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?

 

‘To vaccinate is to care’ – Our new moto?

There is nothing like a global pandemic to make you rethink what is important to protect ourselves and others. In recent months we have witnessed the efforts of all front-line healthcare staff to promote infection control through the strict measures laid out within infection control guidance, by ensuring PPE is in place, alongside social distancing and hand hygiene practices to reduce the spread of infection amidst an ever changing landscape.

Earlier this month the expansion of the flu programme was announce in Scotland and within this was that all social care staff providing direct care would have the opportunity to receive a free flu vaccine. This has been welcomed by all providers as it offers a further safeguard at a time when infection control has been the highest priority in preventing loss of lives. This has come as excellent news to staff as the disparity over this protection from flu between NHS and independent care sector staff was one that had been fiercely contested. It therefore seems fitting that this has been agreed in this particular year when we must ensure everything is being offered to staff to ensure their health and well-being.

We know that the uptake in previous years has been variable across the NHS workforce despite having this access to vaccination and arguably the most preventative way to reduce cases. The availability to social care staff was patchy and often resulted in a cost to the employer or the staff member. This will undoubtably improve in light of the current pandemic, both through the uptake of the vaccine and the infection control measures currently in place. As we start to move into remobilisation and recovery plans across the NHS and community, it is important that we do everything possible to reduce the burden on the NHS and social care this winter, especially in light of a potential second wave of Covid-19. Our hospitals will have reduced beds and staffing due to the post Covid measures put in place, therefore preventing unnecessary admissions is key.

NHS boards will choose their own delivery option and this year it is hoped that care home nurses will self-vaccinate their own staff, which would hopefully allow a better uptake. This year’s national campaign will be fully inclusive of the care sector to promote the value of the work staff do with  adults who require care and support and the importance of getting vaccinated, as well as to demonstrate how we recognise the importance of  the health and well-being of staff alongside the protection of residents.

We have also ensured that flu campaign signage will be visible within each of our care homes across Scotland to ensure a strong message about  the need to be vaccinated and that this is being promoted and offered to our staff and residents alike. In addition to this we will record the uptake of the vaccine by staff as part of our daily safety management tool.

As we approach the winter months in a year where the loss of lives within our most vulnerable groups has been staggering the focus to ensure every safeguard is in place is paramount.

Within health and social care, the safeguarding of our patients and residents has always been at the forefront of all staff endeavours but perhaps they have neglected themselves in the process. Staff may perceive themselves to be invincible, healthier than they actually are and therefore not at risk

’I go to the gym and take daily vitamins so don’t need the flu vac’.

We recognised that during the pandemic many frontline staff have experienced significant burnout which ultimately has a detrimental effect on staff well-being and immunity, therefore, potentially putting them at a greater risk of being susceptible to the flu .In addition to this many health and social staff are approaching the higher risk age groups and may already have a long-term condition (LTC). Even in healthy adults, the risks associated with the transmission of the flu virus have the potential to be life threatening. We know that clinically the vaccine does not provide full protection, but it could save your life.

Presenteeism has been cited as a common cause for the spread of the flu virus with staff going to work when having some mild symptoms but not sick, but actually harbouring the virus, therefore potentially spreading this within their workplace.

This obviously presents significant risk to patients, residents and staff alike. We also have people who have been diagnosed and survived Covid-19 which has resulted in the need for specialised rehabilitation and recovery care plans for some and has weakened and progressed the ability to recover for others. Some people may have been asymptomatic therefore it is unlikely to fully know the extent of those who had Covid19 which raises the potential that some people may have a weakened response or will be more susceptible to this year’s flu virus.

Over recent years there have been several pushes to have the vaccination of frontline staff made mandatory but this presents many moral, religious and ethical questions. Respecting staff choice is important as some staff are simply not able to take the vaccine, although the risk of adverse reactions is low they can exist, and vaccination should always require consent for that reason alone. Some countries such as the USA have chosen to make this mandatory in a number of states to ensure the decline of the incidence of flu and subsequently reduce the numbers who die from this. The arguments for this approach are ones which are still currently being explored in the UK.

There is no question that prevention is better than cure, especially in this year when the risk of a second wave of Covid-19 continues to be a real potential threat. Perhaps then the standpoint should be not whether we agree or disagree with enforcing a mandatory approach for all healthcare workers, but that we adopt a mutual benefit response to reduce loss of lives at a time when  residents, staff and families may still be in a recovery phase from the pandemic. What is ultimately important is ensuring we create awareness, provide factual information, dispel the myths and provide easy accessibility to the vaccine and ensure we properly record the uptake to assist in the future vaccination programmes.

With this year’s flu expansion programme, I am confident that social care staff with fully embrace this opportunity and that the uptake by staff will be high across both NHS and the independent care sector.

This really is everyone’s business and the reduction of the age to receive a vaccine this year for the people of Scotland highlights that we all want to prevent further loss of lives. Our flu campaign will launch in the coming weeks and I hope everyone gets behind this and does everything to play their part.

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