Palliative humanity: living through dying a blog for World Hospice and Palliative Care Day

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Japanese Maple

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

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

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

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

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

© Clive James, 2014

Donald Macaskill

 

 

News release: Scottish Care’s Care at Home & Housing Support Awards 2020

SCOTTISH CARE – CARE AT HOME & HOUSING SUPPORT AWARDS 2020 

A prestigious evening awards ceremony celebrating the best of the independent care at home and housing support sector will be held online tonight (Friday 9 October 2020) to recognise the contribution of homecare staff before and during the Coronavirus pandemic. 

Scottish Care, the representative body for independent social care services across Scotland and organisers of the event, are encouraging those working in the sector and the wider public to join the online Awards to recognise and celebrate the role of social care workers.  

Winners will be announced at the Awards Ceremony tonight, hosted by presenter, columnist and Pop Idol winner Michelle McManus. 

 Awards will be given out over ten categories:  

  1. Emerging Talent Award 
  1. Care Services Coordination/ Administration Award 
  1. Care Learning Award 
  1. Management & Leadership Award 
  1. Outstanding Achievement Award 
  1. Carer of the Year 
  1. Palliative & End of Life Care Practise Award 
  1. Technology & People Award 
  1. Provider of the Year 
  1. Positive Impact Award  

However, Scottish Care has also issued an Awards certificate to all independent sector social care workers – across private, not for profit and charitable organisations – to thank them for their continued work in providing care to Scotland’s more vulnerable citizens in extremely challenging times. 

Dr Donald Macaskill, CEO of Scottish Care and co-host of this evening’s Awards, said: 

There is an awful lot in our society which has changed since March this year but there are some things which remain the same. So it is that every day women and men are going out from their own homes to care for and support the tens of thousands of people who are looked after in their own home. The workforce have behaved with such dignity, compassion professionalism and skill over the last few months as they always do. Tonight, is a time to say thank you and to recognise the particular skills of a few but it is also a night when we acknowledge our debt of gratitude to every single woman and man who makes up Scotland’s care at home and housing support workforce. 

The awards have been hailed a huge success in recognising individuals, teams and companies, who are delivering care at an incredibly high standard in an era of challenging budgets and within an increasingly demanding work environment.   

The care awards will follow a three-day online conference with speakers including Joe Fitzpatrick MSP – Minister for Public Health, Sport and Wellbeing. 


For more information on the award finalists, please see: https://scottishcare.org/finalists-announced-for-care-at-home-housing-support-awards-2020/

Seasonal Flu Campaign launches today – 8 October

Seasonal Flu Campaign Stakeholder Toolkit

The Flu is Serious Stakeholder Toolkit below outlines the overarching campaign, and contains campaign materials by eligibility group.

Due to the different ways in which the flu immunisation programme will be delivered this year and the increase in those that are eligible for the free vaccination we wanted to give you all the relevant information to help encourage uptake. The stakeholder toolkit contains assets by eligibility group, so please refer to this for further information.

The new health and social care worker myth busting video asset can be viewed here.

TV ad can be viewed here:

Purpose of the campaign

  • To highlight the seriousness of flu, especially with Covid-19 around and importance of getting vaccinated, as well as educate new eligible audiences including social care workers, household contacts of those that were shielding, and from December 55-64 year olds will also be eligible.

Key Messages:

  • Flu is serious: If you are offered the vaccine, please get it.
  • Protect yourself: Every year in Scotland, thousands of people are hospitalised with flu. It can be serious and life threatening, so getting vaccinated is the safest and most effective way to protect yourself.
  • Protect others: Reduce your risk of getting flu and spreading it to others, especially those who are most at risk.
  • Protect our NHS: Help our NHS avoid the pressure that a spike in seasonal flu would put on top of Covid-19.

Call to action:

  • For more information on eligibility and information on how to book an appointment we are asking the public to visit www.nhsinform.scot/flu or call 0800 22 44 88.

Please do share, and remember if you are offered the flu vaccine, please get it!

The invisible pandemic:  the urgent need to renew homecare

If the weather allows this weekend I will hopefully escape the house and get into the garden to start to prepare the soil for the seasonal planting of bulbs. I’ve always loved gardening and open spaces, perhaps it’s me getting in touch with the Hebridean genes of ancestors who farmed the land, even without their skill and ability. Even when I have been in a place without a garden I have always wanted green life in my space. This time of year, in particular, is one that gives me a sense of the natural rhythm of existence, as planting bulbs kindles my inner hope for renewal and rebirth after the anticipation of the deadening and bleakness of winter. But of course, as any gardener knows only too well the quality of the resurrection of vibrancy in the spring, the depth of colour and vigour of harvest, is always conditioned by the soil and its preparation. You cannot sow hope in rotten soil.

On Wednesday along with colleagues I will be starting a three-day ‘Homecare Festival. It is an attempt to focus on the astonishing work of care and support that happens in the heart of our communities. On any one day of the week there are tens of thousands more people being cared for and supported in our communities than in our care homes and hospitals combined. They are being supported to play their part as full citizens of their communities. It is a care and support that gives them independence and freedom, meaning and purpsoe, contribution and value. Yet the homecare sector is one which is often ignored and rarely recognised. Never has that been more true than during the last few months of Covid19. Despite attempts it has been rare for the media to tell that story or focus on what has been happening in our communities. Perhaps understandably but no less inexcusably our focus in society has been on events in care homes and hospitals, and not in the homes beside our living. This needs to change.

In the last few days as I have prepared for the Scottish Care Homecare Festival, I have read report after report detailing the silent and invisible pandemic which has been affecting our old and disabled in communities right across Scotland.

At the start of the pandemic tens of thousands of packages of support were withdrawn – in part by local authorities seeking to prioritise resource and in part by families who feared that staff going from home to home would bring in the virus. The effect of these interventions is only now becoming clear. A couple of weeks ago a homecare worker wrote to me and detailed some of what she was witnessing and seeing. She spoke of older folks she had known for a long time showing visible signs of decline and deterioration; of a gripping sense of isolation and loneliness because with restrictions some people living with disabilities were cut off from friends and family; she recounted the growth in cases of body sores because folks had become immobile without exercise and unable to go out into the community; and most worryingly she told of the dozens she knew whose mental health had been shattered by lockdown. The stories of thousands of individuals who receive homecare supports will not often be heard or told but their pain during the pandemic is no less real for the lack of telling.

We stripped away thousands of packages of support and it is clear as we start the possibility of yet more restrictions moving into autumn and winter that many of these have not been restored. Some undeniably because family are still caring because their work has not re-started. But I fear that many more have not been re-started because of a decision to save money and a presumption that if people coped during the pandemic then they can cope now. I have heard such folly voiced and foolishness it is indeed. If for no other reason we have to reckon in that calculation the truth which tells of a 25% increase in ‘excess deaths’ in our communtiies of people living with dementia, diabetes and orher conditions.

Even before the pandemic homecare in Scotland was in crisis, it was rooted in a rotten soil. That rottenness was for many reasons. Chief amongst them was because we have failed to embed ground-breaking legislation which gave citizens control and choice of their care, instead the ‘system’ has held on to its power and resource by refusing to inform, to give people control over their budgets, and to really empower people to take control of their lives. The system has played the game of ‘self-directed support’ but not released its spirit, vested interest has cut off the shoots of real change before they could flourish.

Even before the pandemic we witnessed the perversity which comes from presuming that care can be delivered in fragments of time. Across the country there are packages of care counted out in 15 or 30 minutes created by number checking commissioners of care without regard to the urgent need for people to be treated as human beings rather than coins in a machine. There is no way one can deliver dignified, rights-based care and foster and nourish relationships in slivers of time.

Even before the pandemic we treated our frontline care workforce shamefully. Local authorities whilst boasting of their own Living Wage Employer and Fair Work practices bought care on the cheap by drawing up contracts with care companies knowing that their allocation of resources prevented those organisations from delivering fair terms. And to add insult to injury the same authorities introduced electronic monitoring systems to effectively ‘tag’ frontline carers so that they could be stalked and controlled.

The pre-pandemic state of homecare in Scotland – and therefore by volume – social care as a whole was shameful, pathetic and rotten. And it still is. Radical change is needed. If we are to flourish and come to a spring of renewal the soil needs to change and the system needs to be overhauled.

So, at the Homecare Festival I hope we will hear of a vision which will be about giving control and power to the citizen who is supported and who uses care rather than to commissioners and bean-counters. I hope we will hear of a vision where workers are trusted and given autonomy, not clocked and checked at every turn. Where terms and conditions are resourced for equality and fairness rather than a two-tier system where local authorities look after their own first and others get the fag-end of attention and support. I hope we will hear a vision where prevention rather than reaction is at the heart of the packages of support we create. And most of all I hope we hear of a vision which adequately resources the care of people in their own home rather than seeks to buy care on the cheap. All of this would show we care about care rather than empty slogans.

At the heart of all this – as we enter a Covid autumn and winter, I hope that when we plan, we remember that many of the thousands of family carers who took over care or carried on care without support are absolutely on their knees. Families are exhausted, the act of 24/7 caring has spent and drained them. They urgently need support especially where traditional day services and respite opportunities have been stripped away during the pandemic. We need to critically re-prioritise homecare and seek to invest more not less.

Across Scotland today there are thousands of people in urgent need of support to rehabilitate their physical bodies after months of decline, there are hundreds in need of psychological and emotional support after isolation and emptiness; there are yet more in need of being made to feel that they matter, that they are noticed, that they are valued.

There is much talk of winter planning –but if we do not plan to tackle this pandemic in our communities and in the homes of those who require support and care then we will reap a terrible harvest of regret in the spring. We need to renew the soil, replace the rotten practices of the past with refreshed vision and humanity. We can only sow hope and healing in conditions that allow it to grow.

The great Irish poet Derek Mahon died on Thursday night. He was a poet of his time asking uncomfortable questions to those who would rather not hear. I think homecare asks us the same. We can go through the next few months choosing to ignore the silent pandemic in our streets, in the homes around which we settle our living, or we can open our eyes to create a vision of a better way of caring for and upholding one another. We can collude with the ‘old conspiracy’ of staying as we are, settling for the soil we have or we can create a fresh hope for spring because the truth of homecare around us should surely ‘exact more interest than casual pity.’ Mahon says it all in his brilliant poem  ‘Spring in Belfast’ and its last stanza in particular.

 

Walking among my own this windy morning

In a tide of sunlight between shower and shower,

I resume my old conspiracy with the wet

Stone and the unwieldy images of the squinting heart.

Once more, as before, I remember not to forget.

 

There is a perverse pride in being on the side

Of the fallen angels and refusing to get up.

We could all be saved by keeping an eye on the hill

At the top of every street, for there it is,

Eternally, if irrelevantly, visible —

 

But yield instead to the humorous formulae,

The spurious mystery in the knowing nod;

Or we keep sullen silence in light and shade,

Rehearsing our astute salvations under

The cold gaze of a sanctimonious God.

 

One part of my mind must learn to know its place.

The things that happen in the kitchen houses

And echoing back streets of this desperate city

Should engage more than my casual interest,

Exact more interest than my casual pity.”

 

Donald Macaskill

To find out more about the Homecare Festival from Wed 7th to Friday 9th  see https://scottishcare.org/cah-conference-2020-2/

Turning the world purple: a reflection for International Older Persons Day.

Today the 1st October marks the 30th Anniversary of the International Day of Older Persons. It is a United Nations event which focusses on continued age discrimination across the world and which this year, also the “Year of the Nurse and Midwife”, seeks to highlight the role of the health care workforce in contributing to the health of older persons. In doing so it seeks to give special recognition to the nursing profession and to give a primary focus to the role of women in health and care.

When these themes were decided some time ago no one could have imagined that we would have faced the traumatic year that we have had and are still experiencing. It has been a year which has underlined the need to focus on older people not least because of the appalling truth that the majority of the million people who have died as a result of the Coronavirus pandemic have been aged over 75.  At different points over the last few months we have had occasion to reflect on the existence of unequal treatment of those who are old in the way in which society has responded to the pandemic. At the start we had casual careless talk describing Covid19 as a ‘baby-boomer harvest’, then we had questionable ethical frameworks which envisaged age to be the main criteria to use in any decision to withhold treatment should resources become restricted, and most recently we have heard of suggestions that we should ‘lockdown the old’ in order to let the rest of society get on with life.

Our attitudes to older age, whether positive or negative, are, I believe deeply influenced and shaped by our experience of older age in our early years and upbringing. It is those experiences which will to a greater or lesser extent embed within us a belief that older age is something that continues to have value and offers contribution, or alternatively that we associate older age with deterioration, incapacity and a lack of creativity.

I have mentioned before in this blog my Aunt Effie from Skye. When I think of age, and older age, I think of her. She was a character who stood physically tall and strong, intellectually robust and rooted, at one and the same time melancholic and reflective, fun and frivolous. I marvelled at her daily consumption into her nineties of the written word from novel to textbook, from newspaper to magazine. I was left enthralled by her forensic ability to trace her family tree back three hundred years, a feat achieved in the pre-internet age through telephone and letter – and all at the age of 95. So, for me age has always been a chronological clock that granted the individual free expression, space and time, that blossomed creativity and insight. That is not to deny my own personal awareness and family truth of those who have been limited and imprisoned by dementia and decline, whose lives have been shortened by the lostness of disease and whose living has spoken of sadness and confusion. But overwhelmingly older age is for me a positive characteristic.

So it is that I have always been very fond of the brilliant iconoclastic poem ‘Warning’ by Jenny Joseph which at one stage was the most popular poem in the UK. You might know it: –

“When I am an old woman I shall wear purple
With a red hat which doesn’t go, and doesn’t suit me.
And I shall spend my pension on brandy and summer gloves
And satin sandals, and say we’ve no money for butter.
I shall sit down on the pavement when I’m tired
And gobble up samples in shops and press alarm bells
And run my stick along the public railings
And make up for the sobriety of my youth.
I shall go out in my slippers in the rain
And pick flowers in other people’s gardens
And learn to spit.

You can wear terrible shirts and grow more fat
And eat three pounds of sausages at a go
Or only bread and pickle for a week
And hoard pens and pencils and beermats and things in boxes.

But now we must have clothes that keep us dry
And pay our rent and not swear in the street
And set a good example for the children.
We must have friends to dinner and read the papers.

But maybe I ought to practise a little now?
So people who know me are not too shocked and surprised
When suddenly I am old, and start to wear purple.”

There is a delicious irony in that when she grew older Jenny Joseph was asked if she would start wearing purple anytime soon, to which she replied, “I can’t stand purple. It doesn’t suit me.”

Today as we reflect on what active and healthy ageing is all about – even in the midst of a pandemic which threatens older age – I think it is time for us all to start to wear purple. It is time to turn upside down the conventional assumptions about age and challenge the prejudice which devalues older age and puts youth on a pedestal. It is time to shout down and decry the subconscious discriminatory presumption that the old are incapable of individual choice and decision, of creative contribution and radical change.

On too many occasions during our pandemic response we have treated those who are old with an obscene paternalism and syrupy protectionism which ignores their intelligence and capacity, their autonomy and energy. We have talked about corralling residents in care homes into units to protect them; we have failed to ask and give voice to those whose lives we have restricted and whose capacity for consent we have removed; we have done to rather than working with. Even today we see this paternalism in the desire of some politicians and commentators to rush to become the jailers of the elderly on the pretence that we must protect those most at risk.

The old are not passive passengers in life but they are the living witnesses of years of hard knocks and experience. Age enables in many the ability to nurture the humility that comes from error and failure and from that ground to grow an honesty and sensitivity to others. We ignore that insight at our peril as we repeat the mistakes of the past in every passing moment.

Stepping into the future with our older citizens, wherever they live in our communities, whether alone or with others, is about making a commitment that no one will be left behind, no voice will be unheard because it has lost its strength, no contribution will be dismissed because it is articulated by age.

To be valued, to find a place, to be able to give, to contribute, to participate are fundamental to our health and well-being. Healthy ageing is not about keeping simply the body and the frame of skeleton alive, it is about enabling the passion and power of age to express itself in the whole of our lives and communities. So, as we all grow older in Scotland, I hope we can also tap the potential of every individual in order to maximise the health benefits which come from feeling you can still make a difference.

So, in your place of home, in your place of work, in your place of relaxation, think today about how you can include all the generations, and value especially the gifts, abilities, capacities of those who are older. Think not just about how we protect and keep safe but about how we listen to, learn from, allow to grow and critically allow older age to disrupt and contradict.

Let us all therefore work together to step into a future where every older person can find their place to give, share and be. Let us all  wear a red hat that doesn’t suit and learn to kick over the traces of conformity! It is time for all of us to start to practise for the days of purple.

Donald Macaskill

 

 

‘Compassionate Poetry Week’: 1-8 October

As we approach the final months of the International Year of the Nurse and Midwife , in light of the pandemic, can I suggest that we use the first week of October (1st – 8th) to reflect through writing on what this has meant in the context of compassion. Highlighting the need to be sensitive to the needs of the people we care for, picking up on the subtle signs that allow the human touch, that is key to individualised holistic care. The need to use PPE and distancing has without question altered how we deliver care and interact and this has had a significant impact on staff. There has been some research undertake over recent years to look at the benefits of learning through poetry writing and the benefits this can have as a way of learning and developing to be better nurses, but applies to all care staff.

Can I invite anyone who is involved in health and social care to make the first week of October, ‘Compassionate Poetry Week’ so we can share, learn from each other, and decompress as part of our response to self -care.

Look forward to reading all your thoughts. I’ll kickstart with my contribution below.

 

Jacqui Neil

Transforming Workforce Lead

@TransformNurse

200 days of emptiness, waiting and yearning: a reflection

On Monday it will be 200 days since March 12th/13th when the majority of Scotland’s care homes shut down in order to protect residents from the emerging threat of coronavirus. It is a point in time which comes as the seasons change from a late summer into the shortened days of autumn beckoning in the coldness of winter. Spring and summer have been and gone and the world as we knew it at the start of the year is unrecognisable. These have been days of real pain and emptiness for thousands, and of waiting and yearning for countless more.

I feel it is an anniversary of time which needs to be marked and which should cause us to pause and reflect on how we should be planning and preparing, both practically and psychologically, for the seasons and days to come.

Since the first days of spring when Coronavirus started to reap its harvest, we have lost countless thousands across the country to this virus. We have learnt many lessons taught us in a school of pain and cruelty, sadly some have come too late for the knowing and others have been appreciated too slowly. The daily statistics have become like an inexorable tick of a clock with numbers increasing every day, yet their regular recounting hiding the true story of thousands whose lives have been changed for ever.

As we remember 200 days, we know that there are too many who have lost their lives before their time, too early for parting, too soon for absence. We know that there are thousands who have not been able to be present, to sit alongside loved ones to say goodbye, to hold a hand and caress a face, to wipe a tear and simply to be silent before endings. We know that there are thousands who have not been able to celebrate lives well lived, to spark memories with others and laugh and cry together in funeral and farewell. This has been the unbearable cost of these days.

During those 200 days there have also been those struck down by the virus who have recovered, both in care home and community, but who are marked by the legacy of the disease in a way that has forever altered their living. What has become known as ‘long Covid’ is a set of conditions and a legacy of illness, that we are only now beginning to appreciate, and which will result in extensive need for rehabilitation and recovery for countless years.

So, there has been no shortage of emptiness drained from life and community in the last 200 days. The emptiness of grieving, of lostness and aloneness. There has been the emptiness felt by those who have struggled with the full reality of lockdown, whose mental health and self-esteem have been shattered and diminished; whose hopes and aspirations for their lives have been set aside; whose businesses and careers have been wrecked or abandoned. This has been six-months of real desolation for too many – and yet for so many it has been pain endured in silence, in absence, in hiddenness and on the edge of noticing.

These have also been days of waiting. Waiting to return to normal only to learn the language of a new normal; waiting for life to re-start and living to re-open only to discover a reality unfamiliar and unrecognisable; waiting for exam results and university to start only to experience the pain of anxiety and a strange new beginning; waiting for furlough to end only to be told of redundancy and loss of role; waiting to be re-connected, for shielding to end and encounter to start; waiting for a tomorrow which feels more like our past.

200 days which have changed us all. 200 days which have brought out the best of humanity, have shone a light on the exhaustion of love and giving, but have also witnessed the predictability of ambition, selfishness and frustration.

So, what of the future. As we sense a slipping back into the inevitability of more restrictions, the fear of a return to a pain which is now one that we know all too well, a diminishing of the loss of hope – what now?

I have held many conversations over the last 200 days and in the midst of sadness and emptiness, the characteristics and emotions that have struck me the most, whether on the part of carer, manager, family member, supported person or care home resident, has been a sense of determination and hope, of energy and commitment of care to the other given to the point of exhaustion, of a deep yearning to survive and do better in the midst of the waiting and the absence.

So, the next 200 days can and must be better even though they may be harder – for if we do not believe that, then the sacrifices and loss of the former would be too much to bear.

We need to plan and prepare to a degree and extent which we have never before attempted. Of course, I am not naïve. I do not imagine that even with the best precaution and best planning that we can prevent yet more pain and yet more damage from this virus. But whether it be by getting a testing system that really works rather than promises and fails to deliver, whether it be through robust practice in terms of infection control in our communities and care homes, whether it be through supporting those on the edge of despair and hopelessness in our communities, whether it be through simple acts of neighbourly kindness,  then we can build on what we have done to prepare better for tomorrow.

And some of my personal hope would be:

That we recognise that we have to create opportunities for family members to better re-connect with their loved ones in care homes. We know the desolation and emptiness; we have heard the cries of lostness and have seen the signs of deterioration and decline caused by enforced absence and the loss of touch and contact. Whether it be through extending the time for visits, better resourcing care homes to have additional staff and volunteers to support visiting, by the use of testing to protect visitor and resident, we are all of us determined to learn and improve. We all of us need to make the next 200 days better and more connected.

That we really accept that we need to start to prioritise what happens in our communities as much as in our care homes. There is a growing awareness of all those who have lost their lives in our communities both to Covid and more significantly to other conditions in the last 200 days. We need to make sure we do not remove the homecare and supports which are the lifeline of so many as we face challenge of resource and workforce into the winter. We need to recognise that we have depended on family carers who are now exhausted and drained and cannot face the future without respite and recovery.

That we recognise that just as it was in March, so it is in October, that the first line of defence against this virus is the individual action and responsibility of every citizen. We need to rediscover a collective solidarity which strengthens us to sacrifice our freedom and intention in the service of and for the protection of others who need our loving and caring to be seen in our actions.

That we develop a testing system to protect all whether young person or old, whether care home resident or worker, whether schoolteacher or student, homecare worker or NHS staff member. The imperative of using testing as a protection has never been louder but so too is the importance of recognising that it is not a panacea merely a critical tool in the battle we are engaged in.

That all who can will take up the opportunity to be vaccinated for the flu recognising the real risks of overwhelming care and health systems in the weeks ahead.

That we recognise that there are thousands of staff in care home, community and hospital who are not simply weary but drained and exhausted, and that we do not just speak of support but show it in actions both large and small to alleviate, recognise and reward.

That we do not lose hope and that we continue to feed and foster our yearning for a better tomorrow, a brighter spring and a healed summer.

For even in the last 200 days life has won through against all the death and destruction. At 103 John fought off this pernicious disease and now sits laughing and story-telling with his fellow care home residents. At 38 Jane was able to come through weeks of intensive care and rehabilitation and is now able to hold her child and laugh at the small things of unimportance. At 17 and in a strange university experience there are students falling in and out of love with equal measure in the predictable rhythm of life; that in ceremonies across the country there are lovers committing to a future of togetherness; that in creative ingenuity ideas are being born out of hard work and reflection; that there are artists painting a future of purpose and poets ploughing the depths of emotion; that there is even in the midst of autumn a renewal which overcomes the decay and despair.

The next 200 days will undoubtedly be hard and there will be times of barren emptiness and pain but one lesson the last 200 has taught me is that we cannot make the journey onwards alone, but must all walk through into our future together, without casting casual blame, scoring points, asserting ego but upholding one another and speaking love into emptiness.

We pull ourselves forward together through our yearning. In the words of Seamus Heaney in ‘The Cure at Troy.’

“No poem or play or song
Can fully right a wrong
Inflicted and endured.…

History says, don’t hope
On this side of the grave.
But then, once in a lifetime
The longed-for tidal wave
Of justice can rise up,
And hope and history rhyme.

Believe that further shore
Is reachable from here.
Believe in miracle
And cures and healing wells.”

 

Donald Macaskill

Care Home Staff Testing Feedback on DHSC Portal

For the attention of care homes for adults and older people:

A system is currently being developed to move care home staff testing in Scotland from the Department of Health and Social Care (DHSC) portal to NHS Laboratory resources. In order to inform the process of development of and transitioning to the new system, care home providers and managers have been invited to provide feedback on their experience of using the current DHSC system and to suggest improvements that could be made and to identify best practice you may have in place.

If you wish to participate in this feedback please complete this questionnaire and e-mail it to [email protected] by 5pm 30 September 2020. Please use the subject line: “Care Homes Staff Testing Questionnaire”.

Scottish Care’s response to the Care Inspectorate’s enquiry report on care at home and housing support services during COVID-19

Scottish Care welcomes the Care Inspectorate’s enquiry report on care at home and housing support services during the COVID-19 pandemic, which highlights many of the issues that Scottish Care and its members have been raising over the last six months.

There is a real sense in which the care at home and housing support sector has been and continues to be the Achilles heel of our pandemic response, having been regularly overlooked or insufficiently planned for nationally and locally.  The report demonstrates that effective solutions have been reliant on good partnership relationships with the care at home and housing support sector at local level, but unfortunately the degree to which this happens and the sector is treated as a true partner remains extremely variable and often woefully inadequate.

The report highlights the fragility of the care at home sector and its workforce in terms of contractual and commissioned arrangements.  It shows that – not just as a result of the pandemic but in line with what Scottish Care has called for for some time – we need to change how care is commissioned in Scotland and this report comes at an important time in contributing to the recently announced Review of Social Care.

It also highlights the lack of real choice and direct engagement with people accessing support when decisions are being made which impact their care.  The findings highlight that ‘social isolation, disruption to daily activities, limitations on physical activity and the suspension of reablement adversely impacted on the health and wellbeing of people who experience care and carers.’  Positive support for these aspects is the essence of what social care is and can do for people.  The facilitation of positive wellbeing, preventative care approaches and support to maintain or regain independence cannot be achieved in 15 minute visits by a workforce paid by the minute through restrictive, task oriented local contracts.

There is clear evidence, highlighted in recent NRS data, of a disturbing increase in excess deaths in the community and more work is required to explore the relationship between the removal or reduction of homecare supports as a pandemic response and the impact and experiences of people supported in the community.  To date, Scottish Care has seen no sign of the extent to which care packages are being reintroduced and if they are, what appreciation exists for the deterioration many people have inevitably experienced in the last six months.  Assessments must happen and must reflect the changes that have occurred in people’s lives.

This is another example of an important report highlighting the fragmented and precarious social care system we have rather than the integrated and properly valued system that we need.  Its recommendations should be treated with the urgency and priority they require.


The Care Inspectorate report is available here.