundreds of stories which flooded Twitter and Facebook on Wednesday during Care Home Day as folks took time to share stories of amazing compassion and care; as they reminded us all that care homes are places of life and vibrancy, places where individuals are enabled to life to their fullest and when the time comes to end their days surrounded by dignity and solace. There was a real sense on Wednesday of a hope that sometime soon we will return to something like normal and that sounds of laughter and song, of banter and memory will fill the silence that has enveloped so many care homes. But in doing so without forgetting the pain and sadness of the last few months and with a desire to hold in fragile memory those who have been lost.

Hope is an essential requirement to enable all of us to find the energy to deal with challenge, whether professional or personal. I recognise that there are countless thousands who need to believe that there is hope. I know that too many have lost their jobs and their sense of self and personal worth as a result of this pandemic. I know that too many have been deeply scarred by the effects of lockdown on their mental health and wellbeing. I know that there are countless families who will never be the same because they have lost someone to the virus. I know too that there are thousands who fear for the future because they run a business or work for an organisation and are uncertain about how or when they can get back to ‘business as usual.’

So, hope is an essential commodity to enable life to flourish and for purpose to have direction.  

But and it is a big but – that hope has to be grounded in some degree of reality. Hope has to be rooted in truth and grounded in carefulness. As the poet Heaney says it is a hope that has to be worked for. So, it was with a sense of real despair I heard yesterday some of the words of Boris Johnson, the Prime Minister. I am deeply concerned that by suggesting that ‘It will all be over by Christmas’ that he is in danger of echoing the mistakes of those of a previous generation who thought that resolution and restoration would result with a quick victory over an enemy in 1914 and that all would be well by Christmas.

Covid19 will not be over by Christmas. We will live with it for many years to come. We will have to live with its pernicious ability to destroy lives and shatter love. But with discovery and ingenuity we will discover how to control and lessen its harm and how to heal those whom it hurts. But we are not there.

A false hope is a dangerous illusion because it prevents caution and fosters reckless action. Anyone who has lived through the hell of these last few months in the care home sector, who is still not able to freely see and be with loved ones, will know the huge sacrifices that have been made by so many. We risk throwing all that away, we risk the escalation of danger, should we be deluded into thinking that things are about to be sorted and solved. Hope has to be rooted in sense rather than expediency, lives matter more than anything and we cannot use them as the vehicle for populism. Hope has to be worked for.

So, I end the week with hope. It is a hope grounded in the knowledge that by safe and slow steps we are edging forward as communities and as a nation. It is a hope that we will support one another through the days ahead in a way that affirms our humanity, recognises the pain of others and upholds those who are most in need of support. It is a hope that by collective support and cautious planning rather than naïve rhetoric we will meet the challenges of the autumn and winter ahead.

For one thing I am sure of is that Covid19 has changed us all in ways which are unimaginable.

“The world is indeed full of peril, and in it there are many dark places; but still there is much that is fair, and though in all lands love is now mingled with grief, it grows perhaps the greater.” 

― J.R.R. Tolkien, The Fellowship of the Ring

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Autonomy and choice in pandemic times: the importance of empowerment in care decisions.

Recently I happened to be discussing being a parent with someone who had become a father for the first time. One of the comments I made to him was that parenting was a process of discovering that true knowledge is learning what you do not know. For despite all the books and videos you can read or watch nothing can prepare you for the real experience. It is a journey of self-discovery; a process of un-learning all the suppositions and thoughts you initially felt were true and allowing yourself to be changed for ever. There is a real truth in the sense that the best parents are those who have been willing to be taught by their children. From the first moment when you return from the hospital into the fearful state of total responsibility for a fragile life all the way through to the faltering first steps, through toddler tantrums and on to teenage expressiveness parenting is something that not only leaves an indelible mark but changes you forever. It is full of ebbs and flows, shallow pools and torrid currents.

As any parent will probably attest one of the hardest lessons you learn is the art of letting go. From the desire to protect and guard with suffocating love you have to learn to let go, trust, and empower individuality. Whether it is allowing a toddler to climb beyond your own risk analysis or allowing someone to miscalculate in fledgling relationships – it seems a constant balance between the desire to intervene and protect and the realisation that autonomy and individuality can never flourish in the shadow of a dominant parent.

Autonomy is a concept that has been much in my thought in the last week. I recognise that autonomy is critically important in the nurturing of a child through its early life. The skill of enabling a child to develop so that it is able to make its own decisions, develop its own moral and ethical framework for action, and to do so with an emotional maturity is perhaps the greatest gift of parenting. Without it we would create a society devoid of creativity, ingenuity, expressiveness and soul.

The autonomous child learns to understand that they that they have control over themselves and the choices that they make. That their actions and interactions have consequence and purpose, effect and outcome. Autonomy is developing the abilities to think for yourself rather than merely replicate the views, opinions and thoughts of others, especially your parents! It is the sense of control, agency and responsibility critical to making us into human beings capable of being truly who we are and in relationship with others.

Sadly, there are a whole host of factors that can limit autonomy and prevent the development of the essential characteristics of self-worth, self-regard and self-love. The things that limit our personal autonomy can be the barriers that society places in front of us in terms of our socio-economic status, its disabalism or racism or classism. But equally our autonomy can be restricted by impairments of body or mind that may constrain us.

Those who work in social care know that the essence of good care is enabling an individual to exercise the fullest possible autonomy. It is 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. Good care is about removing or limiting the barriers that prevent human autonomy and control.  It is about enabling an individual to be as independent as possible, it is about reducing dependency rather than fostering it.

That is why our legislation in Scotland recognises that whilst there are indeed some who may have limits on their mental capacity there can be no automatic presumption of incapacity rather there is always a presumption of capacity. I have the right to make decisions about my own person, body and life unless under very strict criteria it is deemed I no longer possess the mental capacity to do so. But even then there is an awareness that capacity can fluctuate and be episodic so there is a duty on those who care for me to continually seek to enable me to exercise autonomy, choice and control.

Without a sense of autonomy, we would feel continually under the control and agency of others; we would not be able to make decisions about what matters to us in our lives. So, in social care the fostering of autonomy is central and critical.

As a whole society we have an obligation to respect the autonomy of other persons, which put simply is to respect the decisions made by other people concerning their own lives. This is what lies at the heart of human dignity, the ability to allow others to grow  into the fullest expression of their own humanity and individuality, without us forcing them to be someone they are not, to do something they do not want to do. All of which is boundaried by the laws and obligations of the whole community and society.

That last point is important because of course no one of us is wholly autonomous. We cannot just do what we want without appreciation that we live in relationship one with the other in a society. When we make decisions and act on those decisions, our decisions and actions are at least partly autonomous.

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.

Autonomy is regarded as a fundamental ethical principle. Put simply it is the acknowledgment that patients who have decision-making capacity have the right to make decisions regarding their care, even when their decisions contradict their clinicians’ recommendations. Autonomy is the principle which underlies the requirement to seek the consent or informed agreement of a patient before any investigation or treatment takes place.

So, what about autonomy in the time of a pandemic?

It is because we are part of a wider community, society or nation that during a period of national emergency that as autonomous individuals we are willing to accept the instruction and laws of our Government in order to protect both ourselves and others. We have seen this in the remarkably high level of compliance during lockdown and in the initial stages of removing ourselves from lockdown.  Managing public behaviours and expectations has been critical. A citizenship without a sense of consensual autonomy would never have supported the restrictive measures which we have all had to live under in the last few months.

But the reason behind me thinking about autonomy this week is the number of people who have written and spoken to me about the extent to which, perhaps especially as we come out of lockdown, we have failed to give adequate respect and cognisance to the autonomy and rights of older people.

Jane wrote to me to say, “I have the right to make decisions over my own life.”  She is in her 90s and in a care home which has been affected by Covid19 and because of that even outdoor visiting is not happening because of the requirement to be virus free for 28 days.  Jane has mild dementia and is in a residential not a nursing home. She is there because of issues to do with mobility and frailty. She has full cognitive ability and mental capacity, yet she feels that she has no control, diminished rights and no autonomy. She feels in her own words “as if I am being treated like a child.”

Her letter was heart-felt and I have to be honest in saying I find it hard to answer her because I think she is right. I do think that we have now reached a state in our pandemic response where we are in danger of limiting the human rights and personal autonomy of individuals ‘solely’ on the basis of where they happen to live or on the basis of their age.

The loss of autonomy and individual agency brings about profound psychological impacts on an individual. This sense of not having control and choice robs us of our identity and purposeless, our individuality and freedom.

Atul Gawande in his brilliant book ‘Being Mortal’ argued that this lack of respect for older people and their exercising of individual autonomy can ultimately mean that as a society we can conclude that prolonging longevity is more important than quality of life. We are so preoccupied with minimising risks in the way our elderly are cared for that we strip them of their autonomy  and control (even with reduced capacity) by treating them like infants unable to make decisions and take actions for their lives.  

Studies across the world are recognising the emotional and psychological toll which lockdown has brought to care home residents, including the loss of interaction with family members. I am increasingly convinced that we need to urgently look at the way in which we have approached the need to balance infection control and prevention and the quality of life of those in our care homes. This in essence has to do with autonomy.

When someone enters a care home regardless of whether or not they have a life-limiting condition such as dementia they do not lose autonomy, they have not left their rights to choice, control and individual agency at the front door. Yes, we have as a whole society  consented to restrict ourselves as part of our belonging to that society, but now that we are removing these restrictions we cannot treat one group less favourably than others simply in the name of infection prevention. This is a subtle and hard balance, but I am not sure we are getting it right.

Moving forward it will be critical that as a whole society and as a care system that we find better ways of ensuring that individuals in care homes and indeed individuals who are dependent upon support and care in our communities have a better mechanism and means to influence decisions taken on their behalf. Part of autonomy is the right to exercise voice and influence, the need to be heard and have your distinct needs addressed.

Any future ‘lockdowns’ will risk a failure of compliance if there is not a greater sense of engagement with and involvement of those affected by measures ostensibly designed to protect but which by default rather than design may actually lead to greater harm. We need to empower people to exercise their autonomy in decisions made about their care most especially when the extent of restrictions have such a dramatic impact on their health, well-being, and autonomy as human beings. We have to stop treating care home residents as children and restore their adult autonomy.

“A few conclusions become clear when we understand this: that our most cruel failure in how we treat the sick and the aged is the failure to recognize that they have priorities beyond merely being safe and living longer; that the chance to shape one’s story is essential to sustaining meaning in life; that we have the opportunity to refashion our institutions, our culture, and our conversations in ways that transform the possibilities for the last chapters of everyone’s lives.” 

Atul Gawande, Being Mortal: Medicine and What Matters in the End

 

Donald Macaskill

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We need a National Day of Mourning and Remembrance – a personal reflection

Today is the 4th July and memories of a few years ago when I was in Boston where events changed the history of the United States of America live on in my mind. It is a special day for many citizens of the United States and later today I will no doubt chat to American family as they celebrate the 4th. Closer to home it is a day which in the past week has built in the public consciousness with a growing clamour in England around the opening of pubs! And that’s been hard for so many.

As I have mentioned over the last few months I receive a lot of correspondence from folks who have kept in touch with me during the pandemic. One of those wrote to me this week about how hard it has been reading the newspapers and seeing the news on TV in the build-up to what has become this self-styled ‘Independence Day’ and ‘Super Saturday.’ For her it is a day of real insensitivity because like countless thousands she is one of those who have lost her husband to Covid19, her husband being one of the people who died as a result of the virus in a care home.

She is not alone. Many have spoken, written or messaged me from their places of hurt. They have found it hard to reconcile a return to ‘normal’ with the loss and emptiness which is a constant ache in their waking moments and restless nights. They have spoken of the way in which they feel as if they have been put to the side in their grieving as the world rushes by in its race back to normality. They have spoken about becoming the invisible grieving, those whose story is an uncomfortable and constant reminder of the vicious pain and raw absence that this virus has and is causing.

Mourning is an essential part of the rhythm of life – it’s moves are individual and it’s actions are determined by our own character. For some there is a desire to be busy and active, using routine and familiarity to contain our lostness;  for others a need to withdraw and hold pain close; for yet others there is consolation and comfort in the presence of family and friends. But the problem has been that we have been prevented or blocked in so much of the ways in which we traditionally mourn and grieve. Mourning has become unnatural and painfully hard during the pandemic with all the restrictions on funerals, on being together, or on simply being free to wander in our hurt.

As things begin to ease through lockdown then it will undoubtedly become easier for people to reconnect and nurture their own grieving. But I think we all of us have to recognise that those who have lost someone to Covid19 need to be supported and upheld by the wider community. There is something painfully distinctive about losing someone in and to the pandemic and we need to acknowledge that and take action to address these issues. This in part has started already through the resourcing of more focussed grief and bereavement support. But increasingly I feel that this support and recognition needs to be broader and wider.

The messages I have been getting are from people who feel as if society is in danger of creating a stigma around Covid19 and especially around dying from Covid19. We saw a similar trend after the Spanish Flu in the 1920s. They speak of the bereaved unable or unwilling to say to others that their relative has died from the virus. I very much hope that those are a minority, but I also fear that we need to recognise better  the reality of these feelings than we are doing.

Whether you have been bereaved because of Covid19 or someone has died during the lockdown period I believe that there needs to be not solely a restoration of personal grieving support but that we now need to do something at a community and national level. My concern is that if we do not do so there will be far too many with unresolved and blocked grieving which will only serve to cause hurt and harbour pain into the future.

So today I am calling for a National Day of Mourning and Remembrance  for all those impacted by Covid19 in Scotland. I am asking all Members of the Scottish Parliament to agree in principle to the idea of such a day.

  • A day to mourn all those who have died in care homes, in hospital and in community
  • A day to mourn all those who have died during Lockdown for whom we have been unable to grieve and remember as we might have done
  • A day to remember all those who have worked tirelessly in the care of others sharing compassion, giving professionalism and sacrificial service.
  • A day to remember all those who have had their lives changed and turned upside down by this virus.

I am not naming a day, but I think we need to as a community identify the need to have such a day in the future when we can be together to focus on those we need to remember. We need to create a point in the horizon ahead to which those who are lost in their grief can find the energy to pull themselves toward in the hope that society will hear their story, will listen to their loss and will be silent in remembrance.

We need to have a day when in silence and in action, in country and in city, in streets and in homes people have the opportunity to pause and reflect for from such comes healing and renewal both individually and as a community.

Above the din and noise of rushing back to a normal future we must give space and place for people to remember, to picture their loved ones and to cradle a moment in time which is theirs to grieve. We owe them no less.

After the silence of loss, the memories come, the tears fall, the sadness echoes and  mourning and remembrance sounds.

Donald Macaskill

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Let care flourish… reflections on primary and social care

I read probably more than my fair share of reports and official research and if truth be told I often struggle to get beyond the Executive Summary for most of them and probably hold very few in my memory. There are exceptions and one was ‘Let Glasgow Flourish’ a report in 2006 describing the health inequalities of the city of Glasgow and what was needed to address these. Written by Prof Phil Hanlon and colleagues it was an articulate, impassioned, reasoned and convincing argument of what needed to be done to address that city’s health and social care woes. Sadly, a lot of what was called for is still resonating as an echo.

As a former citizen of Glasgow, I have always treasured the motto of the city ‘Let Glasgow flourish ….’ The idea of flourishing resonates with the sense of springing into life, of growth and renewal, of resurgence and success. Its organic positivity is at the heart of all human health and care. Clinical and social care have a shared desire to see the individual grow and develop, become whole and achieve potential; in other words, to flourish to the fullness of their humanity. Something of this is captured by the idea of thriving which I know is now much beloved by public health thinkers. But there is something about flourishing that appeals to this west coaster!

The concept of flourishing may seem a strange one to reflect upon as we are struggling to still deal with a pandemic which has destroyed so much in its wake, and has brought havoc and despair, loss and death to tens of thousands. But I think it is important in the days, weeks and months ahead to start reflecting on what it is that will help individuals, communities and organisations start to flourish again.

This week we received the thankful news that slowly and safety we will see the start of care homes enabling family members to visit their relatives. The abnormal exclusion of contact and presence is coming to an end boundaried by the need to protect and keep safe. But alongside this is the urgent requirement to support residents and staff to start to flourish again. Work is ongoing and has a new urgency to address the very real deterioration and decline that has occurred as a result of measures designed to protect, through self-isolation and social distancing during lockdown. This will not be easy either on a personal level or for organisations, but we must give as much energy to coming out of lockdown as we have to protecting it. The role of our Allied Health professionals, physiotherapists, podiatrists, nutritionists, speech and language therapists, optometrists and so many more will be critical and central as we seek to let care and people flourish again. I have often heard folks say that people got a new lease of life when they went into a care home and were cared for, met others and felt as if they belonged. We all have a lot of work to do to restore that sense of joy at the heart of our care homes and to let them flourish once again.

But care also needs to flourish by restoring the well-being of nursing and care staff who are understandably spent and exhausted by the struggles and demands of the days and weeks which have passed. Without the traditional routes for relaxation and renewal offered by a flight to the sun, we will need all of us to support staff and frontline nurses and carers to be able to deal with the emotional and physical challenges of the last months.

On a wider front we have a real opportunity to let care flourish. Yesterday I took part in a webinar with hundreds of primary care colleagues which was both a reflection of the lessons learned during the pandemic and the real positive work that has been underway. I have written elsewhere that over time we have fragmented the critical interface of how primary care and social care relates. If there is one thing we need to do better after Covid it is to ensure that we get this right. Part of that is the painful acceptance that we did not get it right all the time, in every place and in every way,  at the start of the pandemic to the extent to which social care staff have voiced a sense of abandonment. There is little point dwelling on this – but we have to learn from it and need to move forward to recognise that where we got it right it was of immense benefit to resident and professional alike. The tremendous examples of GPs, palliative and end of life practitioners, pharmacy colleagues, community nurses working alongside social care nurses and social care staff should be the ultimate memory that changes things in the future.

I believe we need to develop a real partnership of mutual respect, professional understanding and reciprocal awareness that wraps primary and secondary care around our care homes and our homecare services. In some parts of Scotland, the pandemic has helped us to walk in each other’s shoes for the first time and has helped to create real mutuality and respect. We need to build on this systemically, strategically and with sensitivity. These conversations and pieces of mutual work will be essential to enable care to flourish.

To flourish is to have a sense of positive renewal. Now is the time not just to open the gardens of care homes to visitors but for the community to take care homes into their centre; for us to create a system where all citizens, regardless of need or location, of residence or age, of disease or condition, receive equal treatment and care which is built around the needs of the person, enhances the humanity of the individual, and enables them to flourish, and our society to become renewed. We will do that by binding secondary, primary and social care together not so tightly that the distinctiveness of each is diminished, but in a way that each has voice, contribution and creative ability to grow and change.

So, let care flourish.

Donald Macaskill

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Being the midwives of care in a pandemic: reflections on authentic leadership

The history of any battle is often the narrative of those who are victorious and those who are the powerful. As a result, most of the history which has been written and taught has been at the cost of remembering and recognising those who have really led the struggle and achieved the victory.

The remembrance and story of Coronavirus in Scotland in the last few months should be one about leadership – but not the leadership of the loud and visible, not the narrative of the strident and self-advocating, not even with respect about the decisions of politicians and scientists, but of those who have rolled up their sleeves to do the work of care, those who have sat with the dying and those who have spent themselves in the giving of life and love to stranger and friend alike. They have been the real leaders of this hour.

There has been true and remarkable leadership during Covid19 in Scotland and in my blog this week I want to reflect on that leadership both to recognise it and treasure it.

A long time ago I used to teach theories of leadership in a vain and I fear forlorn attempt to try to teach people about how to better manage group dynamics and inter-personal relationships. I have forgotten most of what I taught – as doubtless my listeners have – but one or two things have stuck with me. One was the concept of maieutic leadership.

Maieutic comes from “maieutikos,” the Greek word for “of midwifery.” It is a style of leadership which strikes me as entirely apposite for the current times.

A midwife is someone who is immensely important during a birth. S/he is someone who provides support, comfort and assurance. Through encouraging word, by physical presence of a holding hand or wept brow, she enables the mother to bring her baby to birth. Despite all the advances in the technology of birthing it is still this essential human accompanying that is the midwife’s greatest gift and capacity. It is not she who does the work, but she who enables life to happen. She is present at all times, like the support of a bridge that enables you to cross from one side of a river to the other, she is the enabler of fulfilment, the supporter of new beginnings, but she leaves the work and autonomy to the individual mother.

A maieutic leader is someone who is such an enabler. She is present to provide structure and support. The task to be achieved is not one that she as a leader needs to do for personal fulfilment but she creates the conditions, through word, action and presence to enable it to happen. Her knowledge rests quietly, her creativity sits silently, her intervention only necessary if it is needed, but throughout she gives assurance by presence and skill.

Who have been the leaders in these past few months?

The women and men who get up every day and leave their families to go to a care home or to work in the homes of others during this pandemic have surely been the real leaders of these times. They may not recognise themselves as such, they may indeed be uncomfortable both with the concept and the recognition, but it is true, nevertheless. I hope we have all of us come to a better sense of appreciation of the human skills, technical abilities and personal humanity of the thousands who work in social care. Before all this they were described as ‘low-skilled’. This demeans their abilities and capacities and it equates knowledge with that which is possessed through academia alone, rather than affirming the emotional intelligence and human capacity of thousands. The work of care is not easy and should not be romanticised. It is raw, dirty, physical and often upsetting. But these women and men have been in the forefront of the struggle against the pernicious virus we have all faced. That is true leadership, often working autonomously, beyond personal energy and frequently without appropriate recognition. They deserve to be known as the true frontline leaders against Covid19.

There is another group of people whose story might often be forgotten, and they are the managers and supervisors of our health and care services. This last week I received messages from quite a few managers which made me aware of the sheer exhaustion these individuals have been working under, especially in care homes. They have been there from the beginning. At the start they dealt with the upset of starting lockdown, they have struggled with the issues of PPE, of infection control, of testing, of staff absence. They have met head on the need to reassure, encourage and enable others despite all the challenges including in many instances the real grief of dealing with multiple deaths. They have worked long hours with colleagues to keep morale up and to ensure that despite the inhumanity of what was expected, that residents were kept positive and as healthy as they could be. They have dealt with the increasing and at times overwhelming demands put upon them by the system through scrutiny, from constant reporting and increased paperwork, from multiple sets of guidance and new requirements. In recent days they have had to manage the very real desire and pain of families to reconnect and to start the preparations for the restoration of visits and contact. These women and men have been amazing and deserve to be seen as leaders against Covid19.

And my last group of people who have been leaders at this time and who might be too easily forgotten are the residents in care homes and people living in their own home, the families and relatives of all who have had to be isolated and sheltered. This has been hell on earth for so many because no matter how we dress it up the response to the virus has effectively meant that people have been shut away from those they love the most. This is changing for many outside our care homes, but the threat and prevalence of the virus has still not led to the decision to formally open up visiting. Every day I speak to someone or read messages from someone who is enduring the agony of separation and becoming more and more frightened about what they might find when they see their relative again.  This is achingly hard but the strength of character and resolve, the determination of those families to see change which is safe and speedy, the advocacy of family to uphold the human rights and dignity of their loved ones at a time when policy appears cold and disinterested in the personal, is and has been an act of courageous leadership. This is not an easy time and it has and is taking astonishing strength of resolve and character for residents and families to keep going. I only hope that the end of that particular pain is coming very close. This has been real leadership.

So the true leaders in the fight against coronavirus are not those keyboard warriors who use words to show superiority or to prove a point; they are not those who seek personal advance or popular esteem; not those who score political points but are distant from decision-making; not those who point fingers at those who really are out there fighting. The true leaders over the last few weeks are the same folks who are still today fighting the presence of this virus. They are the frontline workers who are bringing compassion and solace, comfort and assurance, doing their hardest despite all that is hurtful and hard. They are the managers and supervisors  encouraging yet more from a drained group of staff and showing their own willingness to muck in and show the way. They are the families and residents who are pulling us all to that point in the horizon of hope which we want to reach soon.

I hope that when the story of this virus is told in months and years to come that we will remember the maieutic leadership of those who care and are cared for. It has been and is leadership of true authenticity, nothing false but completely real. Not loud and brash, but strong and tender; not talking but doing, not draining but affirming.

I hope we can shape leadership in the rest of society and in all our relationships. It will be a future worth living in and working towards if it is one where those who uphold others, who wipe tears away in aloneness, who use a word of quiet to encourage, an arm to uphold a weakened spirit, where their maieutic skills become the norm.

To all who lead today. Thank you

Donald Macaskill 

 

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The need for a Human Rights Inquiry: coronavirus and older people

Yesterday saw the publication of sad statistics illustrating the level of hatred in Scotland. We read in the Crown Office data that all categories of hate crime in Scotland are increasing. Racial hatred is still the most common with over 3,038 charges in 2019-20. There was also an increase of 24% on the previous 12 months for incidents aggravated by religious hatred and sexual orientation. Disability aggravated charges showed an increase of 29%. These are shameful statistics. They paint a depressing picture of a society increasingly comfortable with intolerance, at home with bigotry and welcoming of discrimination.

In April the Scottish Government launched a Bill which includes the consideration of extending hate legislation to include age. I have already stated elsewhere how critically important it is that age receives equal protection.

Whether we accept it or not age discrimination is part and parcel of Scottish society. It is the wallpaper against which so much social discourse takes place and its acceptance has become almost a cultural norm whether through being the source of comedic jokes or the automatic assumption that older people’s services should be resourced less than others.

I am reminded of all this as I note that on Tuesday 15th June we will recognise World Elder Abuse Day. This annual United Nations observance day highlights the extent to which cultural, systemic and political abuse against older people is an increasing and serious problem across the world and has a profound impact on the health and wellbeing of older people.  As people grow older they become more at risk and vulnerable to abuse (and sadly most of this is at the hands of family members) because they are unable to defend themselves or to get help as a result of infirmity and fear. But the abuse of the old is also at the hands of the systems and policies, the governments and practices under which they live. This year there is a particular focus on the human rights of older people.

Reflecting on harms against older people, whether consciously as a result of hatred or ‘collaterally’ as a result of pervasive age discrimination, is an important challenge during this Covbid19 pandemic.

I have to confess to a personal sense of disappointment at the extent to which there has been relatively little consideration of the human rights of older people in our collective national, political and media responses to Coronavirus. There have been exceptions. The Equality and Human Rights Commission have suggested the need for an Inquiry into the discharge policies into care homes in the UK and the Welsh Older People’s Commissioner has been critical of a whole range of potential human rights abuses around testing and support for care homes. In Scotland, the Scottish Human Rights Commission has been vocal in its critique of the Chief Medical Officer’s early Ethical Framework for Decision Making.

So, what does it look like if we hold up a human rights mirror to what has happened over the last few months and what is now occurring?

The perniciousness of this virus is the invisible way in which it has targeted our older citizens. It is they who in Scotland have borne the brunt of the trauma and death with over 76% of those dying in Scotland, regardless of location, being aged 75 and older. It is our most frail and vulnerable, the population of our care homes and mainly those with dementia, who have been especially hit by the disease and who will doubtless continue to be most vulnerable as the pandemic continues. Have we upheld their human rights?

I have always thought that our international human rights Charters and Conventions are a barometer of the way in which we can judge ourselves as a society. Part of the reason for my enthusiasm is that human rights practice and jurisprudence appreciates that we do not live in a black and white world, but that any decision and action is usually the result of layers of motives and consideration, policy and practice. The world is complex and responding to an issue in one way means that your actions may result in many unintended consequences. The language of human rights is about proportionality – is what you are intending to do a reasonable and proportionate action or is it too much or too little. Human rights are about recognising that some of our rights have to be limited or curtailed – within reason – in order for the greater aim to be achieved. Human rights are about collectively agreeing what are the legitimate aims of any action and whether what you plan to do is a reasonable action in achieving those agreed objectives or whether it is misplaced and misguided.

Although there are a good number of Articles within our current Human Rights legal protections, perhaps the ones that most resonate in the current pandemic are

Article 2 – the right to life; article 3 – the right not to be treated in a manner which is inhumane, degrading and equivalent to torture, and Article 8 the right to family life, privacy and association, to psychological and physical integrity – all my paraphrasing I should add.

So, against these three core human rights Articles in our response to Coronavirus have we in Scotland acted appropriately and proportionately to achieve the legitimate aim of preserving life or have we mis-stepped?

The right to life is a human right which no Government or body can seek to limit. In the pandemic it was the number one priority – to save as many lives as possible and protect as many people as possible. Clearly we need to consider whether actions which sought to prioritise the acute NHS were undertaken at the cost of the social care sector. A hard question but a necessary one especially when the global evidence showed that social care supports especially care homes were the primary weakness in the support of the old and most vulnerable. Were our actions in Scotland in discharging patients from hospital into care homes proportionate and reasonable or risky and utilitarian? Does the data show that there was equal opportunity to preserve life given to residents in care homes through their access to acute treatment and care or was there a presumptive bias against admitting residents into hospitals? Is the continuous lockdown of older people in isolation within care homes enabling of the fulfilment of the right to life or does it put at risk that right through psychological and physiological harms being given less attention than the desire for infection control and prevention?

Article 3 is another human rights article against which no State or body can seek to take actions which limits the right not to be treated in a manner which is inhumane and degrading. How have we done on this front? Is it justifiable to confine one whole section of the population in a manner which is more restrictive than another, ostensibly for their protection but which whilst reasonable for a defined early period of time, becomes disproportionate, unreasonable and potentially inhumane when we are talking about 14 weeks of such restriction?

Article 8 is about the protection of interaction and relationship, the right to privacy and family life, to association and belonging. Clearly we have all of us as citizens had to endure the restriction of our normal engagement with family and friends. Such restrictions have been judged to have been appropriate in order to achieve the legitimate aim of protection against the virus and the devastating impacts that failing to protect would have resulted in. But have we treated some in a manner which is disproportionate and unreasonable? Are we now at risk of failing our older citizens and their human rights by continuing to restrict their ability to relate and interact, to have visitors and company? Is it epidemiologically reasonable to have calculated the risk to be so high that we have failed to recognise the wastage of life as a result of loss of relationship and encounter? Have the legitimate initial aims of Infection Prevention and Control now become imbalanced and there is as I have contended a greater risk which is loss of life through physiological, emotional and psychological deterioration and loss? Is the removing of autonomy, individual choice and ability to act, associate and have discourse a restriction too far? Have we presumptively failed individual rights by collectively treating all residents in a care home or all individuals shielding in their own home or a care home as equivalent to the other?

I think there are a significant number of human rights questions which need to be aired and heard in any consideration of the response to the pandemic. There has been much chatter and talk about Inquiries and reviews of the actions of both the UK and Scottish Government, and of health and care providers, in response to the pandemic. All of these will happen. But I also hope that there will be a robust and serious human rights Inquiry into the pandemic and specifically on the experience of older people at this time, in care homes and in the community.

Part of such a review could utilise the human rights PANEL model. Has there been real Participation and involvement of older people in decisions made about and for them? Have actions been sufficient to hold Accountable all those responsible for the care and support of older citizens? Have actions of intervention during Covid19 been Non-discrimination in nature or did they serve to perpetuate and further embed discrimination?  Did our response to Covid19 Empower individuals to achieve and retain their human rights or did we disempower and limit the ability of citizens to fulfil their human rights? Lastly did we have at all times undertake appropriate actions that upheld human rights obligations and Law?

We delude ourselves as a nation and as individual citizens if we fail to recognise that we live in an age discriminatory society in the UK. This was true before Covid19 and is unlikely to have changed in our response to the pandemic. Only witness some of the narrative we have seen this week which has been desperate to re-hash the views that Coronavirus was after all only something which affects ‘older people’ and that a ‘Boomer harvest’ was not entirely inappropriate.

We owe it to all those who have suffered and died from the pandemic to use the maturity of a human rights analysis to understand whether our actions, for the best motivations, were ones which we should repeat or ones from which we require to repent.

Donald Macaskill