I was in London this past week and had a couple of hours to spare between meetings and on the recommendation of a colleague I found my way to the Design Museum in Kensington. The building itself and its displays are well worth a visit – not least as the air conditioning is fantastic in a city with 30-degree heat even when I was there! But I was there specifically to see an exhibition curated by the Design Age Institute in collaboration with the Design Museum, The Future of Ageing, which explores ‘how design is transforming the way society can support everyone to age with greater agency and joy.’

I have written quite a few times in this blog and elsewhere about how we need as a whole society to reconceive the way in which we design the built environment to better include and accommodate the needs of an ageing population. Specifically, I have suggested that we need to stop building aged care facilities separate and apart from the communities in which people  actually live. I have remarked about how ridiculous it seems to me that so many of our housing developments are inaccessible to the needs of a population which will become the dominant group within the foreseeable future. I cannot remember the last time I was in a modern built housing estate which had an adequate mix of bungalows or at least accessible accommodation.

The Future of Ageing exhibition was interesting, less from the perspective, that it was coming up with starkly original designs or suggestions but more from the fact that it argued about the urgent criticality that the whole design community, from technology and robotics, from townscape to rural environmental planning, from kitchenalia to social media, have all to seriously start accommodating the needs of a population who will soon be its majority customers and consumers. In so doing designers have to involve older people in the design process and have to stop treating older people as a homogenous group as if older age is bereft of difference and diversity.

The exhibition highlighted an often-ignored reality that although by 2040 more than a quarter of the UK’s population will be over the age of 60 what is less well known is the fact that over 70% of that ageing population will not be needing support or assistance in normal and daily tasks and activities. Those of us working in social care have a narrowed perspective for obvious reasons, but it is true today and hopefully even more the case tomorrow that the vast majority of older people will not need care and support until a very late stage in life if ever. Yet as a society we continue to view older age so negatively, as a deficit and as something which limits ability perhaps especially in the world of design. As the exhibition declares it is time to put some joy back into ageing which was put succinctly by one contributor in a short and incisive video when he declared “Don’t let people with no abracadabra stop you from making magic!”

‘The Future of Ageing display celebrates how design can help us reimagine products, services and environments to enhance our experience of living in later life with a selection of prototypes, sketches and research from projects that are being developed by Design Age Institute and its partners.’

One of the prototypes I enjoyed the most was ‘The Centaur’ – a self-balancing, two-wheeled personal electric vehicle for people with difficulties getting around. Its inspiration and designer is Paul Campbell from Centaur Robotics who asserts that “I want to end the social isolation resulting from reduced mobility and I believe good design can do that.” The Centaur is designed for the world as it is – it can fit through normal-sized doorways, under desks and tables, and gives a significant degree of autonomy to the person who uses it.

There were several insights within this exhibition but the one that left a mark on me was the statement that we should stop seeing the world around us as one we need to change in order for people to fit in but that we should enable people as they are to better fit into the world as it changes. The argument of the past that it is the environment that ‘disables’ and so we must change it to enable inclusion, is put aside by the assertion that we must equip those who are ageing to enable them to better use the world, adapt to their environments as they find them, rather than to seek to change the world around us. I personally think the issue is a both/and but I cannot deny the practical insight of someone like Patricia Moore who is an industrial designer, when she asserts, “Stop designing for disability and start designing for usability.”

From ‘Gita’ – a hands-free cargo-carrying robot, the ‘Home Office to Age in Place’ – created to integrate flexible living and working space for later life, and ‘Hearing Birdsong’ – a digital ‘audioscape’ app that uses the sound of birdsong to engage visitors with their hearing health there is a lot to see in this small exhibition but all the designs have one thing in common and that is they perceive age as a positive source of inspiration and enjoyment, rather than something to be ignored and excluded.

But the challenge for us all is to look beyond the stereotype and presumption and to re-design the world around us so that it becomes truly inclusive, as one participant said of age in general: “It’s not the way you look  it’s your outlook that matters.” For after all as the hashtag of the event declared #WeAreAllAgeing

Donald Macaskill

It is eleven years ago today that the ultra-talented Amy Winehouse died from alcohol poisoning at the age of 27. She is best remembered for her famous songs’ ‘Rehab’ and ‘Stronger Than me.’ I first saw Amy on the Jools Holland Show early in her career and could immediately recognise a talent which went beyond mere ordinariness or description.

Amy Winehouse did not have an easy life with periods of drug and alcohol addiction, mental health and relationship challenges. Her album ‘Back to Back’ became the UK’s bestselling album of the 21st century albeit for a short time.

I have been thinking a lot about Amy this week partly because of her music but more directly because of her story and the grief and loss that results in those left behind following such a traumatic and sad death.

In my own personal and professional life, I have witnessed first-hand the raw reality of the way in which alcohol and drugs can change a person and devastate a family. The death of a loved one to addiction empties a person like nothing else and so often that emptiness is filled with questions and guilt, with a sense of ‘if only’ and of regret, and with a continual self-examination as to whether you could or should have done more.

I have always admired the work of Scottish Families Affected by Alcohol and Drugs. https://www.sfad.org.uk . I was therefore very pleased this week to have had the chance to meet a colleague from that organisation. They do a wide range of work including a focus on bereavement support and most of it is undertaken at local level. When someone in your family is affected by alcohol or drugs one of the main things you feel is a sense of isolation and aloneness and the way in which SFAD and others can help connect you to others, to limit the isolation, to support through mutual understanding and connection becomes invaluable.

My primary reason for speaking with SFAD this past week was to form links between their bereavement work and the work of Scotland’s National Bereavement Charter. The Charter, whose organising group, I am honoured to chair, is growing from strength to strength with new resources being developed all the time to help anyone across Scotland be better supported in their grief and loss. The aim of the Charter is to ensure that anyone who requires support and care following a bereavement is able to access that and that Scotland becomes a world leader in a human rights-based approach to grief and bereavement. Those who lose loved ones through drug and alcohol deaths have an especially hard journey of grief and loss and it will be a mark of the Charter’s progress as to whether or not we are able to make their journey any easier.

One critical dimension experienced by so many who experience the death of someone to alcohol and drugs is the societal stigma that often accompanies such a death. Someone once described this to me as ‘furtive grieving’, her felt sense of having to hide the cause and reason for the death of her son to a heroin overdose because she felt that others would dismiss both him but also her pain, grief and loss as somehow ‘self-inflicted.’  She told me it took a long time for her to stop saying her young son died of a heart attack and to be open about the reasons for his death and that that openness helped her in her grieving.

In a heart-felt plea in the media this week, David Strang, the chair of the Scottish Drugs Deaths Taskforce spoke about the newly published “Changing Lives” report which makes 20 recommendations and 139 action points that it says will help turn around Scotland’s record drug death numbers. The shocking and sad statistical truth is that in 2020, 1,339 people died as a result of a drug overdose. The report calls for the creation of a national stigma action plan because of the reality that societal stigma and discrimination results in not just personal and family trauma but in unnecessary death. When deaths do happen, that stigma continues to re-enforce discrimination and makes grieving and bereavement all the harder and more painful.

Grief shrinks you. It makes a person small in their body. It shrivels up hope and dreams. It’s emptiness echoes with a silence no sound could ever soothe. Grieving the loss of a loved one to drugs and alcohol makes many feel like they need to hide their grief and so makes bereavement unnecessarily traumatic. We desperately need to transform cultural and societal attitudes to alcohol and drugs not only so that lives can be saved but also that when loss does happen grief can be freed from the shackles of societal disapproval and discrimination. The tragic legacy of someone like Amy Winehouse should be not only her amazing music but an urgent need to end the stigma around all drugs and alcohol deaths, to encourage society to start a mature debate on all the issues without the stance of moral superiority that often occurs, and importantly by so doing to let loved ones who grieve be able to make that journey in openness without societal stigma.

Donald Macaskill

Summertime is often the time of year that I manage to do some reading separated from the normal rhythm of work issues. Over the last couple of weeks in amongst the usual whodunnits and attempts to see merit in ‘bestseller’ lists, I have also been re-visiting some thoughts and texts which I had put aside for that elusive ‘quieter time.’ In that vein I have been exploring some writings around the concept of ‘generosity’ especially as it relates to social care.

Generosity is often dismissed as an old-fashioned concept but I’m very much of the opposite view believing that generosity as a concept needs to be more embedded in our individual and societal discourse. In fact, the last week busy as it has been with political intrigue and debate has struck me as one that would have benefited greatly from a bit more generosity of spirit and action. But more significantly having had the privilege of witnessing so many acts of compassion and care over the years at the hands of both paid and unpaid carers I am convinced that generosity is wired into humanity but also that it needs to be cultivated, nurtured, and promoted.

The dictionary defines ‘generosity’ as ‘the quality of being kind and a willingness to share.’ Many psychologists have argued that by inherent and instinctive nature people are generous, that they act in ways which seek to better another and to benefit those around them. They have stated that the innate predisposition of children at an early age is not to be selfish and narcissistic but to help others. What is more there is an abundance of research evidence which shows that being generous to others is of psychological and emotional benefit to ourselves:

“A growing body of research has revealed numerous psychological and physiological benefits of giving, challenging common conceptions about the relationship between money and happiness. In 2008, for example, Norton and his colleagues conducted a study where they gave $5 or $20 to people and then instructed them to spend it either on themselves or someone else.

Later that evening, the researchers checked in with the participants to see how they felt emotionally. The group that gave money to others reported feeling happier over the course of the day. What’s more, the results showed no emotional difference between people who received $5 and those who got $20. “  (from How generosity changes your brain – Big Think )

The act of giving is something which might indeed come easier to some than others but it is clearly at the core of social care and support. Being generous with one’s time and skills, with knowledge and ability are a tremendous expression of mutuality with another, especially perhaps someone to whom one is not linked to in any other way than through work and professional role. But the real dynamic of generosity which is at the heart of care support and indeed all of social care is the generosity of individual humanity. When you support or care for another you give of your self – there is a dynamic exchange which alters you. You are and become a different person when you support and care for another. I am not denying that there is a cost to care and an element sometimes of sacrifice, hurt and pain in the compassion and support given, but in most instances the person caring is changed in a  way that helps to fulfil their humanity.

I personally think this generous essence of care is what makes care support a unique profession and role. Over the years when I have met and talked to people about the jobs which they do in social care they have often used phrases such as “It makes me feel better,” or “I get such a buzz out of giving to others.” This is generosity in action, an act and way of being with others which changes the recipient but equally which changes the care giver.

Our society would benefit a great deal from such a spirit of generosity in all our interactions and exchanges, and it would be changed were we to recognise that we need to do more to value and reward those whose essential roles are to be generous to others.

All this is wonderfully captured in ‘When Giving Is All We Have’ by the contemporary American poet Alberto Ríos.

When Giving Is All We Have.

One river gives

Its journey to the next.

We give because someone gave to us.

We give because nobody gave to us.

We give because giving has changed us.

We give because giving could have changed us.

We have been better for it,

We have been wounded by it—

Giving has many faces: It is loud and quiet,

Big, though small, diamond in wood-nails.

Its story is old, the plot worn and the pages too,

But we read this book, anyway, over and again:

Giving is, first and every time, hand to hand,

Mine to yours, yours to mine.

You gave me blue and I gave you yellow.

Together we are simple green. You gave me

What you did not have, and I gave you

What I had to give—together, we made

Something greater from the difference.

https://poets.org/poem/when-giving-all-we-have

Donald Macaskill

I well remember how much effort was put into the planning of the birth of a new child and its arrival into the world. So many hours making sure the right clothes were bought, the cot was built properly, care seats fitted and tried, the pram was ready and so on. And then the actual birth – the planning process around birth is unrecognisable today compared to the experience any woman might have had in the 1960s or 70s.

Childbirth and early years must equate to one of the most planned and prepared for moments of our lives. That sense of planning continues to a lesser degree as we go through life and grow up. Whether it is our education and career choices, our university or college, our vocation or job, then through the various stages of relationships and partnerships, our first flat or home, a marriage or engagement – there seems to be no limit to the times to plan, schedule and prepare. Then we get older, and we age. And the planning seems to diminish if not entirely disappear.

Perhaps it is the demise of the life-long career or the ending of the statutory retirement age or the unpredictability of modern pensions, but it strikes me despite all the pressure and focus, the encouragement and emphasis, that fewer and fewer people prepare for post work life or for older age in general.

The positivity of human demography in Scotland is that most of us will live longer than our forebears and our children and grandchildren will live even longer. The challenge is few of us do so with an abundance of good health.

We are now into the second year of the United Nations Decade of Healthy Ageing and I am increasingly of the view that the way we today view ageing is anything but positive and healthy. In fact to some degree, I think the pandemic and our response to it internationally as well as in the UK has put us back years in terms of challenging age discrimination and the valuing of older age in particular.

The Decade (2021-2030) aims to be:

‘a global collaboration, aligned with the last ten years of the Sustainable Development Goals, that brings together governments, civil society, international agencies, professionals, academia, the media, and the private sector to improve the lives of older people, their families, and the communities in which they live.

Populations around the world are ageing at a faster pace than in the past and this demographic transition will have an impact on almost all aspects of society. Already, there are more than 1 billion people aged 60 years or older, with most living in low- and middle-income countries. Many do not have access to even the basic resources necessary for a life of meaning and of dignity. Many others confront multiple barriers that prevent their full participation in society.

The COVID-19 pandemic has highlighted the seriousness of existing gaps in policies, systems and services. A decade of concerted global action on healthy ageing is urgently needed to ensure that older people can fulfil their potential in dignity and equality and in a healthy environment.’

The Decade has four focus or priority areas for action, namely age friendly environments; combatting ageism; integrated care and long-term care.

I was reflecting recently on the relative lack of progress in terms of the Decade with some colleagues and on the growth of what I consider to be even more ageist attitudes in the last few years as we responded to a recent consultation on healthcare and older people. In particular the consultation asked for perspectives on the role and value of what is called ‘Anticipatory Care Planning.’ These are plans often prepared with an older person post diagnosis of a serious illness like dementia and cancer. They come in various formats but consist of a description of choices and desires around deteriorating health and potential loss of capacity and personal control.

I think there are emerging views that the negative experience of some people with DNACPRs during the pandemic has made the work of developing ACPs harder. But apart from the unhelpful association with negative pandemic practice I think one of the basic needs is that we as a whole society need to re conceptualise our planning into and for later life, for ageing in general and to develop and nurture much more positivity than we currently possess for older age.

Work needs to be undertaken to ensure that planning is part and parcel of later life and ageing and that maybe even the term anticipatory care plan is one that we need to ditch. Planning for later life does not need to be about planning for decline and deterioration or for the inevitability of care and support. Why instead should we not broaden out planning for later life away from the narrow confines of health and social care? Why should we all rather not be encouraged and resourced to create a Later Life Plan, or an Ageing Plan?

Now I immediately recognise that for so many of my fellow citizens this seems illusory or even a waste. There are, I fully acknowledge countless thousands who simply do not have the capacity or resource to ‘plan’ for their future, so busy are they with simply continuing to exist and meet the basic human needs. Such poverty in older age should shame us but should equally be an incentive to ensure that whole life planning becomes fully inclusive of older age.

I think as part of this we urgently need to reform the way in which pensions and support in later life is offered, including the inequities of funding for some parts of social care and health and not others. We cannot achieve the laudable aims of the Decade of Healthy Ageing without seriously addressing the structural and systemic issues which fail to prevent ill health, mitigate against measures to protect, and which disable our ability to address the diseases of older age, not least mental health, and wellbeing. We need, I would suggest, a radical non-partisan and politically independent commission on older age across our society to meet the Decade’s aims and aspirations. Instead, we have piece meal strategies which regurgitate promises and past policy without venturing into new ground and possibility.

We need to both individually and collectively plan for the future of ageing as a positive prospect and possibility rather than to react to ageing as something accidental or by  happenstance. Only when we individually and societally start to plan and resource positive ageing will we achieve both healthy and holistic older age. Let us put as much focus in later age as we do in preparing for birth and new beginnings.

Donald Macaskill

The following is based on a contribution to the inaugural session of the Human Rights and Social Care Forum created by Dr Caroline Green, Kings College London, which was held virtually last Tuesday.

If not here, where?

The recent past has cut itself into our hearts like a sore wound. There will be other opportunities to more fully reflect on the wider and detailed lessons of what the last two and half years mean for our society, for the way in which we value older age and in particular dementia as well as the relative priority we give to the resourcing and recognition of social care and its workforce. There will be time to reflect on what I have elsewhere described as the conscious and unconscious inappropriate limitations of human rights – not on all occasions but at some specific times and moments.

It has been a time of hard harrowing and a winnowing of our hopes.

But I want to look both forward and back in the space I have been given, not least as I strongly believe that the legacy of such pain and terrible grief should be healing and if required deliberate and focussed action and purpose. If we do not plot our future we are much more likely to navigate into trouble and trauma.

I have a fundamental question to ask this afternoon about human rights in care homes and indeed elsewhere. The question I think we have to ask and answer is –

How do you enable someone to ‘realise, fulfil and flourish in their human rights, to be treated with equality and in a manner that recognises their unique dignity, and which fosters their sense of independence and identity?

There will be numerous responses and answers to that but for me it has to be about a rediscovery of the individual as the central focus of the human rights response.

We need to rediscover an individualised and personalised approach to human rights.

The reason I am saying rediscover is that the pandemic has shone a cruel light on the way in which we have collectivised our response to human rights to a cost of very real pain and loss.

At heart we have – and by we –  I mean society in general, politicians in particular, clinicians and epidemiologists, and those who provide care and support services – we have failed to treat individuals as unique and distinct and not part of a collective – our whole emphasis has been on keeping everyone safe rather than letting the citizen decide and lead.

Now doubtless some might hear these words as a utopian illusion and that in a critical situation of unparalleled threat it was necessary to a degree to sublimate the wishes of the individual and to focus on what would bring fastest remedy, safety, and security. There is much truth in such an assertion. If you are in a capsizing boat then it is often desirable to have strong, directive almost dictatorial leadership, from someone who knows how to rescue the situation – quite literally. But that appeal to emergency and urgency, the vestige of defence from hindsight and a lack of knowledge in the moment, can become a casual excuse for failing to act in an emergency or crisis in a manner which upholds individual rights and yet still protects the majority and fulfils the desire for response and safety.

I am not suggesting that every piece of clinical guidance during Covid should have gone out for extensive consultation, that the only way to uphold rights is to act in a manner which delays response, but I am saying that the presumption that you do minimum engagement, and that you develop guidance and introduce intervention without involvement is an erroneous and dangerous approach. The individual resident, family member or staff members and manager are the experts in the care home environment.

Moving forward I do not think ever again in pandemic response – oh and in passing was there ever a human rights impact assessment undertaken on the pandemic planning processes? (which were themselves wholly inadequate and lacking inclusiveness) – I sometimes doubt it.

Moving forward – there cannot be again a one size fits all approach to pandemic response. For me this was critically illustrated by the approaches to public health and especially to infection, prevention and control measures. In the early days there was a failure to properly contextualise approaches for preventing infection which may have been appropriate and attainable in an infectious disease hospital within an acute health environment but which paid all but lip service to the environmental dynamic of a care home, to the fact that this was primarily someone’s home where they lived not where they were treated or cared for, and to the critical importance of attachment, association, or simply plain love, being with family and having contact, routine, ritual and a diversity of experience. It was – and to a considerable degree – still is a process of IPC which puts the collective, the environment before the individual and the person. We can, must and should do better not just in any future Covid outbreaks but in facing any future risk from an infectious disease.

But how can we protect the individual rights of the person who lives in a collective or group dynamic such as a care home?

This was before the pandemic the central question often ignored, during it was a continual cause of pain and upset, and now and into the future I think is the singular most important question.

Passing laws is one good and necessary step – and in Scotland the changes to the Health and Care Standards enabling a right to visit during outbreaks, and the incorporation of Anne’s Law into the new National Care Service which is being developed – both are positive steps – but let us be honest – we had wider human rights law at the start of the pandemic but a systemic failure to utilise, respond and to adhere to these. Law is necessary but not sufficient.

I am convinced what would make the difference is if all involved become confident around the embedding of human rights in aged care – not just aware – but confident. That can only come through increasing knowledge and awareness of what a human rights-based approach is not just on paper, in theory and text, but in practice, in daily care home life, in the dynamic of relationships.

And that of course is the heart of all this – human rights are about relationships not texts or codicils – their origin in the modern context following the horrors of the Second World War – was to put right the relationship between peoples but much more importantly to begin to reframe and understand again the rights of the individual in a time of crisis, in a community of difference, and in a society where you may not feel that you belong.

Recently I have been spending some time reading the writings and works of Eleanor Roosevelt who was such an inspirational leader at the time of the development of the UN Charter in 1948, and who later President Truman described as the First Lady of the World.

Her words are famous – perhaps the most famous is her sentiment that unless human rights happen in the small places, the ordinary interactions, the mundaneness of human living then they mean nothing. She said:

“Where, after all, do universal human rights begin? In small places, close to home – so close and so small that they cannot be seen on any maps of the world. Yet they are the world of the individual person; the neighborhood he lives in; the school or college he attends; the factory, farm, or office where he works. Such are the places where every man, woman, and child seeks equal justice, equal opportunity, equal dignity without discrimination. Unless these rights have meaning there, they have little meaning anywhere.”

But in other writings and this is why I think her words need to resonate today for care homes, residents, staff and others she wrote about how important it was that we did not so collectivise human rights ; not just to focus on what they mean for a country, a nation, a group, but that we always understood that we need to start with the individual and what human rights means for the person.

Signing up to the latest Charter, embedding a covenant in national law, proclaiming you uphold human rights and are a human rights nation means nothing unless it means something to the individual person.

That is why I think we have a real task in care homes. Because like it or not a care home can indeed become a homely place, but it is not identical to one’s own home, because in your own home – by in large – you have choice and control over who you live with, who is your company, who shares your space and place. A care home is inevitably a place of congregated living and exchange, a place where we might get on with the majority, but there might be some we would rather not spend time with.

How then do you do human rights in such a place? How do you as a manager deal with someone quite rightly asserting their Article 8 rights to family life and wanting family to be present but at the same time deal with someone else who for whatever reason, perhaps fear and anxiety, are not wanting you the manager to allow anyone in to visit during an infectious outbreak. Ask any manager and she or he will say – this is the stuff, the mess of ordinary living.

If we take a scenario outwith the pandemic – how do you manage competing interests in terms of activity, or leisure; disagreements over relationships and friendships, disputes in regard to all the other choices which we are asked to make in care home and collective living life?

We have I believe to find a way to restore the individual in human rights in general, and specifically within aged care facilities. But I do think that there is a potential for a human rights-based approach developed in a care home environment to be able to speak to the wider and more general question of balancing the individual and the collective.

Long before the pandemic the Scottish Human Rights Commission developed a project I was proud to be associated with. It was the Care About Rights work and it sought in all social care settings to embed a process of conciliation and decision-making where human rights, equality and inclusion were held in creative tension. It centred around a decision-making process called the FAIR model and I would commend it to you.

It is not easy – it has to do with the mess of living and loving; it will not always work but it provides a framework for talking and action, for reflecting and relating.

We are all diverse and different and in that is the glory of humanity. Care homes at their best are about enabling the flourishing of individual life first and foremost and through that the enabling of what it means to live in loving tension and growing community one with the other. They have the potential of being the best form of human community as we age and sometimes as we struggle with illness and conditions which limit our individuality.

Eleanor Roosevelt also said:

“Remember always that you have not only the right to be an individual; you have an obligation to be one. You cannot make any useful contribution in life unless you do this.”

Let us in her other words create a future where the individual is prized above all – in creative human rights-based intention in our aged care facilities. If we want to make human rights real then they have to be meaningful for the individual resident, family member, worker and carer in our care homes. If not here, then where?

I leave you with some of her other words:

“The future belongs to those who believe in the beauty of their dreams.”

Donald Macaskill