The anxiety of age: the cost of living crisis and older age

Last week I wrote in my blog about the potentially devastating impact of energy cost increases on the care home and homecare sector in Scotland. In response to that several people got in touch to say that there was a dimension of the cost of living and energy increases that was rarely talked about in the mainstream media – namely the impact on older people who live on their own and on their health and wellbeing.

One correspondent put it fairly bluntly when she wrote:

“I feel as if what is happening around me is something over which I have no control. I am on a fixed pension which was a struggle at the best of times but allowed me if I saved to get some things for the grandkids. Now I am either going to have to cut off the heating for most of the winter or not be able to give my grandchildren what I want to. I am going to have to choose between love and heat.”

Despite my attempt to reassure and suggest what I think is a priority and which her grandchildren would consider a priority – i.e., to heat and be warm – I am ashamed that in 2022 an older woman who has given so much to her community and society, and to her family should be having to contemplate making such a decision.

But her choice describes the situation for countless thousands across Scotland today. Unlike those in work who can argue for an increase in their salaries to match the spiralling inflationary costs; or who can potentially work more in order to bridge the gaps – the vast majority of older Scots are on fixed incomes and pensions which at the moment are restricted. They are in a very real and costly Catch 22. The consequences of some of the choices they are making now and will make in the autumn and winter are devastating and, in some instances, might be deadly.

Professor Linda Bauld,  a leading academic at Edinburgh University and who has become a familiar face during Covid, yesterday appeared in the Herald saying that the steep increases in prices could spark a public health emergency with a rise in deaths.

She is quoted saying:

“We know from history that when people lack access to basic resources including energy and food there are health implications… Cold, damp housing exacerbates respiratory conditions for adults and children and results in worsening of symptoms for a range of chronic conditions.

“Not having enough money for transport means people can’t travel to appointments with health services or to collect prescriptions.”

There is nothing new in this reality, nothing new in the fact that older people are more vulnerable to winter deaths because of rising respiratory conditions; nothing new in the fact that more heart attacks occur after a cold spell and nothing new in the poverty faced by older Scots. What does not seem to be new is any political response regardless of where that might come from.

That is not to dismiss some of the interventions which have occurred, and I would encourage anyone who knows any older person to be aware that we are in the last week of being able to apply for additional assistance. People living on a low State Pension should check their eligibility for Pension Credit and apply ahead of next week’s cut off point on Thursday as it could mean an extra £650 of financial support which could help with rising energy bills. There are more details available from Age Scotland and others. But sadly, I suspect all the interventions to date will not prevent the major health emergency we are about to face as a whole society – unless action is taken  and all this said in a week evidencing yet more massive energy producer profits.

In an earlier study from Age UK it was stated that 220,000 older households in Scotland will have insufficient income to cover their essential spending this year. They estimate that the poorest older households in Scotland will need to drastically up the percentage of their net income spent on essential goods and services from 70% in 2021-22 to 87% in 2022-23 due to higher costs of living.

Every day we seem to be hearing yet more negative news with little action or comment from both the Scottish and UK Governments. It is one thing to respond to an emergency and have fault lines found in the response, it is quite another to walk into a nightmare fully awake and to fail to take action which could save lives.

Therefore, it is not only our care homes and homecare services which risk collapse and which will result in inevitable deaths in the coming weeks and months, but people at home on their own over the next few months who will be asked to make life and death decisions, and for many the wrong choice will inevitably follow, and for countless others there will be no choice at all.

Donald Macaskill

The straw that breaks the back of care

The last two and a half years have been a period which has been without equivalence for the care home and homecare sectors in Scotland. Regular readers of this blog will know that I have throughout sought to comment and reflect on the whole range of issues and challenges facing the social care of older Scots during this time. I found myself in a reflective mood this past week about the highs and perhaps more persistently the lows that people have been through these last few years. I was doing so because despite the challenges of dealing with an unknown deadly virus, the trauma of tragic deaths in care homes, the acute distress caused by visiting restrictions, the abandonment of those requiring support in their own homes, of disproportionate and inequitable processes such as Operation Koper, of misfiring oversight and scrutiny, of fundamental errors in guidance and clinical response, of an exhausted and burnout workforce, of struggles to recruit and retain amazing staff, of the limitation of fiscal support – despite all this care homes and home care organisations have kept going, kept caring, kept delivering care and compassion with the regularity of committed dedication and professionalism – until now.

Without a shadow of a doubt and with no sense of hyperbole I am now more worried about the survival of social care delivery in Scotland than at any time before or during the Covid pandemic.

We are living in the midst of a perfect storm and already in the last month high quality and excellent performing care homes have either closed or intimated their intention to cease delivery. The same is true of homecare organisations both closing their doors to new business and handing back care packages. The reasons are numerous and manifold from the struggle to recruit staff, inexcusable contractual practices, the critical withdrawal of funding for PPE and infection control at a time of rising Covid cases, astonishing increases in the cost of insurance and so much more. There are many reasons for concern.

But the proverbial straw which has led many to intimate to me they will simply not survive until the year’s end is the spiralling cost of energy combined with the wider cost of living crisis. This week’s dire warnings from the Bank of England of rising inflation and the increase in interest rates will add thousands onto the bills of many care organisations and will push even more of them to the edge of the survival precipice.

In the past week the media has been rightly full of stories about the sharp increase in energy costs for domestic consumers. I have warned previously that the increases in energy costs now and in October will lead many of our most vulnerable older people who desperately need a winter of warmth to place themselves in situations of risk to health and wellbeing. The increases have already placed tens of thousands of our fellow citizens into real fuel poverty.

Little attention has been given to the effect of energy price increases on care homes and homecare organisations. Simply put the cost increases have already been astronomical and have to date in the last few weeks led to some care homes closing their doors. A typical increase was shared with me this week. A small rural Scottish care home which plays a crucial role in its local community in the last year paid around £6,000 for its electricity and gas. Next year the cost will be £36,000. That is a sixfold increase for an organisation which has no private clients and whose residents are all funded by the State at a fixed rate. This is totally unfordable and without assistance that care home will close its doors and its residents will have to transfer to the local hospital or to other care homes should they be available. As I write this another email has landed on my desk stating a care home is being faced with a bill next year of £210,000 compared to £40,000 this year. And all this is because some care homes are renewing now when their fixed rate deals are coming to an end – and I shudder to think what October will bring.

I hardly need to say that the eye-watering increases in energy costs faced by care homes will lead many of them to shut and cease to deliver care. This will first and foremost be devastating for the residents of these care homes because we know that the trauma caused by care home closure has a life-shortening effect. Some of our most vulnerable citizens will become effectively lose their home and will have to either move to the local hospital or to another care facility perhaps miles away. The loss of home, of familiarity and shared company will be devastating on these individuals. Staff will lose their jobs and local communities will lose vital care services. At a national level a rise in care home closures which is presently occurring at an increasing rate will become a flood of closures resulting in very real pressure on the NHS with hospitals already overburdened unable to cope which will lead to unsustainable delays in discharge and will have a dramatic negative impact on all those who wish NHS treatment and care. Our hospitals will fill up and we will not be able to cope with the pressure. Simply put if the care service collapses and implodes because of the energy crisis then the NHS will follow soon after such is the dependency on both in the economy of care support.

In response to all this – what is happening politically? Despite people like me ringing the alarm bell for several months on this critical care energy crisis there strikes me as a degree of political head in the sand behaviour as the buck is continually passed. The former Chancellor Rishi Sunak announced a not insignificant intervention several weeks ago which will result in every citizen receiving £400 to support their energy costs. An equivalent intervention is urgently needed for the care sector, both homecare and care homes.

Today therefore I am calling on the UK Government to intervene and issue emergency funding to the care sector across the United Kingdom. I want both candidates for the Conservative Party leadership and the Prime Ministership to intimate what they are going to do to save the care sector in the United Kingdom and prevent the effective collapse especially of smaller, rural and remote care homes.

In Scotland we have a higher proportion of care homes run by smaller organisations, often family run establishments and charities. We are in a highly vulnerable situation and these organisations have no capacity to pay the mind-boggling fuel increases being demanded of them. As most of the care home and homecare provision in Scotland is paid for by the State then to maintain care the State needs to pay more or risk both personal trauma for residents and whole health and care system collapse.

The challenge facing care homes and care organisations is at a level no one can ever remember. I have had people in tears this last week wondering how they are going to survive and how they will tell families, residents and staff that they cannot continue.

There is a need to treat this care energy crisis with the same degree of emergency financial intervention as was received during Covid. The situation the care sector is in in Scotland today is significantly riskier than Covid and will have just as dramatic an impact on life and the health of our vulnerable citizens. We need urgent action from the United Kingdom and Scottish Governments and need it now. Local authorities who are responsible for paying for social care are penniless as we have seen in the media this week in relation to threatened strike action and even the additional £150 million announced by the Scottish Government yesterday will not suffice. Only Northern Ireland has acted – in their case with a £50m energy fund for care homes. The United Kingdom and Scottish Governments need to act now to save care and stop blaming one another and passing the buck.

If we don’t start to care about care then there will be no care sector left to care about or care for. There is not a lot of time left

 

Donald Macaskill

Re-designing older age: an exhibition visit.

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

A grief that shrinks : alcohol and drug deaths. A personal reflection

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

The generosity of care support: a summer reflection.

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

Let’s plan to age: the positive value of preparation.

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

If not here, where? Human rights in care homes: a reflection.

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

We don’t talk about Covid: the danger of viral complacency.

‘We don’t talk about Bruno’ from the amazingly successful Encanto children’s animation has dominated my personal airways for months – like all ‘earworms’ I have found it impossible to stop humming or silently singing it.

It was a song that I’ve kept thinking about in the last week. My week started with a train journey to Aberdeen in early Monday morning. Because of the impending rail strike the carriages were deserted and there was just a smattering of folks in the carriages, some with masks and some without. I was in Aberdeen both to visit the exciting collaborative work being undertaken by Scottish Care colleagues and members alongside the local HSCP, not least their care technologist work, but also to attend the annual NHS Scotland conference where I took part in a couple of sessions on the Wednesday. At the conference the vast majority of the several hundred delegates were unmasked and after years of not seeing folks social distancing was most certainly not in evidence! It felt natural and normal but if I’m truthful I also had an undercurrent of anxiety and caution.

The primary reason for my caution was the emails and messages, the calls and conversations I was getting from social care providers including hearing about our weekly member surgery. They were telling me a very different story, presenting voices of concern rather than celebration. It was a hard story to hear.

It was a story of growing numbers of staff being off with Covid, of organisations especially homecare ones struggling to cover shifts because of staff shortages and long-term absence from conditions such as fatigue, depression, burnout and traumatic grieving; it was the story of the impossibility of recruitment with one provider recounting that 22 people were called to interview for a homecare post and only 3 turned up and that out of 12 organisations delivering homecare and housing support all of them had lost over a dozen staff in the previous few weeks because of the cost of living and fuel crisis. It was a story of growing anxiety that folks were not able to go on their summer holidays because they felt the need to cover shifts, in particular managers were saying their staffing crisis was now as bad as it had been at the peak of the Omicron wave a few weeks ago.

Now I am not naive – I know that the nature of a pandemic is of peaks and troughs – but at the moment it feels we are in a very challenging place and at a time when the social care sector is already stretched and exceptionally fragile.

The data published by Public Health Scotland on Wednesday underlined what I think is a change in the Covid story which we would do well to pay attention to. Last Wednesday there were 2,200 cases in the week to the 22nd compared to 1,181 positive cases a fortnight before which is a 30.5% increase on the previous 7-day period. Again, the numbers are likely to reflect a substantial under-recording and reporting. From what I hear many people are not testing, going to work or activities with what may be a common cold, hay fever but could equally be Covid19. The number of Covid re-infections stood at 15.5% compared to the 12.5% previous fortnight. There are now 948 people with Covid in hospital compared to 637 a fortnight ago – again another significant increase. There were 17 people in ICU which is more than double the 8 people a fortnight before.

In the week to Thursday 23rd June there were a total of 41 Covid19 deaths compared to 20 people the previous fortnight.

Again, there is evidence of an increase in the number of deaths in the Care Inspectorate data when for the week to the 21st June there were sadly 12 deaths including from suspected Covid compared to only one a fortnight before. Outbreaks have also risen sharply with a total of 131 in the week to the 21st June compared to 61 homes in outbreak a fortnight before.

This data should not be ignored. I really hope it is a blip and a result of activities such as the Jubilee long weekend but if it is not, I feel we need to start considering how do we respond.

Amid all this I am sure I am not alone in having a sense of conflicting and sometimes contradictory voices and thoughts in my head.

I hear the voices that say that this is a mild virus, that it is just a cold and that we need to learn to live with it. But tell that to those hospitalised or who have a really bad response, despite being vaccinated.

I hear the voices – and not least in a powerful workshop at the NHS conference – of the impacts of Long Covid – now affecting at least 155,000 people in Scotland according to a recent ONS estimate but which campaigners argue is much much more. These are lives limited, changed, altered, and diminished by what others describe as a ‘cold’ or ‘just like the flu.’  And we do not even know the impact of the new strains in terms of Long Covid risk or likelihood.

I hear the voices that say that vaccination has changed everything, and people just need to get protected. They are right – imagine a world without the protection of vaccination – but we know with distance of time that protection is waning and lots of us are not as protected as we once were.

I hear the voices arguing that we can never go back into restrictive lockdown, and I agree as long as vaccination protects the majority that we need to find other measures to ensure those most vulnerable are safe from harm, that their rights are upheld and that their independence, citizenship and contribution remains valued.

I hear the voices that express anxiety that they will be shut out from care homes. I am very aware a tweet I put out about growing Covid numbers in the community and its impact on staffing levels together with a suggestion of the need for more restrictions was interpreted as a request to return to care home restrictions. For that anxiety I apologise but agree we can NEVER lock people out of our care homes again. That is what Anne’s Law now part of the newly published National Care Service Bill is going to make sure alongside existing protections. No one I know wants to go back but rather think about how we can better involve and empower families. Care homes are amongst the safest places now – we have enough protection – the fear is the loss of staff as the virus gains ground in the communities in which they live.

I hear the voices that say that ‘life has to be more than existence’ and I agree that we need to bestow much more autonomy onto people to balance the harms in their life – protection from the virus against personal restriction; the emotional and psychological trauma of isolation and separation against being together with others even if there is a risk in that belonging.

I hear the voices of those who say they cannot cope with the psychological harm caused by measures which restrict their freedom and choice; that they are not prepared to be directed and told anymore.

But this last week in at least two meetings I heard the voices and was moved almost to tears by the stories of isolation and a sense of forgottenness, of felt abandonment and lack of priority that so many with long-term conditions, that so many informal and family carers are feeling at the current time. The newspaper piece by Dr Sally Witcher this last week was a powerful description of that sense of marginalisation and felt discrimination.

It has been a week of lots of voices, lots of conflict and lots of contradiction. By the end of the week as I travelled to meetings yesterday on the train, I had my FFP2 mask back on and I’ve started to test again.

But it is also a week where we saw the publication of the Bill to create The National Care Service. There is a lot to read and its emphasis on co-design and collaborative involvement is good but as with all things the proof will be in the consumption. But to be truthful it’s hard to get overly excited about a future prospect when the present reality is so precarious. I’ll reserve for another time further comment on the NCS but right now as I have described it before it feels like we are enduring a perfect storm – rising Covid cases, a unique recruitment and retention crisis, an energy and fuel cost nightmare, a cost of living breakdown and an inflation rate of 9.1%, together with staff fatigue and breakdown and so on.

There are some levers of influence and change beyond our grasping but why for instance has Scottish Government decided that next Friday they will stop paying social care providers and others sustainability payments for critical tools necessary to ensure infection prevention and the enhanced use of PPE? A fuller statement details our concerns. Timing is everything and during growing Covid community cases, a very fragile sector, and a depleted workforce this is one piece of timing in which is a huge and dangerous miscalculation.

I would dearly love to believe that Covid19 is over, that its threat has so diminished that concern is misplaced and that anxiety is unnecessary and inappropriate – but simply failing to face up to emerging challenge, to address these and to prepare for autumn and winter resurgence, will not result in safety. Pretending threat is not there because you want to get on with other priorities and address other issues and challenges is naïve and dangerous. Simply not talking about Covid will not stop it still impacting on our lives. We cannot stop talking about (and addressing) Covid even if we can about Bruno!

Donald Macaskill

Migration and social care in Scotland: time to start again.

I was fortunate to be able to attend a conference held by the organisation Migration Policy Scotland this past week. Migration Policy Scotland is a relatively new organisation, founded by Dr Sarah Kyambi and it seeks to

‘work to improve immigration systems and enhance migration experiences through research, policy influence and inclusive engagement… [and] aim to offer principled and effective solutions to the challenges that migration may pose, while actively championing the benefits it brings.’

I was the last speaker at the event which was focussing on the experience of the changes to the immigration system over the last eighteen months or so. Being last allowed me to have the opportunity to listen to other contributors share what was happening in their sectors. It was a less than positive story with farming facing the reality of lower supply of fruit and vegetables because migrant workers were simply not opting to come or return and so there was simply no point in putting things in the ground to grow and not be picked; with hospitality and tourism taking a massive impact running at around 40,000 vacancies in Scotland meaning 60% of hotels were understaffed; with hearing that whisky is being blended in France, that salmon is being cured in Spain and so on. There seem to be critical shortages across so many sectors in the Scottish economy.

With regard to social care the Christmas Eve 2021 announcement from the Home Office which offered visa options and reduced salary thresholds amongst other measures certainly led to a period of increased activity as organisations started to begin the process of international recruitment. The thorough and fair report of the Migration Advisory Council on social care is to be commended for the progress it sought to make. But the whole process of recruiting internationally is fraught with cost, bureaucracy and burden and for small often family run SMEs working in the care sector it is well-nigh to impossible to initiate never mind to consistently implement.

By the end of the event, I was left more convinced than ever before that what we need for Scotland and with a degree of urgency is a radical redesign of immigration policy which takes account of our unique and distinctive demography. As I stated at the event what we have now is an immigration system which is demographically delusional rather than demographically realistic.

Scotland is an ageing society and has a declining population. Sadly, as we age and live longer we are not doing so healthily and that brings a personal and societal cost to it. In addition, our population which is still active and working is older and inevitably less productive as a result of health, fitness and energy. We have also seen as a result of Covid19 an increase in the number of those described as ‘inactive’ in the labour market – that is those of working age who have either retired early or chosen not to work. As someone else has said people are thinking of the ‘life-work’ balance not the ‘work-life balance’ and deciding that doing less work is the way to achieve that.

Therefore, by simple arithmetical calculation we bluntly do not have enough people to do the jobs we need filled in order to function as a modern society.

It would appear that all that Brexit has done is to stop ‘free movement’ from Europe leading to a loss of thousands who went home never to return, and our new immigration system has broadly flipped the coin so that we are now attracting 10s of 1000s of more people coming to the UK to work from non-EU countries, primarily India. Nothing wrong with that though I suspect not what many pro-Brexiteers anticipated! We have not seen in other words anything other than a marginal difference in overall immigration numbers. More worrying still is that a huge percentage of those who do manage to get to the UK are caught in the metropolitan bubble which is London and there is a real lack of folks coming north to Scotland and elsewhere.

All of this and especially the urgent need to plug employment gaps means we need a mature migration policy not one reactive to some very xenophobic motivations. Scotland has always welcomed and cherished new Scots, and as a small nation we desperately need that influx of youth and imagination to ensure we not only sustain ourselves as a society but that we positively thrive and flourish. If we do not do something about this and relatively soon, we simply will not have enough people to care for our population as we age and that for me is not the sign of a civilised society. And just in case you are sitting there thinking we will get robots and computers to ensure longevity and care. Undeniably technology will aid us in the months and years to come as it already is, but care in essence will always remain a human task and exchange and I for one do not want a robot wiping away my tear or soothing my fear as I spend my last days and moments in life.

I am fully aware that many societies are facing the workforce crisis in care and health that we are experiencing in Scotland. I am equally aware that in the long-term migration cannot be the only response to these issues. Increasing the valuing of the role of care, recognising the centrality of its societal contribution by proper reward and remuneration, addressing gender segregation which perceives care as ‘a woman’s role’ – all these and more are critical responses but so too is a mature migration system fit for the demographic reality Scotland is experiencing.

Sadly, all the talk this last week about immigration has been dominated by an ethically empty policy using planes to remove our obligations to another place. Whilst only 7% of migrants in Scotland are refugees or asylum seekers, and a couple of days before UN World Refugee Day, I cannot help but think that the toxic negativity to those who come to our shores has helped to consolidate the failure of the UK Government to take the necessary steps to make real change happen. Social care across Scotland, like so many other sectors, urgently needs an innovative re-design of migration policy that starts from a base of human dignity and ends in a place of appropriate welcome and acceptance and with a system which is manageable, accessible and affordable for all.

Donald Macaskill

Cashless harm: older people and a changing financial world.

In what some folks have suggested as the result of both a disorganised mind and lack of focus I recently attended the Scottish Care conference and awards having forgotten to take my wallet. The sense of fiscal nakedness was both fearful and freeing. I discovered after 48 hours that I actually didn’t need cash or even a card. Now lest you suspect that I have delusions of being a cashless royal or a serial borrower from colleagues – I discovered that I was able to exist without either a card or cash. As long as I had my phone I could travel on the trains with downloaded tickets; and through Apple Pay was able to pay for everything I needed. It was a strange experience but one which clearly a whole generation are getting used to and comfortable with – but not all.

The shift to a cashless society is a particular challenge for older people and exposes them both to the heightened risks of exclusion and financial abuse. A RSA report in March suggests that as many as 10 million people in the UK are being left to struggle with their finances as we drift to cashlessness. ‘The Cash Census: Britains’s relationship with cash and digital payments’ indicates that 48% of the population say that a cashless society is personally problematic. The describe this group as ‘Cash dependents’  but there are other groups who they call ‘cashless sceptics’ with 12 million; ‘cashless keepers’ at 12 million; the ‘cashless occasionals’ at 9 million and finally the ‘cashless converts’ at 11 million.

Increased isolation, digital fraud and an inability to control finances and debt are cited in the report as points of concern. Undeniably Covid has resulted in a huge change in the use of cards and digital payments as too has been the loss of free to use cash machines.

All this is creating a world where those who are old are at very real risk of trying to survive in a cashless world but without the knowledge and skills, the confidence and assurance of knowing how to live in that world. I personally support the RSA call that legislation is necessary to ensure everyone has access to cash near to where they live. The report also argues that essential services such as council tax and utilities should not become entirely cashless.

All of this was in my mind when I had another brush with our digital world last week.

A few days after I had returned from London I got a text message from ‘NHS-UK’ and it read: ‘You have been near a person who contracted the new SARS-CoV-2. Please arrange a PCR kit now via: https://nhs-protect.care-uk-now.co.’ (I have altered the actual address.)

My first reaction was to think that I must have – with a sense of inevitability – picked up Covid again on the Tube, train or at a meeting. Then I began to think.

There is no NHS UK; there is no contact system operating now; how did they get my number because I hadn’t signed in anywhere. With caution I then went onto the website and saw a very believable homepage with links to other genuine NHS information. I was asked to input data and did so without revealing accurate information. To cut a long story short this was a sophisticated scam ostensibly to book a home delivered PCR and pay for the postage at 0.99 pence – by which time I would have put in bank details etc.

After further investigation I discovered this scam had been flagged as occurring across the UK.

My reason for mentioning all this is to illustrate just how easy it is to be convinced to do something which in essence is designed to scam or rip you off. Even with a degree of awareness and confidence as a citizen of our increasingly digital and cashless world I very nearly became the victim of a scam. The level of sophistication and ingenuity of those who would seek to hurt and harm us is scarily impressive.

Next Wednesday is World Elder Abuse Awareness Day (WEAAD) which since 2006 has been held on that day and is held under the auspices of the World Health Organization and the United Nations.

The purpose of WEAAD is to provide an opportunity for communities around the world to promote a better understanding of abuse and neglect of older persons by raising awareness of the cultural, social, economic and demographic processes affecting elder abuse and neglect.

According to the national elder abuse organisation Hourglass Scotland a 2020 poll showed there were over 225,000 older victims of abuse in Scotland. They also stated that:

  • Only 10% of people in Scotland think of older adults (65+) when they think of victims of abuse. Nearly a quarter (24%) think of animals
  • The Scottish public woefully underestimates the number of older people who experience abuse – not one person surveyed thought the number of UK victims reaches over 2.5m every year.
  • Hansard recorded mentions of the abuse of older people 35 times in Parliament compared to 3603 mentions for domestic abuse, 746 mentions for child abuse and 915 mentions for fox hunting

The lack of societal appreciation of the reality of abuse and harm against older people, predominantly in their own home is shocking. Such lack of knowledge is a complicity in the harm too many women and men are experiencing in our communities. This is partly because the overwhelming number of those who hurt and harm our older citizens are people known to the person, even in terms of financial harm. The increased use of digital payments and cashlessness makes someone already at risk of harm even more at risk.

This coming Wednesday let us all think about whether or not someone known to us who is over 65 might be the victim of hurt, harm and abuse, and rather than crossing the road of indifference, let us stop and enquire, report and act. As we move into a new digital financial and cashless age let us all make sure safeguards are in place so that those already hidden do not become invisible, those already disadvantaged do not become forgotten, and those already victims do not suffer more.

Donald Macaskill