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Care Home Day blog from our CEO

Care home as community.

If you look up the dictionary you get loads of definitions for what a community is. Its described variously as a unified body of individuals who have common interests living in a particular area; or its defined as the geographical area itself or pictured as a body of persons of shared and professional interests scattered through a larger society, and so on.

But actually, when I think of the word community it combines all that sense of space and place, of people and belonging. When I picture community, I see faces and folks, a sense of togetherness and attachment; a sense of arrival and coming home rather than travelling to a destination. For me a care home is a superb living example of what a community is all about.

Today is Care Home Day and I am very pleased to be able to write a few thoughts on what a care home community is all about.

In the last few months we have seen witnessed in our care homes a story which has shown the absence of the characteristics which make up a normal care home. These are places of interaction and engagement, full of banter and gossip; spaces where people come and go, of busyness and belonging. If you want to seek solitariness and silence your average care home is probably the last place you should go.

In the last few months, however, as the pernicious Covid19 virus began to impact upon the whole world, care homes have become places of quiet; of curtailed activity and limited engagement; locations which have sought to isolate individuals in a desire to protect and keep them safe. Far from being places of busyness they have become withdrawn, far from being places which reach out and pull the wider community in, they of necessity have had to shut their doors and seek to keep out family and friend, young and old alike.

That is one story of the last few months. It is a hard story whose lessons we must learn and whose pain we must feel. But care homes even in these hard times have still been places of community. They have seen and heard words of love, care and compassion; they have witnessed the gentle presence of comfort in the midst of fear; solace at times of sadness and reassurance in moments of anxiety.  The staff in our care homes have gone beyond calculation in their dedication to those they support and residents themselves have sought to support one another in these challenging days.

A community is not just a physical place or even the gathering together of people with shared interest. A community is a place where you can be wholly who you are without pretence or mask, where your humanity can be honest, and you can be comfortable in your own skin. I have lost count of the folks who have said to me that moving into a care home was the best thing that they had done in their life. From loneliness they have found company, from isolation they discovered a sense of togetherness, from mental distress they gained restoration. That is the real sense of community in care homes in ordinary times.

It is hard to think of normal times when we are still in these strange days but despite all attempts of Covid-19, there is a beating heart within a care home which is pulling us back to those better times. There is a rhythm of comfort and care which despite challenge reminds us that care homes are communities where the best of what it means to be human is on display every day. Care homes will again become places where song and togetherness, exercise and competition, encounter and memory sit together and ruminate over time. They are places where people dream not solely of the past but of what tomorrow might hold. They are places where there is such brilliant original artistic and literary creativity. They are places where the young learn the lessons of age and where those old in age are enabled to become young in heart. This is the real story of community in our care homes.

So today as we recognise Care Home Day, we thank all involved in the last few months, we remember the sadness , loss and the hurt, but we also promise to work together in all our local communities to place our care homes in the heart of not just our concerns but of our daily living. Let us wrap round our care homes and let them find a place in the centre of all our communities.

Dr Donald Macaskill.

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

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

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

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

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

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

Those who work in social care know that the essence of good care is enabling an individual to exercise the fullest possible autonomy. It is the realisation that regardless of any cognitive or physical impairments that every human individual has the right to exercise choice, control and autonomy to the best of their abilities and capacity. Good care is about removing or limiting the barriers that prevent human autonomy and control.  It is about enabling an individual to be as independent as possible, it is about reducing dependency rather than fostering it.

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

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

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

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

In social care and health care it has become one of the core ethical standards that an individual must be involved in decisions about their own health and wellbeing.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Donald Macaskill

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Donald Macaskill

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Who cares for the carers? – new nursing blog for June

Who cares for the carers?

This is a term we have heard mentioned often over the years, but what is the answer?

Back in 2010, we saw the Caring Together Carers Strategy published, promising support and recognition for the role unpaid carers provide, building on the recommendations made within the early Care 21 report: The Future of Unpaid Care in Scotland.

Most recently in 2019 NICE (National Institute of Clinical Excellence) published new draft guidance which aims to improve the wellbeing of adults who provide unpaid care for people over 16 years old. The recommendations made tasked the local authorities and health and social care partnerships (HSCP) to identify how they provide support to carers. In the main, this was to assure that they would direct people to the appropriate financial, social and emotional resources that are available.

This month saw Carers’ Week celebrated and at no other time was this more poignant.

New figures show that 392,000 became unpaid carers in Scotland in a matter of weeks, caring for older, disabled or seriously ill relatives or friends during the pandemic.

This is on top of the 729,000 unpaid carers in Scotland who were already caring before the outbreak, bringing the total to 1.1 million.

Throughout the pandemic, we have celebrated the contributions of all health and social care staff but sadly there was not the same celebration provided for informal carers, with many having had to continue to manage with the limited supports available during the lockdown, but at what cost?

Being an informal carer may sometimes be a choice and can be very rewarding, but for many, it simply is a result of circumstance where people are left feeling duty-bound to step up and take care of their loved one. Some people may feel emotionally pressured whilst others simply do not wish to involve others. It is therefore important that we advocate where possible for those who feel powerless, who feel that they have no voice and that their concerns are not being heard. Despite recommendations, many continue to feel they are not listened to, which may make some reluctant to ask for help.

This undertaking is difficult enough when you are supported in this role but for a significant number of people, they simply are trying their best in an extremely difficult situation and often at a huge detriment to themselves emotionally, physically, financially and psychologically.

As the age of our population increases so does the age of those finding themselves in a caring role. We recognise that promoting healthier lives and living longer increases the possibility of caring duties.

Older people, some even retired themselves may have to look after their parents, who will be living to significant old age, as well as their own partners and perhaps even caring for grandchildren.

As time goes on, if no services are involved in supporting the care needs, the carers can often experience burnout which can result in finally asking for some help or for some making the difficult decision not to carry on.

Sadly sometimes the first that services realise someone is in a caring role is when either the carer or one they are caring for becomes unwell and appears at hospital.

Unfortunately, this was something I witnessed far too often over the years as a nurse and as a social work manager within the hospital, a sharp reminder that we are continuing to fail the most vulnerable people within our communities when you see an elderly man has lost his life and his wife that he cared for having to be placed in care. There are too many invisible vulnerable people within our neighbourhoods. We must promote the need to ensure people’s wishes are adhered to and facilitate the use of the power of attorney and welfare and financial guardianship to avoid the sad indignity that results when these protective measures have not been addressed. Having a relative sit for months in a hospital bed because they have no capacity and no legal rights to place someone in a homely setting is a real injustice.

As we move on from the impact of the pandemic this may be the case for many, as we have noted the traumatic effects of being confined as a carer during the lockdown, highlighting the responsibilities in caring for someone you love with limited resources and lack of social interaction.

We know that respite for some allows that time out, to recharge batteries to continue, however respite is not accessed by all for a number of reasons, with some feeling they are failing the person they care for, or that the person being cared for would become distressed at the thought of it.

This highlights the importance of firstly to offer this resource and secondly to ensure that the respite experience is one that gives benefit to both the carer and the person requiring care.

Respite care in Scotland has thankfully now changed and does not now necessarily mean the person has to leave their home, which provides greater flexibility. I can recall a young father who had a degenerative condition who simply wanted to allow his wife and sons a break but to have respite in his own home. Unfortunately, bureaucracy prevented this at that time and that sense of failure stays with you. Everyone should have the right to have care around the personal outcomes, especially with a life-limiting condition.

Older carers who are looking after someone with dementia can also find it difficult to cope with the changes in the personality of their loved one. People with dementia can become easily frustrated, aggressive, and suspicious of other people. This can be extremely damaging to the carer’s emotional wellbeing. We can all think of someone who has experienced this distress.

In 2015, an estimated 47 million people were living with dementia throughout the world, with this number expected to triple by 2050. Several studies have highlighted respite support is an unmet need for people caring for someone with dementia, this may be due to limited specialist places who offer respite, alongside the difficulties around this being communicated to the carer, and at times the carer’s inability to seek this information out. In addition, as mentioned earlier respite may not cause further distress and behavioural upset.

During the pandemic, this may have been compounded by a reduction in social work assessments, alongside some councils making the decision to change the criteria for access to care, which left many without additional support and only limited new care packages, with families requiring to step. Closure of daycare facilities has been viewed as a particular hit for many carers who have previously relied on the respite these services provides.

Scots who have started caring since the outbreak may have been able to simply because they were shielding or furloughed. We know many were new to this but some are also juggling paid work alongside their caring responsibilities, highlighting the need for working carers to be supported as they return to work. Estimates show that the care provided by friends and family members to ill, frail or disabled relatives is equivalent to £119 billion every year.

It is without question that services could not manage the demand if informal carers did not exist.

The six charities supporting Carers Week – Carers Scotland, Age UK, Carers Trust Scotland, Motor Neurone Disease Association, Oxfam GB and Rethink Mental Illness – promoted the need for further reform to happen which recognises and raises awareness of the role unpaid carers are playing during the pandemic and ensure they are supported through it, and beyond.

One success, however, was the recognition of unpaid carers as key workers with the right to access testing.

As reported by The Princess Royal Trust for Carers 65% of older carers have long term health problems or a disability themselves, with 69% saying that being a carer has had an adverse effect on their mental health. Older carers also report that their role makes it hard to find time for social life and isolates them from friends. We must also acknowledge that illness and disability in old age can create a large financial burden for some people. Carers may have to find the additional money to pay for specialist care or necessary equipment.

Over the next 30 years, the number of carers will require to increase by 3.4 million (around 60%).  Much has been spoken about this over the years but as carers become older themselves the ability to cope is likely to decrease significantly and result in crisis situations. Contingency planning and the need for more investment in community capacity building must be at the forefront of social reform.

As we acknowledge the fact that services will need to look different moving forward it is fundamental that we ensure that we don’t forget those within our communities who have undoubtedly been affected by the pressures of COVID and lockdown.

We need to move away from crisis management to avoid the unnecessary and distressing results that bring for carers and their families. People should continue to have choice and control and remain within their own homes for as long as possible even if they have 24 hr care needs.

The whole criteria of assessment of need, needs to be reviewed to ensure clarity and intrinsically have a preventative measure to avoid further failures in the future.

We must ensure greater recognition of the responsibilities carers are under ensuring their health, wellbeing and personal protection, especially as there is a significant potential risk of a second wave, bringing with it an additional loss of lives, as we move into the flu season.

We must advocate for reform and ensure personalisation, equality, respite and support that has a direct benefit to carers health and well -being or we are undoubtedly failing this country’s unsung heroes.

Jacqui Neil

Transforming Workforce Lead for Nursing

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Let care flourish… reflections on primary and social care

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

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

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

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

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

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

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

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

So, let care flourish.

Donald Macaskill

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

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

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

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

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

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

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

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

Who have been the leaders in these past few months?

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

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

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

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

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

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

To all who lead today. Thank you

Donald Macaskill 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Donald Macaskill

 

 

 

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The pain of isolation – thoughts for Dementia Awareness Week

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

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

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

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

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

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

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

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

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

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

Donald Macaskill 

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Balancing the scales: Covid19 discrimination and future promise

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Donald Macaskill

 

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A New Taboo – latest nursing blog

Working within the care sector dealing with death, dying and bereavement is intrinsic to the role. However, every episode of care that results in a death will have a different impact on individual staff.

The ability to cope with death in this way is managed by taking comfort in the fact that the person received the best care possible, did not suffer, and that their death was not as a result of neglect or poor delivery of care.

In my early nursing days, I worked in an Oncology ward. I remember the difficulty in trying to care for people newly diagnosed, alongside those receiving chemotherapy and those being nursed at end of life, all within the same unit. I decided to undertake a Death, Dying and Bereavement course to help me cope.

It certainly wasn’t the most upbeat course I ever undertook but it definitely opened my mind and my ability to think beyond what was simply happening. It referred to death as taboo, the subject that no one wanted to talk about and challenged me to ensure that talking about death and dying should be something that needs to happen alongside caring and compassion, to ensure good care.

Everyone who has nursed anyone can always remember someone that had a good death, and sadly someone who did not. Getting the time and the opportunity to go through the grieving process and reach a point of acceptance is what is considered by many as a good death. This allows decisions to be made which enables things to be planned as the person would’ve liked, wishes to be exercised and also lessens the burden on their family by preparing a will, and/or creating an advanced care plan. We all grieve differently and it is important to understand the stages of grief to help ourselves and others. The stages can be interchangeable and in time become less intense. On realising that death is imminent, most people initially experience shock and fleet between denial, fear, anger, bargaining and finally resulting in acceptance, if they can. This process can be typical for both the person dying and those close to them.

Loss due to Covid 19 has however presented different challenges. The rapidness in the deterioration for some people has resulted in the same depth of grief as that felt in a traumatic death.

Traumatic deaths due to accidents, suicide or murder often leave people feeling emotionally detached as they struggle to come to terms with a sudden loss.  Guilt in relation to an untimely death is very common and can result in some people never accepting the loss for many years, if at all, with some holding themselves responsible. Not getting the opportunity to say goodbye, not expecting the death or feeling helpless to change anything or intervene, all play a part in extending grief, loss and acceptance.

Initially in managing Covid 19 there is a move between active treatment and recognition that recovery is a potential, whilst at the same time an acceptance that death may be the likely outcome. The two extremes over a short space of time in itself is difficult to prepare for. Although we saw a number of Covid positive people within the care homes improve and recover, sadly a greater number did not, with care homes accounting for approx. 40+ % of Covid deaths.

For staff it has been difficult. In normal circumstances families would have the option to be present throughout the days leading up to someone dying or when acutely unwell, and it is recognised that families require this support in coming to terms with losing someone, as part of the ongoing bereavement process which allows questions to be asked.

Not witnessing the person receiving care to know they were comfortable, without pain and see first-hand the expert care they received can result in families not being able to process what has happened and why. Not having answers to questions or conflicting responses can negatively affect the behaviours of individual family members after the death. Restricting visits in the last few days of someone’s life or not being allowed to be present within the care homes directly contributes to profound feelings of resentment for not being present at the moment when their loved one passed. This enforced estrangement prevents normal healing. All these scenarios have unfortunately taken place as a result of the necessary lockdown restrictions.

Staff within the care home sector unlike other frontline staff know their residents. They have built up relationships with them and those close to them and therefore the pressures of decision making and communicating bad news is somewhat more poignant and difficult.

The lack of political prioritisation of the care sector and delayed staff guidance at this time has without question heightened the effects of caring for someone who is dying of Covid19 or other causes.

The inability to say goodbye in a way they would normally have been able to, to hold a hand or to simply kiss them goodbye are natural responses that have been taken away, would ordinarily directly impact an individual’s ability to cope with the grieving process. Not to be able to act out someone’s wishes is particularly difficult to accept. Funeral arrangement restrictions, the need for recognition of someone’s life, the adherence to support them through their religious and spiritual beliefs and the bringing together of mourners has been particularly upsetting. Covid19 has taken this away from so many, the individual person, the family and the caregiver.

The increasing volume of deaths experienced by staff working within care homes have been particularly traumatic. The residents have lost their lives due to their susceptibility to the virus as approximately 75% of all deaths have been in the 75 years and above age group.

This has been it extremely difficult for staff to accept and to safeguard residents. The management of the protective factors, access to PPE, lack and delays in testing and frontline response to the care home sector has undoubtably resulted in a significant number of deaths, which may have been preventable.

This has left many staff experiencing feelings of guilt as a result, despite them having no real control. Reflecting and debriefing under such circumstances has been considered as not psychologically beneficial as it may make someone replay a situation that could not have been changed.

Staff followed guidance as it was issued alongside the frontline response which should have supported staff initially as they were aware that care homes had a concentrated population from the most vulnerable group and therefore had the highest risk of spread and transmission.

This accumulation of deaths and the pressures around this, alongside negative press coverage at times has impacted on staff wellbeing and psychological ability to remain resilient, resulting in compassionate fatigue. Many staff left their own homes during lockdown to protect their residents, with approximately 40% of care homes having no Covid cases, which is remarkable and should be recognised.

People are experiencing loss in so many ways out width the work environment, also. Loss of physical contact, psychological, social, emotional and spiritual support. The rituals of everyday life have all been on lockdown.

Very few people have not been touched by the impact of COVID19 as we have all had restricted contact with our families and the constant daily reminder of the devastation and loss of lives.

 Let’s not forget that staff have to also come to work aware of the potential for them to become unwell from this virus and also the need to protect others, as well as their families, in the knowledge that sadly eight social care staff have lost their lives to this virus, alongside a significant number of  other health staff.

The ability to share grief with peers can go a long way to support staff and to find a way to remotely support residents families who are bereaved is also helpful, as it allows the channels of communication to remain open and support people with their loss to heal through this  complicated bereavement.

As we move out of this peak into the uncertainty of when this virus will be controlled the only real certainty is that life will never fully return to what we previously viewed as normal.

The taboo of talking about death and dying has certainly been tested with daily updates on death constantly broadcast into our living rooms over the last 10 weeks. Our ability to feel untouched regardless of age has been taken away from us, we learn more of how this virus turned into a global pandemic and how difficult it may be to eradicate.

With anything in life there is learning which will support us to cope as we move forward in our professional and personal lives. Strength will come from adversity and it’s important that we self- care and support the wellbeing of others.

The use of a safe place to take time out, to recharge and reflect has been highlighted as a useful way to reduce the potential of burnout. Leave needs to be taken and built in to also prevent this. It is important that staff don’t view this as a weakness but a necessary requirement to be kind to yourself, otherwise you will simply not continue to function.

Promis.scot is The National Wellbeing hub which pulls together fantastic resources highlighting the use of different available techniques to ensure staff are supported from the appropriate use of counselling, to the use of mindfulness.

An already challenging job has just reached new heights, but we must remember that whatever we are faced with we can simply only do our best with the resources we have available, nothing more, nothing less.

We are only human.

“There is some kind of a sweet innocence in being human- in not having to be just happy or just sad- in the nature of being able to be both broken and whole, at the same time.” ― C. JoyBell C.

Jacqui Neil

Transforming Workforce Lead for Nursing