Scotland can’t wait… social care needs to act about Parkinson’s

On April 11th there will be a global coming together for what for a number of years now has been recognised as World Parkinson’s Day. It sits within Parkinson’s Awareness Month which is designed to increase knowledge about and awareness of the condition. Like many people Parkinson’s has touched my life professionally and personally. It is a condition which affects around about 13,000 people in Scotland and every week it is estimated that around 30 new people are diagnosed with Parkinson’s. Anyone working in social care services and supports will be aware of the extent to which this condition affects the daily lives of so many across the country, and also how poor our response to the condition has been and still is. Those of us working in social care recognise the truth that Parkinson’s is the fastest growing global neurological condition.

This was exceptionally well argued in the latest report from Parkinson’s UK in Scotland, which was published in January 2024. The report is entitled ‘Scotland can’t wait’ and is a cogently argued, data packed document listing the many gaps in support for people living with Parkinson’s and affirming the truth that these people and those who support them cannot continue to wait for the issues of failure to be addressed.

It is, sadly, a very familiar story to so many people who live with neurological conditions in Scotland today. Whether it is dementia, or MND or Parkinson’s there is a systemic failure to respond to conditions which can be significantly supported and alleviated were the right support to be in place. We may as a system and nation be good at publishing plans and strategies but our implementation and driving of real change that makes a difference on the ground falls woefully short. This truly is a failure to care.

The ‘Scotland can’t wait’ report has a whole host of recommendations for NHS Boards, on investment in medication, on workforce development and increased capacity and much more. It is worthy of both reading and wider dissemination. A section which particularly interests me is one which emphasises the need to do more around mental health and in relation to those who live with Parkinson’s who develop dementia.

Parkinson’s manifests itself in diverse ways and no two people demonstrate and evidence  the exact same responses to the disease. It is estimated that there are over 40 distinct characteristics that make up the Parkinson’s condition. The NHS website describes it in the following terms:

Parkinson’s disease is a condition in which parts of the brain become progressively damaged over many years.

‘The main symptoms of Parkinson’s disease are involuntary shaking of particular parts of the body (tremor); slow movement and stiff and inflexible muscles.

A person with Parkinson’s disease can also experience a wide range of other physical and psychological symptoms. These include depression and anxiety, balance problems (this may increase the chances of a fall), loss of sense of smell (anosmia), problems sleeping (insomnia) and memory problems.’

In Scotland it is estimated that 30% of those living with Parkinson’s have dementia and an estimated 50% need support with daily activities. The conversations I have with both care home and care at home providers and front-line staff illustrates that supporting people with Parkinson’s is increasingly also about supporting people who are living with Parkinson’s and dementia.

The recommendations of the Scotland report highlight the gaps and they range from a lack of awareness amongst NHS generic mental health professionals about the nature of Parkinson’s; the need to increase the neuropsychology and neuropsychiatry workforce to meet the needs of people with neurological conditions to the need to develop better support for future care planning (including Powers of Attorney) before someone develops dementia.

Over the years I have noted a growing relationship between some Parkinson’s services and the social care and dementia service sector, but this occurs more often than not through local relationships and professionals committed to working collaboratively around the needs of a person. The Parkinson’s UK Scotland report quite rightly argues that such collaboration and co-ordination needs to be much more systematic, planned and adequately resourced. At the moment I very much fear that people living with Parkinson’s who develop dementia are being doubly excluded and not achieving the level of support and care for their dementia that they rightly deserve. The idea of joint clinics and the inclusion of Parkinson’s specific education within general social care dementia training are two good examples of how progress could be made.

In speaking to a family member recently she remarked to me how she thought she was well prepared and aware of what the Parkinson’s journey was going to mean for her partner but that she had been blind-sided by the changes in him which she now (with hindsight) recognised as his developing dementia. These included him starting to have bad and frightening dreams, his inability to make a decision and keep to an agreed plan or action; that he was finding basic activities like getting dressed or using the TV remote control really difficult. She had not known of the significantly increased risk of developing dementia if you have Parkinson’s and neither, she told me, had most of her friends in support groups been aware of this factor.

A real legacy of this year’s World Parkinson’s Day would be for there to be positive action at all levels, not least national government, to address the recommendations of the Scotland can’t wait  report and for those of us who work in and deliver social care supports, not least dementia, to better understand the consequences of a condition which is still so misunderstood and sadly all to frequently ignored.

Over the last couple of years, the Parkinson’s community shared hundreds of poems with Parkinson’s UK for World Parkinson’s Day 2022 and 2023. They were happy, funny, sad and thoughtful and told the world how Parkinson’s has affected individuals. Here is one which demonstrates the positivity of so many I have known who have lived with Parkinson’s. But that positivity demands Scottish society and care and health leadership to play its part because Scotland truly can’t wait.

Shiona from Dumfries and Galloway  wrote:

I can still breathe

I can still bend

I can still laugh

I can still love

I can still fly

Donald Macaskill

Living in the face of death: not just a long goodbye.

This past week I have had a couple of conversations which though significantly unconnected have in my mind touched and influenced one another. One had to do with reaction to a television advert from the Alzheimer Society, the second a conversation with a Filippino care worker who is preparing to celebrate Black Saturday today.

The Long Goodbye is a very emotional television advert with a voice over by the actor Colin Firth which shows a son delivering a eulogy at his mother’s funeral and recalling the many moments in his mother’s dementia experience where a part of her ‘died’ ‘again and again’.

The advert created by the Alzheimer Society has resulted in a wide debate on social media and amongst dementia organisations about its merit and what it says about the lives of those who live with dementia. Many have stated that it diminishes the lives of those with dementia by presenting it as a series of deaths and losses.

The CEO of the Alzheimer Society, Kate Lee in response to the ‘backlash’ commented:

“This campaign seeks to tell the unvarnished truth about the devastation caused by dementia and it is very much informed by people affected by the condition.

The loved ones of people with dementia often describe it as a ‘living grief’ as, bit by bit, the disease’s relentless progression causes part of the person to die…again and again and again.

“But there is hope. Alzheimer’s Society, through its support services, is there for people affected again and again as they face the grim reality of the long goodbye.”

The Alzheimer Society has gone on to argue that the advert was created and made with people who have dementia and their families, that it is seeking to raise awareness of the fact that 900,000 people have dementia and that nearly 80% of respondents to a recent survey weren’t aware that one in three people born in the UK today will get dementia. It argues that ‘Many may find the advert upsetting. But the reality is that dementia is devastating.’ They argue that this campaign is not about fundraising but raising the awareness of wider society that current approaches to dementia cannot go on as they are as we move to a situation where by 2040 1.4 million people will be living with the condition.

This past week I have had several conversations with both individuals who are living with dementia but also their family members and allies and everyone has mentioned the TV campaign. It has led many to feel despair and hurt and indeed shock about the way in which it portrays living with dementia.

Having watched the clip myself part of me can absolutely see what the creators were trying to do and achieve, but a huge part of me cannot but feel this is a massive and damaging misstep by a charity which should be focussed on the affirmation of life regardless of diagnosis.

I know just how upset and hurt people have been and how staff in care homes and in the community have had to speak about these issues with residents and clients.

At the centre of the debate about the advert is the issue of anticipatory grief something I have spoken and written about a great deal. What does it mean and how does it feel to live your life in the knowledge that the disease within you will kill you? How do you as an individual and those who are around you in a company of love and compassion deal with the changes which are happening because of the disease? How do you better support yourself for the act of dying and the work of grieving?

For me there are no easy answers to any of those questions and the way in which I have worked through the loss of a loved one has been and will be different to anyone else. But what has been important for me is that every moment mattered, every conversation counted, and that the preciousness of time became an invaluable gift. Far from my losing a loved becoming a series of long goodbyes I tried (and admittedly didn’t always achieve) to have a sense of every encounter being a new beginning or a hello, an introduction to a new part of the person; a realisation that even in barrenness and hurt there was growth and newness, possibility and promise even in pain and emptiness. That the person I loved was still the person before me, just different, still wanting and reaching out for love and touch, for a renewed sense of being held by my humanity.

I mentioned another conversation I had this week.

This was one I held with a nurse who was working in a care home and who comes from the Philippines. We were chatting about the upcoming holiday weekend, and I asked her what she was planning. She told me that she would be celebrating Easter Sunday but that first she would be recognising Black Saturday which was so important to her, her culture and to many other people from the Philippines.

I discovered from her that Black Saturday was a day of fasting for Catholics in the Philippines and that it commemorated the day that the crucified Jesus lay in his tomb after he had died on Good Friday. It was the day in between deep sadness and celebratory joy. I was told that Black Saturday is a significant day for people in the Philippines. It is recognised in diverse ways including the famous healing rituals in Siquijor where traditional medicines using herbs and roots are created. It is a day of quietness, limited noise, peace and solemnity.

But importantly my partner in conversation said that it is a day when you are meant to spend time thinking about how you are living your life in the face of your own death; how you are healing the relationships which might be fractured or broken; how you are using your voice to speak peace and healing; how you are using your hands to bring solace and purpose. It is an active day of contemplative preparation. It is a central requirement between loss and hope to be open to listening, active in preparation, and instinctive in being with others.

It struck me as she spoke to me and as I reflected later on the real upset caused by the Alzheimer advert that Black Saturday was all about anticipatory grief.

So I will spend some part of this Saturday thinking about how I can better support those who wait upon death. I will do so not thinking that every moment has to be strained of joy and purpose but in honesty being prepared to accept that the tears of living are made with joy and sadness. I will remember those moments when my heart panged with a sense of loss caused by the changes of a look that did not remember me or a memory lost into time, and I will reflect on my truth that despite all the absence that there was an astonishing presence of love and touch, of togetherness and being.

And yes, I will in the days and weeks ahead try to convince others of the importance of being more aware, more committed, more energetic in righting the wrongs of a society that displaces dementia and those who live with the disease, that treats them with financial and care discrimination, one that is so unequal.

I do not and cannot believe that a life facing a dementia death is calculated by a series of losses, but rather I have to and will continue to believe in the immeasurable arithmetic of presence and positivity.

I am reading a lot of Rupi Kaur these days, and this poem ‘funeral’ spoke to me this week, a week of anticipatory grieving for so many.

when i go from this place
dress the porch with garlands
as you would for a wedding my dear
pull the people from their homes
and dance in the streets
when death arrives
like a bride at the aisle
send me off in my brightest clothing
serve ice cream with rose petals to our guests
there’s no reason to cry my dear
i have waited my whole life
for such a beauty to take
my breath away
when i go let it be a celebration
for i have been here
i have lived
i have won at this game called life

[POEM] Funeral by Rupi Kaur : r/Poetry (reddit.com)

Donald Macaskill

Photo by Rebecca Matthews on Unsplash

Enhancing the lives of older people in our care homes

The following is based on part of an address given last Tuesday at an online conference organised by Faith in Older People and Anna Chaplaincy.

To begin with I have to acknowledge that any talk of care homes has to address the problem of image and stigma. Even before the pandemic but certainly since the very understanding of care homes is one that is too often associated with the negative.

But I want to start from the perspective of challenging the stereotypes that care homes are places where people (to use the language that is often used), are places that people are  ‘put in’, or ‘end up in’ … or even worse the idea that they are ‘prisons for older age,’ ‘locations of last resort’.

Yes, it is true that for the vast majority of people moving into congregated or shared living in older age is a decision which is not ideal, and it might be one taken as a result of a decline or deterioration; we acknowledge that most of us would want to remain independent or in our own home for as long as possible.

Yet whilst many more people are living longer, they are also living with multiple conditions or co-morbidities. Another truth is that people are entering residential care much later in their illness or ageing journey. We are therefore talking about a more frail and fragile population, the majority of whom are living with some degree of cognitive decline such as dementia and the majority of whom are on a palliative and end of life care pathway in one way or another.

For many residents their care home is likely to be the place where they end their days. Most care home residents today will be in the home for between 14 and 18 months rather than the 3-5 years which were commonplace a decade ago. In many senses therefore care homes have become ‘hospices in the heart of our communities.’

That awareness has changed the dynamic of many care homes yet paradoxically that has not made care homes places of quietude and sadness but quite the opposite – for many they have become even more places of enjoyment and life affirmation, of living life to the fullest possible extent.

In my experience many care homes are places where individuals flourish, where they thrive, where they come alive, where they discover an energy which they felt they had lost in the years of past memory; where some find a new direction and sense of purpose that they might have yearned for in the past.

It is no exaggeration – at least for me – to state that care homes can be places that change lives and bring a new dimension to the remaining days of life.

In other words, care homes are not places where the task is to exist but rather, and with compassionate support and skilled professionalism, they can become places where people grow until the end of their lives, changing and moulding their days to the new rhythm of their experience.

They are places where individuals are enabled to ‘tell their story’.

Care homes can in the words of this talk be places to enhance life rather than to simply survive – and the role of spiritual care in that enhancement is critical and central.

Enhance is a lovely and intriguing word. It first came into English usage in the 13th century and literally meant ‘to raise something higher.’

When it was first used enhance meant to mak something physically higher, but quickly it became a word used to describe making someone feel recognised, more valued, or attractive.

I love the image that the word suggests. How are we in our relationships and actions, in the dynamics of our happening times and in our silence, in the exchanges of our conversations and encounters – enhancing or raising higher those who we are privileged to spend time with?

Care homes should be about enhancing older age, about raising up, making attractive, bestowing value on age and individual and all that comes with it. They should be about scattering to the four winds the stigma and stereotype of being old, of becoming frail, of losing memory, of developing dementia, and even of dying. Because all of these experiences can each and every one be enhanced – be raised up, to the point at which someone feels heard and valued, affirmed and wanted, celebrated and seen.

Care homes are about creating spaces and places where people can discover who they are even in the last hours and moments of living and loving; they are about raising up older age as something worthy of being affirmed, as valuable in its own right, regardless of activity or ability, capacity or consent.

That is no more the case than when I reflect about dementia. A diagnosis of dementia deserves not to be a full stop in the story of your life, but rather with support and resourced focus it can become the start of a new chapter whose ending is still to be written, whose richness of experience has still to be encountered.

Too often we have both in care home and community limited people by diagnosis and labelled them by siloed response and action. Person led care and support is recognising the particularity and uniqueness of each individual – it is about changing the dynamic of the cared for and carer so the power, autonomy, control and choice rests with the person being supported (perhaps especially if the individual lacks capacity to ‘know’) – it is about not treating the condition but caring for the person.

The role of spirituality and spiritual care in the whole process of enhancing older age in care homes is simply inescapable and undeniable. In a real sense enhancing – raising up older age in care homes – is about recognising that the very dynamic of care and support is at its essence an act of spiritual care. And for me it focuses on several characteristics:

Firstly, that spiritual care which enhances older age should seek to discover and use a language that can be the means of real communication for the person being supported.

Many years ago, I was privileged to spend some time with Phoebe Caldwell who for many is the mother of modern speech and language therapy, not least because of her development of intensive interaction approaches. I have seen with my own eyes how Phoebe worked with individuals who had been ‘locked in’, who had never or had stopped using words as their means of communication. Phoebe used to say that every human being has a unique language and communicates in a unique way. I am on one side of the river- you are on the other – the art of communication is the building of the bridge of understanding from one shore to the other. It is arrogance and hubris of the highest order to assume (as we so often do) that in order to communicate you must come over to my world, use my language, my words. It is much better for us to garner the humility of encountering one another in the middle of that bridge where I learn what your sounds, or eyes, or motion, or jerks say to me and vice versa. Real communication happens when there is a mutuality of encounter. For me that has always been an essential part of spiritual care – I am about learning your language, being humble enough not to assume I have all the insights or answers, all the knowledge and sense.

Dr Maggie Ellis from St Andrews University has done so much to use Phoebe’s approaches in communicating with individuals who have lost the power of speech in the latter stages of dementia. I would commend her work to you not least because now and in the years to come there will be so many more who because of their dementia will lose the power of speech and communication – we can either dismiss them as used to be the case in the way we labelled people with disabilities and autism as ‘non communicative’ or we can enter a new world of self and mutual discovery and learn a new language of spirit, compassion and care. Learning a new language and new ways to communicate is key to effective spiritual care.

My second characteristic of care that enhances older age is a spiritual care that seeks to address the whole of a person rather than the elements that can be simply determined, recorded, and recognised.

In the words of the Scottish Government’s Spiritual Care Framework

‘We all have a part of us that seeks to discover meaning, purpose and hope in those aspects of our experience that matter most to us. This is often referred to as “spirituality”; informing our personal values and beliefs, and affirming that tears, laughter, pain, and joy are all part of the human experience.

 I believe that part of enhancing older age – of raising it up – is to acknowledge that questions of meaning, purpose and hope are as real and valid in older age – and whilst living with conditions such as dementia – as at any other age. These are spiritual questions which we need to give space to – and ignoring them, not encouraging them, or worst still avoiding them is a limiting of the person.

That might take us into uncomfortable territory because I fear that our risk averse attitudes to age and frailty have led us sometimes to treat older people as children, to avoid the totality of being human, to try not to be unsafe or take risks, or fail and not succeed; to somehow think all older people are like one another; to presume that older age has no capacity for the novel or new, has no appreciation of the desire to do learn or discover possibility. Caring for the totality of a person requires spiritual care but is in itself an act of spiritual care. I just wonder if we sometimes limit the shocking potential of spiritual care by being predictable and safe?

Lastly, for me a critical component of enhancing, of raising up older age in care homes is the spiritual art of being honest and real and raw in accepting the uncertainties of the unknown and in giving sanctuary to the deepest fears of individuals.

Care homes are much better at walking with people on the journey to dying than perhaps they used to be. Living in and through dying is a critical component of ageing.

Care homes are in an often-unique position in enabling the giftedness of encounter and relationship formation to build a sense of belonging that can heal the deepest wounds even beyond the tears of grief.

There is perhaps no greater act of care for the person than to allow them to die well, with choice and autonomy and control as much as is possible.

Enhancing the last moments of life, raising up the latter days of an individual, creating space for there to be acts to raise the value and worth of a life lived to the full are all surely the core of spiritual care.

So spiritual care is essential to enhancing – to raising up the lives of all who are older, but not least in our care homes. At its best it is an art that allows the person to become who they have the potential to be, to flourish and to thrive into wholeness.

The Canadian poet Rupi Kaur writes:

“it was when I stopped searching for home within others and lifted the foundations of home within myself I found there were no roots more intimate than those between a mind and body that have decided to be whole.”

Donald Macaskill

Photo by Alexander Grey on Unsplash

Restoring the essence: the role of social work in changing times.

Tuesday coming, the 19th of March is World Social Work Day.

I have spent a lot of my life surrounded by social workers both in terms of being colleagues of them, working alongside them, and even sharing office space with them. But I have also been very aware of the role of social work through relatives and family connections who were and are social workers. It is a profession, therefore, with which I am very familiar and for which I have over the years developed a deep respect, no less so than when I trained hundreds of social workers in Self-directed Support legislation, around issues such as grief and loss, and adult protection.

I am saying all this because I want to evidence a regard for a role and a profession which I feel to be increasingly marginalised and ignored and one which I fear may be losing sight of its essence and energy. I was sharing some of these reflections the other day with a social worker friend who had just retired after decades of service and whose reflections and insights challenged me a great deal.

The international description of World Social Work Day states that it is :

” a celebration that aims to highlight the achievements of social work, to raise the visibility of social services for the future of societies, and to defend social justice and human rights.”

It goes further and points out for this year’s theme:

“World Social Work Day …is rooted in the Global Agenda and emphasises the need for social workers to adopt innovative, community-led approaches that are grounded in indigenous wisdom and harmonious coexistence with nature.”

Social work happens the world over and whilst there may be cultural and geographic distinctions, the essence or core of the profession is largely similar regardless of location. For me a social worker has always been the person who works alongside an individual, community, or group to help them find solutions to their problems and challenges. They are about enabling people to find the resource and energy, the route and strength to empower them to thrive, and achieve their full potential. Regardless of the age of the supported person, social work is grounded in an advocacy for the person at risk of rejection and discrimination. It is a profession steeped in ethical and moral principles with a concern for those marginalised, ignored and at risk. It is a role which literally defends, intervenes to ensure safety, and directs toward independence, self-control and personal autonomy. Knowledge of law, awareness of policy, ability to manage systems are all social work skills directed to enabling the supported person to take control, be autonomous and live as independently as they can. This is all about the maximising of human potential.

The Global Definition of Social Work from the International Federation of Social Workers expresses it well:

“Social work is a practice-based profession and an academic discipline that promotes social change and development, social cohesion, and the empowerment and liberation of people. Principles of social justice, human rights, collective responsibility and respect for diversities are central to social work.”

My social work friend and I reflected on the passionate originality and strength of the Social Work Scotland Act when it appeared in 1968 – which whilst I was a babe in arms – in the years after I began to appreciate was a dramatic game-changer in the world of social work in this country. It posited a very different approach to social work which attempted to change the traditional power dynamics of the era. It grounded in law the commitment to provide a community based social work service which ijn the words of a recent report was:

‘focused on providing early help, working in partnership with the communities served, and prepared and empowered to act to protect the vulnerable and those in crisis.’

My friend and I reflected on the extent to which the social work profession in Scotland was reflective of the original intent. Now straight off the bat I am not one of those sideline commentators who consider that social work has sold the pass and has lost its integrity, but it is difficult to ignore the reality that policy, political and legislative changes have altered the nature of social work over the years. Chief amongst them was the Community Care Act and the introduction of the concept of care management which to my friend, “turned us into bean counters, door blockers and system protectors.”

This change has been described in the following terms:

‘This shifted the onus from social workers as therapeutic resources towards practitioners as navigators of an increasingly complex landscape in which their professional values, methods and identity were eroded. Inevitably, social workers looked for areas within an ever more bureaucratic workplace to retain identity and purpose by trying to steer courses between policy intention, management systems and professional judgement.’ (see 3. Historical context – National Care Service – social work: contextual paper – gov.scot (www.gov.scot) )

So it was perhaps not surprising when the Self-directed Support Act (SDS) was introduced in 2013 with its emphasis on enabling the supported person to identify what would enable them to live to the fullest rather than what they needed, its principles of independent living, its emphasis on control, choice, autonomy and dignity – that virtually all the social workers I met and trained in the Act spoke about it in terms of a return to core values and about being what they had entered the profession to do in the first place, i.e. to be an advocate for those who needed a voice and to enable people to fulfil their individual potential and live their lives as they wanted and needed to.

Derek Feeley’s report and the work of Social Work Scotland in its numerous reports have well and truly described the ‘implementation gap’ between legislative aspiration around SDS and the on the ground reality, but chief amongst them must surely be the frustration and disappointment of the social work profession that the management of cases, the supervision of budgets, the emphasis on resource constraint and needs assessment has remained dominant and prevented a return to the essence of social work.

And in these last few weeks when the hidden crisis and breakdown of the social care system in Scotland has become ever more apparent to me, I cannot help but think how far that essence of advocacy and human rights protection that social work once enshrined seems to have become even more remote.

When I sit and hear as I have this last week of social workers in one authority visiting service users who have had packages of care and support lasting 45 minutes to inform them that after a ‘review’ that their care would be delivered in 15 minute visits (to include getting up, being bathed, and having a meal prepared) then I cannot but feel that the essence of social work is slipping away.

When I hear a social worker in another authority stating that a body wash should replace a shower (to save time); and that a local day service needs to shut because of resource constraints, I sense a slipping away of social work.

When I listen to the family of a man with a significant neurological condition, who had been used to four visits a day to support them, now being reduced to two, and the social worker saying that the family will just have to help out more – I see the essence of social work slipping away.

Now lest you suggest these are exceptions to the rule then sadly I would contend they are not rather they are the tip of the iceberg.

Undeniably I know that there are hundreds of women and men who are fantastic passionate social workers, and I know when I speak to them, how massively frustrated they are by the fiscal and managerial shackles they have to operate within. Every day they try their best to hold back a soulless system which is increasingly inhumane and disrespectful of the dignity and human rights of some of our most vulnerable citizens. Every day they voice their despair to managers and leaders for it to be ignored and set aside.

My old retired social worker friend remarked to me that with an increasingly overt emphasis on clinical care and assessment focussed on making sure people are safe and well but not much more, that the uniqueness of social work (and I would add social care) is being increasingly crowded out and pushed to the edge. The social, community dynamic of social work, which used to see connection and neighbourhood, community and relationships as intrinsic to wellbeing is being sacrificed by the bean counters and political expedients in our towns and villages. Life is more than maintenance.

I hope against hope that on this year’s World Social Work Day the strong voice of social work advocacy, the shout of defending the human rights of all, and the proclamation of the worth and dignity of the least is heard again in loud calls to change and challenge actions which are happening up and down Scotland today.

Someone a bit like Anna Wigeon’s social worker:

Mosaic
by Anna Wigeon

The study, work placements and exams are all done,
And now it is the hour for the clients to come.

Practice process explained and values declared,
Those attending may feel it’s now easier to share.

Hurting hearts, tell unique tales and words,  about need,
Words, they hope,  will be heard. ‘Loss’ is oft a core seed.                    

Those who want  to feel ”whole’ and who yearn to ‘belong’.
The rich gent and poor rogue, might recite common song’.

What change might occur, if a skilled helping hand,
Could give timely support to assist them to stand.

Many stories depicting a myriad of need.
Common circumstance  bringing so many to heed.

The homeless, sleeping on concrete sheets while their wits,
Go to waste and wither down the cracks in the streets.

Then there are those who just want to ‘Be‘.  Be free of,
Societal labelling and that online melee.

No-one’s is excluded from these hardest of roads,
Caused by abuse, violence; into slavery sold?

Thank-you for caring; choosing a social work role,
For giving  solace to those needing consoled.

Your compassion; open mind towards those in ‘chains’,
For your seeing anew and believing in change.

As you give of yourself and your social work skills,
Remember Self-Care and your support team’s good will.

And barring emergency……do try to leave at a reasonable hour!’

From Poems by and for Social Workers – Scottish Poetry Library

Donald Macaskill

Photo by Anne Nygård on Unsplash

Being a shepherd: a reflection on the characteristics of leading.

A couple of days ago I had the very real pleasure of being invited to give a Fireside Chat to the participants in one of the Queen’s Nursing Institute Scotland Leadership Development programmes. The Queens Nursing Institute is an amazing organisation and (in their own words):

‘supports, develops, and inspires Scotland’s community nurses and midwives to become agents for health improvement and catalysts for social change. Together, we are building a healthier, fairer, kinder Scotland.’

My ‘chat’ and conversation was centred around what I considered to be the key characteristics and marks of leadership. Having written more than my fair share on this topic over the years, not least in this blog, I tried to distil some of the main things I have learnt and experienced about leadership wherever that may be held or focussed. Here are some of my reflections:

For me the critical mark of all leadership is the need to be authentic, to mirror the reality of your self, ‘warts and all’. To be the real and raw ‘handmade’ person you are. Too often leaders and managers seek to mould themselves into the likeness of another, and that includes a mentor, or to shape themselves to what they expect the organisation or system demands and wants from them. That is not authentic – it is wearing a mask of pretence and usually (especially when the going gets tough) the masks slips and falls. Authentic leadership requires us to develop an honesty which allows us to be open, transparent and truthful with both ourselves and with others. In my experience such authenticity is what brings people in a team or organisation alongside a leader and strengthens the ability of all to be who they are. We need more people who walk their talk.

A mark of that authenticity for me is that it requires vulnerability. Vulnerability is often perceived as a negative characteristic or quality, but I very much believe that being vulnerable and being open to vulnerability are marks of essential humanity, not least in relationship to others. Vulnerability in itself is not negative; it is only when that vulnerability is mis-used or abused by another that it can become harmful and damaging. Being vulnerable is an openness to the unknownness and sometimes pain of encounter and the risk of losing your protection of self in order to achieve a greater self-discovery. In vulnerability there is a strength beyond the cracks and the brokenness.

A leader who can be strong enough to be emotionally mature and grounded, who is able to show emotion and empathy, to demonstrate the limitations of their own knowledge and skill is one that others can see something of themselves within.

Another element I reflected on was how important it is that leadership has a sense of purpose and direction about it. This is all the more important when particular context or circumstance is taken into account. In emergency situations for instance we do not look for a laissez fair attitude, a consultative engagement as primary, but rather when the chips are down, we want someone to be inclusively directive whilst appreciative of the diversity of those they lead and the requirement to shape action or response to the capacities of an individual. Occasions and contexts matter and whilst a leader should not be dominated by them a failure to be sensitive to the realities of the world around and an inability to be practically pragmatic helps no-one.

Over the years I recognise that the best leaders I have been privileged to work and be alongside, are individuals who whilst they have a clear purpose, direction, and vision, have invested in the people around them rather than just the achievement of particular goals. It used to be that being described as a ‘people person’ was considered something of lesser worth and value than someone who was influenced and dominated by process and models, outcomes, and outputs. Thankfully leadership and management approaches now recognise that the greatest asset in any organisation or system are the people and that nurturing and developing them is an essential task of team and group leadership.

There are other qualities I could add, such as the importance of determination and the ability to keep going despite obstacles or circumstance; the development of a resilience which isn’t just a springing back to doing things the way you have always done them but an openness to the new and innovative. I think of the ability to get to know the landscape and environment around you and to appreciate that the world we live in changes continually and often dramatically; or the recognition that we all change and need to adapt and be open to our own physical, mental, and emotional journeys.

I shared with the nurses I spoke to that over the years I have found strength in some of the metaphors and models for leadership, including the maieutic which considers a leader from the perspective of a midwife. But more recently, and in no small part, from reflecting on the life of my late uncle I have started to consider the metaphor of the shepherd as resonating with me in terms of what it conveys about leadership.

I have mentioned my late uncle Donald before. He was by modern descriptors someone who had a learning disability and who struggled with verbal communication, though those who knew him well could converse with him easily. A man of quiet behaviour and few words but of determined focus and comfortable routine, like many of his island age, he was a crofter-shepherd. In his case this was an art he carried out in the barren though colourful moorlands of north-west Skye.

Over the days and weeks, I spent with him I began to understand what the life of a shepherd was and much of it strikes me as descriptive of the essence of modern leadership in any context. It wasn’t a syrupy or romantic image or reality. it was hard and real. It included the need for preparation and planning, making sure you were appropriately dressed and prepared for the weather to change at any minute; a humility that recognised that you can never do things on your own but that shepherding is always a collective act even if alone; the appreciation of the need to know your environment and the limitation of your own knowledge; an openness to be moulded and changed by circumstance and terrain; a willingness to take your lead from those who ostensibly you are there to lead; to be able to read the happenings of the moment and to listen with a silence where sound can be heard in all its subtle invitations. It was a life which sought to become attuned to the rhythms of nature and which was rooted in the humble awareness of human insignificance in the face of the elements and the rawness of death and birth, grief and renewal.

But being a shepherd then was always about creativity and ingenuity, especially in the absence of easily accessible modern technology; it was a practised art where skill was developed over years of practice and the insights of failure and error as much as the moments of success. You had to be adaptable and innovative and able to use what you had around you.

Whatever your model of leadership, whatever metaphor speaks to you, there is a sense of dynamic movement about leading – ours is the task both as leaders (in whatever way) or as those who are led, to move towards the creation of communities and organisations, teams, and societies, where the voice of all are heard and the value of everyone is upheld, and where together we can all flourish and thrive, which is the daily task of social care.

Donald Macaskill

Hope rooted in action: a social care spring.

As I write this Scotland is enduring one of its unique weather days – torrential rain falling from a virtually cloudless blue sky, and no doubt a northerly gale will soon be blowing accompanied by hail or sleet!

It’s a time of year when my love of gardening gets stretched to the point of all patience being lost as I wait for propitious conditions to do all those seasonal tasks which dare not be done lest a spring frost arrives to destroy all effort and energy.

I’ve always been in admiration of my forebears who were farmers and crofters and who managed to live their lives in thrall to the vicissitudes of nature yet who always seemed to maintain a positivity about life. For whom the rhythm of the seasons had a predictability of renewal and a harvesting of hope but for all of whom effort, hard work and action were the ingredients of tomorrow.

I think anyone working in social care at the present time needs such a positivity despite circumstance. In the last few weeks I’ve heard of immoral fiscal savings resulting in someone in their 90s having a long term package of homecare removed with less than 72 hours’ notice; I’ve heard of someone entering end of life care 9 months after they requested a care home place yet no assessment was looking at all likely as happening any time soon; I’ve heard of a coach and horses being driven through the legal rights of supported individuals to choice, personal autonomy and independence and all in the name of public sector protectionism. Whether it is from an Audit Scotland report or the messages and calls I get weekly from those on the frontline I personally fear that Scotland’s social care sector has never faced such a perilous state of affairs.

And all of this angst and heartache in our communities is being played out against a backdrop of budgets being passed at national and local level bringing yet more cuts and ‘savings’ (dressed up in the language of efficiency and best value), and the refrain of a political pretence of normality playing in the background accompanied by a Neronic reframing of reform of systems and processes as the solution to all present troubles.

Few would now deny that the social care system is broken beyond calculation and that it is getting worse every day in every part of Scotland, and by system I don’t mean models or frameworks I mean a legion of supports and care which keeps people alive and offers the prospect of a life worth living. I have little doubt that in the next few weeks and months lives will be cut short or even lost because of the breakdown of social care support in our communities. And for those who might accuse me of melodrama I would invite them to come and walk in my shoes and hold the hard conversations I’m holding.

We’ve entered March – indeed yesterday was the start of meteorological spring, but the gloom and negativity seems all encompassing. And I’ll be honest it’s hard personally to shake myself out of my own sense of depression and fear at the state of things. It’s hard to listen to someone on the phone telling you that they are having to lay off staff not because there is a lack of care work to do out there but because the local authority has decided that only those at high risk can receive care anymore because they have run out of money. It’s really hard not to feel a sense of hopelessness and worry that things will only get worse and all the time echoing in the background are the sounds of political soundbites saying ‘ it’ll be alright tomorrow when we reform things’ or simply an attitude which suggests ‘there is nothing to see here, just move along’

In thinking of what to write this week I have walked in the rain, the cold and sun and become aware of the seasons in an even more acute sense. I have recalled the lives of grandparents and others who got up every morning in darkness, struggled against elements throughout the day, and with weary bones rested through the night to start it all over again – and all their efforts were to birth growth in the barrenness of emptiness, to bring forth fields of corn and a pen full of lambs and calves. Despite all the hardness and trouble theirs was a regularity of practical hope in the midst of cold hard reality.

My mind has also turned to the fact that one of my favourite ‘days’ is happening later this week, on the 7th we will be celebrating World Book Day. Regular readers will know how I find in words, in prose and poetry, a source of solace and insight, and how getting lost in the world of words and stories can help me (and others I know) find direction and hope.

Words escape from the pages and can create insight and illumination which can proffer change and renewal, give you the inkling of a new direction to follow, or simply the strength to remain true.

In one of those many bits of reading in the last few weeks I re-read some of the Words of the Day which Susie Dent produces in book and social media form. One I think captures the necessary spirit of the moment (for me at least) and that is the 16th century word ‘respair’, which means fresh hope, and a recovery from despair.

The delivery of social care in Scotland, in care home and homecare, amongst staff and managers, within providers and commissioners, needs its own time of respair , we desperately need to recover from the despair of cuts and reductions, from withdrawal and entrenchment. But that will only happen not at the hands of building utopian systems and frameworks, models or systems, but on the ground in the hands of the women and men who every day make a difference because of their compassionate care and support. We need to work through the blasts of this wintertime to find the energies to plant hope into our actions so that we can harvest a new way of being and doing that renews people. There is so much that is gloriously wonderful in what is happening every day across the country, I really hope in all the talk of change and restriction, of cutbacks and removal, we do not lose sight of the essence of social care.

But our optimism and hope must be grounded in the reality of the hard work that is needed to enable flourishing and fruitfulness to happen. We do not build our tomorrows on the dreams of the night but on the visions of the daytime; visions of a tomorrow better than our moment.

I love so much of what Julia Donaldson writes, and her poem ‘I Opened a Book’ reminds me that escape as I will on World Book Day and on many other nights, we all need to come back to ourselves; and for social care that means not soundbites and systems, but re-discovering the priorities of care in season and out. We need to find respair.

‘I Opened a Book’

I opened a book and in I strode
Now nobody can find me.
I’ve left my chair, my house, my road,
My town and my world behind me.

I’m wearing the cloak, I’ve slipped on the ring,
I’ve swallowed the magic potion.
I’ve fought with a dragon, dined with a king
And dived in a bottomless ocean.

I opened a book and made some friends.
I shared their tears and laughter
And followed their road with its bumps and bends
To the happily ever after.

I finished my book and out I came.
The cloak can no longer hide me.
My chair and my house are just the same,
But I have a book inside me.

Taken from I Opened A Book by Julia Donaldson – Scottish Poetry Library

Donald Macaskill

Hospitality instead of hostility:  a social care approach to immigration.

My late mother had many favourite quotes most of which I have forgotten – so it is good to have a sister to remind me and to continue her voice! But one I can very well remember not least because she used it so often was ‘Treat others the way you want them to treat you.’ It was her equivalent of the biblical imperative often known as the Golden Rule where Christ says: “Do unto others as you would have them do unto you.”

I’m not saying by any stretch of the imagination that I have lived up to the standards of the Golden Rule, but it was what came to my mind when I read the social media posts of the UK Government’s Home Secretary James Cleverley this past week. In a post on X, formerly Twitter, he almost seemed to delight and relish in stating that he had laid an order in the House of Commons on Monday, which will ‘ban overseas care workers from bringing dependents.’ and that ‘this is just one part of our plan to deliver the biggest ever cut in migration.’

What he was referring to was a decision first announced in December 2023 and given a date this past week that from the 11th March ‘social care workers will not be allowed to bring dependants (that is, partners and children) on their visa.’ It is part of a set of new measures including the fact that the minimum income normally required to sponsor someone for a spouse/partner visa will rise in stages from £18,600 per year to £29,000 and ultimately around £38,700.’ See more details at https://commonslibrary.parliament.uk/research-briefings/cbp-9920/

The UK Government has said that approximately 120,000 dependants accompanied 100,000 care workers and senior care workers in the year ending September 2023. We have of course, no way of verifying these figures and even if they are true, I would want to ask what is the issue?

I have written and spoken a lot about the need for an immigration approach which is sensitive to the uniqueness of the Scottish demographic and the reality that we have such a high level of demand in our health and social care systems. I do not necessarily want to underline those points here because in a sense you either accept or reject the argument that social care organisations are unable to recruit and retain staff at sustainable levels- despite all the measures they have taken including terms and conditions which are better than anywhere in the UK – although still not good enough. But in summary my main arguments about why international recruitment remains vital are as follows:

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

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

What I want briefly to reflect on today is the hostile nature of the UK Government’s approach to immigration which is doing untold damage to the image of our communities and the sustainability of social care organisations, and in turn is directly affecting the lives and welfare of our fellow citizens. I do not think it is hyperbole to state that the logical conclusion to such a hostile environment is the unnecessary harm and potential deaths of citizens who require social care support. If there are not enough care workers, then people are at real risk.

The statements and invective from the UK Government are creating a toxic environment in which international recruiters of skilled nurses and care staff are already telling me that people across the world are being put off from even considering coming to Scotland because it is perceived that they – and certainly their families – are not welcome and are not wanted. We seem to be sending a message which on the one hand is saying ‘Come and work in our services and supports, in our hospitals and care homes, in our communities and help us be healthy and well… but do not even consider bringing your own families and being well and whole and healthy in your own mind and body. ‘We need you; we want you, but we will use you.’

The commoditisation of people by a hostile immigration policy is a shaming of our shared humanity and politicians appealing for votes are plumbing the lowest common denominator by their actions. What does it say to our contemporary society that those who care for others should not have due care and attention given to their own needs? – and for many that means being with family, creating a space to belong, becoming rooted as our neighbours and becoming our fellow Scots.

We can and have to do better. So back to my old mother, ‘Treat others the way you want them to treat you.’

I have reflected about my upbringing a fair bit this week not least as we are in the midst of Seachdain na Gàidhlig or World Gaelic Week. Taking place from 19th – 25th February 2024, Seachdain na Gàidhlig is the first official nationwide language week of its kind in Scotland, and it aims to promote Gaelic for all. ‘The theme for the 2024 edition of the cultural celebration is Do Chànan. Do Chothrom, which translates to Your Language, Your Opportunity. Participants are encouraged to showcase how the Gaelic language benefits and enriches lives, opening doors for connections, collaboration, and success.’

The week captures part of the essence of Gaelic culture which I have been aware of from my childhood – and that is an openness to others, an enrichening of self by contact with people, an appreciation of difference and with diversity. In essence Gaelic culture recognises the human truth which lies at the heart of all social care, namely that we become who we are by being open, by being hospitable to friend and stranger alike.

Hospitality needs to be at the heart of any civilised society’s approach to immigration. It is a lived ideal which is intrinsic to the Gaelic culture which has so enriched and enabled our country to be what it is and can be. The very concept of hospitality in Gaelic culture is a rich one deserving its own blog, but for our present purposes, in short it carries connotations of health and wellbeing. Work was paused as people were given space to be welcomed, fed, nourished, and nurtured. Our fellow Celts in Ireland even had hospitality to travellers and strangers written into their ancient laws, and most of us know the story that the shock at the heart of the Massacre at Glencoe is first and foremost that it was an assault on the traditional practice of hospitality more than anything else.

To be hospitable is part of the Scottish psyche, it is part of our DNA to welcome and give value to those who as yet do not belong to us.

An immigration policy rooted in the Scottish tradition and spirit of hospitality better fits the humanity of our nation; it better fits the nature of social care which those of us who work in the sector seek to foster, and those who receive care and support expect to experience.

In this Gaelic Week, we are called to give an open hand rather than a shut door to the dependents of those we are increasingly dependent upon.

When I read the statement of James Cleverly and the subsequent justification by the UK Government for this hostile act, I was reminded of the poetry of Uyen Loewald, an Australian migrant of Vietnamese background, who was subjected to racial oppression and discrimination when first migrating to Australia. Her poem ‘Be good little migrants’ is well known to Australians and is a visceral critique of those who expect migrants to sacrifice their human dignity in order to ‘fit in and gain favour’. It is the very opposite of hospitality and should serve as a warning of the sort of society some would have us become. It is not treating others the way I would want to be treated.

 

Be good little migrants

We’ve saved you from starvation

war, landlessness, oppression

Just display your gratitude

but don’t be heard, don’t be seen

Be good little migrants

Give us your faithful service

sweep factories, clean mansions,

prepare cheap exotic food

pay taxes, feed the mainstream

Be good little migrants

Use leisure with prudence

sew costumes, paint murals

write music, and dance to our tune

Our culture must not be dull

Be good little migrants

We’ve given you opportunity

for family reunion

equality, and status, though

your colour could be wrong.

Be good little migrants

Learn English to distinguish

ESL from RSL

avoid unions and teach children

respect for institutions

Be good little migrants

You may fight one another, but

attend Sunday school, learn manners

keep violence within your culture

save industry from criminals

Be good little migrants

Intelligence means obedience

just follow ASIO, CIA spy on your countrymen

hunt commies for Americans

Be good little migrants

Museums are built for your low arts

for your multiculturalism

in time you’ll reach excellence

Just waste a few generations.

Donald Macaskill

Photo by Krzysztof Hepner on Unsplash

Ai and social care: towards a human rights approach.

On the 1st 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

Photo by Michael Dziedzic on Unsplash

Intentional kindness: the task of social care.

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

Human identity and beauty: social care’s affirmation.

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