On the 1^st of February 2024, representatives of thirty organisations and individuals working in Adult Social Care met at the University of Oxford to discuss the benefits and risks of using ‘generative AI’ in social care. I was pleased to be part of the event organised by the University of Oxford Institute for Ethics in AI, the Digital Care Hub and Casson Consulting. 

I have written a bit over the years about Ai and most recently have reflected upon the potential of chat bots as well as the limitations of their use in social care. What is inescapable is that generative Ai is already being used to a not insignificant extent within the care sector, especially in assessment and care planning.

There are numerous responses to the development and introduction of innovative technologies. Put simplistically one response to all this is to resist and prevent – the expressed concerns around the risks of Ai removing that which is uniquely human, of it supplanting identity, were the same concerns aired in the early stages of human transplant surgery – yet those procedures have become normative today. One position, therefore, is to resist, challenge and remove new technologies. However, resistance and bans rarely work. Another response is to welcome with unbridled evangelical enthusiasm and a lack of critique.

Both positions, I would suggest are erroneous, and therefore my starting premise, is that faced with the inevitably of developments and further ‘progress’ we must develop frameworks and approaches that ensure that technology serves the public good, in an equitable, inclusive, and rights-based manner. It is essential not least in the most human of human industries, for social care, that it is critical to ask questions, raise concerns, balance risks, and adapt or adjust to accommodate cultural and societal technological mores. Concerns around privacy, the use of data, the centrality of individual choice and the advancing of the individual in person-led care and support can only be addressed through dialogue and mutual design development.

For me a critical starting point has to be a human rights-based approach to Ai and yet certainly for its application in social care there is a dearth of both research and writing on what a human rights-based approach to the use of Ai might look like. I offer one or two thoughts in this blog.

Many readers will be familiar with the PANEL principles which are the bread and butter of many human rights dialogues and models. The acronym means Participation, Accountability, Non-discrimination, Empowerment and Legality.

• Participation – People should be involved in decisions that affect their rights
• Accountability – There should be monitoring of how people’s rights are being affected, as well as remedies when things go wrong
• Non-Discrimination – Nobody should be treated unfairly because of their age, gender, ethnicity, disability, religion or belief, sexual orientation or gender identity. People who face the biggest barriers to realising their rights should be prioritised when it comes to taking action
• Empowerment – Everyone should understand their rights and be fully supported to take part in developing policy and practices which affect their lives, and
• Legality – Approaches should be grounded in the legal rights that are set out in domestic and/or international law.

So what might PANEL mean for Ai and social care?

Participation – from the moment of design, through application and use, to evaluation and assessment Ai in a social care context must evidence the intrinsic role of the individual as a person, rather than just the individual as part of a collective. This is not without challenge because it means design and development with the end user not just as an optional consideration but rather in the driving seat of investment and priority. It means for instance that the development of time-saving care planning approaches using the machine-learning of Ai must take account of the individuality of the person rather than make generalist assumptions, however well based and broad in the use of harvested data they may be. As I have reflected before the interaction and encounter between two people at the end of which a care plan or an assessment has been completed CAN and will be aided and assisted by Ai (just as much as it has been by pens and iPads) but the moment the technology, the device, the model gets in the way of the particularity and uniqueness of encounter, is the time when false assumptions, stereotypes and prejudices are risked. There must be space for the unpredictable, the surprise, the uniqueness of the person to contradict the norm of others. That is just one example but this process of participation has to be ongoing and continuous in all parts of Ai development and application. The role of individuals as continuing co-designers and evaluators should be primary.

But participation in Ai whether in design or application and review necessitates an increased awareness and knowledge of those who use social care, an enhancing of the digital and technological skills of the workforce at all levels, and a robust engagement of all stakeholders. Participation cannot happen in the vacuum of ignorance and rarely is effective without prioritised resource.

Accountability – Some of the fear and reserve around Ai and its application to social care is rooted as much in a lack of awareness of accountability as in any risk aversion. We all need to know, not least with the rapid speed at which Ai systems and tools are developing, about who is accountable for the use and application of Ai not least in the lives of those who may have clinical or health vulnerabilities and around whom there may be issues of capacity and consent. There have been understandable fears, not least centred upon the human rights to privacy and autonomy, over the use of data. Data without clear codes of behaviour and conduct is dangerous; it is a digital story which can become a nightmare. If public distrust or concern is to be replaced by a positive adoption of new technologies as beneficial then there must be clear oversight on the application of Ai and not least on the collection, storing, access and ownership of all personal data. Personally, I do not believe the use of Ai to better enable consistency within an individual’s care and support pathway between diverse organisations and agencies is antithetical to individual citizen control and access. But the ownership and rights around personal data held by citizens must be much clearer than they currently are. Human rights approaches can massively assist that assurance.

Non-Discrimination – One of the earliest critiques of Ai and especially some of the very early versions of generative Ai was what appeared to be inherent system bias within the data that was being utilised. Human rights law and practice is very clear and consistent around the issues of individual identity and non-discriminatory practice. It would be antithetical to progressive social care for there to be built in bias within any Ai tools which served to limit the rights of individuals based on protected characteristics or other aspects of individual identity. Once again, the way to prevent this risk from occurring is robust evaluation of practice, open access to data utilised, and human rights frameworks which interrogate practice in a non-discriminatory manner.

Empowerment – For a long time those who have used social care supports and services and those who work within provider organisations have recognised that at the heart of all good and effective social care is an empowerment of the individual to take control of their lives, to be the directors of their own actions, and controllers of their own independence. At its best social care enables an individual to discover their unique identity, to flourish and thrive in their humanity. It is not a one-size fits all approach but one that validates the person as who they are and enables them to achieve their potential.

There is an untapped potential in the use of Ai within a social care and support context to further underpin the autonomy, control, choice, and empowerment of the person receiving support. But only if we enable such models and approaches to grow and develop. Critically this will involve a freeing of the regulatory noose that sometimes exists around care services, and which serves to stifle individual action and risk-taking, often in the name of safeguarding and protection, but frequently based on risk aversion and system protectionism. Again, there is a real potential for a human rights-based approach to Ai which enables empowerment to occur rather than consolidates control, power, and resource in the hands of a minority (whoever they might be but certainly including Ai developers and system owners.) The risk is the opposite occurs and the use of Ai results in a further limiting of human autonomy, and a use of models and tools which observe, monitor, control and assess without the direction or voice of the person being supported.

Legality – All human rights models, frameworks and approaches have a distinct and critical vein of legality running through them. The lack of legal protections and frameworks around emerging Ai is a matter of concern. It has always been the case that it takes a few years for legislators to catch up with emerging science and technology, and often by the time that occurs some not insignificant harms and mistakes can be made. In social care the use of Ai must be undertaken utilising existing human rights protections. That is why that ethical approaches to Ai whilst they are hugely valuable and underpin a human rights approach, on their own are less than effective without robust legal and juridical protections. There is a real potential for the social care community to not only self-police the use of Ai but to model its use for others – which is why the work of the Oxford group is so important. We should not be afraid of seeking to develop new legislation and of using existing laws in a robust manner. This may also mean being courageous enough as an international social care and human rights community to re-draw concepts such as privacy for the new technological age of Ai.

I hope some of these thoughts spark and continue a conversation. Ai is here, it is changing every second of every day. We dare not seek to hide our heads in the sand but as a social care community of citizen care and support individuals, frontline workers, and social care thinkers, we need to mould and influence that Ai tomorrow for the betterment of all.

Donald Macaskill

A couple of weeks ago I spent time in the company of someone who I only knew fleetingly but who was so passionate about the care and support of older people and who had spent so much of his free time across his life advancing the cause of people who needed care. Within 24 hours that person had died suddenly. I was really shocked that someone who I had shared time with had died within a day of our meeting.

I know I am not the only person who such an event has happened to, and I won’t be the last, but it is something which draws you back on yourself. It makes you begin to realise the fragility of life; it instils in you a sense of just how out of control our living is. It also made me feel how every day, every moment and hour is precious – and it made me reach out to hug and hold my young daughter ever so much tighter that night.

As I have reflected on this sad event and also on the passion the individual had for care, I have come across the notion of ‘intentional kindness.’

In research which was published last year two American scholars evidenced the tremendous benefit which was brought to both giver and recipient by random acts of kindness. They said:

‘Performing random acts of kindness increases happiness in both givers and receivers, but we find that givers systematically undervalue their positive impact on recipients. In both field and laboratory settings (Experiments 1a through 2b), those performing an act of kindness reported how positive they expected recipients would feel and recipients reported how they actually felt. From giving away a cup of hot chocolate in a park to giving away a gift in the lab, those performing a random act of kindness consistently underestimated how positive their recipients would feel, thinking their act was of less value than recipients perceived it to be.’

There are a number of writers who have studied and published on what has become known as ‘intentional kindness’ but none more so than the psychologist Dr Tara Cousineau who wrote ‘The Kindness Cure’. Cousineau has remarked that as humans we are ‘wired for compassion and kindness as Charles Darwin observed many years ago. He suggested that the instinct for compassion is more salient than that of physical strength and fitness.’

I think both she and Darwin are right – kindness and compassion are natural and normative, but she is also right in saying that kindness is not easy and that we have to create the conditions to enable it to flourish and thrive. That we have to be intentionally kind. Kindness is a deliberate not accidental act. It has to be intentional.

I like the concept of intentional kindness and indeed find it chimes with some contemporary psychologies and philosophies. Being intentional means that I have to make conscious and deliberate choices about life and relationships; it instils a degree of positivity and purpose and should force me to edit it out the unnecessary and the distracting. Being intentionally kind allows me to be more present in the moment and its energy should give me more purpose to achieve what is meaningful and important.

In my desire to ‘carpe diem’, to make the most of every day and moment in the light of the sadness of a sudden death, I am today aware that being actively and deliberately, intentionally kind should be my priority. It will not be easy, and I will fail and falter but I suspect it will bring more benefit than loss.

Social care is a discipline and calling which enables the practitioner of the arts of compassion to continually, professionally, and consciously be intentionally kind. Kindness not born out of sympathy or pity, but rather rooted in the appreciation of the dignity and uniqueness of individual humanity; kindness through tough times and hard behaviours, kindness that bridges hurt and sorrow, that shows the best of our being human.

The poet Wes Fessler put it brilliantly:

To Lift Each Other

Is it possible to build a dream by tearing others down?

Is there any way to fly if we refuse to leave the ground?

Not a gain was ever made while shoving someone else aside.

In the course of stopping others, our momentum is denied.

When we find the good in others, praising them for who they are,

we build speed for one another. We’re both able to go far.

It is possible to reach our dreams together if we try.

We must learn to lift each other if we ever hope to fly.

From poems for peace — Phonetic Planet

Donald Macaskill

Photo by Copper and Wild on Unsplash

I have been away in London for a couple of days of meetings and events. It’s been a week which has seen my head and mind in the space of technology, not least Ai, and its potential benefits and challenges to the social care sector and I hope to write about Ai in social care in a future blog.

But it has also been a week where I have been thinking about identity and what makes us truly human. My week of reflecting about identity started with the news on Tuesday that the Tech billionaire Elon Musk’s Neuralink company had successfully implanted one of their wireless brain chips in a human being.

A BBC article on the event stated that Musk’s company had joined a group of a handful of other companies which had undertaken such implants. It noted that:

‘Among the other companies to make similar advances in the field is the École Polytechnique Fédérale in Lausanne (EPFL), in Switzerland, which has successfully enabled a paralysed man to walk just by thinking. That was achieved by putting electronic implants on his brain and spine which wirelessly communicate thoughts to his legs and feet.

Mr Musk’s company was given permission to test the chip on humans by the FDA in May 2023. That gave the green light for the start of the six-year study during which a robot is being used to surgically place 64 flexible threads, thinner than a human hair, on to a part of the brain that controls “movement intention”, according to Neuralink.

The company says that these threads allow its experimental implant – powered by a battery that can be charged wirelessly – to record and transmit brain signals wirelessly to an app that decodes how the person intends to move.’

Over the next few days, the media was filled with discussion and debate on the risks and benefits of such developments. There are clearly a whole set of ethical issues involved. Is it appropriate that to achieve such ‘progress’ that so many animals are killed during experimentation? Does the technology raise issues of equality given that the majority of those 22,000 people who by 2030 will have had a potential implant fitted will have to pay for it? Are such processes leading to the commoditisation of human beings? What happens to the data that is created by such an implant? Will we be able to ‘download’ the mind? Where is the data to be stored? What happens when the person dies, and the chip is removed? There are as many ethical questions as there are potential answers.

But one question which intrigues me for the purpose of this blog is the extent to which such ‘brain chips’ and the massive resource attached to their development seem to be premised on a particular understanding of the human person and what constitutes a ‘whole’ or ‘purposeful’ person or life. It is a question about human identity. It is this question that has been part of the disability civil rights movement for many decades. The answer from that movement led to the social model of disability which states that it is not the person with a disability who is limited or ‘disabled’ but the way in which society and the environment is structured which serves to limit or restrict a person. We have – or so many might have thought – moved away from a medical or clinical approach to disability which tried to ‘fix the problem’ and which was premised on a notion of human wholeness if not perfection.

So not surprisingly in response to the Musk story and other similar ‘implants’ there has come the assertion that whilst many individuals – perhaps those who have become paralysed as a result of an accident – may indeed find such technologies as potentially liberating and curative, there are thousands of others who define their very identity and self through their disabilities. Is there a danger that these new approaches and technologies will seek to neuter disability? Will they place an even lesser value on those who are not deemed ‘whole’? There are a whole flood of ethical concerns in these new technologies.

Some of those questions came to my mind when in a spare hour I visited one of my favourite exhibition spaces in London, the Wellcome Collection, which is just opposite Euston Station. A great place to stop by before getting the train north. Its current temporary exhibition is entitled ‘The Cult of Beauty’. Displaying over 200 objects, paintings, films, and interactive displays the exhibition explores notions of beauty across time and cultures. It states:

‘Around the world, beauty is constantly seen as an ideal worthy of going to great lengths to achieve. But what are the driving forces that lead us to believe in a myth of universal beauty, despite its evolving nature?’

It questions established norms on beauty, demonstrates the influence of culture and not least gender on changing attitudes, challenges stereotypes and presumptions including some of those that exist around age. One of my favourite installations was Makeupbrutalism’s multimedia installation entitled ‘It makes no sense being beautiful if no one else is ugly’ and which ‘encourages us to question our beliefs, confront our raw selves beneath social pressure and to peel back the layers of the beauty industry.’

It notes:

‘We have created ideals of beauty which very few can live up to. We include and celebrate those we have assigned beauty to and exclude those we think are ugly. These hierarchies are harmful. When beauty becomes privilege, that is harmful.’

In a week where the very concept of identity was uppermost in my mind with reflections of what makes us who we are in Musk’s ‘brain chip’ future the exhibition quite rightly addressed the idealisation of the male and female human body not least in Greek and Roman art which has been so dominant in western culture. But sadly, for me at least, what was noticeably absent (except in a tangential way) was a direct challenge to the body idealisation that has ‘disabled’ so many millions across the ages. Such ‘disablism’, the viewing of disability as something not perfect or needing changed has been present from biblical narratives when those who were physically ‘not whole’ were the object of healing to paintings of medieval perfection which presented unpopular kings as ‘hunchbacks’ to the horrors of the way in which the study of faces ‘physiognomy’ was used by Nazi extremists as the tool of eugenics. All such responses based on an ideal which gave no room or tolerance to individual identity and certainly not to physical or intellectual disability.

Social care and support is perhaps in a unique place in being able to provide the space and affirmation, the authenticity and validation that enables a person to celebrate their unique identity. Social care at its best challenges the ‘wholeistic’ assumptions about disability, capacity and contribution and allows people to be who they are.

That is why social care and support is so important – it is not trying to fix someone in a clinical way, because of an inherited conscious or subconscious assumption that someone is not whole and must be ‘healed’, but it is rather fostering the ability for that person to become fully who they are and to thrive within their identity. It is truly identity affirmation at its best.

So regardless of age or appearance, label or limitation, social care support accepts and affirms the person for who they are. That’s why it matters and why it needs to be valued even more in a world of technological change, ‘brain chips’ and fluctuating ethical values. For me that is the essence of real beauty.

Donald Macaskill

This past week I finished telling one story and then started another. I find that one of the joys of being a parent is the time I spend at the end of a day in reading to my daughter. Despite her advancing years we continue the ritual of me reading and her listening, and then she reads on her own or creates a story for herself. There is a lovely rhythm in sitting still and shutting out the world and resting into a book; a peace which comes from words and simply holding the space of imagination between yourself and the listener. I have never read or heard the same story twice without it saying something different to me.

I would not give up those times for the treasure of the world not least in that I am very aware of all those parents who yearn simply to be with their child who is no longer here or parents who ache for their world to be peaceful and safe enough to grant them the space to read and rest.

Being able to tell a story, being safe enough to listen are privileges we too easily forget.

National Storytelling Week starts today. It is a yearly event run by the Society for Storytelling that celebrates the tradition of storytelling and aims to inspire a whole new generation of storytellers.

I have reflected many times in this blog about the power of human story and today I want to briefly highlight the potential of storytelling and listening in the care and support relationship.

I start from the premise that a story does not belong alone to the teller. The power of the oral tradition is that the listener to a story is compelled to pass that story on, to write the next chapter of its transmission in the ears of the listener who makes it their own and who gives it new life. Stories are not possessions to be trapped and locked in our memory they are tales which to which we are charged to give flight and life so that they become meaning and truth for another. That means for some stories that it is the responsibility of the listener to act on what is heard. Not to grasp the story but to pass it on.

There are very few roles in life where we are privileged with hearing the stories of the lives, the experiences, and the memories of those older than ourselves, and those who are coming to the end of their lives. That is one of the very real privileges of social care and healthcare in care home and community. We are honoured to be the listeners of the moment, we are honoured to hear the personal narratives of individuals, we are listeners to truth and anecdote filled with insight and wonder.

I recently read an excellent research article by Prof Lucy Dipper about the power of storytelling in social care. Lucy Dipper is a clinical linguist, and her research has shown the extent to which storytelling can improve older adults’ communication skills and wellbeing. She and her team established a project called Storytelling for older Adults in Residential Settings (STARS), a unique, group intervention for older people to practice telling their personal stories. Its results were remarkable.

I am sure I am not the only person who has witnessed the breathtaking power which story has to enable a person to share their deepest fears and to unlock the pain that lies within them. I have seen and heard people open up and use the trust which deep listening offers to tell the story they have spoken to no other; to share the story that perhaps they are telling themselves for the first time.

Social carers are listeners and tellers of the heart of the human story – it is a story of the essence of humanity … What we need to do is to create the environments of time and space that enable people to tell their story, to pass on the stories of self, community and heritage which are so easily lost in the din and noise of contemporary living.

But as I have often been told the best stories including personal narratives are not tales of the improbable or unlikely, they are not imaginings of the mysterious, but rather they tell of the ordinariness of human community. And in that very ordinariness, in the mess and contradiction, in the fragility and brokenness, is the extraordinariness of humanity. Human community is created when we are all of is enabled to be truly honest and authentic, when our hurts and wholeness, our tears and laughter are able to be shared in equal measure, and who we are is validated for who we are.

The social carer knows the power of human storytelling to enable someone to be truly their authentic self, but they also know the power of a story which is shared, to re-shape and change the world around us.

It is in the community of storytellers and listeners that a different ending is created, and the potential of new direction and changed outcome is realised.

So this storytelling week I hope despite the challenges facing those who care and support others and those who receive that care and support that we can begin to tell a story of a world that is better than ours; of compassion and care resting in reality and rooted in time. I hope we can find energy in the stories of our lives to change the malaise and apathy which suggests things will never get better and that new direction cannot be found. I hope we do not just listen to but tell again the stories we are privileged to hear and start to act their truth out in our living and loving.

I’ve always loved the words of the folk singer Mike Jones who wrote a song inspired by the work of his friend, Taffy Thomas. I hope we can all become storytellers of social care truth.

The Storyteller

 I’m a teller of tales, a spinner of yarns,

A weaver of dreams and a liar.

I’ll teach you some stories to tell to your friends,

While sitting at home by the fire.

You may not believe everything that I say

But there’s one thing I’ll tell you that’s true

For my stories were given as presents to me

And now they are my gifts to you.

 

My stories are as old as the mountains and rivers

That flow through the land they were born in

They were told in the homes of peasants in rags

And kings with fine clothes adorning.

There’s no need for silver or gold in great store

For a tale becomes richer with telling

And as long as each listener has a pair of good ears

It matters not where they are dwelling.

 

A story well told can lift up your hearts

And help you forget all your sorrows

It can give you the strength and the courage to stand

And face all your troubles tomorrow.

For there’s wisdom and wit, beauty and charm

There’s laughter and sometimes there’s tears

But when the story is over and the spell it is broken

You’ll find that there’s nothing to fear

 

My stories were learned in my grandparent’s home

Where their grandparents also had heard them

They were given as payment by travelling folk

For a warm place to lay down their burdens

My stories are ageless, they never grow old

With each telling they are born anew

And when my story is ended, I’ll still be alive

In the tales that I’ve given to you.

The History Press | The Storyteller: A poem about the art and practise of storytelling

Photo by Nong on Unsplash

Donald Macaskill

 

For a long time, January has been my tidying month. A month where instinctively I feel the need to tidy cupboards and remove the nagging guilt of messy drawers and overfilled space. It’s also a time when I try to get rid of so many of the virtual and physical papers and notes I seem to build up over the year. It’s a cathartic process which is achieved in fits and starts and doesn’t always work as well as it should.

In the middle of going through one of my many notebooks this past week I came across this quote which was relating to a phone call a couple of months ago:

“I worry that in all the pressure to save resources that we are being pushed to cut time spent with people to the barest minimum.” Beside it I had written – ‘stealing time robs presence.’

I’ve often reflected in this blog about the nature of social care and support as being a dynamic which is centred around the forming of real, meaningful, and authentic human relationships. Intrinsic to that is the truth that relationships don’t just happen, but they have to be nurtured and attended to, like plants in a garden they require to be nourished and supported. Fundamental to this is time, that most precious of human commodities which gives space for encounter to occur and exchange to grow. The flourishing of social care is the depth to which a relationship enables real communication and sharing to take place.

Presence is critical to social care. It was one of the bywords of the disability civil rights movement a few decades ago as it campaigned to close long stay asylums and institutions that without people being physically present, without folks being there in the midst of community then they would inevitably be excluded and at risk of harm. Out of sight, out of mind. But on its own presence is not sufficient – being there is pointless unless it results in the person feeling that that presence makes a difference.

Recently the Scottish academic nurse/theologian John Swinton has been undertaking work with the social care sector in Australia. He has published some of the findings in a paper entitled ‘Being Present and Meaningful Engagement for Aged Care Residents Living With Dementia.’ The paper describes the findings of a project which sought to ‘understand care workers’ experiences of providing care to residents, the challenges they face in being present with residents and [the] support that enable them to be more present and provide person-centred care.’

The study of care workers across three care settings showed the critical importance of presence for residents living with dementia, it highlighted the value staff saw in being present whilst at the same time acknowledging the barriers which prevented this from happening at real depth including ‘staff shortages, competing demands of the role, and time-related impediments.’

The research recognises that there is no shared understanding of how we define presence in a care and support relationship but that two commonly held elements seem to be meaningful engagement and person-centred care. The research has two key findings, namely that the establishment of trust is key to the maintaining of relationships and that presence does not just happen but has to be organised, supported and structured as a priority with adequate supporting resources and adequate staffing levels so that individuals and the wider community can be sufficiently cared for. Importantly the research concluded that:

‘Our findings suggest that care worker presence has the potential to contribute to both the physical and emotional health and well-being of residents living with dementia, and to the well-being of the staff that care for them.’

In wider society there is a growing emphasis on the importance of ‘being present’, of recognising the key contribution to relationships which results from time being spent with another. But time has to be rich in focus and attention rather than overfull with distraction and avoidance. We are encouraged to cease or limit the distractions which get in the way of our being with other people. Coincidentally in the United States this day is one which is being celebrated and recognised as #NoPhonesAt HomeDay – a day when people are asked to set aside the distractions of their mobile phone and engage simply in ‘doing things’ or ‘being’ with family. I can sense the tremors out there!

We need presence to enable us to tell our story, to be listened to and to be heard. That is not just important in dementia care and support or in our closest relationships, but rather it is fundamental to all engagement and togetherness. There is a massive difference between listening to someone and enabling them to feel that they are heard, of worth and value through your presence.

I fear just like my note at the start of this blog that stealing time will indeed rob presence, that we will starve our encounters of paid care of the sufficiency of time because we consider that simply being present is unnecessary or not a priority. But as we all know time is an essential ingredient for people to open up and form a relationship with us, and it is also the essential prerequisite for preventative, watchful care and support. If we crowd out our presence by care activism, then we give no space to enable our presence to bring forth real support and compassion.

The beautiful nature poetry of Nan Shepherd reminds us that we are all charged with the responsibility of incarnating presence. Social carers in care home or homecare do that every day – it ill fits our humanity if we seek by contract and cost constraint to limit the encounter of our humanity by reducing the ability of staff simply to ‘be present.’

In her poem ‘Real Presence’ Nan Shepherd writes:

Clear as the endless ecstasy of stars
That mount for ever on an intense air;
Or running pools, of water cold and rare,
In chiselled gorges deep amid the scaurs,
So still, the bright dawn were their best device,
Yet like a thought that has no end they flow;
Or Venus, when her white unearthly glow
Sharpens like awe on skies as green as ice:

To such a clearness love is come at last,
Not disembodied, transubstantiate,
But substance and its essence now are one;
And love informs, yet is the form create.
No false gods now, the images o’ercast,
We are love’s body, or we are undone.

from In the Cairngorms (Edinburgh: The Moray Press, 1934).

https://www.scottishpoetrylibrary.org.uk/poem/real-presence/

Photo by Brett Jordan on Unsplash

It has been an astonishingly busy week in terms of national media and much of it has centred around the injustices experienced by Post Office postmasters and mistresses and the political fallout from an amazing ITV drama. With such a busy media week it can often be the case that some stories are lost to attention and wider audience, and it is one of these which I want to focus on this week.

A few years ago, in 2006 the late MND campaigner Gordon Aikman used the Freedom of Information legislation which exists in Scotland to expose the sad reality and truth that there were many individuals who were deemed as requiring social care packages but who died before they were able to receive this support and care. There was understandably at the time an outcry and real shock when this truth became apparent to the wider public.

This past week the Times journalist Elysia Taylor-Hearn published an article on the back of a similar exercise which she and colleagues had undertaken. I was asked to comment on the results and did so by sharing one of the many stories which I am aware of.

The Times research showed that the number of people who died while waiting for a social care package (either in a care home or in their own home) had doubled in the last six years and that in 2022 a total of 632 people had died. (Indeed, this is unlikely to be the total given that not all areas reported data.)  At this present time in Scotland there are thousands of people who are awaiting a social care assessment.

In my experience and involvement in social care I have never known the levels of unmet need to be as high as they are now, and that is just the tip of the iceberg because in the last few years the level at which you are able to get support has risen and risen. The high level of eligibility means that there are hundreds more today who are not even on the waiting list for assessment who would have been on these lists a decade ago.

The last few weeks have seen a significant increase in the number of my colleagues who have spoken to me about the length of time it is taking to get an individual assessed and able to enter a care home, and the length of time it is taking to assess someone as qualifying for a package of care in their own homes. Shortage of assessment staff is one of the reasons as is their exhaustion, but the primary reason is the lack of financial resources to be able to pay for care and support the whole care system from assessment to delivery.

The statistics are terrible, and I would suggest a shameful indictment on the state of social care in Scotland at the present time. But what is more upsetting and inducing of anger is the fact that these are people not numbers; that behind every story of a delayed care package is a life limited and put on hold or indeed at its worst a life lost. This is horrendous for the person living with dementia or any condition that requires professional care and support, but it is an exhaustive nightmare for the thousands of family carers who are bled dry of energy and on the verge of their own breakdowns and health collapse.

I mentioned in the Times article the story of a 95 year old who had spent months waiting to be assessed and approved for a place in a local care home and had died before she ever got there but in truth hers is not an unusual story and it is heart-breaking for care providers and staff who know the level of support that someone is desperately needing to then discover that that person has died before they can be better supported and cared for.

This is a whole system failure. It is a failure to prioritise social care, to work with all partners towards the alleviation of need where it is happening – which is in our communities. It is a fruit of an obsessive concentration on the needs of the acute NHS, on hospital discharge primarily, at the expense of the health of the whole social care and health system. It is both the fruit of failed planning and perverse priority.

At the start of another year I fully expect to hear the mantra of ‘We’ve never invested as much money as we are doing’ – a truth which has a hollow echo when it is weighed up against the truth of people dying waiting to receive care and support. Okay we have never invested so much but it is clearly and obviously simply not enough or at best it is going into the wrong priorities and targets. The investment into social care is simply not saving the lives of the hundreds who are dying whilst waiting. And I cannot but also note another ‘quiet’ media story this past week which shows the current costs of the National Care Service (which to date has not made a difference to one citizen and their social care needs) are running at £800,000 a month.

We have to start to do things differently and better. Every day somewhere in Scotland nearly two people are dying without the care and support they need. That is shameful. It is evidence of the abandonment of social care provision and need. It is not reflective of a society that prioritises in the right way and that values all regardless of age or condition.

Donald Macaskill

 

Today is the 6^th January and from my time in Sunday school all those years ago I can remember it as the day (twelve after Christmas) when the three Wise Men or Magi were celebrated as bringing their gifts to the Christ Child. It was also the day by which, I seem to remember, all the Christmas decorations had to be taken down for fear of a year of bad luck. Mind you the latter might have had more to do with a maternal desire to get life back to a non-tinsel normality than any ancient divine retribution for stray baubles or lingering trees.

It wasn’t until I was a bit older and had started to listen to the stories of the Gaeltacht or to those I heard as I did a bit of travelling that I discovered that the 6^{th of} January had and has a much wider significance. I was reminded by this when watching the Channel Four Great British Bake-off Festive television special over the holidays when the contestants were challenged with making a “galette des rois.” I won’t put any spoilers out there but the galette is a French cake for and eaten on Epiphany right across western Europe. With links to the pre-Christian Saturnalia festival the cake contained a “fève” which was a lucky charm, usually a bean, and which was hidden in the round golden cake to be a reminder of the sun bringing its light back into the darkness of winter.

There are other customs around this time of year. In Ireland there is Handsel Monday which was celebrated on the first Monday of the New Year and was a day on which children would visit neighbours and relatives to ask for a ‘handsel’ – a small gift of money. It was bad luck to refuse a child this gift.

In Skye in the childhood of my grandmother, though I don’t remember her directly talking of this, there was a much older tradition which associated Epiphany as being the ‘Little Christmas’ or Là Challuinn and Nollaig Bheag in Gaelic. Indeed, the tradition of celebrating the coming of the Christ-child on the 6^th January (as is still the case today in the Orthodox Christian tradition and those who follow the Julian calendar) is one that survived for many generations in the north west of Scotland.

The characteristic of the 6^th January ‘Christmas’ or Epiphany seems to have been very different and some of this is still seen in Ireland where it is sometimes called ‘Women’s Christmas’, particularly in Cork and Kerry. The day takes this name from the tradition of men taking on the household duties for the day. In traditional rural and agricultural communities there were few days where women were not involved in working, doing household activities, the acts of weaning, child-rearing and of caring for family. This was one day when the role of women was valued and the men took over the caring, cooking, and cleaning. This allowed women to go out and meet with friends and to enjoy themselves. It was their Christmas!

In parts of Irish spirituality this day became a symbol of the intrinsic value that should be given to women and even more so to the critical activities which enabled society to function and which were culturally associated with women.

We are a long distance from such times but it is interesting to note in Irish media even in this last week a fair bit of discussion about the importance of continuing to revive the idea of a ‘Women’s Christmas.’

I am not going to get into the rights and wrongs of such a discussion, but I do find that it fascinates that on a day when many celebrate the ‘Wise Men’ that there is in some old Celtic traditions a space for recognising the contribution and role of the female and the criticality of acts of care, compassion and community.

Just six days into 2024 is it too much to hope for a year where compassion and care takes centre stage and topples the ‘wisdom’ of the priorities of our traditional economy and politics? Is to too much to hope for the turning of the tables of expectation to the extent that people who require and need care and support became centre stage of focus rather than an afterthought of priority? Is it too much to hope that epiphany could be the manifestation of goodness rather than the continuation of commerce?

The start of a new year with all its celebrations and activities, all its fresh starts and new beginnings can be especially hard for those for whom this will be yet another year without. It is in those without times when memory aches the heart and the absence of a loved one cuts into your soul, that we need to all of us hold onto the hope that can drag us into the dawn. Maybe that’s why I like the 6^th and Epiphany, seeing it not as an end but a dawning, a start, a re-orientation which places a crown on care and gifts the foolishness of compassion a centre stage for the coming year.

Whether today we celebrate the coming of wisdom or the Women’s Christmas it is in the words of John O’Donohue a time to slow down.

 

This is the time to be slow

This is the time to be slow,

Lie low to the wall

Until the bitter weather passes.

 

Try, as best you can, not to let

The wire brush of doubt

Scrape from your heart

All sense of yourself

And your hesitant light.

 

If you remain generous,

Time will come good;

And you will find your feet

Again on fresh pastures of promise,

Where the air will be kind

And blushed with beginning.

 

By John O’Donohue. From  Benedictus: Book of Blessings

Time to be slow – Poems on the Underground

 

Donald Macaskill

 

Photo by Damien Creatz on Unsplash

 

 

On the edge of another year, I am reminded of my late mother’s Hogmanay phrase: “Well at least I’ve made it through another year!” Such Hebridean ‘positivity’ was reflective of many folks in my upbringing who as they aged felt that life was about survival and simply getting through the tick of time until the seconds ran out in the sand of the hourglass. But of course, our annual celebrations of the chronology of our calendars should be more than simply a feeling of triumphant survival they should also be an invitation in the dark depths of winter to use the turning of the years as an opportunity to re-orientate our living and our loving. A New Year gives us the chance – but for a moment – to start and continue as we mean to be throughout the days and months ahead, to create a year of living positively and to age happily rather than inevitably.

Earlier this year an 85-year Harvard University study found that the number one thing that makes us happy in life and which helps us to live longer is not exercise or healthy diet, the money we have or do not have, it is not our status or career, but rather it is the positive relationships we have. More than anything else the source of happiness and that which makes us live longer is the relationships we nurture and develop. As I watch the television adverts for diets and gyms, the emphasis on getting your holiday sorted or changing your job, all of which seem to be the currency of this time of year, I see very little about how we can better nourish our social health or what the Harvard academics called our ‘social fitness.’

Another Harvard study of 14,000 adults over the age of 50 found that the people who had the highest satisfaction with aging had a 43% lower risk of dying from any cause over a four-year period compared with those who were the least satisfied. ‘The study also found that people more satisfied with the aging process had lower risk for conditions such as diabetes, stroke, cancer, and heart disease; better cognitive functioning; were more likely to engage in physical activity and less likely to have trouble sleeping; were less lonely and depressed; and were more optimistic with a greater sense of purpose.’

So there is a huge connection between health and wellbeing as we age and the possession of positivity around age and ageing. As we edge our way towards another year it would be societally and individually beneficial for us to challenge the stereotypes of age which dismiss ageing as inevitable decline, which spout the mantra of ‘demographic timebombs’ and perceive older age as all about cost and deficit, and something we need to somehow  control and manage.

These two studies about positive ageing and social fitness show why social care is so critical. Yes, we have to be clinically well and yes, it is important that people are cared for and supported. But we are not units on a chart, statistics on a sheet of paper detailing delayed discharge, avoidable hospital admission or A&E waiting times. These three areas of focus are the myopic concerns of those who fail to grasp that it is only through an adequate and well-resourced social care system that the ‘social fitness and health’ of our citizens can be protected and enhanced. Getting out of hospital faster will benefit us clinically but if we end up being lonely and isolated behind four walls and a front door shut to the world and devoid of contact, then our social, emotional, and psychological health will soon result in our re-admission to a hospital ward. If we simply invest in a reactive emergency health system and not in preventative, upstream social care and relationship building in our communities – then we are simply prolonging the suffering of the patient rather than renewing life.

I have many aspirations for 2024 but the over-riding one is that we address the political and societal failure to recognise the significance and priority of social care. Which means that we at last recognise social care and all it provides as a major economic driver for a society that claims to focus on the wellbeing economy, that we nurture and sustain businesses and organisations that are rooted in local community and many of which are led by women and which through entrepreneurship and innovation are talents beyond our nation. This is what a foundation economy should be all about.

And yes part of all this elevation of social care as a sector means that we begin to seriously address the endemic ageism, age discrimination and negative stereotypes around older age.

So, 2024 should surely be a year of living positively being aware of the importance of a positive attitude to ageing and  recognising its root at the heart of happiness. But 2024 has also to be a year of recognising that social fitness is intrinsic to societal and individual wellbeing and that it does not happen without economic investment and political priority. Put simply 2024 has to be the year of social care and a celebration of all the dramatic life-enhancements it can bring. It should not be about how do we get through another year, it should and must be about positivity and progress for all.

Happiness is such an individual concept, but I think the depth of self-value and relationships are at its heart. The Scottish poet Stuart A. Paterson beautifully expresses this in his poem entitled: Happiness.

I’ve made my own Museum of

Happiness, which isn’t built of brick

or stone or wood, its walls the thickness

of the day, a flapping tongue of canvass

held in place by rope & peg to stop

it flying off & joyously away

up into everywhere in time & space.

I’ll carry it around with me to pitch

beside the sea, in a field or by

that river, a billowing rickety marquee,

a travelling show of personal delights

performing one night only & forever.

What sights! What wonders! See those things unseen

except in meanwhiles, vivid dreams,

smile, laugh & gasp & live a lifetime

somewhere in between the daily grind

of minutes into hours, be amazed

by happiness’s alchemy

transmogrifying days of certainty

to joyous, raucous aeons of impossibility.

Step right up, pay nothing, be called in

to watch the carnival of you begin,

the show to beat all shows where nothing’s

out of bounds & every good thing goes

around & comes around again, not down

or out & you’re the hottest act in town,

the permanently top display, the troupe

of you booked solid every single smiling day.

Happiness by Stuart A. Paterson – Scottish Poetry Library

I hope you enjoy the ‘carnival of you’ in the days and weeks ahead.

Donald Macaskill

Photo by Ian Schneider on Unsplash

I have always loved going to art galleries and museums since I was very young. Part escape, part inspiration, whatever the reason they have been places that have spoken to me. Some paintings leave a particular mark, and I can still through the fragments of memory remember the first time I saw a special work and the feelings or sense they left me with. One of those is ‘Lady in a Fur Wrap’ which was displayed in Pollok House in Glasgow and which I saw first on a school trip. I can still remember the sense of my breath being stolen by the enigmatic wistful beauty of the piece and in particular the quality of light and shadow that the artist had managed to convey.

The painting was attributed at the time to El Greco though recent research has established that it is not actually one of his pieces. Be that as it may, at the time it started for me a fascination with the work of El Greco or more accurately a fascination with the way different painters portrayed light in their work. El Greco is a master with light and is well recognised for his use of intense light and deep shadow. Through the interplay of both he creates mystery and magic on canvas.

Light for anyone who has lived as I have in places in the north, in my case Orkney and Skye, is a hugely significant reality especially at this time of the year when days are so short, and the night seems to cloak its darkness around us for so long.

As we approach Christmas and especially after our shortest day on Friday I am reminded of the ancient Celtic and Gaelic emphasis upon light. There was a particular special place in community memory and reflection on the Celtic past in many Hebridean areas, initially sitting sympathetically alongside Catholic Christianity but later marginalised by Calvinist Presbyterianism. Such folklore and attention at this time of the year which I can well remember in the stories of my grandmother and her generation centred around Lugh who is the Celtic god of light and giftedness and is often designated as ‘The Shining One.’

Light is seen as the birther of all life. Without light there can be no life.

I have always thought of the care and compassion which is at the heart of social care as being about a different way of seeing life, of it being a light which chases the darkness of negativity and limitation and lets the positivity of possibility reign. If it is anything at all social care at its best is about the enabling of ourselves and others to achieve to our fullest potential. It is a bringing of light to the shadows of living, the enabling of illumination in the depths of hurt. It is a light which takes people beyond diagnosis and label to venture into living with conditions and finding wholeness where it can be found.

The ancient Gaels were fascinated by light and it was inextricably linked to how they saw community, how they perceived our inter-connectedness and how they envisioned the rhythm of our dance with the natural world and cosmos.

No one captures the Celtic sense of light and what it means for modern living better than the Irish poet and philosopher John O’Donohue. In his final work ‘To Bless the Space Between US: A Book of Blessings’, O’Donohue argues that one of the asks of modern living is the need to re-discover our ability to bring blessing or light to another. He suggests there is a unique power in the relationship which is that of care and compassion to and through another.

He writes:

‘There is a quiet light that shines in every heart. It draws no attention to itself, though it is always secretly there. It is what illuminates our minds to see beauty, our desire to seek possibility, and our hearts to love life. Without this subtle quickening our days would be empty and wearisome, and no horizon would ever awaken our longing. Our passion for life is quietly sustained from somewhere in us that is wedded to the energy and excitement of life. This shy inner light is what enables us to recognize and receive our very presence here as blessing.’

Despite all the challenges facing those who work and provide care support there is one thing that remains true, I believe, and that is the power of the care relationship to change life, in darkness to bring light.

This Christmas, as tens of thousands of women and men, in all weathers and in many circumstances will leave their own home and hearth to be with others, if there is any truer image of incarnating light and love in community, I do not know what it is.

Donald Macaskill

In announcing his budget for 2023 the President of the United States Joe Biden made a speech in the White House in which he said:

“My dad had an expression.  He said, “Don’t tell me what you value.  Show me your budget, and I’ll tell you what you value.”  “Don’t tell me what you value.  Show me your budget, and I’ll tell you what you value.”

Never were truer words spoken because when we strip away the rhetoric and soundbites so often the currency of contemporary political debate we reveal the reality of what is considered a priority and what is given importance. A national budget can either walk the talk or continue the deceptive delusion.

These thoughts were in my mind this past week as, with colleagues at Scottish Care, I continued a tour of the country where I heard from frontline staff, managers and employers about what they considered to be the critical issues of the moment in care home, care at home and housing support services. Amongst all the issues raised the ones that stood out were how we reward and recognise our workforce and how we fund sustainable social care services especially in remote and rural communities.

Our Scottish Government will publish its annual budget in the Scottish Parliament on Tuesday 19th. Many groups and organisations have called for their sector to be prioritised and protected. Many have argued against and raised concerns about the cuts to funding which have already been experienced in what is a time of growing austerity and restriction. Scottish Government ministers have been consistent in arguing that this is going to be the hardest budget within the devolution era. Put simply Tuesday and its message is going to be challenging. But it will inevitably demonstrate the values and priorities of the Government and I hope will be divergent from the Westminster’s Chancellors recent finance statement which evidenced tax cuts above funding public services.

It is at such hard times that I think we need to hold an external mirror to our collective decision making and when political leaders need to be influenced by the neutrality of standards and rights rather than attracted by the allure of popularity or political expediency.

It’s maybe an accident of timing but no less interesting for that, that this Budget comes 9 days after Human Rights Day on which I reflected in last week’s blog.

Over the last decade the concept of human rights budgeting has become more and more talked about. This current Scottish Government has openly declared the significance of human rights legislation and indeed we are shortly to see the publication of a planned new Human Rights Bill. But legislation alone does neither protect or help to realise and fulfil the human rights of citizens. The way a government spends its money, the choices it makes in fiscal spend and priority can either take us further down the road towards realising rights or can put up added barriers and blocks in the way.

As a recent briefing paper stated:

‘Human rights budgeting [HRB] means that decisions on how money is raised, allocated and spent are determined by the impact this has on people’s rights…

HRB means that the process of setting a budget should be driven by three principles.

• Transparency

Parliament, civil society and the public should have accessible information about budget decisions.

• Participation

Civil society and the public should have opportunities for meaningful engagement in the budget process.

• Accountability

Budgets should be subject to oversight and scrutiny that ensures accountability for budget decisions and the impact these have on human rights.

HRB means that the actual content of a budget (i.e. the decisions taken around how money is raised, allocated and spent) should be in line with the government’s human rights obligations.’

I think we can all agree that we are some steps away from a human rights budgeting process and content. But it is the latter I’ll briefly conclude with.

Is our Budget on Tuesday going to better realise the human right to social care and support?

Is it going to protect and further the human rights of older Scots?

Those are the two lenses by which I’ll reflect on the words that come from the ministerial benches. In Biden’s terminology will it show what is valued?

Will we value the astonishingly dedicated frontline staff in care home and homecare services I’ve been meeting over the last few weeks who are continually told ‘We value you’ but for whom £12 an hour will not cut it but fairness at £15 an hour will help to make words of solidarity sound real and not hollow?

Will it recognise the shameless lengths of time that people are waiting on for a social care assessment, for a place in a nursing home or a package of care and support?

Will it do something for the reality that more and more care homes are closing and homecare organisations are going to the wall not because there is no need but because they simply cannot make themselves sustainable with what the State is prepared to pay?

Will it move us to ending the inequity of local authorities being both provider and contractor and hypocritically treating one group of staff (their employees) so much better than another (the third and independent sector) through their contracting process?

Will it put social care at the heart of our economic strategy recognising at last its contribution to the economic and social wellbeing of Scotland?

Will it walk the talk or just flatter to deceive?

In all this talk of finance and priority and value, I am reminded of the current Poet Laureate Simon Armitage and his poem about a ten-pence coin from its making in the mint. It touches in a humorous but direct way on poverty and true societal value.

Ten Pence Story

Out of the melting pot, into the mint;
next news I was loose change for a Leeds pimp,
burning a hole in his skin-tight pocket
till he tipped a busker by the precinct.

Not the most ceremonious release
for a fresh faced coin cutting its teeth.
But that’s my point: if you’re poorly bartered
you’re scuppered before you’ve even started.

My lowest ebb was a seven month spell
spent head down in a wishing well,
half eclipsed by an oxidized tuppence
which impressed me with its green circumference.

When they fished me out I made a few phone calls,
fed a few meters, hung round the pool halls.
I slotted in well, but all that vending
blunted my edges and did my head in.

Once I came within an ace of the end
on the stern of a North Sea Ferry, when
some half-cut, ham-fisted cockney tossed me
up into the air and almost dropped me

and every transaction flashed before me
like a time lapse autobiography.
Now, just the thought of travel by water
lifts the serrations around my border.

Some day I know I’ll be bagged up and sent
to that knacker’s yard for the over-spent
to be broken, boiled, unmade and replaced,
for my metals to go their separate ways…

which is sad. All coins have dreams. Some castings
from my own batch, I recall, were hatching
an exchange scam on the foreign market
and some inside jobs on one arm bandits.

My own ambition? Well, that was simple:
to be flipped in Wembley’s centre circle,
to twist, to turn, to hang like a planet,
to touch down on that emerald carpet.

Those with faith in the system say ‘don’t quit,
bide your time, if you’re worth it, you’ll make it.’
But I was robbed, I was badly tendered.
I could have scored. I could have contended.

Simon Armitage: Ten Pence Story (typepad.com)

Donald Macaskill