There is something of a delicious Scottish irony that after weeks of continual sunshine and at the end of a week in which an official heatwave was recorded for many parts of Scotland that I am sitting writing this blog watching the puddles outside after a night of rain on a day when lots of local community outside events are due to take place! The irony is not in the ability of the Scottish weather to potentially announce the end of summer before June is over but in the fact that today is a day which the United Nations annually designates as the World Day to Combat Desertification and Drought.

As the UN states

“Droughts are among the greatest threats to sustainable development, especially in developing countries, but increasingly so in developed nations too. In fact, forecasts estimate that by 2050 droughts may affect over three-quarters of the world’s population.

The number and duration of droughts has increased by 29 percent since 2000, as compared to the two previous decades (WMO 2021). When more than 2.3 billion people already face water stress, this is a huge problem.”

The theme for this 2023 is Her Land, Her Rights and is a recognition of the reality that women the world over ‘hold a vital stake in the health of the land, yet they often don’t have control over it’…. And that ‘investing in women’s equal access to land and associated assets is a direct investment in their future and the future of humanity. It’s time for women and girls to be at the forefront of global land restoration and drought resilience efforts.’

The truth of climate change is an ever-present reality right across the world and Scotland is evidencing that painful reality all too frequently. Wild-fires and water shortage, droughts and ruined crops are all indicative of dramatic changes to our environment and are individually and collectively clarion calls for urgent action on climate and sustainable resources.

Whilst the UN focus is quite rightly on women and the significant role, they could play in both land use and in challenging drought and desertification, I am very mindful these last few weeks of the dramatic impacts our changing patterns of weather are having on older Scots.

From a young age I’ve always been fascinated by the weather. It was probably inevitable that I’d become a weather obsessive because it feels like it’s in the blood perhaps because of a long ancestry of farming and island life. In fact, there was a long-standing family joke that my mother’s first words in any conversation in response to the usual ‘How are you?’ was for her to tell you what the weather was like. Maybe it’s the unpredictability of the weather in Scotland that has always held my interest and indeed I’ve blogged about the truth behind the reality not least in Skye of how you can and often do get four seasons in one day as the words of Crowded House’s hit made famous.

But there is increasingly a new dimension to the unpredictability of weather which should cause us more than inconvenience it should convince us to be concerned enough to take action.

The dramatic changes in our weather seem to be happening far sooner than many of us might have predicted and their effects are already significant.

I’ve had numerous conversations with care staff and older folks in the last few weeks of intense heat and sunshine about how hard it is to be old and to live with health and care needs in periods of intense weather.

Indeed, there is an increased awareness that high temperatures and heat can have a profound and sadly fatal impact on many people. Heat warnings from the Met Office are a new phenomenon but we are now witnessing them on our weather forecasts much more often.

Extremes of weather demand our attention in numerous ways. One is to address at national and local level the requirement to change the way we treat the environment to avoid the worst excesses of poor land management that can lead to flood or indeed drought and water shortage. This last week there has also been parliamentary and political debate about who we transition to a low carbon and Net Zero economy not least in energy use and house construction.

At a more personal and local level I do think as a whole society we need to focus on how we keep ourselves healthy in the likely instances of more extreme weather. That in part includes all of us being aware of practical steps as detailed by the Met Office and organisations like Age Scotland. Whether it is through making sure we support neighbours and relatives to be aware of the importance of drinking lots of water or avoiding being out at the hottest part of the day we need to become weather and climate resilient communities.

But there are also much wider considerations which in my view we have not even begun to prepare for. On this international day when we are aware of the impact of drought on some of our most vulnerable communities and parts of the world, I think we need to give serious consideration to a climate action plan which specifically addresses the needs of an ageing population which is our reality in Scotland.

As more and more people live longer but also live alone we need to ensure that social care and support, and wider community support is focussed to and capable of addressing specific seasonal climactic needs. That might include re-design of our built environment to improve ventilation and temperature management. It certainly needs to include equipping frontline staff with knowledge to recognise signs of dehydration or early risks of cold weather impacts. It demands our housing sector to start to construct for demographic reality rather than maximised profit. I’ve lost count of the number of planning proposals which on paper seek to build single person and accessible accommodation but which when construction ends are invisible because it is argued that they are expensive to build and margins are low.

Right across the board from planning to social care, from educating our young on climactic response to allow them to support all to live safely in our communities to investing in climate technological innovation there is a serious lack of focus on the specific climactic management needs of older persons.

I’ve probably lost faith in the hope of ever finding a truly accurate weather forecast though that’s not stopped me downloading every new app, but it doesn’t take much to forecast the reality of increasing climactic unpredictability. Our response to that could be to ostrich-like hide our heads in the sands or to begin to develop, plan and implement robust and resourced age-sensitive climate action plans. It’s quite clear to me that those most at risk are our elderly fellow citizens and it is with them that our response needs to start.

These last few days as hot weather has stretched beyond expectations, I’ve heard quite a few folk engaging in the ancient Scottish pastime of negative weather prophecy (and I include myself here!) from suggesting that this is us having had our summer to a conviction that “we will pay for it.”! But we all still have the agency to do something about preparing ourselves and our population in older age to be healthy in a world of changed climate.

I leave you with my favourite poem about our Scottish weather by Alistair Reid. Enjoy whatever weather the day brings you and yours.

‘Scotland’ by Alastair Reid

It was a day peculiar to this piece of the planet,
when larks rose on long thin strings of singing
and the air shifted with the shimmer of actual angels.
Greenness entered the body. The grasses
shivered with presences, and sunlight
stayed like a halo on hair and heather and hills.
Walking into town, I saw, in a radiant raincoat,
the woman from the fish-shop. ‘What a day it is!’
cried I, like a sunstruck madman.
And what did she have to say for it?
Her brow grew bleak, her ancestors raged in their graves
as she spoke with their ancient misery:
‘We’ll pay for it, we’ll pay for it, we’ll pay for it!’

from Inside Out – Selected Poetry and Translations (Edinburgh: Polygon, 2008)

https://www.scottishpoetrylibrary.org.uk/poem/scotland-1/

Photo by NOAA on Unsplash

Donald Macaskill

There are so many lonely people who spend their time in the company of absence; whose only conversation is with emptiness. I’ve met many of them.

Monday sees the start of Loneliness Awareness Week 2023, which runs till the 18th of June. Established by the Marmalade Trust it aims to raise awareness of loneliness in the UK and worldwide. This year’s theme ‘Connection Matters’ promotes small everyday moments of connection to reduce feelings of loneliness.

The statistics about loneliness are well known. Tens of thousands of people when asked say that they are lonely. It is an experience which knows no age or other demographic characteristics but seems to impact on a growing number of people. Indeed according to the Marmalade Trust, a recent survey from King’s College London, The Policy Institute and IPOS, found ‘that almost a third of people in the UK feel lonelier since the pandemic. Loneliness is also believed to be costing the UK economy around £32 billion every year due to the cost-of-living crisis and disconnected communities.’

The UK Government has a dedicated Minister for Loneliness whilst in Scotland Emma Ruddock who is the Minister for Equalities, Migration and Refugees, has Social Isolation and Loneliness as one of her eight areas of responsibility.

I’ve written elsewhere about the impact of loneliness not least upon older people. In trying to describe what it felt like I wrote:

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

There are many reasons why people are lonely, but the one I want to briefly focus on this week is the loneliness which comes because of grief. For if there is any hierarchy of emptiness then the loss felt when someone leaves your life forever is perhaps the most acute.

Someone once said to me when she was describing how lonely she was after her husband of 28 years had died that she felt as if she had the ‘core of my being hollowed out just as I’d core an apple. There is something missing and I’m unable to put myself together again.’

The hollowing out of our self which is the result of the death of love will be known to many. It is an emptying of hope and aspiration, a directionless yearning for a world of lost assurance and dream; it is a hunger that no nourishment will fill; a pain no comfort will assuage.

It is a hollowing which is of acute and sharp pain; the loss of a partner leaving you to parent children who will grow up with the ache of absence; the loss of someone who you have cared for through illness and disease leaving you now emptied of the familiar rhythms of care; the loss of someone in whose company you could be who you really are, without the need for the weariness of pretence or explanation. The loss of a smell that made you feel all warm inside; the silence of a timbre of voice that was like the best days of memory; the loss of all those moments when you could rest in your being together.

I often hear folks saying to the bereaved that it is important to not be alone, to busy yourself with activity and to distract yourself from the thoughts of grief inside your head. With respect I think this is wrong. I think there is a difference between an aloneness which helps to heal and re-orientate your living and loneliness which brings separation and breaks connection.

An important part of grief is sitting with the pain of absence. Maybe it is just me but there are times when my grief needs my whole being to be alone. This aloneness is cradling the knowledge that you will never again be with the person you love; that their voice is the murmur of love inside your bones. And that terrible and terrifying though it be that it is natural to feel lonely and abandoned, but also that this will one day become a world in which you can live again and do more than simply exist. So it is that  I believe that there is difference between the aloneness of grief and a loneliness which causes you harm and stops you grieving properly.

Loneliness Week is right to emphasise the importance of connection – it is vital to who we are as human beings that we belong in place and with others. But it is also important that connection is authentic and real and that we connect with others when the time is right and when we have reached that stage in our bereavement walk. We cannot manufacture connection and the rush to restore ‘normality’ and diminish pain can cause unnecessary hurt and harm. If I know anything about my own travelling through the landscape of loss it is that every single person’s journey is unique and whilst there are similarities, we never walk the same steps and there can never be a replica of sameness to grieving. We cannot rush someone through grief as if there are key staging posts to be reached and a destination to be achieved.

That is not to deny that there are indeed lessons for those of us who sit alongside the bereaved which might address and lessen some of the loneliness that is felt and experienced and which causes harm. One such is the simple acknowledgement that with death comes a whole host of losses for the bereaved. You might no longer feel connected or involved in the groups and activities which you shared or went to together; carers especially feel a sense of loss when their sense of identity is replaced virtually overnight. The journey from carer to bereaved is a sudden and sharp one for which there is often so little preparation or planning. There are also too many for whom invitations dry up because folks feel awkward about encroaching on ‘grief’ or don’t know how a ‘single bereaved’ person fits into their perception of social normality. More recently the effect of the cost-of-living crisis has made it harder for people to be able to ‘re-connect’ with others because they cannot afford to travel or socialise.

Grief can sometimes make us feel like we are outside ourselves watching someone in our own body going through the motions of routine and normality whilst we know deep inside that all is changed forever. It is a twilight zone where nothing feels substantial and solid; no matter how hard we try to grasp it life trickles through our fingers.

When you are in the grief of loneliness a crowded and busy room can feel empty and silent. You observe but there is no real contact, folks talk but there is no real connection. In such a place loneliness is your state of being but aloneness might sometimes be your solace.

The Tea Break:

She sits

quiet and held tight

into herself;

watchful and waiting,

listening and remembering.

Gossips parade their barbs

and coffee-drenched tongues

salivate over salacious sensation,

and still she sits.

Empty words fill the silence;

meaningless intelligence

make a nonsense of conversation,

and still she sits.

Diets and crosswords,

fashion and fantasies,

empty lives shared

and still she sits.

Careless chatter crackles

in a tea room of

folk fearful of friendship

and still she sits.

Not a stir

Not a flutter

Not a movement

And still she sits

In the tea break.

Donald Macaskill

Photo by Geoffroy Hauwen on Unsplash

Dire warnings about the end of the world are normally the stuff of placard bearing street preachers prophesying Old Testament style global ending but in the last week mainstream media has been carrying concerns about imminent extinction. The source of such threat not inter-galactic invasion or even ecological catastrophe but a very human development, Artificial Intelligence.

When I first wrote at length about AI and its role in the world of social care there were even at that time some highly respected scientists who were warning about the threats together with advocating the potential of AI. Stephen Hawking even told the BBC in 2014 that “The development of full artificial intelligence could spell the end of the human race.”

This past week a popular British newspaper was amongst many who stated:

“A dramatic statement signed by international experts says AI should be prioritised alongside other extinction risks such as nuclear war and pandemics.

Signatories include dozens of academics, senior bosses at companies including Google DeepMind, the co-founder of Skype, and Sam Altman, chief executive of ChatGPT-maker OpenAI.

Another signatory is Geoffrey Hinton, sometimes nicknamed the ‘Godfather of AI’, who recently resigned from his job at Google, saying that ‘bad actors’ will use new AI technologies to harm others and that the tools he helped to create could spell the end of humanity.”

As well as the prospect of human extinction there are also some more immediate perceived challenges brought about by the increased use and dependency upon AI and chief amongst them is the impact on the workforce in certain industries. This was evidenced in the much-publicised news a few weeks ago that British Telecom would be laying off thousands of workers and that a fifth of those job cuts will come in customer services as staff are replaced by technologies. BT Chief Executive Philip Jansen stated:

“Whenever you get new technologies you can get big changes,”

“generative AI” tools such as ChatGPT – which can write essays, scripts, poems, and solve computer coding in a human-like way – “gives us confidence we can go even further”.

Mr Jansen said AI would make services faster, better and more seamless, adding that the changes would not mean customers will “feel like they are dealing with robots.”

Balancing the voices of pessimism are those like Stephen Marche who writing in the Guardian stated:

“In the field of artificial intelligence, doomerism is as natural as an echo. Every development in the field, or to be more precise every development that the public notices, immediately generates an apocalyptic reaction. The fear is natural enough; it comes partly from the lizard-brain part of us that resists whatever is new and strange, and partly from the movies, which have instructed us, for a century, that artificial intelligence will take the form of an angry god that wants to destroy all humanity.”

In Scotland this past week the Innovation Minister Richard Lochead addressing the Parliament stated:

“These tools, known as “Generative AI”, will have an impact on jobs.

… for example, OpenAI claims that GPT-4 can achieve the same as a top 10% law student in bar exams.

… But it is important to not lose perspective on AI.  Most experts do not believe AI will be able to supersede human intelligence without several new breakthroughs, and no one knows if or when those will happen.  At the moment, talk of an impending “singularity” which means machines thinking for themselves without needing humans still involves a large dose of fiction. Essentially, for now at least, AI is just a tool.”

So, has any of this got anything to do with the world of social care and support? Is there threat or potential from AI or is the true reality something much more nuanced and complex? In the midst of massive global challenges around workforce and sustainable and affordable social care systems; in a world where more of us are living longer and seeking to achieve the benefits of positive ageing, is AI a trap or a panacea?

Certainly, there are some politicians whose imaginations seem to have been captured by the prospect of fiscal savings and workforce re-design on the back of AI and the Internet of Things. Most prominent amongst these new converts and evangelical prophets of a new tomorrow in social care and health has been Steve Barclay the current UK Health Secretary. Barclay spoke to the Daily Telegraph and suggested that having been inspired by a recent trip to Japan that the dawn of new social care possibility was coming soon.

“The health minister suggested robots and AI can help in better supporting patients and reducing demand on health and social care staff.

He said there was a need to consider and adopt other nations’ “innovative” approaches to health as the UK government attempts to cut NHS waiting times after Covid-19 and improve care for the elderly.

Mr Barclay said the Japanese were “world leaders in their use of tech” and that they have invested in a wide range of technologies, including robotics, “as a key way of getting care to patients,” adding “that is something we can learn from”.

Silver Wing uses several types of robots in its care homes. At its Shin-tomi nursing home in Tokyo, humanoid talking robots interact with patients, including those with dementia, and lead them through various recreational activities.

Other robots monitor patients as they sleep, alerting caregivers if the individual is agitated or attempting to rise out of bed. One robot also assists carers as they lift patients out of their beds and into wheelchairs, a physically demanding task.”

The article also details the extensive growth in the use of care bots across Japan:

“In the year to March 2017, £39.5 million was spent by the Japanese government to introduce robots into 5,000 facilities across the country. By 2018, an excess of £236 million had been spent on funding the research and development of such devices…

Japan has been investing in the development of elder care robots to help fill a projected shortfall of 380,000 specialised workers by 2025.”

All very appealing but I think we need to go beneath the surface of the hyperbole of ‘care-bots’ and AI not least in that we are operating with very different cultural and societal attitudes to ageing and the place of the older person in community and family.

There is an inescapable reality that in Scotland we are ageing as a whole population and that with little inward migration (even from other parts of the United Kingdom) this is likely to be an inescapable trend. We will need to alter the way in which we deliver social care and our dependence upon a human workforce is part of that reappraisal. I have long advocated that there is real potential in the use of in-home technology to enhance preventative care and support, promote self-management and to increase independence. It is self-evident that technologies including those utilising AI will be central to this fostering and enabling of greater in-home independence. It is also a truism that we will increasingly see the use of robotics (care-bots) in residential and nursing home settings although earlier hype needs to be balanced both by resource and investment reality and by demand. For instance the much vaunted ‘Pepper, robot is no longer being manufactured.

The Scottish Care driven project ‘Care Technologists’ is at the heart of embedding technological solutions within a human-rights based and person-led model of supported living and care home use.

As AI develops at an even faster pace there will be some tasks in a care home or supported individual’s home which can be both accelerated and automated. We are seeing some organisations investing not insignificant sums in introducing innovations which reduce time, remove duplication and introduce consistency. But in the most human of industries and sectors such as social care questions need to be asked about the boundaries and constraints that are required to ensure a human rights based and citizen controlled use of care technologies and AI.

So there are companies already utilising AI to write care plans for an individual by utilising existing models, predictive responses and assimilating with personal data. But is a care plan not something more than a tick-box, pro-forma exercise? Is it not also a plan for living and support which arises from the formation of relationship which enables instinctive and intuitive skill-based dialogue to occur and happen. I have lost count of the number of assessors and clinical and care practitioners who have over the years told me that it is not so much what someone says and discloses in an assessment interview that matters, but their mannerism and mood, their engagement or otherwise in an encounter, that influences the exchange. The oft quoted comment that we learn as much from what is not said or how someone expresses themselves is perhaps not so easy to calculate algorithmically by a machine.

It is also true that many care settings are increasingly using care-bots to provide company and reduce isolation, to act as tools of reminiscence for people who would otherwise be alone or distressed. But what are the limits of such usage? Growing old is not just about remembering the past but re-shaping and re-forming a future which is surely something which we do best in human relational interaction and exchange?

And thirdly, a point I have made in numerous contexts, at those ultimate moments of living and loving, is a technological presence, a care-bot what we want? Can a machine soothe distress or grant assurance, reduce fear, or bestow solace? And even if the answer to these questions is yes, the question remains as to whether in a human society shaped by dignity, they should? Just because something is possible does not make it desirable.

That is why framing the use of AI in social care and health settings and relationships becomes a primary question of the moment. It is why we need to pay attention to work which seeks to frame AI within a human rights context because there is more than enough evidence of biases and discrimination in its potential use, not least for the older citizen. A world first study on ageism in AI published by Monash University in Australia a couple of months ago makes for worrying reading. As the lead author of the study Dr Barbara Barbosa Neves states:

“AI can perpetuate ageism and exacerbate existing social inequalities,”

“When implementing AI technologies in aged care, we must consider them as part of a suite of care services and not as isolated solutions.”  And

“The use of AI in aged care must be done with consideration of the potential impact of these technologies on well-being, autonomy, and dignity of older residents.”

A human rights based approach to AI is critical to its success in social care and it is wholly erroneous to equate a human rights based approach with an ethical approach – the two are palpably not the same. I would commend the work of Scottish Care, VOX and the Alliance and other partners in this field together with the publication ‘ A Digital Cage is still a cage.’  and the succinctly practical ‘If I Knew Then What I Know Now.’  But we need more of these approaches and boundary setting maps of our AI reality.

In all that I have read recently about technology and AI and the changes it might bring about for the workforce and those who receive care, one recent article has for me got to the heart of the potential of AI to change the dynamics of human relatedness and in particular caregiving. Emily Kenway writing in the Guardian a couple of Sundays ago, in a movingly insightful piece writes:

“… are we missing something about the potential impact of these technologies on caregiving?…

Patience, confidence, purpose – it seems that caregiving generates faculties many of us consider desirable. Perhaps caregivers know something under-recognised in discussions of care and tech: that care, like love, is multidimensional – the good and the difficult coexist.

Prof Shannon Vallor is concerned that the brave new world of care tech has overlooked this dimension of caregiving in its laser-like focus on alleviating hardships. Her work as a philosopher of technology, currently at the Edinburgh Futures Institute, is drawing our attention to the ways in which jettisoning care to the machines might mean we lose important capabilities.

There is a paradox at the heart of care tech. If Vallor is right, then caregiving is a crucial route through which we can help realise our humanity. The “benefits of being a caregiver scale”, and the growing body of evidence underpinning its development, suggest she might be. In this case, the technologies being developed on behalf of caregivers to free them from their “burden” may have an unexpected cost: the loss of important human capabilities. But experts are clear that technology can be vital for reducing caregivers’ load, too. Paradoxically, then, while tech may prevent us reaping the rewards of caregiving, it may also enable them.”

I have much less concern about global annihilation being the gift of AI but am more concerned at the loss of the dynamic of care and relatedness which might by default and lack of planning result from it. The human race may not be at risk from AI but our humanness just might.

Donald Macaskill

I’ve spent more than my usual time this past week in TV studios, speaking to journalists and doing interviews. The reason has been a media statement published by Scottish Care about the current state of discussions around the National Care Home Contract. In some of these interviews I mentioned as I have before both in discussions and in this blog that care homes are having to close their doors because they cannot make ends meet. I’m not going to go over the nuts and bolts of those decisions and discussions here, but I want to briefly this week share something of the impact upon those who are in a care home when a decision is made to close.

The first thing to say is that you can never generalise about the closure of a care home. They happen for many reasons but more recently they have been happening on the grounds of cost and sustainability. A recent example of this is one which for me comes very close to home.

Around a month ago the news broke that one of the oldest charities in Glasgow had announced it is to close and carefully wind-down the running of its care home in the west end of Glasgow after nearly 200 years. This was the first care home I ever visited – as a primary school pupil in a nearby school. Even then I was impressed by the palpable sense of love and compassion in the place. I remember going home and saying that it was a ‘special place.’  I have visited friends, acquaintances, and neighbours over the years in the home, a place which I walked by most weeks of my early life. The depth of compassion, of life lived before the end, of family welcome were so memorable – yet after all the challenges of the decades including the hell which was Covid-19 the home is to close. Media coverage stating the reasons as:

“severe and unsustainable cash flow problems stemming from the rising costs and challenges of running a major care facility”, the administrators said.

This included staff shortages, costs of sourcing agency staff, rising food and energy bills, compliance costs and falling occupancy levels.”

I will miss Balmanno House but sadly I know and have been told of so many more care homes which have had to close primarily because of staffing and recruitment costs, of sustainability around energy and other commodities – and all because of an inadequate level of public funding. Closures which hit the local media, but which are going largely unnoticed amidst all the political grandstanding and front-page headlines of recent days and weeks.

It is a generally received wisdom that when a care home closes it has a negative impact on staff and most importantly residents even in shortening life and decreasing wellbeing. That is certainly the anecdotal wisdom of many families and those who work in the sector. Prof Jon Glasby of Birmingham has and is undertaking research in the area and suggests that that may not always be the case if the care home had poor quality provision before its closure. Glasby’s research is probably accurate but what is happening up and down the country these last few months and especially in rural and remote areas is not the closure of homes which were in decline but that high quality care homes are having to close not because they are providing a poor service but because they cannot afford to stay open or cannot get staff. That is very different. The trauma and upset of dislocation from a place of contentment is much sharper and rawer than leaving a place of dissatisfaction.

I want to briefly share some of the conversations I have been having with staff, managers and families in the last few weeks and months because sometimes when you hear about a care home close or when you read numbers and statistics, we can fail to understand the experience and lived reality behind the headline.

Mary was a resident in the care home for five years and when she entered the home she really didn’t want to be there and on her own admission she gave the staff hell because she was so desperate to get home and thought that her daughter had abandoned her. But with perseverance and positivity the staff nurtured Mary’s confidence and slowly as she puts it ‘the ice thawed’ and she began to settle in – indeed it only took a couple of weeks. After that she openly confesses that these last few years have been amongst the best of her life. Of course, she misses her own place, but she will tell you straight out that she just was no longer able to look after herself because of her frailty and that she had had two hips replaced after falls. She was immensely lonely and had sunk deep into herself even though she had good support from homecare staff. What the care home did was to bring her back to life and much to the surprise of family and others she was thriving. She formed new friends and loved the range of activities and what she described as a constant sense of fun. The staff were brilliant but she also said that so many had left after Covid and there were many new staff or staff who only came for a short period, and this had changed the place. Then they got the news of the closure and Mary was not the only one who got really depressed and saddened.

When I met Mary she was trying to be positive for everyone around her but it struck me after years working in the fields of loss and grief that plain and simple what Mary was experiencing was a bereavement, a loss of the familiar in her new place; a loss of relationship with folks she had come to love both staff and residents because most had not followed in her steps to the new home she was now in some 20 miles from where she had been. She was determined not to be down and to fight the black mood – but what I witnessed in Mary was grief pure and simple. A grief that need not have happened, a grief for which many of the staff around her now were ill equipped to support. But more than that and Mary confessed this – she was worried about making new friends, making the effort of getting to know folks for the fear that in a few months it would all happen again. Grief is first and foremost the fracturing of love and if that brokenness is one that could have been avoided you are much more wary of being vulnerable to love.

When a care home closes its impact on residents is personal and profound. It is a loss and bereavement which we need to support but it is also one which we should all be doing as much as we can to avoid in the first place.

Jim was the manager of the care home which Mary was a resident in. To be fair Jim could see the writing on the wall as he attended the meetings of the charity trustees which ran the home. Money was not so much tight as non-existent. Donations for the small community-based charity had dried up so much and there was a black hole in them during Covid from which they never recovered. ‘Folks gave to the big causes that were on TV,’ he would say ‘not to the local places.’ The trustees made the decision to close because they simply were running out of money with all the increased costs, and they could not persuade the local authority funders to pay more for the residential care and support they provided.

Jim had over 30 years’ experience in the care sector and worked across so many different groups, but he found his niche and became a manger – indeed an award winning manager renowned for supporting staff, working closely with families and integrating the home into the life of the local school and community. But as he closed the door on the home for the last time, he told me that he could not but shed a tear for all the stories told inside its doors, all the love and loss, the sheer fun and laughter he had had inside.

Jim too was a man who was grieving – having not just lost his job – indeed he was now working outside the care sector – but having lost the place where he said to me, he had become the person he was when I met him. He was sure that the place and the people had given more to him than he had to them. It as not, in his words, just about bricks and mortar. His last act was in memory for all who had passed through the gate and door – it was to hang a wreath.

For Jim and Mary, you could count many hundreds more. Behind the closure of a care home, the dislocation of its residents and the loss of livelihood for staff, is an undoubted grieving process, a bereavement of place and memory, of folk and feelings, of special times; of safe space and held love.

In all the politics and wrangling over finance and priority, in all the debate over culpability and responsibility – I hope we never forget folks like Jim and Mary – it is their living and loving that is changed forever when a care home closes.

Donald Macaskill

 

Yesterday was the Scottish Care, Care at Home and Housing Support conference which was held in Glasgow with the theme ‘Keeping Care at Home’. It was followed by an evening Awards ceremony in which participants were able to thank the amazing women and men who have worked in homecare across the country over the last year.

The day was one which was both inspiring and also concerning because so many of the conversations I held with those who were attending underlined in the strongest terms the degree of crisis and challenge which is being faced by the homecare sector across Scotland.

Politically and societally, there is a lot of agreement about homecare. People know that should their health deteriorate and decline, should the passage of time mean that they are less able and fit than they once were, then the place they would want to be is in their own home. The familiarity of place is critical to the psychological and emotional health we all know to be fundamental to our wellbeing.

There is also a generally accepted recognition that one of the ways in which we can help people avoid unnecessary admission to hospital is to keep them healthy and well at home. This not only prevents avoidable hospital admissions with all the pressures that brings on the whole health and social care system but more importantly with all the risks that being in hospital for periods of time brings to the individual themselves.

Over the last few weeks and winter/spring months there has been a great deal of media and political focus on delayed discharge – that is when people are unnecessarily delayed in being discharged from hospital when they are fit for discharge. There has been equal focus and attention – and indeed resource – being allocated to ‘hospital at home’ models and innovations. All of these are to be applauded and affirmed because they adhere to the great principles of the NHS, which is to treat, care and support individuals as close to home and community as possible.

But what about preventative social care? It is all very well to develop important initiatives to get people out of hospital and to support them in their own homes when they are discharged, but it would be so much better if we prevented or at least delayed for as long as possible admission into hospital. That is where social care systems and supports when they work well are able to make such a significant contribution.

One of the really negative impacts of austerity and the increasing resource swallowed up by the acute NHS systems has been the stripping out of the preventative approach, systems and models in social care. This has been a dangerous and damaging error. The less we spend on preventative social care the more we end up spending on the acute and secondary NHS.

Preventative social care comes in many guises. It is first and foremost relationship based social care where the support worker or carer is able over time to form a meaningful relationship with the supported person. Such a depth relationship – which requires continuity of staffing and consistency of service – build not only a relationship but critically enables the worker to develop the insights, knowledge and awareness that enables him or her to be aware of changes in the behaviour, presentation and health of the supported person. Without being overly idealistic – this is what good old-fashioned relationship-based care at home used to deliver as routine. Care staff knew their clients and were the early warning systems which recognised a negative response to new medication, which questioned the benefits of multiple drugs, which enabled a person to be independent rather than nurture dependency, which reduced the harms of loneliness and isolation, which monitored incidents such as falls, memory loss and deterioration and so much more.

Such good and effective preventative social care requires many things – not least of which is a staffing cohort which are valued, rewarded appropriately for their skills, and esteemed as core professionals and colleagues by others in a primary or community acre team. Their word, judgement and awareness are heard and respected.

But it also requires that most elusive of care and clinical tools – time. The sad increase in 15-minute care packages and visits over the last few years – at a time when we were supposed to be ending them – has had a deep impact on the quality of time staff are able to spend with individuals. I defy anyone to justify that such time slots offer dignified, right-based, relationship-focussed social care. They are transactions of function rather than timeslots of compassionate care and support.

There is another element to preventative social care which is often forgotten. Prevention of negative health incidents and decline requires an individual to self-manage a long-term condition or to be at the very least aware of the factors that might impact them in a negative way. Preventative social care can encourage folks to be more proactive and knowledgeable about their health and wellbeing. I think we are missing a great public health opportunity by not enabling social care staff to be the frontline of such public education, awareness, and promotion of self-management. If they have a relationship with the supported person, it is already a door open to increased awareness and communication. Good preventative social care which utilises the contact between carer and supported person could significantly lead to increased independence and thus reduce or delay the need for care and support services.

But prevention does not just happen – it is not an accidental by-product but something which has to be designed, nurtured, and resourced. I would love to see equal resource and emphasis being placed on investment in social care especially care at home and housing support being seen as a preventative tool as equally important as the resource we allocate to getting people out of hospital or caring from them clinically in their own home. But of course, that requires whole system, holistic health and social care thinking and co-ordination rather than just attending to one part of the system.

Donald Macaskill

This blog formed part of a speech delivered at Erskine Home, Renfrewshire to celebrate the International Day of the Nurse 2023.

As many of you might know from some of my blogs and talks – I come from a family of strong Highland women!

When I was growing up there were two professions which dominated my family environment – both occupied by strong women – teaching and nursing.

One of those I want to talk about is my great aunt who had she been alive would be over 140 years old. She was ‘widowed’ in the First World War – though in truth she was never married but engaged to a young man who lost his life in the trenches but for whom she ever after wore the black of widowhood and never married.

She was an astonishingly literate and widely read woman who was a headteacher with an indomitable and quite ferocious spirit. In fact, she was quite scary! But she had wonderful stories and being a bit of a sponge, I soaked many of them up only realising their significance a lot later. She had an array of friends all over the country and indeed the world. Many of them like her were strong characters.

One of the people she occasionally talked about was someone a good 14 years younger than herself but with whom she shared a real affinity. Her name was Mairi Chisholm whom some of you may know though I suspect many of you might not – but in her day she was probably one of the most famous and photographed nurses of her generation.

Mairi Lambert Gooden Chisholm, of Chisholm (1896-1981), known as Mairi Chisholm, was an ambulance driver and first aider and then nurse on the Western Front in Belgium during the First World War.

Brought up in England but from very Highland stock, Mairi was deeply influenced by her older brother, Uailean, who owned a Royal Enfield 425cc motorcycle. She adored motorcycles and persuaded her father to buy her one which she spent days stripping down and putting back together. She was 18 years old when she met the 30-year-old Elsie Knocker, who shared the same passion for motorcycling, and they became good friends

At the outbreak of the First World War, Mairi and Elsie travelled to London on motorcycles to offer their services to the War Office. It was when working as dispatch drivers that they were spotted by Dr Hector Munro, a Scottish doctor and founder of the volunteer Flying Ambulance Corps (FAC), who invited them to join him on the front in Belgium from September 1914.

Mairi Chisholm and Elsie Knocker, became known as the ‘women or angels of Pervyse’ and together they saved the lives of thousands of soldiers and won numerous medals for bravery.

What marked them out as different was that they soon came to the conclusion that they could save more lives by treating the wounded directly on the front lines rather than transporting casualties to hospitals. They set up one hundred yards from the trenches and they called their place “Poste de Secours Anglais” (“British First Aid Post”). They spent the next three and a half years tending to the wounded.

It was an astonishingly hard time, not least in that they had to raise their own funds for their new station. Then in March 1918, they were both badly affected by a bombing raid and gas attacks on their field hospital and were invalided home. Chisholm was able to return briefly to Pervijze, before being gassed again; she was only 22 years old.

She went on to live a colourful and fulfilling life and after many more adventures died in Argyll in 1981.

Back to my great aunt. She recalled conversations she had with Mairi about what it was like to nurse and what she learned from the experience in the First World War. There are several things which both Mairi and Elsie showed which I think on this International Day of the Nurse still are apposite and are the essence of nursing.

The first is that at the start of their work Mairi and Elsie were not nurses – they had received the most basic of training but over the years developed real experience and skill so much so that they were feted by the media and others as exemplars of what nursing should be both during the war and for the decade after.

But my aunt always pointed out that Mairi consistently said that what mattered most was not the uniform you wore, the unit you belonged to, but the skills and talents you developed and displayed.

There is a lot of necessary debate about what should constitute the core skills and competencies of modern-day nursing. Indeed, I have written and commented about how important that debate is, not least when we are faced with the shortage of registered nurses working in social care. It is fundamental that we know and agree what for instance are the boundaries of role and competence between a nurse and say a senior carer.

But what was intrinsically true for Mairi was that regardless of training or title, what ultimately mattered was the ability to use skills in the service of the individual rather than the validation of personal nursing identity. What was critical was the whole team and group effort rather than the elevation of one role, however important, over another.

And a care home is an exemplar par excellence of that – it is only when acting in concert and together that we ensure the individual resident receives the best possible care and support that they deserve.

The second thing I remember being told about Mairi was that she had a passionate belief that treatment and care must go to the person and not the other way around. Now that’s a relatively easy statement to make – in fact it is the ethos of the developing concepts and delivery of hospital at home programmes and approaches – we have many of us known for long that the community should be the cradle of clinical care and not the acute hospital alone.

For Mairi that belief and conviction was one that was immensely dangerous and harrowing. It meant that quite literally she was under fire all the time – a reality that caused damage to her health which would result in a life-long impact both physically and psychologically.

But in truth that is what is still true today – we go to where people need us and when they require that support. For Mairi nursing was about being useful where you were needed – nursing was in the place and space it was necessary to be.

The third thing I heard from my aunt was that nursing and care in general was first and foremost about relationship. In an emergency war situation, you might think there was a risk that with real life and death pressures that care and support became transactional, perhaps even mechanistic and automatic.

Far from it- in her writings and in her conversation Mairi Chisholm emphasised how important it was that we see care and support, whether given by a nurse or a carer as something which if it was to be effective had to be grounded in the formation of a close and meaningful personal relationship with the person being supported and cared for.

That insight seems almost a taken for granted view of care and support today but at the time it was something that was not all that commonplace. The citations for the many medals they received demonstrated the personal care and compassion that the ‘Angels of Pervyse’ displayed.

Nursing and care were for them and must be for us today about making people feel that they mattered, that you listened to them and heard what they were wanting and needing.

And perhaps finally that is no more than true in a context of nursing in the face of death.

Those of us in this room who have been granted the privilege to be present with someone as they die; to nurture their leaving of life in a way that gives them comfort, that reduces fear and offers solace; those who have felt the pulse of life leave a body, will be well accustomed to the special character of those times, and to their continual hardness.

I suspect the majority of us will not like Mairi and Elsie have had to deal with trauma quite as severe, but each death brings its own special moment of memory for those left behind, and the care and compassion, the practical assurance and skill that is shown at such times to a care home resident are our gift to a family starting the steps of their grief journey.

I could go on about Mairi Chisholm and the memories of my great aunt a lot – but those key aspects I feel have something to say to us nearly 120 years later.

They are that nursing and care and support have to do with recognising the intrinsic value of the person who occupies a nursing role and the critical role of being part of a team; they are that for care and support to be effective nursing and care needs to go to where the person is and to their space and place; that relationship which discovers the person is at the heart of nursing and lastly that it is the accompanying of another in the last hours and moments of their living that the humanity of our roles comes to the fore.

Social care nursing and care are many things – it is a discipline and profession which has been so grossly under-appreciated and valued – and which slowly is coming out of the shadows to shout and celebrate its unique complementary offer to the whole of care support and nursing.

Social care nursing is in some senses – a bit like Mairi Chisholm’s attempts to describe her role – beyond description – but its dynamic is the presence of familiarity in the midst of uncertainty; the valuing of individuality ; the creation of space that heals and holds; the ability to listen beyond and below what is said; the instinctive knowingness which comes from presence which goes beyond the physical.

But in the end of the day whether for a nurse, or a carer, or a domestic member of staff it all boils down to the person inside that uniform.

Mairi Chisholm, challenged expectation and displayed a humanity of compassion and courageous care to the end of her days; she became a pin up of the media of her time ; but she sought not fame or fortune; but to make a difference and in everything you do you can be assured that that is what you do every day – and for that we thank you. You truly make a difference.

Biographical Details taken from:  Our Records: Mairi Chisholm (1896-1981), ambulance driver and first aider in the First World War | ScotlandsPeople

Donald Macaskill

Today is a day when history will be made. That’s probably the understatement of the hour because you would be hard pressed to have avoided awareness of the fact that today is the Coronation of Charles III. I am not going to go anywhere near the ‘politics’, the pros and cons of the event – there has already been enough trees destroyed and energy wasted in the commentary and run up to this day. What I am interested in is the historical significance of the day because I have always been fascinated by history.

At school when others loved the stimulation of science and mathematical conundrums I was always fascinated with the stories of people, more so the real stories of real folk, rather than the history of crowns and empires. Indeed, I was fortunate enough to have fantastic teachers who brought alive the story of the past in a way that made it enjoyable and interesting, and this was years before the absolute glorious delight of today’s Horrible Histories.

History and the events of the past shape our present and give some meaning to our future. So it is that in the years to come people will be able to reflect on the events of this day and no doubt will talk about them to others, especially if they were physically there or if there is a specific significance to the story for them.

One of my first experiences of being in a care setting was listening to a resident telling her experience of the late Queen’s Coronation. Recalling the delight of having the first television in the street, of neighbours crowding into their front room brought back more than just memories of the moment, it brought back to her long gone faces and forgotten smells, absent touches and lost tears, for of such are the windows into our past that bring transparency to our today.

I do not know what the memories and stories of this day will be for the future, but all of us are made up of the sinews of stories told by others in a long line of memories recalled.

In one of those strange juxtapositions of time this is Local and Community History Month. ‘The aim of the month is to increase awareness of local history, promote history in general to the local community and encourage all members of the community to participate.’

Every community is overflowing with stories of who have over the years and centuries made that place what it has become. What makes a place special, for me at least, and something I love to explore when I visit somewhere new, is not just the stories of the great and the good (or more often the not so great and the even less good), but the tales of ordinary life, however hard, that create the energy of our communities. The problem often is that it is rare that their story is heard or told. It is not just the victors who write the history.

But in no small way we are the story-bearers of our own places and it is through our words that the children of today learn the stories of our time. Everyone is a teacher of history.

I wonder what the story of this day will be which we will pass down to generations as yet unborn. Undoubtedly on this ‘special’ and unique day there will be the pomp and circumstance, the glitz and glamour, the celebrity and nobility, maybe even the quiet and spiritual. But that will only tell part of the story.

What about those who are little mentioned in the narratives of memory? What about the insights of those who live with disability, the recollections of those on the margins of memory, the experience of those who are struggling today in mental health, in material possession, or simply with hope?  What about the old and the labelled, those who struggle with life and who ache with grief? What about the stories of the uninvited and the unnoticed, the echoes of those whose music we have grown deaf to, those whose experiences we have become blasé to?

History has an immense power to teach, inspire and guide but only if we listen to all its teachers? I hope today as well as all the informed commentators and history pundits, we will give space to the stories that are but whispers through the cheers, but whose truth for tomorrow’s listening is as valuable as any on this day.

Carol Ann Duffy gloriously re-writes our expectations of history in a poem which has now become a favourite of examiners:

he woke up old at last, alone,

bones in a bed, not a tooth

in her head, half dead, shuffled

and limped downstairs

in the rag of her nightdress,

smelling of pee.

Slurped tea, stared

at her hand–twigs, stained gloves–

wheezed and coughed, pulled on

the coat that hung from a hook

on the door, lay on the sofa,

dozed, snored.

She was History.

She’d seen them ease him down

from the Cross, his mother gasping

for breath, as though his death

was a difficult birth, the soldiers spitting,

spears in the earth;

been there

when the fisherman swore he was back

from the dead; seen the basilicas rise

in Jerusalem, Constantinople, Sicily; watched

for a hundred years as the air of Rome

turned into stone;

witnessed the wars,

the bloody crusades, knew them by date

and by name, Bannockburn, Passchendaele,

Babi Yar, Vietnam. She’d heard the last words

of the martyrs burnt at the stake, the murderers

hung by the neck,

seen up-close

how the saint whistled and spat in the flames,

how the dictator strutting and stuttering film

blew out his brains, how the children waved

their little hands from the trains. She woke again,

cold, in the dark,

in the empty house.

Bricks through the window now, thieves

in the night. When they rang on her bell

there was nobody there; fresh graffiti sprayed

on her door, shit wrapped in a newspaper posted

onto the floor.

From Feminine Gospels by Carol Ann Duffy. copyright © 2003 by Carol Ann Duffy. Published in April 2003 by Farrar, Straus & Giroux, LLC. All rights reserved.

History by Carol Ann Duffy – Poems | Academy of American Poets

Donald Macaskill

This past week I had the pleasure of spending some time with social care colleagues from the rest of the United Kingdom and Ireland. The Five Nations Care Forum is now in its second decade and is an opportunity for the leaders of social care representatives’ bodies to come together twice a year to share insights, experiences, suggestions and support on issues of the day. There is so much that unites the countries regardless of diverse governmental, operational and regulatory systems.

One of the constant themes and words used during our exchanges this week was that of ‘confidence.’ There was a sense that one of the most significant risks to the delivery of social care support both in residential and nursing care homes, and in care at home and housing support was the lack of confidence which existed. There was a lack of confidence in the focus, resolve and ability of our political leadership to lead us out of many of the current challenges. There was a lack of confidence that the role, contribution, and professionalism of our social care support workforce was sufficiently valued and even understood. There was a lack of confidence felt by organisations unwilling to invest, plan and innovate for the future when so many things were uncertain and up in the air. We concluded our considerations by issuing a media statement arguing that now is the time to globally articulate a new vision, a fresh direction and a new passion for social care and that in the coming months we would seek to work to do so. http://www.fivenationscareforum.com/going-global/

Confidence is an interesting phenomenon, sometimes an elusive experience. As the Chambers dictionary states:

‘“etymologically, confidence comes from Latin, specifically the noun confīdentia from the verb confīdere “to confide.”… the verb fīdere means “to trust.” The related Latin noun fidēs “trust” is the ultimate source of the English word faith.”

Do we have trust and faith that the future of social care is one that we can consider to be safe and secure? Confidence needs the energy of faith to feed it and nurture hope into reality. For those who use social care supports, who work in the sectors, and who care for its priority and aims, there is no alternative but to continue to struggle to increase confidence and to raise our voices above the din of disinterested silence.

I ended my week with two critical meetings of providers of care home and homecare provision in Scotland. These are dark and challenging times and the lack of focus and urgency by so many with the ability to make decisions which can bring real change is frustrating and depressing. As key national discussions are ongoing, I cannot comment at this stage but anyone working in social care in Scotland knows that the next few days and weeks are critical to the survival of the sector and that we require political leadership to work in partnership to achieve positive outcomes for all.

But one thing I am convinced of is that regardless of short-term outcomes, there is a passion, a fire, a resolve in the belly of the body social care, to renew itself, to be heard, to advocate for those with no voice, to reform and reshape the way we care and support, to no longer be the pliant child who receives the scraps of attention and focus, but to shout aloud about the glorious, wonder which is a life transformed by the care and compassion which good social care delivers and promises.

In that I can find no better expression than in the glorious words of one of my all-time favourites Maya Angelou. She wrote this about her own sassy sexuality and self – but I can just as much see these words as speaking for social care today. We are not, we dare not lose confidence, social care support in Scotland shall rise.

Still I Rise

You may write me down in history

With your bitter, twisted lies,

You may trod me in the very dirt

But still, like dust, I’ll rise.

 

Does my sassiness upset you?

Why are you beset with gloom?

’Cause I walk like I’ve got oil wells

Pumping in my living room.

 

Just like moons and like suns,

With the certainty of tides,

Just like hopes springing high,

Still I’ll rise.

 

Did you want to see me broken?

Bowed head and lowered eyes?

Shoulders falling down like teardrops,

Weakened by my soulful cries?

 

Does my haughtiness offend you?

Don’t you take it awful hard

’Cause I laugh like I’ve got gold mines

Diggin’ in my own backyard.

 

You may shoot me with your words,

You may cut me with your eyes,

You may kill me with your hatefulness,

But still, like air, I’ll rise.

 

Does my sexiness upset you?

Does it come as a surprise

That I dance like I’ve got diamonds

At the meeting of my thighs?

 

Out of the huts of history’s shame

I rise

Up from a past that’s rooted in pain

I rise

I’m a black ocean, leaping and wide,

Welling and swelling I bear in the tide.

 

Leaving behind nights of terror and fear

I rise

Into a daybreak that’s wondrously clear

I rise

Bringing the gifts that my ancestors gave,

I am the dream and the hope of the slave.

I rise

I rise

I rise.

Maya Angelou, “Still I Rise” from And Still I Rise: A Book of Poems.  Copyright © 1978 by Maya Angelou.  Used by permission of Random House, an imprint and division of Penguin Random House LLC. All rights reserved.

Source: The Complete Collected Poems of Maya Angelou (1994)

Still I Rise by Maya Angelou | Poetry Foundation

Donald Macaskill

 

This week’s blog is partly based on a talk given at the Care Roadshow, Hampden Park on Tuesday 18^th April.

Dignity has always been an important concept and word for me. In part because having worked in the equality and human rights field it is one of the bedrocks upon which our modern ethical, moral, and legal frameworks have been built. Indeed, the opening words of the first Article of the United Nations Declaration of Human Rights declares:

All human beings are born free and equal in dignity and rights.

There are essays and books, PhDs and poems, written about what dignity means both legally, philosophically and in practice. Indeed, there is an important current debate about whether human rights as a whole and dignity specifically are indeed inherent and part of our DNA as human beings or if they only really become meaningful with our belonging to a State as citizens which enables their fulfilment and realisation. In truth we know that simply saying something does not make it true. Without the power of a State our rights are meaningless – and indeed as too many of us know even with the so-called validation of a Government our human rights can be but paper aspirations.

But I think there is something different about dignity – my belonging to a community may bestow me with human rights but if I lose citizenship or association for whatever reason – I do not I would contend lose my right to be treated with dignity.

Now however fascinating the philosophical debates might be I am not going to go there. I am going to assume that part of our humanity is our human dignity and the right to have that dignity upheld, protected, furthered and nurtured.

But what is this dignity? What does dignity mean to me and perhaps more importantly what should it mean in the context of social care and support.

The dictionary is clear and emphatic. Dignity is defined as

‘the state or quality of being worthy of honour or respect.’

And then there are a sample of other definitions. In fact, despite its centrality in the delivery of person-led social care there is no consistent universally agreed definition. I haven’t got a problem with that because the very nature of dignity and rights, should be about the dynamic of undefinable human relationships meaning that in different contexts, for diverse peoples, and in multiple dynamics dignity will mean different things. It truly is in the perspective of the beholder and the community in which they are living and relating. So it is that one group the Social Care Institute for Excellence (SCIE) states:

“Dignity in care means providing care that supports the self-respect of the person, recognising their capacities and ambitions, and does nothing to undermine it.

One homecare organisation, GoodOaks Homecare says:

“Giving people space and time to do things at their own pace. Giving people a choice over their care options and asking their preferences for care. Giving people autonomy over their lives – from the choice of what to wear, to what to eat and what to do. Making sure someone is not in pain.”

There are lots of common threads in most of the definitions you will come across– and I think they are each of them true up to a point. A few years ago I did an exercise in which I asked a group of participants two questions: What makes you feel that you belong, that you matter? Then I asked them if someone is treating you with dignity what does it look or feel like. The two lists were remarkably similar and both suggest a dynamic positivism to what dignity meant – it wasn’t something to be taken off a shelf – it was personal, active, participative and owned.

There are I think some key characteristics of dignity which appear in all the definitions and in what people themselves say. The group I worked with both described what it felt like and what it left them with a sense of:

• I was heard and not just listened to.
• They gave me time to talk and tell.
• They treated me as an individual not as another case.
• They spent time and got to know me.
• They came up with really practical steps.
• They believed what I was saying.
• Nothing was too much for them.
• I felt as if I had known them for years.
• They allowed me to make mistakes.

So, dignity in care – in social care – is a really life-affirming experience that places the person not in the centre but in control – it is a dynamic of relationship which results in an altered experience for both supported person and carer.

Over the years I have increasingly come to know that dignity is at the heart of social care and support.  But dignity does not just happen; dignified and equal treatment isn’t an accidental occurrence but a determined action. Dignity has a price and a cost, and it is something that demands prioritisation, planning and focus for it to become the lived experience and encountered reality of citizens. The question therefore has to be asked, and continually articulated, is whether or not in contemporary Scotland the way in which social care and support is delivered meets the dignity standards – and whether given those come with a cost attached we have as a society been and are prepared to pay the price for dignity?

Three brief reflections to get a sense of the price of dignity today.

Actual delivery and value.

I have often commented in the weeks that have preceded this blog that I fear there is a lack of adequate appreciation of the value and contribution of social care support. One reason is that we continue to use the perspective of the NHS and clinical care as the means by which we assess and articulate the value of social care. That is a fatal error because it fails to recognise the potential of social care and its distinctiveness. Perhaps one of the reasons that integration has so often failed in some parts of Scotland is that key stakeholders have failed to understand the contribution, voice and distinctiveness of those who are not part of their world – be it acute/secondary NHS or social care.

For me you cannot work alongside another unless you understand or at least attempt to know their language, their contribution, skills and assets. Social care and support is about enabling independence, choice and control, autonomy and voice. Also, in no small manner the social is what really matters here – it is not just care or support on their own it is social care -connection, relatedness, community, citizenship – all matter. Coincidentally the minds behind the Social Work (Scotland) Act of 1968 were of similar orientation, rooting a communitarian focussed idea of the social at the heart of care support. Social care is not solely about supporting an individual it is about supporting their connectedness to citizenship and their ownership of place in relation to others.

I do not think anyone can understand modern social care and support without also being aware of the civil rights context most especially of the disability rights movement in the 1960s through to the 1990s.  Whenever I hear commentators say we should return to health running everything or turn everything over to the NHS I quake – for years people literally fought to get out of the clutches of the healthcare system, to escape a health oriented clinical model and approach to disability, lifelong conditions, and older age; to shut down the institutions and asylums, to move people out of geriatric wards and units.

The last thing we need is a return to a health-oriented approach to living independently. Social care is not health care. Dignity is at risk if we fail to protect the distinctiveness of social care. It is a price not worth paying even if it seems an illusory answer.

Workforce

In his first policy announcement to the Scottish Parliament on Tuesday last the former Cabinet Secretary for Health and Social Care and now First Minister Humza Yousaf intimated his desire to move towards paying frontline social care staff (though specifically he only mentioned staff in adult services) the £12 an hour which organisations like my own have been campaigning as the starting point for a just, equitable pay award. There was no timetable although I am led to believe that this is being urgently developed. Dependent upon the illusive timetable this is a step in the right direction. Whether it is in time to rescue the faltering and disintegrating social care sector needs yet to be determined. Sadly, in the last few weeks, as NHS colleagues are being rewarded over 19% more for doing the same work of care support compared to their social care colleagues, there has been a growing number opting to leave the social care sector, leaving us even more critically unstable and at risk. The failure to properly value All social care staff in the same measure as colleagues in the NHS has been a massive politically opportunistic error. It will unless urgently remedied fracture perhaps irreparably the social care and health cohesion of our communities. What is the price of dignity for our social care staff? Because at this juncture of time it would appear it is one that our political leadership is either very slow to pay or worse is simply not willing to pay. Even if we were to start paying workers £12 an hour tomorrow there would still be an unjustifiable gap of unequal treatment.

Lack of focus on those who require social care especially older people and their carers.

Lastly what of those who are the folks who receive social care and support, who use our care homes and are supported at home, our day services and opportunities, our housing support and sheltered accommodation. What of the tens of thousands of family and unpaid carers who have borne the burden of our community for so so long with but passing regard and recognition, and precious little support? This has been an especially hard winter and we are by no means out of its throes yet. Too many have sat in silenced hunger and in crippling cold for fear of debt and impoverishment. Too many have felt the dignity of compassion absent from their living. The price of dignity has been found to be not worth paying in so many ways not least as local authorities have chosen to make swingeing cuts to community-based services in order to balance their budgets, and I fear disproportionately these have impacted the older citizen in many communities.

Faced with what has been for so many perhaps the hardest winter to live as an older person in Scotland in recent times, it was unbelievable to witness the failure of our new Government to continue to support a distinctive Government post of Minister for Older People. Some have questioned the value of the role, but I would suggest that regardless of the postholder that having someone at the table of decision-making who ‘should’ be advocating for older persons is critical. That is one reason I and others have enthusiastically supported the campaign launched by Age Scotland.

What is the price of dignity? From eligibility criteria which are so high you need to be close to death to the failure to recognise the distinctive and unique mental health challenges faced by older people; from budget cuts at the heart of older person services and a lack of prioritising of older person issues – it would appear a price again too high to pay.

The Portuguese Nobel laureate and writer José Saramago once opined that:

“Dignity has no price, when someone starts making small concessions, in the end, life loses all meaning.”

I wonder if in terms of social care and support in Scotland in regard to our valuing of the sector and what it offers and is; the valuing of our workforce, and the valuing of older persons in general, whether we have long since stopped paying the price of dignity?

Donald Macaskill

The following blog is the text of an address given on the 28^th March 2023 at the Luminate ‘Arts and Ageing’ Gathering at the Festival Theatre in Edinburgh.

 

When I was asked to say a few words at the start of this event I did I have to confess wonder what I could say that I haven’t said already to a good number of you over the years – and although I’m a great believer in re-cycling I thought I should at least say something new lest I fall foul to the accusation that with age comes the repetitiveness of remembrance. That’s not to say that what I have said in the past isn’t worth repeating – he says defensively – indeed at the start of this contribution I want to underline a challenge I have often given – especially on the first full day of a new First Minister.

I want to ground all that I say in a few minutes in the earth that the human right to creativity, the right to self and artistic expression, is a fundamental human right. And we need to see that right visibly and vocally articulated in the new Scottish Human Rights Act when it eventually appears. This is not the stuff of occasional opt in, less important than other interventions, do when you can or when resources allow – all that we do today and reflect upon is as fundamental and as intrinsic and as critical as the adequate resourcing of the rest of our civic and individual belonging.

But I have decided to hang some reflections this morning on the words of invitation to join this event – because for me – amongst other things the arts and ageing are about exactly what we hope to get from the event today – namely connection and inspiration and reflection.

Connection is intriguing especially for us solitaries in the room. Yes, I recognise in the words of the poet that no one is an island and that we are all part of the main – but I’m sure I’m not the only one who you know sometimes just wants to be alone! I want to find that corner in the room that encloses me in the security of encounter on my own terms.

I was chatting to someone contemplating going into a care home recently and the one thing that was putting him off – was the thought he would have to be with people 24/7 – that there would be loads of groups and forced camaraderie. That there would be no place for privacy to hide to take off the mask of pretence we all show the world and simply just to be! Now of course that’s a stereotypical fear – and I’m with him – but the truth is much more complex and subtle.

The creative arts whether they are used in care facility or community setting; in one’s own home or in your local – do indeed have the potential to connect, to meet loneliness and break down isolation but they also have the capacity to offer privacy, to help you to discover your individuality and become stronger in your sense of self and identity – in truth the arts are for both islanders and mainlanders.

When I think of connection the image that comes to mind is Avril Paton’s Windows in the West – you probably know it – as someone brought up for many years in a Glasgow tenement it expresses for me what that uncoordinated accidental connection is and portrays the mess of living in community in all its glory.

I could spend a morning exploring the story behind each window, the children fighting, the lovers yearning, the couple settled into slippered age, the partners re-designing avoidance, and so on  – it’s a painting that for me represents a deeper truth about connection, living in community and in proximity with others;  the truth is that people who come together under the canopy created by the creative arts are able to be empowered to be themselves, to live their lives anew and afresh, to choose to be in connection or apart. But always to be changed. The creative arts have both the ability to affirm individual identity and creative community, collective cohesion and passion.

Connection cannot be forced – you just create the moments for happenstance  – the creative arts are the hospitality makers of place and space that enable connection and which provide the nourishment to keep it going when the being one with another becomes tough and challenging.

So today as we connect to one another – can we also think about how we use our work to allow others to connect. Are we creating enough emptiness for connection to happen or are we predictable in our design of the moment; have we created enough silence for language to be heard or have we suffocated the echoes of personal story by intrusive commentary? Do we create the space and place for being in community and the even harder moments of nurturing the aloneness which is essential for connection?

Inspiration is the second expectation and hope for today. For those of us in this room the connotation of age with inspiration is self-evident and natural. We know that the art of imagining and the power of the imagination to restore and renew does not have a use by date. We have witnessed folks in very late age discovering for the first time or anew the power which the creative arts can bring to their sense of self, their image of the world, they have refreshed the person, people and community they want to be.

We have seen the moments of pure joy when someone discovers inside themselves the words they have always wanted to articulate; when someone paints the image that has struggled to take form and substance; when in touch and movement a new expressiveness is born, and a new story is told.

We know that just as it’s important to ask older people how they want to live in their future, so we need to make sure we are nurturing the imaginative dimension of human living and loving well into older age.

The creative arts at their best are the midwives of an imaginative birthing that brings new possibilities, unimagined dreams and unheard-of possibility to older age.

Even in the latter days of breath there is still a desire to be someone to someone; to do something new; there is still a yearning to find, to discover, to experience, to be changed and to explore.

The power of imagining the places beyond the known and the realities beyond the possible do not decline as we age. They just take a different form and more than anything they need the creative arts to foster and nurture their birthing.

But as Anne Gallagher in her opening address has challenged us are we in danger of making our art fit into a clinical science; to perversely limit the boundaries of creativity by being too focussed on outcome and discernible benefit; by using the metrics of identifiable and quantifiable science instead of the dynamic of experience and moment, intuition and instinct, encounter, and expression?

I have always and continue to believe that there is a massive primary nontherapeutic value in the arts – they are valuable in their own right not as something which improves one or changes you – and I know that there is a fine balance there – but when I listened to Mozart in my twenties, Springsteen in my thirties, Natalie Merchant in my forties, Taylor Swift in my fifties – my primary motivation was enjoyment and the experience – is there a danger I wonder especially in resource constricted times that we develop too reductionist an approach to the creative arts in terms of ageing?

And I wonder if maybe there is one specific area where more than any there is a risk that we turn our creative arts and their contribution into therapeutic value and outcome – and indeed that we are only funded and resourced where we can show benefit and improvement in a neurological and clinical sense – and that is in terms of dementia?

A diagnosis of dementia as most of us in the room will know is not a full stop in the grammar of creativity but a new paragraph – but we must be wary of the dangers of presumptive response – I think we must give space to be shocked and surprised – to be pulled away from predictable expectation and onto a journey with the person into new territories of the mind and landscapes of the heart. Life with dementia is not about maintenance it is about living to the full.

I feel an increasing sense that especially in the way in which we support people with advanced dementia that we spend too much of our time in the country of yesteryear – that too much focus is placed on memory and moments and experiences and tools of recollection and remembrance. There is clear neurological benefit in that – I am in no way denying that – but there is also clear benefit neurologically in enabling people to discover the new as well as re-discover the old, to create anew as well as to re-member, to begin afresh rather than re-visit – there is a warmth and comfort in the familiar but there is also a liveliness, an energy, a passion and joy in the new sound, the new place and in the new creation.

The last of the three themes is closely related to what I have just said, and that is reflection.

Reflection in older age is palpably different from the reflective snatches of living we have when younger – and so it should be – because to deny the reality of a life well lived is absurd. The pace slows and changes – rhythm finds a new beat and novel movement – but what glorious richness we have in older age!!! A lifetime of the raw clay of encounter and experience to be moulded into the creation of the present moment pregnant with time lived and lives loved.

We need to give people the opportunity to find their own expressiveness and to discover the language that may have lain dormant within them or indeed to have been deliberately suppressed because of negative stereotypical attitudes to the arts or the contribution and worth of the arts in society.

I think at times we are fearful; of leaving people who are older to reflect lest the pain of memory grip too hard – but there is nothing truly to be feared from the quietude of age; there is no coldness in the absence of activism; for so many it is in the space between the sounds that we learn to understand a new language, form a new way of looking at the world, and to feel restored and renewed in our own selves.

Conclusion

So active creativity has a unique place in the ageing of our society, in active, passive, accepting, challenging age. But we are not talking about waiting for the tick tock of finality as if we are passive recipients of the inevitable. No way.

I believe for all ages the creative arts are a call to purposefulness and decision. One of my favourite poets is the American Mary Oliver who in 2020 wrote in ‘The Summer Day.”  It is a rich poem which describes life and existence from the perspective of a grasshopper. It finishes with these words:

‘I do know how to pay attention, how to fall down into the grass, how to kneel down in the grass, how to be idle and blessed, how to stroll through the fields, which is what I have been doing all day. Tell me, what else should I have done? Doesn’t everything die at last, and too soon? Tell me, what is it you plan to do with your one wild and precious life?’

You will quite possibly have seen the last two sentences quoted in many places. But for me –  for later age the power of the poem is in the question

‘Tell me, what else should I have done?’

What else is there but “falling down in the grass, being idle and blessed, strolling through the fields all day.”

As others have argued this is a ‘provocative question. What is a purposeful productive day as you age? Is it not the contradictory wild impressiveness of the idle industry of a grasshopper? Is it not the creativity of the self for the single outcome of energising the moment? Is it not about the surprise of the encounter, the binding of belonging and the silence of reflection?

Everything dies at last Oliver reminds us – alas ‘too soon’ – the creative arts at their best I believe encourage us to live intentional and not accidental lives, to be the directors of our own play rather than actors for another’s text, to mould the clay of our being into the shape of our desire, to pen the language of our yearning and to dance the steps of our choreography.

What do you plan to do with ‘your one wild and precious life’??

That is a question for all ages.

The creative arts perhaps especially for older age more than anything I know pose that question every day and give the whisper of an answer in response.

Keep adventuring for you do not know the change and contentment, the joy and exhilaration, the pathos and the soothing you bring in the work you do. And let us today and all days connect, inspire, and reflect together.

Thank you

A video recording of this talk as it was delivered can be found at https://luminatescotland.org/resource/arts-and-ageing-gathering/