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

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

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 

This has been Dementia Awareness Week and it has been another unusual week in lockdown. Normally every year I would have been attending events, conferences or meetings learning and exploring with others about the nature of Alzheimer’s Disease. For countless thousands it is also a week when we remember those in our own families who have died from dementia.  It is a time when I picture and recall my own grand-mother and mother’s journeys into the lostness of dementia.

This year, however, faced with Covid19 I have spent days thinking and working on practical steps so that we might be able to restore visiting into our care homes to re-establish connection and belonging. But as I have done so I have grown even more acutely aware and concerned about the impact that lockdown is having upon the psychological and physiological health of care home residents as well as people in the community who are living with dementia.

Like many others over the last few weeks I have been moved to a real depth of awakened understanding by the reporting of Lewis Goodall on BBC Newsnight. On Thursday night his input was on the effect of Covid19 on people living with dementia. He reflected on the disproportionate impact of isolation on people with dementia and informed his viewers that  in England 42% of Covid deaths in care homes were from those living with dementia. I suspect in Scotland the figure is significantly higher given that 90% plus of people in Scottish care homes have dementia. He also suggested that many were not dying from Covid19 but from the effects of isolation.

At the start of the pandemic as care homes went into lockdown the advice from Government and public health experts was that individual residents should be confined to their own rooms and that communal areas and activities should be ended or reduced. Normal activities such as socialising and eating together should be halted and that social distancing should be introduced. That is now 12 weeks ago.

So, for 12 long and painful weeks thousands of individuals who are not aware of what is happening and who do not understand why family faces have disappeared have had their lives turned upside down. Critical routines which give a pattern of familiarity and comfort have been upended. Activities to stimulate and keep both physical and mental capacity going have been reduced or have simply disappeared as staff have struggled to deal with real desperate clinical care needs of others. Perhaps most importantly the affirmation of touch and stroke, of smile and hugs, have not been offered or have been hidden behind a scary PPE mask. Staff have struggled with those whose dementia meant they would not remain in their rooms, for whom masks, and shields have been simply terrifying, whose behaviour has become challenging in all the confusion.

I simply cannot conceive what life must feel like to someone with dementia in a care home today. It must surely be terrifying. I cannot imagine how disempowered and frustrated care staff are feeling right now. A nurse on the frontline this week described it to me as “seeing people silently screaming inside and not being able to do what you want to do – to touch and to soothe.”

I know the why, the importance of preventing infection spread and the imperative of protection, but how long can we continue to isolate individuals in the way that we are now doing? This enforced confinement is destroying and damaging just as many lives as the virus is. People are losing their physical body mass; they are losing the physical and mental abilities which they once had, and they are at real risk of deep depression. We urgently need to now find a better balance between infection control and the enabling of life. We need to think about how we can use volunteers and supplementary staffing to allow people the freedom of protected space and place. We have rightly stressed the importance of scrutiny and inspection on infection control practice, but have we given as much attention to the quality of life that is now that of those with dementia in our care homes? For too many there is existence and safety, but life and purpose is disappearing.

Kate Lee, CEO of the Alzheimer Society in the Newsnight programme said that “if this was our children being affected we would be screaming from the rooftops.” Sadly, as she also stated this is further evidence of the way we treat people differentially because of their age or because they have dementia and not some other condition such as cancer.

On this Dementia Awareness Week it is the urgent imperative on all of us involved in the care of citizens to search out new ways so that we can open the doors of confinement, so that we can begin to restore relationship and interaction; start to again give meaning and purpose, fulfilment and enjoyment to those living with dementia.

We have to find better ways to protect than we currently have in practice. There is little purpose in having infection free environments if the process of achieving them is the effective loss of life and meaning. This is the challenge for us all. If we do not then we have lost our own sense of direction as a society. Lockdown in our care homes is  harming too many.

Donald Macaskill 

In early March at the beginning of the Covid19 pandemic I wrote an opinion piece for The National which I concluded with the words:

‘Coronavirus will be a test not just of the infrastructures of health and care, of business and commerce, it will be a test which will determine the nature of our nation. Will we be a Scotland that cares for the old or will our compassion be limited by discrimination?’

That piece was written on the back of statements which suggested that we did not need to worry about the disease because it would only kill the old. Both social media and some wider media comment at the time was full of comments which articulated a view that Coronavirus was a ‘boomer harvest’, one of the many sickening references to the baby-boomer generation. The public health message across the United Kingdom at the time was ‘wash your hands and catch your cough.’

Twelve weeks on the truth is that this pernicious virus has indeed taken a devastating toll of the older age population with nearly three quarters of all deaths in Scotland and worldwide amongst those over the age of 75. It is also the sad truth that those who were most vulnerable as a result of age, frailty, dementia and other conditions, and who have been residents in our care homes, have been the hardest hit. This is the story of this pandemic as it has crossed the face of the world, its hurt has taken away from us our memory and soul, its scars have left a mark which will take long to heal.

So has our response been one of inclusiveness, of valuing all, of non-discrimination or has the pervasiveness of age discrimination and bias, subjects I have often written about, been evidenced in our pandemic response as a Scottish society, as a political, health and care system?

I will leave you to make your own mind up on that. But …

In recognising the evidence, we were getting from China in January, South Korea and Singapore, Italy and Spain in February, France and Germany in March, did we sufficiently protect our older citizens? Did we ‘contain’ for too long out of a desire to ‘bring people with us’ and lessen harm to the economy which meant that the entry into lockdown made our older population all the more vulnerable?

In noting the relative success of a strict test, trace and isolate model in some parts of the world with the continual echo of the World Health Organisation stating ‘Test, test, test’ to anyone who would listen,  did we as part of a Four Nation collective response abandon that safeguard too early?

In our desire to prevent our acute NHS system from being over-run did we so encourage the discharge of hundreds of older people from hospitals into the community and care homes where they were to be at greater risk or was staying in hospital an even higher threat?

In our requirement to protect the NHS at all costs did we fail to recognise the importance of ensuring that social care providers and their staff were to be an equal frontline so that requisitioning PPE supplies for the NHS would make their battle all the harder to fight?

In our desire to be prepared for an overflow did the indiscriminate phone-calls and letters about the importance of ‘Do Not Resuscitate’ orders serve to put older and vulnerable citizens into a state of real fear, leaving them with the feeling that they were of lesser worth or value?

In our requirement to support frontline clinicians to make hard treatment decisions if we should face resource constraints and run out of equipment did our ethical framework not give the impression that age would be used as a primary proxy for decision-making?

In our desire to reduce unnecessary admissions into hospitals in order to prevent the anticipated surge did our official Guidance give older people in care homes the impression that they were not to be admitted but were to be cared for and die in situ?

In our withdrawal of packages of care and support from some of the most elderly in our communities did we not place them at even greater harm not just from the virus but from dying alone, without contact, potentially hungry and disconnected?

I have my own views on each of the above but one thing I am clear of is that the attitudes of age discrimination which existed in Scotland before this pandemic have not been wiped away with its pain rather they have been magnified and lit large.

For years I have written about the way in which we have failed to value our older citizens in many disparate ways. But I see very little point in recounting these. Rather as we leave lockdown we have an opportunity to leave behind systems, models and approaches which have not worked and have failed our older citizens. We have the opportunity to cast off attitudes and behaviours which have served only to limit our humanity by dressing ourselves up into a pretence of equality.

Social care is still fighting this virus. It has not gone away and there is much more still to be done. But this is also a time for re-formation and reflection, renewal and re-orientation.

We have the opportunity to finally have honest discussions about how we will value and celebrate the reality that we have one of the fastest ageing populations in Europe. Faced with the gift of longevity and a growing life expectancy, how are we to enable those living longer even with conditions such as dementia to live until the end in the fullest and richest way possible?

We have the chance to change the way in which we value social care and those who work in it. It is not acceptable that we consider that being paid the minimum or living wage should somehow be the summit of our collective aspiration. It is not acceptable that there should be such disparity in what the State funds and what we expect citizens to pay. It is not acceptable that if you are struck down by cancer your care is largely paid for but if you live with dementia you and your family end up being charged.

We have the chance to take some really hard decisions about how as a society we pay for the potential of age which is in our midst. We need to have these grown up national discussions which we have all shied away from especially the closer we get to an election season.

We have the chance to challenge the gender segregation which equates care as being a woman’s work and thus accords it less status where the reality is that care should be the challenge of all, for all and by all. A society that does not care is not a community but a collective assortment of individual egos.

We have the chance to see those who are old as vital contributive individuals. Life does not end until you take your final breath. Let us stop viewing our humanity as if it has a use by date. Let us seriously work at inter-generational levels so that we harvest the knowledge, creativity, skill and ingenuity of all our citizens.

We have the chance to create a system which enables real choice rather than blanket solutions, gives respect and autonomy to our citizens and which takes seriously the human rights and dignity of everyone.

There will be many legacies left by this pandemic. Tragically for many of us there has been raw pain and loss at the heart of the last few weeks. But we owe it to everyone today and tomorrow to make sure that we seize the opportunities we have been given and to really build a social care system and a Scottish society where all are valued and included regardless of chronological age. This will not be achieved by point-scoring, by political fundamentalism, by defensiveness or entrenchment, but by real collaboration, honest humility, and a shared passion that we can and must do better.

Donald Macaskill