You probably did not notice but yesterday was European Neighbour’s Day. I have to admit I stumbled across it online in part because I am going to be doing a live input on Monday evening as part of the Glasgow Loves Europe network. The focus of that is on the importance of encouraging people to sign up for the EU Settled Status Scheme. More of that in a minute. But it did get me thinking of the very concept of neighbourhood and neighbours.

Clearly concepts of neighbourhood and what a neighbour is, and means are very individual but also culturally influenced. For a rural community like the one from which my family originated neighbourhood was an alien concept in its reduced metropolitan definitions. Everyone as far as the eye could see was considered a neighbour even if the physical distance to the next croft house might be half a mile away. There was an inter-twining of living and relating one to the other in Hebridean crofting townships which I have rarely seen or experienced elsewhere. It had its strengths of mutuality, solidarity and support but in truth it also had its weaknesses and at times a suffocating lack of independence and privacy. When I lived in Glasgow tenements, I came to love the neighbourly feel that is unique to that environment – from the responsibility of co-washing the close stairs to the extent to which folks looked out for one another but at ‘appropriate arm’s length. I cannot see Avril Paton’s lovely painting ‘Windows in the West’ without a stirring of fond memory.

Now, I know there is a danger of romanticising the concept of neighbour and becoming overly bucolic but those of us who have been blessed with good neighbours know the priceless value of the same, and those who have been the victims of the ‘neighbours from hell’ know the cost and pain of that experience. But the nature of our relationships with one another are hugely influenced by the degree we feel our community and culture roots itself around a sense of care and compassion for those who live most close to us.

I discovered yesterday that European Neighbours Day has been in existence since its foundation in Paris in 1990 and is held on the last Friday of May. It is an opportunity for residents’ groups and housing organisations to celebrate the value of being a neighbour, and to thank those who are.

There is a particular resonance to the idea of neighbour this year as I mentioned at the start, because we have just one month to go before some of our neighbours might be at risk of losing their status and rights as citizens of our country and members of our community.

I am not going to get into the merits or otherwise of the Brexit debate, but I do think it is vitally important that everyone is made aware that the end of June brings real potential change to many.

There are many thousands of women and men who have been intrinsic parts of our neighbourhoods, who have cared for and supported our fellow citizens, and have worked in health and social care. Many of the 6-8% of European citizens who make up our social care workforce in Scotland have applied for and received confirmation of their status. My concern is that because there have been so many care workers tired beyond exhaustion in working to care during the pandemic in care homes and community that some may have put applying for Settled Status onto the back burner.  There is a real sense of urgency that we ask and encourage folks and friends to check that they have made their application.

I am also concerned that there may be many older people, perhaps living with dementia or increasing frailty, some without necessary documentation, many without access to social media and information, and without technology to for instance take the photographs necessary to apply, who may miss out on the deadline.

Along with a number of organisations I signed a letter to the Home Secretary which asked for an extension to the cut-off date, but the UK Government has not heard this concern or request. Whilst this is immensely disappointing it is nevertheless important that in the next few weeks, we encourage everyone we can to apply if they are required to do so. Please follow the link and share it with any friends or acquaintances http://www.mygov.scot/help-eu-citizens

In the weeks ahead I am concerned that neighbours old and young, fellow members of the community of care and compassion which contributes to the vitality of Scottish life, may feel their status and value unaffirmed and diminished. I think I speak for many when I say we are better when we are linked one with the other, in hands stretched out to welcome rather than as barriers of rejection.

 One of my favourite poets and a Gael of real distinction is Iain Crichton Smith who wrote a beautiful short poem called ‘Neighbour.’ It is a poem that speaks of shared humanity, compassion and connectedness. For it is the same rain and pain that falls on us all, and I am made better by being with others from Europe and elsewhere in the one community.

Neighbour

Build me a bridge over the stream
to my neighbour’s house
where he is standing in dungarees
in the fresh morning.

O ring of snowdrops
spread wherever you want
and you also blackbird
sing across the fences.

My neighbour, if the rain falls on you,
let it fall on me also
from the same black cloud
that does not recognise gates.

In the last parliament and in the returning SNP Government’s manifesto there was a commitment to create a new Human Rights Act for Scotland. Indeed, the Scottish Greens, Labour, Liberal Democrats and the SNP all made manifesto commitments to enshrine rights treaties in Scots Law. Whilst there will doubtless continue to be debate the mood music is clear. Unlike the rest of the UK’s rush away from human right obligations within statute and practice, Scotland seems to be setting its path quite clearly.

I want to reflect in this blog – based on a talk on older people’s arts and creativity at a Voluntary Health Scotland/ACHWS event this past week – on why this is important.

One of the main acts we are likely to see in any new legislation is the incorporation of the International Covenant on Economic, Social and Cultural Rights (ICESCR) into Scots law. This would do many things but amongst them would be the enshrining in national law of an extensive range of ‘cultural laws’ and secondly embedding the ‘right to health’ and all that entails.

ICESCR and indeed the UN Declaration of Human Rights recognise that ‘the full promotion of and respect for cultural rights is essential for the maintenance of human dignity’ and that ‘everyone has the right freely to participate in the cultural life of the community’.

This is of huge significance I believe for older people.

The right to health as defined by the World Health Organisation is a recognition that we become and remain healthy not just as a result of the absence of disease but in part through the ability to enjoy, find fulfilment and to flourish in our identity and self. Psychological and physiological health and wellbeing are entwined.

This is where creativity, culture and health are going to root themselves. These offer us powerful levers to influence, shape and direct our health but also our cultural needs as a society embedding a holistic view of our health and wellbeing.

I think there are certain things in what with some justification I would term a human right of creativity that we need to address to maximise this potential.

The first is the need to address discrimination.

The pandemic and our collective political and societal response to it, has exposed the systemic and systematic ageism which lies at the root of our society. Naming and shaming it for what it is – the pervasive wallpaper which provides the backdrop of so much of our exchange and civic society – is self-evidentially important.

When it comes to the world of culture, we see this writ large, a mixture of blatant discrimination and lazy presumption. There is in all the chat and conversation about ‘building back better’ and restoring our cultural life – a pervading presumption that we are talking about particular forms of culture and the arts, and that those most impacted have been the ‘young’; all of which ignores the reality both fiscally and creatively that so much of the cultural arts and community are led by, directed by and paid for by those who might be defined as ‘older.’

More significantly there still pervades the presumption that creativity has a sell by, or use-by date attached. I find the ongoing debate of some psychologists and sociologists about when creativity peaks and when it declines a somewhat arid and turgid conversation – if you believe some of it and you are tempted to write your best lyrical poetry, or paint that breath-taking landscape or compose a hit after the age of 40 – forget it. Didn’t you know great poetry and art are a young person’s preserve?

The truth that I see is that creativity occurs and happens at all ages, sometimes with fading intensity, sometimes with a renewed vigour as time ticks on.

There is a lazy stereotype which needs challenging – for what I witness in creatives later in life is not just a re-treading or re-moulding of past action or product, but frequently a freshness, vitality and originality – a renaissance of creativity which utilises experience, insight, effectiveness and maturity.

To maximise the benefits of a human right of creativity we need to challenge the presumptions. Even working in a palliative and end of life context I have seen music formed, words created, art designed which has been both poignant, original and truth-telling.

The second thing we need to do is to maximise resource.

The fundamental right to exercise creativity, to be inspired, moved, motivated and impassioned, needs to be nurtured and resourced. If we are serious about recognising and validating all the research which links loneliness with mental health distress, which shows that someone connected through creativity benefits their health and well-being to a significant extent – then we must start recognising that financially investing in the creative sector and its role in ageing is of vital preventative importance. It cannot be an after-thought or added extra; it has to be a mainstream focus.

I know that as we recover from the pandemic our first and foremost priority must be to get people connected, families re-united and ‘normality’ returned but we must also plan for a better future. So, it is I long to see every care home have an artist in resident, every homecare organisation employing an itinerant creative, ever hospital ward having access to an in-house creative, because the evidence is clear – connect through creativity and you reduce isolation, loneliness, depression and so much more.  I have witnessed first-hand this to be the case with people with late-stage dementia who when they have lost the power to verbally communicate can still create and express their emotions and thoughts through those creations. You enable and enhance the ability of a person to see and feel themselves to be of worth, to be able to contribute and sense value.

Put bluntly spend money to save money – we have too many people who end up utilising scarce NHS resources when the adequate flourishing of creativity could have prevented so much decline and deterioration, despair and distress.

The creative arts can nourish real change and the right to creativity can foster the realisation of other human rights. In the past we have perhaps focussed too much in older person’s care and support services in seeing the creative arts as solely forms of entertainment and performance, but the use of art and creativity to enable voice, advocacy and articulation is immeasurable.

The creative arts can turn the ‘rage against the dying of the light’ into the sparks of new beginnings, new directions and new insights.

So how do we create the spaces and places where poetry can speak a truth more passionate, raw and real, than the clarion calls of policy put into practice or political proclamation? How do we enable people to discover until the moments of ending that they have a spark of creativity intrinsic to their humanity – perhaps dormant, perhaps supressed or hidden?

Art is about the flourishing of humanity and the fulfilment of personhood – it is therefore a fundamental human right – but all human rights cannot just sit on shelves gathering dust in legal tomes – they have to come alive in our communities.

I have been privileged to walk behind in the shadows and occasionally in the footprints of artists and creatives all my life. Those who have etched their impression into me at greatest depth have all of them been those late in the years of their creativity – and perhaps most especially my storyteller grandmother – a spinner of yarn and truth, insight and fable by a Hebridean fireside. She once said to me that she felt the need to tell stories more often as she got older rather than less. With that insight came the words: the older I get the more I know that silence is as important in a story as sound; the older I am the more prepared I am to listen to that silence.

I hope we can all listen to the silent creativity which comes with the maturity of age, and with the words that surround our attention be prepared to celebrate and advance the human right of creativity which belongs to all.

Donald Macaskill

This past week I had the honour to deliver the Malcolm Goldsmith Lecture on behalf of Faith in Older People. I took as my theme the relationship between human rights and spirituality suggesting that rather than the oppositional stances which are often taken and promoted by some commentators, that there is much more that unites than divides the worlds of human rights and spiritual belief, indeed that the divergence of the two is unhelpful.

As part of the talk, I reflected on the nature and understanding of spirituality and what that specifically meant for human rights. Here in this week’s blog I want to briefly touch on what is meant by spiritual care, which is I believe, a critical aspect of care, yet one that is often both diminished and ignored.

Defining what is meant by ‘spirituality’ is not an easy task. My starting point is a very helpful Care Cameo on Spiritual Care – published by Scottish Care in 2018 –  in which Maureen O’Neill shared the following definition:

“We mean the search for that which gives zest, energy, meaning and identity to the person’s life, in relation to other people and the wider world.”

It is a definition which emphasises the importance of relationship; having a
sense of purpose and meaning in order to make each day worthwhile. It suggests that spirituality involves the recognition of a feeling, sense or belief that there is something greater than oneself, something more to being human than sensory experience alone, and that the greater whole of which we are part is communitarian, cosmic or for some divine in nature.

This is distinct from though related to the faith and religious traditions with which we are familiar. It is this wider sense of spirituality which I believe is important to the care and support that many individuals require and want, and which those charged with delivering that support and care need to recognise as important. Indeed, the World Health Organisation encapsulates this holistic sense of care and health in its very definition of the essence of health by stating ‘that health is not just the absence of disease but is a state of physical, psychological, social and spiritual well-being.’ I wonder in all our concentration on the pandemic in the last year, upon clinical health and wellbeing, upon infection prevention and control, whether we have diminished the holistic understanding of health, have we driven out and away the sense of the spiritual, of risk, choice and autonomy?

A few years ago, in an excellent work colleagues in NHS Scotland sought to describe what spiritual care was, what it meant, and how its attention is intrinsic to the fulfilment of health and the flourishing of the person. They wrote in ‘Spiritual Care Matters’:

“A person’s spirituality is not separate from the body, the mind or material reality, for it is their inner life. It is the practice of loving kindness, empathy and tolerance in daily life. It is a feeling of solidarity with our fellow humans while helping to alleviate their suffering. It brings a sense of peace, harmony and conviviality with all. It is the essence and significance behind all moral values and virtues such as benevolence, compassion, honesty, sympathy, respect, forgiveness, integrity, loving kindness towards strangers and respect for nature.”

To care and to support another involves staff and carer being equipped to attend to the spiritual needs of those who are supported. It compels us to ensure adequate resourcing and training, development and nurturing of the workforce. There is simply not enough focus on this critical dimension of professional care. But there is, I believe, much more to the relationship between spirituality and care.

The Scottish Church leader and founder of the Iona Community, George MacLeod, used to describe the island of Iona as a “thin place” – where barely a sheet of tissue paper “as thin as gossamer” separated the material from the spiritual. It was an image borrowed from the broader Celtic idea that there are places where the spiritual and the divine is experienced more nearly than others. Elsewhere George MacLeod describes these locations as “the eternal seeping through the physical.”

As someone with roots in another island – Skye – his words resonate with meaning and truthfulness. There are spaces and places which are almost sacramental – a breath away from beneficence, where you feel able to touch the intangible, where you hear the depths of silence. Many of you might know of such places.

So it is too, I believe with human community. So it also has to be, I think, in the delivery of care support. At its best and most mature, the act of caring and support is a spiritual activity. A space where individual identity is enabled to grow, mature and achieve its full potential. The best care and support are rooted in the development of relationships – our actions are determined by the trust and respect, the depth and emotion we share with another. Care is like a dance of close intimacy and concern, where there is no mere transaction of activity and task but the dynamic of shared purpose and intent, where the paid professional moves to the rhythm of the person they are supporting in every sense.

It is in the relational fractures of living, perhaps especially in the light of the pain of a pandemic, that we find the critical need to see care and support as an activity of the spirit as much as of the physical. It is in this coming together space that communion happens, and it is in such a space that we recognise the thinness of the worlds we create to divide our living and our imagining.

Through skill, compassion, attentiveness and presence, those who care for others give space for people to discover their own ‘thin places’ both of external and inner geography. Those who care engage in the most profound level of connectedness, which for me at least is an act of spiritual journeying. That is surely spiritual care.

Donald Macaskill

Next week from the 10^th to the 16^th May the Demystifying Death festival takes place. Its purpose is to ‘shine a light on death, dying and bereavement in Scotland’ by bringing dying into the limelight.

Before the pandemic hit our shores last spring a group of individuals and organisations had been preparing for the launch of what is Scotland’s first Bereavement Charter for Adults and Children. This happened in April just at the time when the sad litany of Covid19 deaths were filling our consciousness.

The aim of the Charter is quite simply to increase awareness of the importance of bereavement support especially for those who may require that additional support after the loss of someone in their lives, and to make Scotland a nation more confident about preparing for, talking about and dealing with death, dying and bereavement. A big aim and the work to achieve it, I hope will be a key part of the shared commitment of the new Scottish Parliament, which is being formed as the election results come in as I write this.

At the heart of the Demystifying Death week is the presumption that for many people death, dying and bereavement have become detached and distant, surrounded by whisper and silence, pushed away from prominence and priority. There is I think a real truth in that.

The dictionary defines ‘demystifying’ as ‘to make (a difficult subject) clearer and easier to understand.’  There is probably no more difficult subject than death because it raises fundamental questions about our humanity, our self-identity and purpose and indeed the nature of life as a whole. For most of the last few decades, both personally and professionally, it has been a taboo subject, little talked about and frequently side-stepped. It has not always been like that.

I grew up in an environment where death and dying were very much part of the seasons of life. My extended family were linked to the land and the sea and facing up to the sad reality of unforeseen and unexpected loss was part and parcel of what for generations had been a precarious existence. Even living in the seclusion of a city I was aware of the sense in which death and dying were viewed as something normal, natural and entwined into the fabric of living and loving. Not least I saw the life-long impact of loss on those who were left behind. I learned early on that it is only when you have endured the loss of someone close that you really understand the all-consuming nature of grief which freezes you inside and out. But for so many in our society death really has become a taboo.

To some extent that changed a bit during the pandemic as the prominence of dying became a daily subject of debate and media report. But in all honesty despite the plethora of on-line supports and the social media chatter around death and dying, I wonder if this positivity about ‘mainstreaming death’ will outlive the rush back to the familiarity of ‘normality.’ Even the way in which the media is reporting the still not insignificant number of people dying from Covid19 is sadly illustrative of a continued dis-ease with death and dying.

I have written before of the impact of the pandemic upon those who have lost loved ones. The inability to mourn as we want, to be present at time of death, the loss of communal support and ritual are undeniably having an effect on thousands of our fellow citizens. We are facing the saddening damage of what one writer has called the ‘tsunami of grief’. I see little collective, political and cultural desire to systematically address this societal and health challenge. Whether politician or policy maker folks remain very uncomfortable around death.

A key part of the work of the Demystifying Death week is to help people to start to hold conversations with those important to them about what they might want in their care and support at the end of life or when their health, perhaps as a result of a long-term disease or condition, begins to deteriorate. It is equally important should we be unfortunate enough to be the victim of an accident or sudden, unexpected and traumatic death. Those of us privileged to have become parents will be very familiar with the concept of a ‘birth-plan’ – a detailed description of how the pregnancy and birth of a child will be supported in accordance with the wishes and desires of the mother and the resource and systems available. I think that the concept of ‘death planning’ should have equal priority and importance. How we die not only impacts on our very self, but its handling has a profound significance for those we love and surround our lives with.

I have said before that death is the most person-centred act we will ever engage in. Those of us who work in health and social care can do so much to ensure that the process is indeed ‘owned’ by the person, be that the choice of location, the nature of the end, and the support of those who remain. But there is a demand upon all of us and that is to start talking about death and our own death with those we love. This is not a morbid obsessiveness but part and parcel of our gift to others. It is ironic that we probably spend more time talking about the car we might buy than about what we want at the end of our lives. It is indeed time to start talking about dying.

All this talk of course becomes much easier if we become more confident about being open about our feelings and fears, our hopes and aspirations in relation to the end of life and dying. Too often we feel awkward or uncomfortable about the subject and we fear if we know someone close who is experiencing serious illness of making the situation worse by our conversation. But it is a self-evident truth that making plans when we are healthy means that we have much more time to focus on the important things when we become ill.

I do hope you might look at some of the amazing events which are taking place as part of the Demystifying Death Week and start having conversations with those who love you and matter to you.

An intrinsic part of living is our ending, planning and dreaming, working and organising, preparing and nurturing that end is a gift not only to our self but to those we leave behind. For me the poet Donald Smith has given me a sense of that time:

When this body comes to die,
Set me on the headland high,
Where sun and rain go marching by,
Raven lord of wave and sky.

Eilean Mor Sgiathach

When I free my final breath,
Lay me down on gentle earth,
Where the dove shades holy garth,
And rivers run to meet the firth.

Eilean Mor Sgiathach

When my spirit passes over,
Float me on air’s mountain floor,
Where the feathered ramparts soar,
And the eagles golden hover,

Eilean Mor Sgiathach

Donald Smith

https://www.scottishpoetrylibrary.org.uk/poem/winged-skye/

 

Donald Macaskill

I enjoy going to vote and I always have. I am looking forward to taking time on Thursday to go and physically exercise my choice by walking to my local Polling Station. It is an exercise that has been drilled into me from youth.

I have mentioned my great aunt Effie quite a few times in this blog and one of the things she was always passionate about was the importance of voting. My great aunt was a young teacher in the early 1900s firstly in Lewis and then Skye. She was inspired by the work of the Stornoway Women’s Suffrage Society which was one of many women’s organisations campaigning for equal treatment of women. So often the story of the Suffragettes is seen through the eyes of middle class and urban, even metropolitan, women but there was a rich and vibrant women’s movement in the islands of Scotland. The struggle for suffrage meant that for women like my great aunt the physical act of voting was a debt of duty and honour owed.

I will be especially motivated to vote this year because social care is such a prominent issue in this election. The experience of the last year has been hard beyond reckoning not least for residents, families and staff in our care home sector. We have a very real opportunity on Thursday in exercising our vote to ensure that any new Parliament, regardless of any specific government, prioritises social care. It is a pandemic election which owes a debt to those lives lost, diminished and harmed.

That is one of the reasons that I am fully behind the Oxfam Scotland campaign to have care recognised as a national outcome.

In December 2020, Oxfam Scotland, Scottish Care, One Parent Families Scotland, the Scottish Women’s Budget Group and the seven National Carer Organisations, including Carers Scotland, launched a joint call for a new National Outcome on valuing and investing in care.

Together, they are urging all political parties in Scotland to “make a generation-defining commitment to care and all those who provide it across the nation by putting in place a dedicated National Outcome… [to] help ensure that welcome statements of support for carers lead to meaningful and long-lasting change while ensuring that progress towards better valuing and investing in care is transparently monitored.”

This is critically important. Care has to come from the margins into the centre of our society; it needs to be not solely the object of occasional clapping but the conscious commitment of those who govern and deliver public services.

A few days after Thursday we will know the shape and form of the Government which will guide us for the next five years. Some of those canvassing and campaigning will start a new life as representatives of the people. It is a daunting task. Never before have we needed women and men who are able to be ‘ambassadors of conscience’.

One of my favourite poets Seamus Heaney was approached by the chairperson of a local Amnesty International group in Dublin in 1985 and she asked him to write a piece to mark Human Rights Day and the 25^th anniversary of Amnesty. He created what would become one of his most famous poems, “From the Republic of Conscience”.

The poem imagines a Traveller arriving at a destination called the republic of conscience. Met by silent welcoming staff, he is not required to prove his identity, but rather is affirmed as part of the community. It is a place for self-exploration, all he is required to do is examine his own baggage. The poem depicts the character of this republic and describes the quality of those who lead and the obligations upon the Traveller as he leaves to return home from the republic. Have a read of it – its haunting allure is irresistible.

But one stanza always stays with me:

‘At their inauguration, public leaders

must swear to uphold unwritten law and weep

to atone for their presumption to hold office –

and to affirm their faith that all life sprang

from salt in tears which the sky-god wept

after he dreamt his solitude was endless.’

Heaney’s poem ends with the narrator being told that he is now an ‘ambassador of conscience’ – someone who in all they do needed to be the voice of those who suffer, to challenge injustice, to act and do what is right. It is a duty which they are told will never end, they will never be relieved of this commitment. It is perhaps fitting that Amnesty International’s most prestigious award is called the ‘Ambassador of Conscience Award.’

In the last few days, I have read commentary to suggest that people are not that interested in the election and that they are more focussed on returning to their normal lives of non-pandemic times. But democracy is a precious gift. The ability to vote achieved by women like my great aunt needs to be cherished and renewed. This year I think we all need to renew our democracy with a commitment to have care at the centre of this election and the next parliament.  Care should be both the coracle of our coming and the cradle of our hope as a community. It is the spirit of conscience which should enthuse our dialogue and decision, our motivation and aspiration.

Care needs to be at the heart of our new parliament, both in its priorities and outcomes, its focus and soul. But it also needs to be at the centre of the lives of those who would seek to govern. They need to be a group of women and men more open to listen that to talk; to learn than to espouse. Elections are set up to create opposition and distinction, difference and alternative. Government should always be a space for collaboration and conversation, agreement and acceptance. A parliament enthused with a focus on care gives a place to conscience and in turn moulds a wider community which becomes a space of tolerance, integrity and authenticity.

I look forward in the hope that our next Parliament will be occupied by women and men who are ambassadors of conscience first and representatives of party second. But regardless I will in duty and optimism walk out and vote on Thursday and I hope you will too.

Donald Macaskill

For the whole of next week Scottish Care and other stakeholders will be engaged in a series of events focussing on attracting women and men to consider social care as a career and profession. As part of this there will be a virtual event on Wednesday 28^th  called ‘Creating Pathways to Social Care Recruitment.’ The event will have sessions delivered around recruitment opportunities, employability programmes and pathways to students coming from Higher Education Institutions.

I’ve had many conversations and meetings over the last few weeks which have confirmed for me something I have known for some time. Our frontline workforce both in the community in homecare and in our care homes are tired, exhausted and weary. They have worked above and beyond in their efforts in the last year to keep some of our most important citizens safe and as well as they can be.

Having got through the worst of the first and second wave pandemic many people have been taking the chance to have a break and take time off. For some the opportunity to reduce the manic pace, to relax with family and friends, has given them the chance to reflect and consider. Inevitably for a few this has meant that they have taken the decision that they want to seek other opportunities and to either leave their current role to go and do something else in health and care or indeed sadly to leave the sector. Whilst absent rates directly related to Covid19 have reduced sharply what we are now beginning to see are organisations with an increasing vacancies for posts, perhaps especially signs of emerging vacancies in the nursing profession. There are lots of reasons for this and a single analysis would paint a partial picture, but undoubtedly the sense of trauma and distress of the last year and its impact on mental health and resilience has taken its toll and is a significant contributor to an emerging issue of recruitment and retention challenge.

I had a telephone conversation this week with someone who has worked throughout the whole pandemic in a care home. The care home involved was hit very hard in the first wave with the loss of too many residents. She spoke to me of the upset and deep sadness felt by her and colleagues; of how those emotions were replaced by a determination to protect and to do all that they could to support and care; and of how there was a growing demand and pressure with changes to practice and care support. She also spoke of how determined she and her colleagues were to make sure that what she called “the old way of caring” was restored as quickly as possible; a state where staff had their professionalism and skill valued, where families were seen not as “people who had to make appointments to see their loved ones but were the care home’s left hand” were restored. She yearned for a return to pre-pandemic times when her care home was a place of laughter and life not solely a focus on infection prevention and control. She confessed to me that she had seriously thought of giving up her job. The stress in working elsewhere would be a lot less. But she decided she would stay or in her words she ‘could not go.’  She said:

“this job has made me who I am and if I was to leave it, I would lose part of myself. I love being here and I love everyone I support. It may sound corny, but I really mean it. I was born to care. I don’t want to do anything else.”

Now lest I get accused of suggesting that social care is a vocation and unless you have that sense you should not be working in the sector that was not what was meant here. What this person talked about with such passion and conviction was her sense that care, for her, was something more than simply any other job. It was, in her mind, a profession, demanding great skill, aptitude and qualification. It was also a role, and I could not agree more with her, that should demand all of us to better reward and remunerate those who do it. But in all her words she kept coming back to her personal conviction that care was a role which was unlike any other job.

I know those words might read uncomfortably for some but having been around social care workers for such a long time I think she is spot on. It is not that care workers are heroes- the language of heroism has little value – it is that care enables you to show your humanity to the fulness.

There are many roles and responsibilities which are crucial and critical to the fulfilment of human society, but surely there are few as important as the roles that enable you to support another human being to achieve the fulness of their own life; few roles more rewarding than to be present to soothe fear and distress, to be there when someone struggles to communicate and be understood and ultimately to be the solace in suffering and the presence of love in the moment of dying?

Care is special. Those gifted in its realisation are deserving of all our support and advocacy. But it is also immensely hard and draining, both physically and emotionally. So that is why care workers do not just need claps and recognition, appreciation and praise. After the year so many have endured the social care workforce needs to be upheld by a community and system which attends to their mental health and wellbeing. We need a holistic approach to care for the carers which appreciates the uniqueness of their role, and the painful marks of what they have been through. So it is, I believe, that all those standing for election in the next few weeks need to prioritise mental health, bereavement and grief support for our workforce in health and care.

I have always been and will always remain in awe of the astonishing compassionate giftedness of those who care. All that most of us can do is to support them and create a society and systems that value them. But I leave the last word to those of a carer who has written ‘A Carer’s Poem’ for the Care Workers Charity:

A Carer’s Poem

Oh to be a carer and look after those

Who for this, is not the life they chose.

It makes you feel proud and you can stand tall,

Another day you gave your all.

A helping hand, a willing ear

Gives them confidence with no fear.

If I can do this, you can too

They just need a helping hand to pull them through.

Shouting, crying, singing or laughing,

Sleeping, eating, dressing or bathing.

It’s you they need to make their day,

Come and give it a go, what do you say?

Time is precious to those in need,

Happiness comes from a few good deeds.

So, it is given freely along with a smile

Why don’t you come and give it a trial?

See https://www.thecareworkerscharity.org.uk/news/carer-story-and-poem/

My late uncle Donald died suddenly when I was seventeen but by that age he had already left an indelible impression upon me and had taught me so much. Donald was born and lived all his life on Skye and as far as I can remember never left the island. He was a man who had many struggles not least the fact that he found it hard to communicate. He was someone who in modern diagnosis would be described as having a learning disability. Though he found reading very hard his wisdom was one which rarely appears in the pages of a book. It was an authentic and immediate knowledge, one of intimacy with the seasons and with nature. Donald loved the land and the outdoors; he taught me more than I have remembered about the earth and the rhythm of nature and instilled in me a life-long appreciation and respect. One of the things I remember from the many walks into the hills and moors which we went on was his oft used phrase: “Always listen to the earth because it speaks to you.”

“Always listen to the earth because it speaks to you.”

On Thursday one of the most popular global days of observance will be held. It is World Earth Day. Every year on April 22, Earth Day marks the anniversary of the birth of the modern environmental movement in 1970. As on previous years it is expected that it will be marked by more than one billion people across the globe. The theme of Earth Day 2021 is Restore Our Earth™.

Both individually and collectively we are increasingly aware of the urgency of addressing the destruction caused by climate change and the necessity to sustain and protect our natural environment. However, whilst there is increasing recognition of these challenges, even amongst the most sceptical of politicians, there is also a growing frustration at the pace of response and change. Many of us were disappointed that the Paris Agreement in 2015 demonstrated such a low level of commitment and action. It is clear from all the political party manifestoes for the Scottish Parliamentary elections in a few weeks’ time that the climate and environmental sustainability will be one of the key issues which will influence people’s choice of candidate. Whilst Scotland has been more progressive than some, it is also evident that we have some considerable distance to go.

My colleague Karen Hedge has written about how important it is that those of us who are involved in social care contribute to this urgent national effort to meet climate and environmental challenges. Part of that, I believe, involves supporting the aims of the Health and Social Care Alliance, who recently published a report: ‘Sustainable Health and Social Care: Climate Change and COVID-19’ in which they call for £25 million to support a climate change innovation fund for social care.

We cannot care for humanity without caring for the earth. We cannot hear the dislocation of human community without also hearing the fragmentation of our natural world. To care fully requires a holistic understanding that we are all of us children of the soil and intimately entwined to the earth. Care leaves a legacy of compassion and connection in the lives of those supported and it changes the person who offers care. So too the way in which we care has to be something which future generations recognise as enabling and fostering of their ability to flourish on the earth as citizens of the natural world, connected one to the other. Care is never neutral, it always enhances humanity and it should also sustain our earth.

I believe that we have lost the ability to hear the accent of nature and the truth the earth is telling us. We need to re-discover the rhythms of the seasons of the heart where we accept that to care is not just about caring for a human being in isolation from others in community or from the natural world in harmony. Social care to be holistic needs to do more than pay attention to the challenges and issues of sustainability and environmental protection, it needs to mirror, mould and enhance these. There is a real opportunity that in the creation of a National Care Service in Scotland that we bring together the world of ecological and environmental responsibility with the world of human and social care, be that from the energy we use in care homes, the use of sustainable PPE all the way to the use of electric transport in the delivery of homecare.

I remember many things from my walks with my late uncle, not least the astonishing range of wildlife that at that time flourished on the island in river and moorland. Yet today I am aware of the sad reality that so much of it is gone possibly for ever. Our failure to nurture the earth has led to a shaming of our humanity. As we seek to restore and reframe our social care in Scotland I hope that alongside it and as part of that renewal we can also  nourish the restoration of our earth.

One of my favourite poets was someone who had a rare ability to hear what the earth was whispering to him. It is not without coincidence that the moors and rivers I walked in youth, where I was taught to listen to the earth, are the same ones, in the same glen, beautifully captured in one of his poems.

May we all learn to listen and learn.

Summer waterfall, Glendale

I watch a rock shone black

Behind thin water that falls with a frail sound

To the ferny pool. Elvers are roping upwards,

Tumultuous as hair. The rippling ground

Is elvers only, wriggling from crack to crack.

 

Above, a blackfaced ram,

Its viking head malevolent on the sky,

Peers down, stamps and is gone. A rowanberry

Skims and swims, a scarlet coracle, by.

Between two stones a grassblade breaths I am.

 

Small insect glitters run

On the water’s skin… I turn away and see

Distances looking over each other’s shoulders

At a black cliff, a ferny pool and me

And a tress of elvers rippling in the sun.

© Norman MacCaig, Collected Poems, Chatto & Windus, 1990

I have written many times over the years in this blog that the mark of any society or community that wants to enshrine dignity and humanity is the way in which it treats its older citizens. Events this past week showed just how poorly the governments of the world consider older age.

In New York, but mainly virtually, the United Nation’s 11^th Session of the Open-Ended Working Group on Ageing (OEWG) was meeting. The Group has existed since 2010 and is meant to consider the human rights of older persons and identify possible gaps in the law and how best to address them. For some time there has been a growing clamour for a new international treaty or convention for older people.

The 11^th session held between the 29^{th of} March and the 1^{st of} April was lively with the largest ever attendance from non-governmental groups from across the globe. One of the reasons for this is the almost universal feeling that the human rights of older persons have been widely broken and ignored during the global response to the pandemic. Indeed speaker after speaker recounted ways in which they felt that the care and support of older people had been given secondary attention, the needs of older citizens had been an afterthought and that the whole of the pandemic had evidenced a discrimination to and disregard for older people’s human rights. It was a series of moving and passionate, angry and demanding contributions. Then…

On the final day of the meeting, April 1^st, all those attending participated in the ‘Way Forward’ discussions on how the OEWG should progress its work. International human rights bodies and older people campaigners were unanimous in their view that the drafting of a new UN convention should commence immediately. A number of the Governmental representatives supported this call. But then things began to unravel because the final session almost didn’t take place due to the poor attendance of Member State (or Government) delegates. Many expressed outrage on social media. ‘After one hour and 45 minutes a quorum was finally reached, and the meeting concluded.’ Disappointingly, no decision was taken in the final meeting on the Way Forward or the creation of a sub-group to consider drawing up a new UN Convention.

Now creating a Convention and underlining the legal obligations which world Governments have to adhere to will not in and of itself mean that we will put an end to the glaring discrimination which older people face. I am not naïve and do not think that law alone changes conviction. But it is itself illustrative of the endemic discrimination that older people have faced during this pandemic that representatives of national governments could not even drag themselves to the final session of a UN body dedicated to addressing age discrimination.

The world needs a new Convention so that the human rights of older persons can be advanced and protected.

The lack of action and focus is even more farcical when you consider that in December 2020 the United Nations proclaimed 2021-2030 as the UN Decade for Healthy Ageing. This initiative, led by the World Health Organization (WHO), is meant to be an opportunity to bring together governments and civil society for ten years of concerted action to improve the lives of older people, their families, and the communities in which they live.

According to the Global Report on Ageism, released on 18 March 2021 by the World Health Organisation every second person in the world is believed to hold ageist attitudes – ‘leading to poorer physical and mental health and reduced quality of life for older persons, costing societies billions each year.’ Such a finding is a damning indictment of all our communities.

The aims of the Decade are laudable and include the need for action to change how we think, feel and act towards age and ageing and to ensure that communities foster the abilities of older people. Clearly in light of the passivity of the United Nations last week and  the pervasive ageism in our countries we have a long way to go.

All this might sound and feel to be of academic and distant interest, but it impacts on what we do or do not do here in Scotland. There has been very real unease about the way in which we have responded to the needs of older people in the pandemic. I have written a lot about the human rights failures in our early clinical advice, in our attention to the mental health impacts of lockdown, the use of DNACPRs, in our failure to test practice by human rights assessment, and most especially the impacts on the rights of older people in care homes by a lockdown that went way beyond what was acceptable. There are many other areas where older people feel they have not been heard or valued as the world around them struggled with coronavirus.

It is time for Scotland to join both Wales and Northern Ireland in appointing an Older Person’s Commissioner, to have a post which can hold accountable both national and local Government for their actions and policies as they impact on older people. The work of Helena Herklots in Wales and Eddie Lynch in Northern Ireland has shown beyond doubt that such a post really can make a difference to older people.

I do not have any insight into the political party manifestoes for the election that is a few weeks away, but even if they do not have such a commitment within them, I hope we can all commit to making it one of the legacies of the pain of the last year that Scotland can join other nations in appointing an Older Person’s Commissioner.

The events of the last week in New York show the marginalising of older age in the priorities of world government, they should not be allowed to dictate the response of Scotland to such challenges. How can you have a Decade of Healthy Ageing when you fail to respond to such a glaring need?

Perhaps it is that we need to find some of the angry energy and passionate vigour of older age described by the great Liverpool poet Roger McCough and declare not for us the passive platitudes of political acceptance but the need to transform with urgent vigour and an unsettling of the status quo our response to older age? We will never achieve the aims of Healthy Ageing and truly transform our ageist society unless older age itself acts to demand it.

 

‘Let me die a youngman’s death
not a clean and inbetween
the sheets holywater death
not a famous-last-words
peaceful out of breath death

When I’m 73
and in constant good tumour
may I be mown down at dawn
by a bright red sports car
on my way home
from an allnight party

Or when I’m 91
with silver hair
and sitting in a barber’s chair
may rival gangsters
with hamfisted tommyguns burst in
and give me a short back and insides

Or when I’m 104
and banned from the Cavern
may my mistress
catching me in bed with her daughter
and fearing for her son
cut me up into little pieces
and throw away every piece but one

Let me die a youngman’s death
not a free from sin tiptoe in
candle wax and waning death
not a curtains drawn by angels borne
‘what a nice way to go’ death.’

 

Donald Macaskill

Over three decades ago I undertook two placements at one of the major psychiatric hospitals in Scotland. It was during one of them that I got to know George, or should I say that George started to allow me to ‘know’ him. George was the first person I had met who lived with Kanner’s or severe autism. Even the term severe autism is a dubious one often designated by diagnostic models as Level 3 Autism. George needed a great deal of support which his family could not provide, and he ended up in hospital simply because at the time there was no service available to support him.

George struggled as many with an autism spectrum disorder do with social and communication skills and did not use spoken language but instead used a mixture of sound and movement to communicate. He was highly sensitive to light and smell and it took several weeks to learn how to be able to communicate with him. For too many years those around him thought he was of ‘limited’ intelligence but through the dedicated skill of one or two professionals George had learnt to communicate well and with real insight and articulacy.

George taught me about his world through his action, behaviour and communication and sowed in me a life-long fascination for autism. He taught me to see in body gesture and finger flicking a reaching out to bridge our communication, he helped me understand what was meant when he rocked his body, slammed doors or hit himself. He helped me understand the inner frustrations and sensory overload which at time reduced him to acute physical pain. Over the weeks I began to understand that behind his ‘eloping’ and continual wandering there was often an acute incident of a gastrointestinal pain. George allowed me into his world or more accurately he helped me to open my eyes to what he was communicating to me.

Next week from 29^th March to the 4^{th of} April it is World Autism Awareness Week. Every time it comes to World Autism Week I remember George more than anyone else. I recall the world in which he lived his life.

If I am honest before I started to meet people like George I had thought of autism as being something which mainly impacted children – which might seem nonsensical today but was a not uncommon view in the 1970s and 1980s. Indeed autism was not included in major western disease classification until that period. But children with autism become adults and then older adults living their lives with autism. On a practical level many of those who are now in older age were never formally diagnosed and have often lived their lives with a minimum or no level of support – the support which would have helped them to achieve a much better quality of life. For not a few older people with autism there have been inaccurate diagnoses or wrong attributions to mental health problems or dementia, which can lead to inappropriate treatment. For too many there is a casual presumption that their behaviour is simply eccentric or the sign of ‘old age’!

In my current role in the care sector the experience of older adults with autism is one which causes me very real concern. Relatively speaking we have so little research and understanding of what the impacts of a lifelong condition like autism are on people who are old and very old. However that which does exist evidences that many older people with autism are socially isolated and have difficulties sustaining employment and relationships. All this is exacerbated with the knowledge that many individuals continue to live with parental and family carers, but inevitably those carers become old themselves and die. The risks of a sudden breakdown when there has been no planning for transition and change are very real, and sadly too many people with autism in late adulthood endure severe poverty and become homeless. I know from speaking to frontline care staff in the community just how many people fall through the gaps in our current disintegrated health and social care system.

Research by Prof Rebecca Charlton from London has shown that age and severity of autism are linked, and that ‘as age increased so did the severity of autism symptoms in social situations, communication and flexible thinking (such as coping with change or generating new ideas or solutions).’ They also found that older people with autism were more likely than younger people to extract rules from situations or prefer structure.

The pandemic has accentuated what for many older people with autism was already a hard and dislocated existence. It has led to very real challenges for those organisations and charities which support people, and it has limited the appropriate access to clinical and medical interventions. It has prevented or halted some positive developments which were focussed on training frontline health and care staff to get better at recognising and responding to late-age autism.

As we seek to recover we must get better at understanding that autism is indeed a lifelong condition, and we must as a wider society become more robust at wrapping appropriate support around people who require intervention in order for them to be as autonomous and independent as they want. Rebecca Charlton has stated that at present we do not even know whether people with autism age in the same way as people without autism in part because of the relative age of our awareness of the condition. People with autism may develop robust coping mechanisms from which we can learn but equally transitions of age may result in sharp deterioration and decline. There is so much we do not know.

In my many days with George all those years ago he taught me that he had a way of seeing the world and being in that world which was foreign to my understanding and knowledge. He taught me that his world was one of value and worth, of depth and mystery, of insight and knowledge. Such sentiments are beautifully expressed by Penelope who shared her poem with the National Autistic Society. I hope as we move forward not just in the next focussed week but thereafter we can as a whole community become more skilled at and dedicated to supporting those older people who live with autism remain citizens of their and our world.

Of another world

I am of another world –

A visitor, a stranger to your shores,

An immigrant born in your heartland.

I am other,

Apart,

A legal alien in native skin,

Vulnerable,

At your mercy.

So treat me gently:

Your customs are strange to me,

Although I was raised within them,

And I fear your people,

Your places,

You.

Accept my behaviours,

As I accept yours,

And understand that I am different,

Not dangerous;

I shall come to love your world;

And it shall become my home from home;

But at heart,

I am always other,

Always apart.

I am of another world.

 

 

Donald Macaskill