Like many others working in social care I receive invitations to attend events and conferences. This week I have received notification of no less than three conferences in the next two months looking at the issue of loneliness and isolation both during the pandemic and before/beyond it. Loneliness seems to be an issue of real concern at the present time.

I don’t suppose any of us would have imagined in March that as a society we were going to be starting a process of months of social isolation and social distancing, being physically apart from those who matter to us and distant from those we know and love. For many of us that has been very hard indeed but the slow return to connection and relationship has been one of the few positives over the last few weeks of summer. But this sadly is not the case for everyone.

In a world and at a time when relationship and connection seem to be all the more important there are those in our communities who are dis-connected and alone.

At the height of the pandemic I received a call from someone who before Covid19 led an active life contributing to a diverse range of organisations and groups. To do so they required the support of a carer because of their own life-long disabilities. With the start of the pandemic all that disappeared as their social care package was reduced and then frozen. Virtually overnight they became disconnected, deeply impacting on their sense of self and identity. For this individual isolation meant a loss of more than simply being able to be out and about, it stripped them of their confidence and self-esteem. Incidentally like so many this person’s package of care and support has still not been renewed. They have been told that they seemed to have ‘managed’ without paid care!

Coronavirus and the imposed lockdown has deeply impacted thousands of individuals and created for them a sense of loneliness and isolation. In June an ONS Opinion and Lifestyle Survey found that about 1 in 4 people aged 55-69 and almost 3 in 10 people aged 70+ felt lonely in the preceding week. There have also been a range of academic papers and studies highlighting the degree to which people of all ages have felt lonely and isolated during the lockdown.

It is clear even at this early stage that this has and is having a profound impact on mental health and wellbeing. What might surprise some is that those most impacted by loneliness have been those in younger and middle years. Sadly, for those working in social care this may not be a shock – mainly because we have known that older people have experienced loneliness and isolation for many years!

In a world which presupposes relationship as being intrinsic to well-being years of research have shown us that loneliness is the day to day, week by week, month by month experience of older people in Scotland. One survey by the National Campaign to End Loneliness undertaken a couple of years ago found that of the older population of the city of Glasgow, it is estimated that 10% can go days or weeks without having any contact with anyone. It stated that loneliness and its impact can have such negative health determinants that it is the equivalent of smoking fifteen cigarettes a day.

With over 1.4 million people in the United Kingdom reported as being lonely, the issue has been known for years. During Covid19 an estimated 6.1 million people were living on their own, of whom around 2.2 million people are over 75. For millions Covid19 lockdown was a time of real loneliness and deep isolation.

As we come out of strict lockdown and as we prepare for winter and the challenges which it will bring in our management of Coronavirus I think it is urgent that we address now issues of loneliness and the hugely negative impacts that isolation can have on the health and wellbeing of people. It is clear that this has been the case in our care homes. However, the impact of isolation and loneliness in our wider community has not received the focus and attention that it urgently requires. Without any sense of hyperbole loneliness can kill.

Now lest I get accused of over-simplification. I recognise that for many being on your own is not intrinsically negative and admittedly much of the recent debate has ignored the benefits of solitude. There is a world of difference between social isolation and forced loneliness over which you have no control and which you do not desire, and the reality for many which is a decision to be single and alone. There has been an automatic presumption of the negativity of aloneness in much of the consideration of these issues. So, what we need rather is a serious debate about what loneliness is and what interventions are needed, which will be beneficial for both the individual citizen and society as large. That is a debate we urgently need to have in these mid-Covid times.

I hope as we consider the impact of loneliness we also reflect on what social care can bring to that debate. Social care in essence is not about engaging in a set of transactions and functional tasks rather it has at its heart the enabling of individual citizenship and the fostering of relationship. In decades gone by the person who used to be known as the ‘home help’ was an individual who not only carried out daily tasks but much more importantly spent time with and gave time to those they cared for. They were the eyes and ears of protection and prevention, they were the carrier of community insight and gossip, they were the ear to listen to and the person to unburden upon.  When we stripped out this element of care in the reforms of homecare in the 1990s we lost not just individual characters, but we lost a sense of connectedness and cohesion. Care is about a relatedness which reduces isolation and fosters connection by creating community.

Moving into the autumn and winter I hope as we restore packages of support and care in our communities, as family members return to work and ‘paid carers’ take over, I hope we use this time to address the challenges of loneliness. Now is the time to change our view of what homecare is all about. Now is the time to restore time, relationship and connection.

For years people like me have criticised the way in which as a society in Scotland we have apportioned and commissioned social care for our older citizens. Before the pandemic Scottish Care estimated that at least a third of Scottish councils commissioned 15-minute visits for the provision of personal care. Despite all the political rhetoric to the contrary we still have thousands of people experiencing the indignity of the degrading practice of flying visits. For many individuals receiving support at home, 15-minute personal care visits barely allow for tasks to be completed, let alone to develop a positive relationship between the individual and their carer. Never mind the battery care-hen pressures they place on the worker by electronic call monitoring and checks.

We must surely use the opportunities presented by Covid19 to invest more in the care of our older citizens in the community. Whatever happens with a second wave or with outbreaks and lockdowns we have to do better by those who require care and support in our communities. One way of addressing loneliness is to stop treating people as a problem to be solved but rather to empower them to be in control of their packages of care. That is what we have already in legislation (the Self-directed Support Act) but the system and vested interest and mantra has prevented real control and power being given to those who require care. Let us end 15-minute visits, let us pay for people to spend time with our older citizens, to be present rather than to be clock-watchers for the next call.

A society where loneliness becomes a political policy priority, but not where the same political system is prepared to allocate resource to address the issue is less than it should be; a community where contact is reduced by the arithmetic of affordability does not in any sense value those who it should care for; and a place where older age is considered to be beyond contribution – such a society needs to rediscover the essence of a love and regard for others, which would be a true pandemic legacy.

Loneliness is not just the absence of others rather it is that emptiness created by absence which reaches inside a person and holds them. It is the sense of physical and emotional abandonment and complete aloneness; the sense that no one is there for you, no one is listening to you, and no one is truly hearing you. That tragically is what too many feel today. A social care system worthy of its name should seek to support and uphold not just by care but by being ‘social.’

Donald Macaskill

@DrDMacaskill

 

 

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

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 15^th 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