I noticed in my calendar this morning that Monday is International Peace Day. It’s a day designed to promote peace among nations and peoples. The UN established the day and its website describes the day by stating that ‘peace is recognized as both an innate state of being, and a dynamic evolutionary process wherein constructive growth can occur and the children of this and future generations may gain hope for a better world to inherit.’

A bit wordy but in essence peace is both internal and relational. Reading the description reminded me of a phrase from the work of one of my favourites, the contemporary American novelist and short-story writer Veronica Roth, who wrote that:

“In order to have peace, we must first have trust.”

I will leave world peace to the Nobel prize winners but there is a truth in the linking of peace and trust which is inescapable. Whether in the realm of international politics, in the interactions of lovers, in the contracts of care or during a pandemic there is a profound interconnection between a sense of peace and ease and the extent to which trust is present.

But the problem is that if there cannot be peace and what comes with it without trust then there has been very little trust both before and during the pandemic in the realm of social care.

Where else would you get the extent of mistrust as in some of the contractual terms and practices between local authorities and social care providers. Explicitly what does it say of trust when electronic call monitoring systems originally designed to keep lone workers safe are used in homecare services to effectively electronically tag workers, to pay providers only for their contact time and to penalise for late arrivals or only to pay for a proportion of attendance. As one colleague put it – it is almost like saying to a nurse in a hospital you only get paid for the time you are at a patient’s bed but not your walking between them. There is little trust in the way we contract and provide care at home and housing support in Scotland. Without trust there can be no maturity of relationship.

Where else but in social care in the community would we treat workers with so little respect and maturity that we clock them in and out like some sort of Victorian factory, failing to give them autonomy and the capacity to make professional decisions? So, if they come across someone who is distressed by loneliness and simply wants company they have no capacity to sit and have a cuppa which restores. Why do we not have a system that instead of clock-watching care enables a worker to design their day around the needs of the supported person  rather than the demands of the system? Instead we have a system  of mistrust designed to drive down costs as much as possible.

This lack of trust was endemic during the last few months not least in relation to additional financial support for social care providers where in some local authorities the support and collaboration has been remarkable but in far too many the level of forensic examination of applications for financial support for things like PPE, extra staffing and additional costs, has been equivalent to trying to get money out of the Royal Mint. Without trust there can be no growth in relationship.

In all the talk in the last 24 hours about a second wave of Coronavirus I think that we need to reflect on the nature of trust both in the last few months and as we move forward. For perhaps the evidence of lack of trust and therefore absence of peace can be seen at its sharpest during some of our responses during the pandemic.

Much has been and no doubt will be written about the way in which as a society we failed to protect the most vulnerable in our care homes; the prioritisation of the NHS, confused Guidance, misuse of DNACPR forms, the absence of testing till late in the day and so on. But where a trust deficit has been perhaps seen most acutely is in the degree to which we have responded to the issue of allowing families in to see their loved ones in care homes.

This morning one of the main stories on the BBC website along with news of a second wave was from the English social care minister talking about visiting into care homes and making it very clear that all visits would require to be strictly supervised. This is all about trust. There is no trust when you have to police the love and care of family for their loved one. There is no trust when you have to have care wardens dressed in PPE to remove the privacy of individuals and disproportionally limit their rights of exchange. There is no trust when it is assumed that more harm will come from family rather than, at least for the last two weeks, the risks of a failed and broken testing regime designed to protect staff and residents alike.

It is time to start trusting rather than on the edge of a second wave to retreat back into positions which put up the walls of defensiveness. It is time for all to start to trust the professionalism and dedication of care home staff and providers rather than assume ignorance, lack of professionalism and ability. I have heard this week of one nurse manager who after 40 years of dedicated professionalism has resigned because in essence there is a lack of trust in her professionalism which has kept people safe from Covid from those who know nothing of what a care home is and does. Without trust there can be no community of care.

Trust is that most elusive and intangible of human emotions and characteristics. It is, however a fundamental for human relationship and community cohesion. It is an essential requirement for social care. Trust is diminished by lack of knowledge, by fear and the absence of relationship. It is fostered and grows by being alongside, by asking questions rather than knowing all the answers, and by taking proportionate risk.

I think as well as all the work we are doing in directly fighting the virus we also need to do the necessary work to build trust collectively as politician and commentator, carer and family, community and provider.

The psychologist Dr Andrea Bonior argued that there are some six requirements for building trust – I suspect they have a place in these days on the edge of a second wave:

1. Say what you mean and mean what you say – In the noise of conflicting priorities there is a need for clarity and clear communication. We often hear what we want to hear rather than that which is said. I hope in the weeks ahead as we face new challenge we can be clear and concise, truthful and honest.

2. Be vulnerable – Vulnerability is often used to describe that which is fragile and broken, limited and unwhole, but rather, I believe, our vulnerability should be seen as part and parcel of our humanity. It only becomes a weakness when someone uses that vulnerability for their own negative ends, it is a strength when we live through that vulnerability to be authentically who we are. So, in the days and weeks ahead let us not pretend to be who we are not, to know what we do not have the knowledge of, but rather to own our limitations and lack of certitude.

3. Remember the role of respect – Respect comes from an ability to understand the other and to see the value and essence of who they are. It is also rooted in a mature understanding of our own self. So, in facing the next few weeks I hope we can as professionals and colleagues come out from positions of defensiveness to recognise the ability in the other, the knowledge and expertise in that which we do not know, and to be honest in admitting our own frailties.

4. Give the benefit of the doubt – There are times in human relationships when we simply have to go into the unknown trusting that the other will not hurt or harm us. This is perhaps the hardest thing to do especially if there have been reasons for a lack of trust in the past. When pressure comes it is of the ultimate importance to be able to take a risk that the other will be true to their word, will adhere to what they say and walk their talk.

5. Express your feelings functionally, especially when it’s tough – it may not surprise many that there is a real emotional illiteracy in much of society and those who work in and around social care are no stranger to that lack of maturity. To hide emotions to the extent to which they overwhelm and overcome is not a sign of strength or ability but rather the reverse. One of the insights that I have gained from the last six months is that it is only by the honest display of feelings and emotions in all their raw pain and reality, that we can meet the challenges of a virus which can overwhelm and of emotions of grief and loss which can become so all consuming.

6. Take a risk  – I wrote last week about risk – but it is important to recognise that risk is not a solo activity but a mutual journey. Trusting the other that they are able to take a risk but one grounded in a mutual concern is the essence of being together in all human relationships. In facing challenges there are always moments and times when we venture into the unknown and the fearful, it is at such times and moments that we need to have the certainty that our risk-taking is upheld by the regard and support of others – we all need to know that there is someone there to have our back.

I hope as we move into the next stage of this pandemic, into days which will have their times of darkness and fear, that we seek to build the trust that gives us peace; that we work together to respect the knowledge and professionalism of the other, and that critically we work as hard as we can to continue to foster connection and contact between care home residents and the co-carers who are their families.

There will be many pressures in both community and care homes, upon our staff and families, but these will not be overcome by retreating into fear and blame, but only through trust and developing relationship. The future of social care in Scotland whether in community or care home can only be one built on trust and then perhaps we might have the peace we all seek.

Donald Macaskill

This weekly blog is a day later than normal. I spent yesterday cutting a hedge or to be more accurate doing the manual labour when my suitably qualified and certificated brother used two vicious large petrol hedge cutters! This happens about twice a year – it is a big hedge! Conditions were not ideal – a sharp wind and not so occasional showers but the job is now completed  – even the tidying! Only when I put the machines away do I realise what dangerous and risky pieces of machinery they are.

I have been thinking a lot about risk in the last couple of days. Risk is part and parcel of everyday living. There is no context which is completely risk free. The way in which we grow from children into adults usually teaches us how to manage and deal with risks, having been protected from them as children to a greater or lesser extent. We learn strategies for dealing with risk, we develop models and systems and we fashion an internal risk management system! For there is, in reality, no such thing as total safety but rather there are degrees of safety and levels of risk. Risk is therefore a given of human living and relationships.

It is also a truism that risk is highly personal. I may make judgements and undertake activities and consider them normal and safe e.g. going skiing or mountain climbing but another person may consider those to be highly risky and never to be touched.

The influencers on how we manage our approach to risk are numerous. The way we have been brought up, the extent to which we have taken risks and things have worked out well, the impact of our behaviour upon others, especially those who are important to us – all are factors which influence our approach to risk. But by in large, part of adulthood is that we develop strategies that enable us to have a healthy approach to risk and to develop an acceptance that safety is often illusory and subjective.

Life is all about risk and risk is all about relationship. As someone who worked in both child and adult protection and having trained hundreds of staff in safeguarding I have always been acutely aware of how important it is to get the management of risk right. The failure to analyse and assess, to take action, to guard and protect can be literally a matter of life and death. But equally there are dangers of over-protection and risk avoidance which can result in care and support which suffocates with kindness and which serves to limit individual autonomy and personal control.

In conversation last week with colleagues from around the United Kingdom I reflected that where we are now in our current response to Covid is all about risk management. How we manage the obvious risks around us and the decisions we make and take will have a profound impact on the way we control the disease and also the nature of the communities and societies we are forming in that response. But whilst risk may frequently be an individual decision and action, it is influenced by and in turn affects relationships. I can make and take decisions which are appropriate for myself but when those decisions are impacting upon others or are made on behalf of another for whatever reason then the management of risk needs to be forensically examined and transparently justified.

The debate which is for so many of us the most critical and crucial discussion we are having these days is how do we improve and increase the access to care homes to allow families to get back together. In essence that debate is all about risk and how we manage risk. It is far from an easy consideration, in fact it is heart-breaking.

Yesterday’s Big Interview in ‘The Times’  newspaper was on Prof Sir David Spiegelhalter from Cambridge University, who has impressed me every time I have seen him on television during the last few months. But he is also someone whose work I have known for some time because he is an ‘expert on risk.’

Spiegelhalter a long time before the pandemic said:

 “The media want to make things exciting and usually alarming, so there’s a tendency to present figures in a way that makes them look dramatic, and we should be able to take these stories apart…it’s important that it’s not just left to the very senior people to draw attention to the misuse of evidence or statistics.”

And how true has that been in the last few months! –  don’t we all know the truth of the deception of statistics and the perversion of data.

In his book, The Art of Statistics,  Spiegelhalter argues that there is an onus on scientists like him to explain risk to the general public in a way that achieves the appropriate balance between informing and causing alarm. He appreciates that we all understand risk in  an often very individual way and even two scientists looking at the same data may come up with a diverse interpretation because of the moral paradigm of risk that they are working with.

At the present time we are witnessing an alarming increase in daily cases in Scotland in no small part generated by the risks which those of a younger age have taken around house gatherings and behaviours in hospitality settings. There are so many ways in which I can understand their behaviour. The data seems on the surface to present the risk of Covid to them as one which is relatively low and so the accompanying warnings that it is still a virus that can result in crippling long-term damage to young people are not heard. What dominates is the desire to get back to normality, to live life to the fullest, to reconnect and to enjoy. All perfectly understandable. But as Spiegelhalter states:

“The point is that risk is not just risk to yourself it’s risk to others as well,”

The challenge is, in part, that our understanding of risk as a younger person is palpably different from risk as we deal with it when we are older. At times I think the psychology of our public messaging has failed to appreciate that risk really does feel different dependant on the age you happen to be. So rather than an emphasis on risk the narrative should rather focus on our mutual responsibility one to the other not in order to ‘guilt out’ folks but in order to tap into the altruism and humanity which so many showed during the depth of the pandemic in the spring. For me in the last few weeks the biggest impact on local lockdowns has been on our older population and especially those families prevented from visiting residents in care homes which have had to close to indoor visiting just as they were beginning to open up. Individual actions can lead to a real desolation for others at this time perhaps to a degree that individual risk-taking has never impacted on others before. But I am not convinced those taking ‘risks’ truly understand the consequences upon others.

When we consider the issue of care homes I think we are getting to the heart of the risk debate that many of us are daily struggling with. The continual debate I have with clinicians and advisors is how do we get the balance right between protecting people from the virus and enabling them to have a quality of life which is enhanced by contact with their families and the wider community.

Spiegelhalter states:

“This whole crisis has turned into an issue of risk management. That means perpetually a balance of potential harms and benefits. There’s no such thing as safe, there’s no such thing as right or wrong. Everyone has to carry out that balancing act.”

As we move into winter and face the challenges of weather and potential increased instances of lockdown we need to find a better risk balance to enable people to be reconnected. I think we can learn some lessons from the world of safeguarding as we pursue that balance. At times I fear that maybe not surprisingly during a pandemic we have become automatically risk avoidant rather than risk enabling. We need to correct that imbalance.

In ‘normal’ times in health and social care a traditional risk aversion approach has gradually been replaced in the last few years with talk about enabling risk, and with the development of new models and ways of working which enable individuals to re-develop strategies for risk-talking and managing risk even in situations and contexts where familiar securities are no longer there, such as post illness or with declining capacity.

A major Department of Health consultation ‘No Secrets’ examined their approach to adult safeguarding and risk, and stated:

‘A balance needs to be established between empowerment and protection and between the rights for self-determination and the duty to ensure safety of people… We want to support people to be citizens and take risks that they understand. ‘

Good adult protection and safeguarding is about balancing risk. We all live within environments which are not risk neutral, but we have developed the skills and tactics to minimise, control and live in the face of such risks. That is part and parcel of what good support should be.

Risk enablement is about proportionality. It’s about nurturing within those who might be more vulnerable the insights and abilities which enable us to live in the world.

During a pandemic and especially now it is as we struggle to get a better and more proportionate balance between risk avoidance and risk enablement that I think we need to appreciate that for those who are at the end stages of their lives that seeing family, being able to be held, being together  – all with appropriate protection – trumps an approach to  risk which is in danger of adding to the number of days lived but diminishing the quality of those hours to a point at which they cease to have any real value. There really is more to life than chronology; more to our life than mere existence. There are no easy answers but simply asserting data and science as the sole predicators for decision-taking on risk is no longer sufficient or responsible, not least as it fails to value the rights of individuals.

I will let Spiegelhalter have the last word:

“Experts aren’t always right, they disagree, scientific disagreement is an integral part of science. When I hear a politician saying, ‘We are following the science’, that is when I start screaming at the radio. You do not follow science because it doesn’t tell you what to do. It is sitting there beside you humming and hawing.”

Dr Donald Macaskill

When I was at school my English teacher brought many poets to come and read to us. I probably didn’t appreciate then just how lucky I was. I do now. I can remember many and have forgotten more. But one I will never forget because he spoke in the timbre of my own first tongue with a rhythm I related to and a language I felt inside me was Norman MacCaig.

He wrote:

Aunt Julia spoke Gaelic
very loud and very fast.
I could not answer her —
I could not understand her.

She wore men’s boots
when she wore any.
— I can see her strong foot,
stained with peat,
paddling with the treadle of the spinningwheel
while her right hand drew yarn
marvellously out of the air.

Hers was the only house
where I’ve lain at night
in the absolute darkness
of a box bed, listening to
crickets being friendly.

She was buckets
and water flouncing into them.
She was winds pouring wetly
round house-ends.
She was brown eggs, black skirts
and a keeper of threepennybits
in a teapot.

Aunt Julia spoke Gaelic
very loud and very fast.
By the time I had learned
a little, she lay
silenced in the absolute black
of a sandy grave
at Luskentyre. But I hear her still, welcoming me
with a seagull’s voice
across a hundred yards
of peatscrapes and lazybeds
and getting angry, getting angry
with so many questions unanswered.

Norman MacCaig’s ‘Aunt Julia’ is now one of the poems taught in Scottish schools as part of the exam curriculum. I’ve always loved it. Aunt Julia lived on Scalpay on a croft not unlike that of my own family on Skye. She only spoke Gaelic and no English. Again, something that resonates with me as I only learnt to speak English ‘properly’ after I was five. She reminds me of my Aunt Effie in black boots and black skirt, whose apron painted a canvas of egg stain, peat and flour. Even though they could not share a language MacCaig adored his aunt, as I did mine. In words of poignant regret, it was only after her death that MacCaig learnt enough Gaelic to have been able to communicate with her. Now she is absent, his questions lie unvoiced and unheard. There is a separation that nothing can bridge. So many questions unanswered and he is angry.

To be absent from the hands that caressed you every day of your life; to be invisible to the face that woke your dawn with a smile; to be silent to the lilt of voice that spoke as music in your ears; to be distant from the touch that cradled your pain and held your laughter … that is separation.

To be separate from those we love and those whose bone has become the very marrow of our being is an ache which can never be put into words or remedied with any solace. If one has power over it happening, it can only be a conscious and deliberate action if it is for the protection of that very love whose absence creates ache and tear.

This week I want to write about separation.

Getting the balance right between keeping people safe from a pernicious virus and enabling individuals to be restored to the fullness of relatedness was never going to be an easy task. I have been reflecting on whether or not we have got this balance right in the last week partly because of a mounting unease within me and partly because of the tear-inducing correspondence I have been receiving, I have read so many Guidance documents and suggestions from across the world about how it is possible and what steps have been taken to restore a balanced safe normal to older people’s residential care including this week taking part in an international conversation.

I have written before that I think the early measures taken to exclude visitors and shut down our care homes were entirely legitimate and proportionate because the threat of the virus to life was self-evident. It was not an easy thing to do but restricting people’s human rights was acceptable and the right thing to do at the time. As we began to understand the danger of asymptomatic transmission, as a nation we have escalated testing of staff to the level it is now, and we have used PPE, especially masks, to the level we now do. As a result, and because of the wider actions of others in lockdown we have significantly diminished the impact of the virus though as witnessed in the last few days the virus is still present and can tragically still take life in care homes and community.

Last Thursday was the 25^th week since the start of lockdown. In the last few weeks we have introduced visiting outdoors and then extended it, started visits indoors and on Thursday there was an announcement about the return of visiting professionals and the greater use of communal space.

But 25 weeks on it is still the case that thousands have not been able to meet up because of the restriction on numbers and the capacity of care homes to staff and supervise visits, because of the Scottish weather and more recently because of local lockdowns and decisions to close care homes to visitors.

There is now a growing anger in the wider care home community about the proportionality of many of the restrictions which in the initial Guidance seemed appropriate. People are weary of being separated and they are struggling to see the justification for what they perceive to be a disproportionate removal of the rights of those in care homes. I have reflected elsewhere about how we have failed to adequately hear the voice of residents and are increasingly, I am afraid, diminishing the human rights of citizens with capacity who happen to reside in a care home by failing to allow them to take decision and action in an autonomous way.

If some form of separation is necessary for protection then the way in which we do it simply has to change.

We have to get better at including and involving families not just to help them understand what Guidance says but to take control and co-write that Guidance so that they are more in control of decisions. Family members are not visitors into the lives of their loved ones they have the right to do be present (with consent) and no-one should diminish that right over such a long period of time without the most profound justification. Clinical paternalism, public health risk aversion or political caution have their place but we must also find a space for the exercising of the rights of residents with capacity to knowingly take control of their decisions and the risks they wish to take providing others are protected. We are witnessing on a daily basis that people are switching off their lives having decided that there is no point in living in this twilight existence of separation and absence. The distressing effects on the mental health and wellbeing of residents and family members alike is  a scandalous trauma.

We have to become more proportionate in the rules and requirements we make. I have yet to see any clinical or scientific reason why a family member wearing appropriate PPE cannot sit alongside their loved ones and hold their hand or stroke their face or feed them their meal. We have to encourage protected touch rather than strip physicality away from encounter.

We have to banish the distance of togetherness by removing the 2-metre distance requirement when people wear appropriate PPE. If a professional carer can be close then why can family not do the same?

We have to get to a stage where we prioritise the new faster tests that are being developed for family members seeing them as critical and essential key workers in the lives of their loved ones.

We have to extend the time that family can be together and get to the stage where there is more control for individuals.

We have to restore privacy to individuals so that they can meet and be together without supervision or oversight. Care homes are not prisons nor are care staff wardens for the behaviour of others.

We have to allow people to go out in the community and not expect them to isolate themselves for fourteen days when they come back to their own home. Which one of us would go out to the shops or for a meal and then imprison ourselves for fourteen days?

There is, I believe, much more that we can and must do. It is clear that we will be living with the pain of separation for some time. We can lessen that pain by ensuring that the times of togetherness are as normal and as natural as they can be. At the moment I fear we have simply created an abnormal new normal.

Donald Macaskill

 

 

In life if we are lucky we are sometimes fortunate in meeting people whose words and insights resonate with our own. For me one such individual was the Irish poet and philosopher John O’Donohue who I had the good fortune to hear and meet on a number of occasions. His words both in prose and poetry speak to me with an insightfulness on the subjects which matter most in my life and with a wisdom which few have equalled since. In particular O’Donohue in his writings on grief and dying seems to reach deep into the truth of the universe. In ‘For Grief’ he writes:

“When you lose someone you love,
Your life becomes strange,
The ground beneath you becomes fragile,
Your thoughts make your eyes unsure;
And some dead echo drags your voice down
Where words have no confidence
Your heart has grown heavy with loss;
And though this loss has wounded others too,
No one knows what has been taken from you
When the silence of absence deepens.

Flickers of guilt kindle regret
For all that was left unsaid or undone.”

Tomorrow is National Grief Awareness Day. It is also the day when I will remember the 10^th anniversary of the death of someone very special in my life and to those I love. It is a day when I will reflect on my own memory and silence. A day when rushing into my heart will be all those words unsaid to all those absent from my living but not my loving. So, I hope you will forgive me if I reflect today on grief in these strange times because it has been much on my mind this week and it is something which is troubling me more and more. This is the case because virtually every day this past week I have received two or three heart-rending emails from family members of people who are living in care homes under continued restriction. We grieve not only for those who have died but sometimes for those who are living.

Over the years as I have grown to know more about dementia both professionally and personally I have understood the aching truth that even before the death of a loved one we start the walk of grief, that we acclimatise ourselves to the increasing fragments of connection as the disease turns our beloved into a shadow of themselves. It is not that we ‘lose’ the person and give up on them. They are still there, locked inside the shell of flesh which imprisons their smile and happiness. We still want to be present to re-connect, to mirror memory and to soothe distress. We never give up on the yearning and hope for that spark of the old and familiar. People have described these feelings as a waking death – witnessing our loved one slowly slip away from the grasp of your togetherness. And in such times we prepare for the parting; for the time without, for the emptiness and the ‘silence of absence’.

The peculiar sadness of these days is that because of the ravages of Covid there are countless hundreds who are not able to be close with those they love, who are shut out on the other side of doors and windows, waving at their loved ones, shouting across two metres unable to be heard and to be understood. This is heart-breaking to endure and hard to witness and watch. The sheer agony and pain I have read and heard in the weeks that have passed has changed all of us and yet I despair at the casual behaviour of others routinely returning to ‘business as usual’ without recognising the silent pain happening in our midst.

It is not that people, from clinicians to carers, from politicians to policy makers, are not sensitive to the hurt. We are all trying to feel our away through this unknown to get the balance right between protecting people and keeping them safe and restoring the relationships which are intrinsic to who we are as human beings. Personally I am convinced we must find better ways in which we can increase that togetherness, where families are not allocated slots of time to enable their love to be shown; where through the use of testing and PPE we allow people to be held, to hug and to feel love through their touch one with the other. Our detached observance of our mutual love cannot remain as the new model of our being with one another. For so many the aloneness of grief is being felt now as lives slip slowly through their fingers, as loved ones change in sight of but beyond family comfort. This is a grief made real.

But as I think about our National Day of Grief tomorrow I am also mindful not just of the pain in our care homes but the real sense of emptiness being felt by many thousands across Scotland at the present time. Yet so few are talking about this hurt – it is almost as if it is too painful for our society to talk openly about what and who we have lost.

Yet again in the past week I have heard and spoken to those doing amazing work to support others through their bereavement – this time the remarkable Macmillan supported bereavement project and work at Glasgow Royal Infirmary. Bereavement support and services have always been delivered in a patchwork manner across Scotland with some astonishing work being undertaken by a range of organisations. As a society we have through Covid experienced real change and trauma and I think that urgently we need to prioritise the funding and mainstreaming of bereavement support so that it is embedded as a strategic priority for and part of who we are as a community. Sadly, not everyone can do the work of grief on their own, some of us need support to put together again the broken pieces of our heart. We need to get better as communities in ensuring that such support is there for individuals. Becoming more confident about talking about death and dying might just be one of the legacies of the pandemic age we are living in, but such articulacy must also be accompanied by a societal willingness from political leadership down to local communities to resource and prioritise the provision of bereavement care and support.

O’Donohue speaks of the way in which with time, care and compassion, after being held by others we come to live with our grief:

“Gradually, you will learn acquaintance
With the invisible form of your departed;
And when the work of grief is done,
The wound of loss will heal
And you will have learned
To wean your eyes
From that gap in the air
And be able to enter the hearth
In your soul where your loved one
Has awaited your return
All the time.” 

I hope on National Grief Awareness Day more and more of us will be able to wean our eyes ‘from the gap in the air’, but we also need collectively to remember, support and be present for those whose pain is raw and real and whose tears are still wet. We need to own the anger and hurt before we can change and move on. Grief is something we work at and do – it is as hard a labour as we will ever encounter but ignoring the pain will just serve to deepen the emptiness. Part of that work in the coming weeks as we move into winter planning is I am convinced the need to work collectively to reconnect people in care homes and communities, to rebuild the bonds between young and old, son and daughter, lover and beloved.

I leave you with words which remind me of all those whose lives will never be the same again:

 

Nobody ever told me.

Nobody ever told me

it would be this hard;

that I’d wake up in the morning

and think that you were there

lying beside me in our bed;

that I’d walk down the street

and recognise your shadow

following me in the sun;

that I’d listen to the radio

and hear your voice

inviting me to sing;

that I’d sit in the park

and watch you go by

in a group of strangers.

 

Nobody ever told me

it would be this hard;

that I’d wonder why I should

get up in the morning;

that I’d think making plans

was a children’s playground game;

that I’d rage with anger, red and raw,

at your leaving;

that I’d wonder was it me

who did something

that made you go away.

 

Nobody ever told me

it would be this hard.

 

Why can’t someone tell me instead

how I can stop crying

and dam the tears from soaking my pillow?

How I can start again when all I want to do

is rest in our lost togetherness?

How I can ‘move on’ when I only want to settle

in the place of our memories?

 

And please someone tell me

when will this time come,

the time they all talk of

in easy careless cliche,

the time which they say

will heal all things

and help me to live again?

 

 

I am unashamedly an enthusiast for technology and gadgets. I may not have the latest phone or gizmo, but it is likely if you do I will look on with more than a modicum of jealousy.  As part of this fascination I have always been intrigued about the role of technology and digital in our care and support services.

This interest led me two years ago to write a report exploring the role of human rights in the developing fields of Artificial Intelligence, the Internet of Things and Big Data. Now before you scroll away, my central premise and interest in doing so was to explore the extent to which we can keep the human and especially rights at the heart of our use of technology in health and social care.

I have had quite a few conversations in the last week around technology, in part because along with colleagues, I am preparing for the Scottish Care Care Tech3 event next Friday. This virtual event will bring together those who have been using technology and digital in the delivery of care services and will include designers and developers as well as frontline staff and users. The equivalent event last year saw the launch of a Human Rights Charter for Technology and Digital and this year my colleague Dr Tara French will be sharing the Scottish Care Tech Vision rooted in the human rights and autonomy of individuals.

For me technology at its best is explicitly an art or a craft (indeed that’s what the word tekne means in its Greek root). Its potential is immense in that it can deepen and enrich human encounter and experience, can foster connection and enhance relationships. However, too often, I feel, we get so caught up in the mechanics and the technicalities of new technology, that we lose sight of the art, the creativity and the humanity. Equally we can get so obsessed with using technology as a cost-saver and as an efficient alternative to the human that we endanger the willingness of citizens to adopt and trust.

The Covid pandemic has seen the most amazing advances in the use of technology not least in the health and care sectors. The pace and speed of intervention and design has been breath-taking. The launch in the last week of an app to help care home providers share critical data and information on a national level has been astonishing, moving as it has from wire-design to delivery within weeks.  We have witnessed a massive increase in the use of video and tele-consultations between GPs and their patients not least through the Near Me technology supported by Scottish Government. Remote diagnostic tools have been developed and many more practical and helpful innovations including the use of virtual reality have enabled technology to come off the paper and change lives, indeed, probably to save lives.

Perhaps most importantly, on a very human level the experience of many of the residents in our care homes has been that through the use of tablets and other video devices they have been able to keep in touch and remain connected with their family members during the forced lockdown when physical contact has not been possible.

But it is as a result of my many conversations with families and residents and those who used health and care services during the pandemic that I feel that my own enthusiasm and evangelism about technology needs to be more balanced.

Now I am not suggesting that we are in danger of some dystopian nightmare where automaton have taken over and that as a result we need to develop a fear of the technological future. Covid19 whilst it has highlighted the real progressive power of tech and digital has also served to underline the critical importance of embedding a human rights and ethical framework in its use in health and social care.

Technology within a care context should primarily be about enabling the betterment of interaction and facilitating the intensity of relationship. It should always be about improving outcomes for the person rather than simply making life easier for the professional. A GP who uses Near Me to consult with someone in a care home is positively providing an immediacy of response and especially during a pandemic reducing the risk of virus transmission. However, few would deny that the subtleties of body language, the dynamic of inter-personal relationship, the signs and signals of encounter can be equally achieved through a virtual encounter compared to a face to face meeting. Video consultations are fundamentally important, but we have to acknowledge their limitations. We have to appreciate that there are those with visual and hearing impairments, those with advanced dementia and other neurological conditions ( i.e. the majority of care home residents) who struggle to engage with such tools and who are dis-empowered by any sole dependency upon them, to say nothing for the effects on their personal privacy and autonomy. We have equally to acknowledge the reality of digital poverty which if not adequately recognised will serve to exacerbate and compound the very real health inequalities which have scarred Scotland.

I know from practice that one of the most important things I learnt was to give space to ‘doorknob’ conversations. These were the conversations which happened as someone got to the door, placed their hand on the handle, and turned around and said to me ”Oh there is something else I meant to say…”  And you just knew that this interaction was the primary reason they had come to see you but just could not get up the courage to talk about face to face.  Not much chance for the occasional, by-the-way alongsideness of such conversations in a video consultation. So too those of us involved in talking to others about hard and emotional subjects recognise that it is not just what someone says that communicates their truth and feelings but also the way they say it, the timbre of their voice and the silence between the sounds of their words.

But there has been one conversation more than any other during the last few months which has helped to balance my digital enthusiasm. It was with the daughter of a care home resident who had provided a tablet for her mum to speak to her and keep in touch. After weeks of growing frustration with both the device and her mother’s inability to comprehend what was happening and to use it –she said to me – “I want to hold her and hug her, I want to touch her not give her a digital kiss.”

As I researched the report I mentioned earlier I spoke to many around the world from California to Tokyo, Edinburgh to Oxford, about what the future of technology and care might look like. At the end of six months of Covid I believe we are closer to that future than we could ever have imagined at the start of the year. But for all the immense progress in the last six months I am left with the conviction that my concerns in that original report over data privacy, citizen disenchantment and the intrinsic value of human presence are now more valid than ever they were before.

We need to work together to create a Digital Plus world where we celebrate and appreciate the contribution of technology and digital to change our lives and improve our health alongside  the critical importance of enhancing human interaction and developing models which are right for the individual rather than appropriate for the system. We need to assure those who are anxious about how their data will be held and accessed and be confident in ethical principles and the human rights of privacy and personal control. We need to address the fear that human touch and contact will be marginalised by electronic encounter and exchange.

In a world of robotics and care bots, in a realm of accelerated data and machine learning, we dare not lose the human at the heart of the machine. Technology can enhance connection but can never replace touch; a machine can foster memory but can never give the feeling of a hug, held close, warm and affirming full of a depth of meaning beyond calculation.

So I will continue to be enthusiastic about the potential of technology but I will balance that with the lessons of Covid which more than anything else have taught me that when it matters most we want to be present, to feel we are heard, to recognise the rhythm of another’s concern, and to be held. If we get the balance right then we will really experience the touch of technology.

 

Dr Donald Macaskill

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

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 

 

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 20^th 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