Today is Human Rights Day which is an annual international celebration and recognition of the critical role that human rights play or should play in all our lives.

The theme this year is Dignity, Freedom, and Justice for All and reflects both the international dimension to the 30 articles that constitute the Universal Declaration of Human Rights which underline the treatment, freedoms and fundamental expectations that citizens in all countries have the right to live under.

There is an added significance this year in that the 75th anniversary of the Universal Declaration of Human Rights will be celebrated on 10 December 2023. Ahead of this a yearlong campaign is being launched today to showcase the ‘legacy, relevance and activism’ of the UNDHR. Under the call to action to #StandUp4HumanRights the organisers state that the UDHR highlighted the “recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family is the foundation of freedom, justice and peace in the world.”

I have often written and commented about human rights in this blog. I have argued most recently that there is much potential in the Scottish plans to incorporate the International Covenant of Social, Cultural and Economic Rights into Scottish law. In particular the embedding of a broadly defined right to health to include the rights to social care, palliative and end of life care and bereavement support has much to offer the citizens of Scotland in the years to come.

But today is a time for honest reflection and appraisal not just recognition of achievements and the articulation of aspiration. Part of that reflection must surely be the extent to which the not insignificant existing human rights-based legislation has or has not made a real difference to people in the ordinariness of their living. Indeed, one of the oft quoted aspirations behind the creation of the UK Human Rights Act in 1996 was the desire to ‘bring human rights home. A desire to ensure that human rights were not restricted to dusty courtrooms, that they were not solely the preserve of legal discourse but that they meant something to everyone in a community regardless of circumstance.

I’ve reflected a lot about whether or not we’ve managed to bring human rights home. I’m not at all sure we have. Now lest I be accused of supporting the latest Westminster Government’s attempts to change and limit the current human right protections we all enjoy – that is absolutely not the case. The so-called plans to replace the Human Rights Act with other watered-down legislation are both damaging and dangerous. Far from replacing the Act I want to see it strengthened and better resourced. I want to see developed a new framework for national enactment, citizen participation and collective realisation.

In reflecting on the experience of so many not least older people during the pandemic and those receiving social care support in community and care home; in considering the extent to which there has been a lack of equal treatment, voice and inclusion over the last two and a bit years and in truth for a long period before – to name but two examples I would argue that there is a significant implementation gap between human rights based legislation and its enactment in practice.

It is all very well to have some of the most progressive and inclusive legislation in the world passed by parliamentarians both in London and more recently Holyrood – but if it is not empowered by enactment, if people are not able to exercise recourse or to know their rights in realisation; if there is a lack of resource to train, equip and engage all stakeholders – then human rights based legislation is empty and potentially duplicitous. There is I would suggest an urgent need to independently assess the extent to which human rights are being progressively realised in Scotland today. There is equal urgency in building and resourcing mechanisms and models that allow every citizen with a concern over the removal or diminution of their rights to have an ability to exercise immediate voice and if necessary to achieve urgent redress. We do not have such.

As we reflect on human rights this day and the coming year I very much hope we will also ensure that we continuously strive to develop a framework of human rights which have real accessible meaning for every citizen and not just a minority who are empowered to understand and access their rights. If we do, then the 75th anniversary will be really worth celebrating. If we do, then we can claim with integrity that we #StandupForHumanRights.

To celebrate the launch of the Human Rights Law Review in March 2015, the Human Rights Collegium asked Queen Margaret University London law students to submit poems on the theme of ‘Human Rights’. The winner was one Thomas Baynes who wrote ‘July 1995’. His words resonate as I read them in the winter of Ukrainian struggle but they also echo to the truth that human rights lost to some command those of us who are alive to act and hear.

 

From the depths they have cried to us,

While we sit by rivers and weep

in remembrance of their tears.

Their silent howl deafens out our

empty courteous words and fears.

 

There upon Balkan valley floor,

does the elemental death dance

over wood-brown coffins shrouded

in grass green cloths, suffocating

the humble dead who hold their breath.

 

White skulls stained brown and drowned in an

ocean of fog and dirt and blood.

Eyes, hair, smiles, all consumed by hate

and by the black ignorant mud,

lost to the tragedy of fate.

 

Why then, this terror and this pain?

For some forgotten lord’s dead name?

Or the glory of ancient gods?

Twas hate breeding love caused stillness

to roar and blameless tears to rain.

 

No affirming flame can be lit

to banish the dark from our minds,

No romantic lie can be told

to ease the reality of

our past torpors and woes.

 

We can only awake now to

the mute alarm of their lament

and raise ourselves from inertia,

so never again we should fail

to hear the breathless dead exhale.

 

https://pickmeuppoetry.org/july-1995-by-thomas-baynes/

 

Donald Macaskill

The following talk was in part delivered at the close of the Scottish Care Care Home Conference held in Glasgow yesterday.

 I don’t get much time for reading these days so when I do something needs to capture and hold me – and one book recently has done just that – Sir Geoff Mulgan is Professor of Collective Intelligence, Public Policy and Social Innovation at University College London. He used to be chief executive of Nesta and held government roles including as Downing Street’s head of policy in the early noughties. He’s written a book called ‘Another World is Possible: how to reignite social and political imagination.’ I’d thoroughly recommend it as it is a book brim-full of ideas and insights, no little challenge and a lot of provocation.

Its main argument is that as societies and the world face the challenges of living in the light of the pandemic and the ‘slow calamity of climate change, we also face a third, less visible emergency: ‘a crisis of imagination.’

Mulgan argues that especially the young struggle to imagine a world better than the one we live in now and that perhaps they are the first generation so to believe – the first generation which is less positive about the future we are creating and leaving for our inheritors. Too many are resigned to fatalism or at most tinkering on the edges of real change and transformation. This crisis of imagination is crippling us and we need to discover ways to reimagine the future to reimagine better and to visualise how we are going to arrive and get there.

I don’t know about you but I certainly want the children of my living and the community of my belonging to be living in a world better than it is now and I still with Mulgan believe a better world is possible.

And I know that’s hard – it’s risky to dream and visualise change and difference and not be accused of escapism and utopian folly – but I think that’s what we have to do even after a day in which we have not exactly avoided or not heard the challenges facing the care home sector in Scotland.

I want to use some of what Mulgan says to spend a bit of time at the end of our day reflecting on the future of care homes. I want the reflection to be practical in nature, but I also want to challenge both myself and ourselves. I am starting from the premise – that we urgently need to re-imagine the future of care homes and aged care in general – in part because I do not think we can stand still, that what we offer now will not be fit for purpose in fifteen or twenty years, and that if the sector and its leadership does not do the work of re-imagining tomorrow’s care and support  – along with those who use supports and their advocates and those who are likely to be users of aged care in the future  – then the re-design will be undertaken by the misinformed, biased and partisan – no doubt accusations which will be directed towards myself. But I’m also convinced that re-imagining always is an activity shared with others never a solitary pursuit if real change is desired.

So why is imagination so important? Mulgan explores this in great depth using insights from Socrates to Star Wars and with him I believe that ‘Society now and in the future depends on imagination.’

He rightly critiques the fact that there is a real dearth of imagination and a poverty of ideas in our society… and I think that accusation can be amplified when we think of the world of social care – and I will be honest from what I have seen thus far from the ideas of the National Care Service – although there is a lot of good stuff, its view of the imagined possible future is predictable, pedestrian and a re-shaping of the known into a familiar future not one that will outlive its designers. And lazy re-imagining is dangerous and inexcusable – because and this is selfish – I do not want a future world of social care support to be the fruit of compromise and affordability, of lazy design and casual engagement – I want it to be a horizon which draws me in and which opens up a new world for me.

Imagination is a powerful force and tool if used well. For something to be it has to become real and imagining something births that reality. Ideas do not come from nothing, new systems, and ways of relating originate somewhere with someone or they remain forever locked in our heads.

Imagining the future of care homes is not about cloud cuckoo land but recognising that the fruit of tomorrow is already growing in the soil of our present experience.

Part of what I think the residential care sector has to do is to develop what Mulgan calls the ‘adjacent possible’ – the nearby options which are the alternatives to present arrangements – but have a spark of the familiar. But I also think we have to go much further than just tweaking or light changes – we have to be much more adventurous and explorative. We have to develop a collective of care imaginaries – people who have the skill and foresight to imagine a better future and a different way of being and doing aged care.

Social care in Scotland badly needs dreamers and people who can see beyond the limited vision of the now. That’s why I have looked with real interest at the HIVE collective. But I hope you will excuse me because I am going to try and picture a different future –to try to expand what Mulgan calls the ‘possibility space’ ; to backcast into the future.

In visualising that future I want to plant certain seeds in the present and you can decide if they grow and flourish or if they deserve to shrivel in the earth.

The first is that we have to urgently re-imagine age:

I do hope that at some point today you have had the chance to drop by the stall staffed by colleagues from the University of Stirling and elsewhere and have learned more about the project Reimagining the Future of Older Age. They have done some brilliant work including producing a gorgeous film by Ray Bird. The project is about how we think about the future as we age and as we become older; does the future matter more or does it matter less? It challenges the dominant stereotype and cultural narrative which presents older age as nothing to do with the future – the belief that the future belongs to the young.

Dr Valerie Wright now of Glasgow University reflects that as we grow up we always ask young people ‘What do you want to be when you grow up?’  but no- one ever asks older people what do you want to do in the future? What do you want to do when you get older? Who do you want to be? And how very true she is.

A reimagining of age is necessary to challenge the inadequacy of those narratives and societal biases. As I have consistently and often said I have personally witnessed first-hand, lives transformed and changed, as in the last months, days and moments of life a reconciliation has been nurtured, a discovery made, a new creative contribution shared, and a new loving started.  The future has no use by date.

And let’s be honest the world of social care and aged care is too often dominated by a narrative which accepts the bias against contribution and capacity of older age.

For instance, we have rightly used reminiscence – a looking back – as a mechanism and a means to ease the distress of those with neurological conditions such as dementia – but I increasingly wonder whether the dominance of reminiscence approaches is misplaced and that we are losing real neurological benefit by not adopting a more futuristic approach to dementia care and support and to older aged care in general.

Reimagining age whether in care home or community is a fundamental first step to the reimagining of a future of contribution and new discovery.

The second seed which I think the world of aged care needs is to re-imagine the very essence and nature of collective living, of being in community in older age with one others.

It is inescapable – and this is true of the world over – that we must ask a fundamental question as to whether or not congregated or collective or group living remains an appropriate modern form of being in community with others.

Or being blunt do we just do it for those who are too old, too frail, too poor, because it is the cheapest way for a society to hold to its moral and ethical duties of care? Hard words but unless we can answer them in an affirmative way which says no – that collective living in older age can be life-changing, life affirming and life enhancing – then we are deceiving no-one.

Now my personal premise is that I really do believe that the future – to say nothing of the present – is about us living by choice not by cost – in community alongside others.

Some would say congregated living is always wrong – never acceptable – and Twitter is alive with a narrative which equates care homes as removers of rights, limiters of choice and control, ‘prisons’ of individuality. That critique has to be answered honestly.

But personally, I believe there is a future for collective and shared living and one of the reasons is that it is better than isolated loneliness. It will not be long before the majority of people in Scotland over the age of 65 will be living in single person households – and we have already witnessed a saddening growth in isolation, loneliness and mental distress amongst those who are alone – so it is not unreasonable to suggest that increasingly there will be a growing number of people who choose to live alongside others, and at a stage of  life when they have control and capacity – that shared collective living becomes something that is desirable and beneficial.

But just as I am convinced that collective and shared living has a place in the future of aged care – so I am equally convinced that a radical re-design of the way we deliver care and support in a shared space is very necessary.

There is a narrative which says that shared living is about creating a home from home; that care homes are people’s homes first and foremost. Inevitably there is a counter critique not least as a result of pandemic response and behaviours, that says that care homes have failed in being a person’s home. So the sector has to honestly ask, in replicating a home from home how are we doing?

Are our care homes places where people can live and love, rest and be loved, grow and be fulfilled, discover and change – or are they rather places where folks work, people are checked and viewed, monitored and evaluated? Are they places where we obsess about risk or let the mess flow, are they tidy or unkempt, disease free or life affirming?

We use home not to limit or imprison us but as a place to be ourselves, to be fed and renewed, to rest and relax, to entertain and be entertained, to sleep and restore, to be secure and be comfortable, to hide and be private. Are our care homes such a space and place?

For me a home is a place to make memories – what are the memories made in our care homes? Are they life enhancing or life limiting?

If we answer that care homes are not a home from home, then we have to ask honestly can we change that to a yes?

My third seed is that for me part of the re-imagining of aged care must surely be about build and design. Imagine a world will you where you all live in exactly the same type of house – everything is the same – no variety and no distinctiveness – every room measures the same, the layout identical, the windows are where they are – the mundanity of the predictable rules. But your individuality is allowed up to a point – you can decorate the space as you want – you can even bring some of your own things – providing they are of suitable material as to prevent infectious spread and conflagration. Not that much of a caricature in case I’m accused of it

The future has to be not so much about the architecture of design and more about the imagination of space. I think we need a radical redesign of space and place so that we allow both architectural and design freedom -collective living in space needs a revolution – or we will continue to ghettoise older age – at its worst in places separate from community by geography and cost or separated from connection even in the midst of busyness. Aged care beyond four walls does not just happen by accident it has to be purposefully designed and built.

There are emerging examples of such creativity like the ‘What we Share’ models in Stavanger Norway; Berlin’s ‘baugruppen’; Lange Enk in Denmark or Kraftwerk 2 in Switzerland.

We have a chance to capture the design spirit of the age. The idea of ‘fifteen-minute cities’ – sometimes known as 20-minute neighbourhoods – probably needs little introduction. Strongly associated with the Paris professor Carlos Moreno, and the mayor Anne Hidalgo, it has gained extra energy from the pandemic and the changes in our living in community. Its basic premise is that all our daily necessities can be accomplished by either walking or cycling from our homes. It shrinks the whole concept of what local means to the touching – or walking distance of our neighbourhood. It is closely linked to the concept which is becoming hugely popular of ‘ageing in place’ which is “the ability to live in one’s own home and community safely, independently, and comfortably, regardless of age, income, or ability level.” Ageing in place has something to say to the future of aged care in residential and nursing shared communities.

My last seed is that we radically need to re-imagine the nature of scrutiny, inspection and oversight in aged care. Of course, both families and residents, and wider society needs a sense of assurance about the quality and humanity of care – but increasingly I feel we have the balance all wrong. A care home resident is more closely observed, monitored, and watched than your average penguin at Edinburgh Zoo. The human right to privacy, to dignity alone, to the joy of absence, the hiddenness of living – all are lost when we turn our aged care settings into goldfish bowls. The individuality and uniqueness of the person, the desire to take risks and make mistakes, to fall in your failing and rise in your discovery are put aside if we adopt measures that limit self-expression, individuality, and freedom.

The perverse irony is that all our standards and statements talk about systems being person-centred but leave no room for care support to be person led by resident and family. At the very least we need a radical balancing of risk in aged care regulation. The constant current behaviour and presumption of the right to intrude on the part of outside agencies is offensive and unacceptable.

I could go on but for me this is a conversation not a soliloquy – the future of aged care in Scotland – of collective shared living is too important to leave to accident or happenstance – it needs a work of imaginative discovery and exploration.

I love old maps because at their best they are not about helping you find your way, but they tell you the story of a community or nation at a particular time. None more so than ancient medieval maps. On many of these maps at the edge you can sometimes see a picture of a wild beast and the words ‘ Here be dragons…’ – that was for all the places which were unknown and yet to be discovered.

Explorers use the knowledge they have to try and test the waters of the future – they venture into the unknown, but they are not just dreamers searching for utopia – because they use the skills and instruments of their known reality to create a different tomorrow.

Reimagining the future of aged care is about travelling beyond the known into a new world of discovery – it’s about re-designing with others, a future we want to achieve – it is a world where older age still grows And flourishes and changes and contradicts; it is a space and place where conformity to design is replaced by the adventure of personal control and choice; it is an experience of self-freedom rather than external monitoring; put simply it has to be a world which we would be proud for our children and our grandchildren to inherit.

 

Donald Macaskill

Many of you will know that November is a month dedicated to give special focus to issues of male health. It is also a month increasingly known as Movember because of the international movement of that name.

The origins of the Movember movement which has funded over 1,200 men’s health projects globally are relatively recent. A TV news programme in 1999 shared the story of a group of young men in Adelaide, South Australia who coined the term “Movember” and the idea of growing moustaches for charity throughout the month of November. Like all good ideas it seems to have originated in a pub discussion but has done a huge amount not only in Australia but across the globe to increase awareness of male health. Movember in all its charitable work has raised $174-million worldwide.

Movember has a particular focus on prostate and testicular cancer, suicide prevention and male mental health.

As someone who grew up in west Scotland and in a cultural and community environment where men rarely spoke about issues of mental health and emotion, saw going to the doctor as a sign of failure, and certainly did not consider precautionary actions in detecting cancers, the amazing work of Movember seems light years away and evidence of very real change and progress.

Yet I wonder if we have changed all that much. Indeed, having worked in health and social care for quite a while I remain astonished at the frequent resistance of men to take up opportunities around health screening and wellbeing. There clearly are still deeply ingrained cultural and societal attitudes and behaviours which assume that seeking help, talking about your feelings and sharing fears and concerns, or simply just attending to one’s own health are activities not deemed to be masculine and male.  Damaging nonsense which must surely come from somewhere.

It is well known that men will die on average 4.5 years earlier than women, and for reasons that are largely preventable. Men are simply dying too young, and it does not need to be like that. As I visit care homes it is clearly the case that our male population is seriously under-represented amongst the very old. Surely this is a silent reality that we should all be seeking to prevent? Movember has a clear aim and that is to reduce preventable male death by 25% by the year 2030. It is a laudable and perfectly achievable aim if we change the narrative around masculinity, maleness and health. I would contend that this must start with our approach to stereotypes in relation to health at a very young age. The absence of strong male role models positive about health and preventative care and behaviour does not help in this battle against avoidable death.

The data and statistics are self-selling and self-evident. Prostate cancer is the most commonly diagnosed cancer in men in the UK. Testicular cancer is the most common cancer in men aged 25-49. On average, 13 men each day take their life by suicide in the UK. In Scotland, one man in four dies before the age of 65. Indeed, healthy life expectancy for men has fallen by more than a year in Scotland, with no similar change seen in other UK nations. Life expectancy for males at birth was 60.9 years in 2018-2020, a drop of 1.4 years on the previous two-year period, according to the Office for National Statistics. These are statistics that require focused action.

There are some tremendous and creative organisations focussed on male health in Scotland and yet there strikes me as a lack of coordination and policy focus in attending to this major area of public health. This is especially noticeable when I explore what is available for older men where the lack of provision and resource seems especially concerning. Movements such as Movember are to be greatly lauded and supported but they can be no substitute for governmental and system focus on the prioritising of the needs of men in our population, not least older men, and nowhere more so than in Scotland.

I couldn’t put it better than the words of the internet poet forty two who wrote:

 

The Antidote to Man Flu (Movember Muse)

 

Man flu is not a decease

or a medical condition

but shameful terminology

and psychological attrition

designed to keep men working

and pretend they are not ill

because their health is less important

than the tasks they must fulfil

 

Then the demand that men “man up”

translates to ignore distress or pain

ignore your personal wellbeing

for anther’s personal gain

compounded by the social stigma

should a man dare to complain

or should he show emotion

people react like he’s insane

 

The ratlin and prozac

that the doctors freely give

create controlled existence

and stifle the ability to live

it’s time to end the shame

silence the voices in your head

and the first step is to prescribe

a pill thats coloured red

 

https://allpoetry.com/poems/about/mens-health

 

Donald Macaskill

 

Next Friday in regimented moments of silence the nation will come together to remember all those who in a growing number of conflicts paid the ultimate sacrifice of their lives for the love of other. For the diminishing few who were alive during the Second World War this year’s reflections will have an added poignancy not least because a mainstay of connection will be absent following the death of Elizabeth the Queen. But perhaps an even more acute resonance is because we are remembering at a time when Europe is once again witnessing the barbarity of war and the evil which is humanity’s hatred of others. How little we remember.

Anyone who has been following the images from Ukraine will know well the horrors that tens of thousands have and are still enduring. You will call to witness the thousands of men, women and children who have had to flee to find rest and rescue in other nations of Europe including Scotland. It is beyond comprehension that in the 21st century we are watching on our television screens scenes of destruction and bombing resonant with those of the 1940s. How little we remember.

I suspect like many of my age who have not known war directly I have often asked of others the question as to why with such distance of time we still remember in formal gatherings. I’ve answered that query in part because of a personal need to pay tribute to those in my own family who fought and in some cases died in war, even if known only to me by name and story. But the older I get the more convinced I become of the importance of remembrance both as a collective act of solidarity and of commitment but also as something which needs to with ever greater energy become part of the rhythm of our togetherness. The act of remembering is an act of loving.

So what is it on Friday and every day that as individuals and as a community we should seek to remember and to piece together from the fragments of our feelings inside our hearts and minds?

That’s always going to be an individual response but for me at this time and in this place where priorities seem so skewed and when fear is so prevalent amongst the old and ill, those in my world who work in and receive social care supports – remembering has to be about active loving.

Remember as we silently stand the lives of those shut in by fear of not being able to pay their bills and who risk coldness and worsening health.

Remember all those working in homecare and care home, who try every day to soothe the hard memories of confusion and distress for those whose worlds dementia has shrunk.

Remember all who are sitting looking at an empty chair because love and togetherness has died and a routine of echoing sadness fills their home and days.

Remember those going without food today because they have chosen to feed their child or clothe their neighbour.

Remember those across our nation who have called our streets their place and our homes their hearth but whose love and loves are in a Ukrainian or foreign shore.

Remember those who feel no one knows their pain, hears their story or cares about their living.

Remembering is empty and is an action of avoidance unless it is accompanied by a focus to make memory real and to change the reality of pain. So as we remember let us focus with a renewed vigour on creating a tomorrow worthy of remembering.

Joy Haribo was appointed the United States poet laureate in June 2019, and is the first Native American poet laureate in the history of the position. She is a member of the Mvskoke/Creek Nation and belongs to Oce Vpofv. Drawing on both her upbringing and cultural knowledge and studies Harjo’s life and poetry is grounded in the natural world and by a strong emphasis on the spiritual. She uses native chants and prayers in her poetry which evidences both a desire to memorialise and as a call to action for the creation of an environmental and human justice. One of my favourite Harjo poems is ‘Remember’ which calls us to recognise and rejuvenate with the connectedness of our belonging to the natural and relational world around us. Remembering has to be an act of loving.

Remember

Remember the sky that you were born under,

know each of the star’s stories.

Remember the moon, know who she is.

Remember the sun’s birth at dawn, that is the

strongest point of time. Remember sundown

and the giving away to night.

Remember your birth, how your mother struggled

to give you form and breath. You are evidence of

her life, and her mother’s, and hers.

Remember your father. He is your life, also.

Remember the earth whose skin you are:

red earth, black earth, yellow earth, white earth

brown earth, we are earth.

Remember the plants, trees, animal life who all have their

tribes, their families, their histories, too. Talk to them,

listen to them. They are alive poems.

Remember the wind. Remember her voice. She knows the

origin of this universe.

Remember you are all people and all people

are you.

Remember you are this universe and this

universe is you.

Remember all is in motion, is growing, is you.

Remember language comes from this.

Remember the dance language is, that life is.

Remember.

Remember by Joy Harjo – Poems | Academy of American Poets

Donald Macaskill

“I don’t think I’ve ever been as stressed as I am these days. I just don’t feel in control of things anymore.”

These are the words of a carer this past week. She is an unpaid carer for her husband who is living with a progressive and degenerative disease which sadly is terminal. She has been his wife, carer, confidant, and lover for a long time. She is well used to the highs and lows of his condition and his mood swings. She manages and relates with a degree of positivity and optimism that friends and family around think to be astonishing and remarkable. But things have been getting progressively harder and harder over the last few weeks and months. There are so many things which have been the straw to break her back of positivity – the withdrawal of Covid protective measures which now make her feel she is imprisoned in her own home because going out makes her feel she risks returning with the disease and killing her husband. Added to that is her anxiety over how she is going to be able to pay energy bills even after the promised assistance because being at home all the time in a Scottish winter costs a lot. Then there are the rising food costs, crazy prices 60-70 % more than a few weeks ago. But most of all she is just tired and weary. Family are great and friends supportive but especially in the long dark nights the relentlessness  of compassion costs her so much and it aches into her bones. But all the time she knows that the tick of an invisible clock brings her closer to the day when she will be alone and that perhaps more than anything else stresses her inside and out.

“I don’t think I’ve ever been as stressed as I am these days. I just don’t feel in control of things anymore.”

These words sum up quite a few of the conversations I’ve had in the last few days and weeks with professional paid staff both in homecare and in our care homes. On top of the struggles to pay the energy bills, or the petrol to get to work in the first place there are so many pressures and stresses which folks often don’t get. Caring is a job like no other – it costs you and those around you because you are continually giving and sharing. Care is not about the task of a hand or the function of something you do, but it is rather the sharing of a heart and the solidarity of being with another in good time and in ill. But the thought which has held heavy for so many I speak to is the fear of going into another winter. The last two have been so very hard but the unknown quantity of a resurgent Covid – because if you care you know the truth that Covid never left in the summer and is now getting worse – and the anxiety of a virulent flu – is freezing out hope and optimism. And yet perhaps the most acute anxiety and stress is that there are so many thousands who receive care support who are already struggling. Jane told me of making five visits to older people supported in their own home that morning and four of them had turned their heating off because they fear the bills. She is really worried that one day she will find someone has died from the cold. Caring is becoming harder by the day.

“I don’t think I’ve ever been as stressed as I am these days. I just don’t feel in control of things anymore.”

John runs the care home founded by his father and mother. He loved playing there as a child and getting to know so many older residents. They were and are his family. He went away and did many other things, but the pull of care took him home to this special place. After training and qualifications, he ended up becoming the manager. He has been in the trenches of despair and loss with residents and families over the last two years but when I spoke to him a few days ago it was the first time he was on the edge of tears. He simply cannot see any way that he can continue to hold onto the staff he has, to continue to deliver the quality care he wants, and at the same time pay the energy bulls which are (even after support) thousands of pounds more; agency staffing costs which for one night are the equivalent of paying for a nurse for a fortnight; and rising costs for food and other supplies. And unlike any other business he cannot turn the lights off, close the door for a day or charge more, not least as his main client, the local authority, pays the same amount as before. John is in tears because he feels he has no option than to close the home which has been so much part of his life – but he feels he needs to do so to make sure he keeps his residents safe this winter

“I don’t think I’ve ever been as stressed as I am these days. I just don’t feel in control of things anymore.”

All these scenarios are illustrative of the very real stress those living with and in the world of social care are experiencing at this time. I was reflecting on so many more similar stories of stress being now experienced when I discovered that this coming Wednesday is the annual National Stress Awareness Day.

There are millions up and down the country who are feeling real stress and anxiety currently. The economic and political events of the last few weeks and months have added a real burden on to people and their communities. Such stress is deeply affecting the wellbeing of individuals and our society as a whole. Indeed, the Mental Health Foundation has stated that at some point in the last year, 74% of us have felt so stressed that we have felt unable to cope.

The experts tell us that stress is the feeling of being under too much mental or emotional pressure. ‘Stress is your body’s reaction to help you deal with pressure or threats. This is sometimes called a “fight or flight” response. Your stress hormone levels usually return to normal once the pressure or threat has passed. But in the world of social care we seem to lurch from one stress trigger to another with little or no respite. ‘When stress is overwhelming it can cause other mental health problems, emotional exhaustion and physical illness and can impact on work, relationships, families, and every aspect of life. When someone is suffering from negative or overwhelming stress, they may not act or react normally in some situations, for example driving or in an argument, with disastrous consequences.’

I cannot but conclude at this time that the women and men who care, both paid and unpaid, and the managers, nurses and supervisors in care homes and homecare services are under the most immense and intense stress that I or they can remember. What such stress needs is practical and concerted political and societal action to both recognise the reality of the stress, identify solutions to it, and to address these with an urgency and immediacy.

As we turn back the clocks and enter the darker days and nights of the year, we have to offer a light of hope and positivity to folks who are in such dire anxiety and distress. Platitudinal actions and referring people to self-help wellbeing mechanisms will not suffice – it is time for society to get serious and to actively relieve the stress on those who care because they are beyond the point of resilience, they are now breaking.

Donald Macaskill

Yesterday evening along with over 500 guests I attended the Welsh Care Awards in the City Hall, Cardiff. I was in Cardiff because that was where the Five Nations Care Forum had been meeting for a day. This is a Forum which brings together care representatives’ bodies from the United Kingdom and Ireland twice a year to share issues of mutual concern and priority. Clearly the cost-of-living crisis, the energy and fuel crisis, and the huge workforce shortage were issues which all the five nations shared. Because I was in Cardiff I was invited to present an Award at the Welsh Care Home Awards. It was a real honour to do so.

The evening was amazing not least because it was the first time that the Awards had been held since the trauma faced by the care sector in Wales during the pandemic. It was so good to hear such amazing stories of professionalism, integrity and sacrifice; to hear first-hand from the First Minister of Wales, Mark Drakeford, of the value and priority placed upon social care by the Welsh Government, and to be part of such an emotional evening graced not least by amazing musical contributions from Sir Bryn Terfel and Wynne Davies, the event’s compere.

Throughout the evening as I sat there listening to stories of great professionalism, about nurses and carers, about domestic and catering staff, about managers and supervisors, one word kept being used time and time again. That word ‘value’ – that these were people who we needed to value as an intrinsic part of society in Wales and that they deserved all the value that was being shown to them during the event and by the Welsh Government and wider Welsh society.

The dictionary describes ‘value’ as the regard that something is held to deserve, its importance and worth. It also states that value has a sense of moral or ethical character. Indeed, the root of the word in Old French has connotations of strength and worthiness.

I reflected on whether we really value social care and the workforce that represents that world? Or is our sense of societal value transitory and illusory. I reflected on whether one of the reasons so many feel a sense of lack of value is that in general terms if society is being honest, it does not value care in essence. Three brief thoughts.

I have heard from colleagues across the UK this week about the sense that social care services and supports, whether delivered in a care home or in a community setting through homecare and supported housing, is most certainly not valued. Otherwise, it is stated we would not be faced with the degree of ‘crisis’ that clearly is the current reality. People talked in their own part of the United Kingdom about social care being seen as the ‘Cinderella’ service, as the after-thought, the last to be considered when budgets are allocated and priorities are determined. There was also a sad consistency in that there was a feeling that social care continually was only seen of value in terms of what it could do for the NHS, to alleviate its pressures and strains, not least in terms of delayed discharge. Yet at the same time there is clearly a failure across the UK despite the policy reality and political rhetoric to both work as an integrated health and care system and to treat each part with the respect, professionalism and regard it is due. It is very much an acute NHS wagging the political dog which barks at social care – and then wonders why the system is not working or responding. As so many people in the world of social care know only too well – if we are every going to solve the crisis of a failing health system it is going to have to involve getting social care providers and organisations around the table – not continually treating them as a problem or issue to be sorted rather than as the solution and answer. The prioritisation of the NHS in the whole system shows little valuing of social care or those who work in that sector.

There is a second way in which this week I was reminded of value and that is the way in which a government or political leadership bestows priority and value upon one economic sector compared to another. It was a delight to hear from the Welsh Government Deputy Minister of the way in which social care in Wales, the role of providers and services, was seen as a core part of their foundation economy model. That is based on work of some age now which argued that social care rather than being seen as a drain and deficit, as a cost and charge, should rather be seen through the lens of contribution and capacity, as an enabler of community and a fosterer of citizenship. The very fact that services and supports exist do not just enable individuals to be personally supported but free family and others to remain economically active and contributive. The latter observation is so critical in a society and at a time which needs all those fit and able to work to be economically contributive and which has a population deficit. Social care is a driver for innovation and entrepreneurship. And yes, I have before lamented about the lack of priority in the Scottish Government’s fiscal strategies in relation to social care – in fact barely a mention and that which does exist sees the sector as a cost not as a driver for economic innovation and contribution. If we were truly to value social care, we would start to recognise the real economic benefit to be achieved by proper investment and prioritisation, not just for those directly impacted but by the wider community. This is perhaps especially the case when we think of community benefit – so many care homes for instance not only employ those who live in the local community, but they buy their food, source their support in terms of maintenance and repair, utilise community assets such as leisure and artists, and so much more. Care providers are a massive contributor to community wealth building, to community benefit and to community cohesion and maintenance. Yet this is so often ignored or overlooked.

Lastly, and perhaps the most visible issue last night was the extent to which society is paying but lip service to the contribution and role of social c are workers in our communities. Yes of course we clapped for carers (albeit begrudgingly) but can we honestly hand on heart say that as individuals and as a collective we consider the contribution of a care to be just as important and valid as that of a teacher, a train driver, a banker or a IT analyst? Because in truth the way we answer that question will evidence what we consider to be the essential requirements of a community built on valuing contribution. Some might say it is false to try to create a hierarchy or equivalence – and in an utopian ideal reality I would agree – but the fact that we pay what we pay, resource allocate what we allocate, fail to meet unmet need for tens of thousands who require care and support, are seeing care organisations going to the wall and collapsing every day – those facts speak to a valuing of social care which is wholly absent and negative. Part of the way you value anyone, or any sector is the extent to which you reward and remunerate those who work in that sector – I have said it before and repeat here that there is a perverse upside-downness of societal value and priority when social care, especially the care of adults and older people, comes into play.

Valuing in applause and sentiment, in word and rhetoric is easy, valuing in reality and reward, in recognition and regard is so much harder.

The American poet Christine Kysely perhaps sums it up well:

What is a person’s value?

What is their worth?

Can it be based solely

On what is found in their empty purse?

 

Can that one missing emptiness…

Take away a person’s pride?

Can it belittle,

The entire worth of their life?

 

Is there some value,

In the light in their eyes?

Is there some value

for the past loves of their life?

 

Is there some value

In the all the books that they’ve read?

The knowledge imparted

The words that they’ve said?

 

Do they get credit

For the beauty they’ve seen,

Painter of paintings,

Dreamer of dreams,

Taker of photographs

Creator of life,

Mother of children,

Lover of life.

 

Lover of wisdom, of knowledge, of men,

Friend to all people, both dark-skinned and light,

Lover of humans,

Meets all with delight.

Lover of all things,

Both known and unseen,

Champion of causes, of persons, ideals,

Believes in the future, values every meal.

 

Is there some value,

To someone who really loves life,

Whose laughter fills each and every day,

In spite of their ongoing strife?

 

To someone who looks to the heavens,

Always amazed,

Someone who has pondered the moon,

And watched it go through its phase.

 

To someone who has held the earth in their hands,

Who has felt the sun on their face,

Who is raising their own children,

Who puts on a brave face.

 

What is the value,

Of one who has financially hit a wall,

Who has often sat here and pondered,

And tried to make sense of it all.

 

What is my Value?

What is my Worth?

Will I be valued solely,

By what is contained in my purse?

 

(c) Copyright 2010 by Christine A Kysely,

 

Donald Macaskill

I’ve spent a lot of time in the past week listening, talking, and reflecting on issues of death, dying and bereavement. The primary reason for this is that the UK Commission on Bereavement launched its final report on Tuesday in Westminster and prior to this I chaired a session at the SNP conference on the topic whilst on Thursday a virtual event brought a huge number of people together to take part in Scotland’s Bereavement Summit and participate in great discussions and sharing.

Regular readers of this blog will know that I have over time written a lot about bereavement and have been very honoured to have served as a Scottish Commissioner on the UK Commission.

The report which was launched on Tuesday is one of the most comprehensive explorations of the nature of bereavement within modern British society not least in the light of the Covid pandemic. It is rooted in the lived experience of many people not least those who gave their time and inspirational insights as members of the Lived Experience Advisory Forum which worked alongside the commissioners. Some of those voices were present at the launch and their shared stories of loss moved and motivated the audience.

The Commission has made numerous recommendations rooted in a robust academic and sociological analysis of what its research had discovered. It strongly articulates the need for society to see bereavement support as a public health issue, avoids pathologising grief but yet articulates the pain and distress experienced by those whom we are failing as a society. I would encourage you to spend some time reading its findings. It is entitled ‘Bereavement is everyone’s business’ which very much sums up its focus. For today I want to reflect on one of its arguments which is of particular personal importance.

The Commission report is the first one of such depth and robustness, both academically and in terms of lived experience, to declare that the right to access adequate and appropriate bereavement support should be recognised as a human right. Again, I have reflected elsewhere why this could become the case legally not least as Scotland seeks to incorporate a right to health within a developing new human rights act. There is I believe a very real opportunity for Scotland to take a pioneering lead here both legislatively and in terms of empowering people’s ability to access bereavement support. I hope it won’t be missed.

But I want to respond to some comment as to what difference such a human right might make in practice.

Human rights are first and foremost about human relationship – our modern articulation of them is not least because of the traumas of the past when difference and distinction became the vehicle for hatred and holocaust. Human rights are there for the best and worst moments of our relating to one another – they are for the ordinary and extraordinary realities of living and loving. There is nothing which is more fused with the relational than the moments of our dying and the experiences of loss and emptiness, of connection and togetherness, of isolation and rejection, of tear and laughter, that encompasses the grief journey of so many. Yet the Commission’s report indicates that for 40% of those who sought support in their grieving that that support was not there for them; it notes that nearly 50% of children and young people did not find adequate support in their place of education, whether school, college or university; it further evidences that a quarter of those who sought support from family did not find solace. So, whether through formal or informal mechanisms we are clearly coming up short in offering and receiving the bereavement support we need to grieve in a manner which attends to our humanity. That may have a lot to do with societal stigma and a contemporary cultural divorce from death and dying, but it clearly is something we must address. A human right to bereavement support based on the right to be healthy and with a holistic concept of wellbeing, would help to root priority in declaring that our bereavement health is as intrinsic to our humanity as any other aspect of health and citizenship.

Such an elevation of priority and value would assist in the ongoing and at times shocking stigmatisation of death and bereavement. The report has shone a light on a shaming reality that so many on the grounds of poverty or knowledge, of race or ethnicity, or age and disability, find it much harder to access the bereavement support they need. The compounding of heartache because of cultural taboos which silence support and comment simply must be challenged. A human right to bereavement support would help to elevate the needs of all to ensure equality of access, fairness in provision and non-discrimination in delivery. We cannot continue to tolerate provision which treats some less favourably and which for many results in not moments or months of psychological hurt but in years of aching dislocation.

It is also important that people recognise that regardless of their circumstance or fortune that when they need support to deal with the loss of someone important to them that such support is there as of a right and most importantly that they can claim that right. The realisation of a human right to bereavement support will take time to reach fulfilment and included in that journey will be increased awareness of what is available, improved access which is appropriate, and an urgently needed societal discourse and debate on the nature of death, dying and bereavement. The silence of death and grief avoidance we so often witness in contemporary culture ill serves those who when faced with death especially sudden and tragic loss have no language with which to speak its pain, no resource and knowledge to understand what is happening, and no-one to turn to as they walk their journey.

Lastly and no less important is that articulating bereavement support as a human right necessitates the requirement to monitor and evaluate progress on the part of public and governmental bodies. Human rights do not exist in a vacuum – there are mechanisms (albeit sometimes inadequate) to ensure that State actors and governments are held to account for policies and behaviours which either act against the fulfilment of a right or progressively help to realise that human right. The recommendations within the UK Commission report are the baseline for the creation of a community and society which roots the human right to bereavement support as a marker of our citizenship. Of necessity this also includes the requirement to identify adequate resource, budget allocation and fiscal priority to ensure that the human right to bereavement support is achieved. This amongst many other reasons is why the UK Commission is calling for at least 0.79 pence to be spent per annum on each bereaved person. Rights are only achievable if appropriate resource is allocated not in the absence of fiscal and budgetary allocation. If we are to change both the nature of and access to bereavement support, to professionalise the response of all including employers and the workforce across so many sectors, then the bereavement support sector can no longer be holding out an annual begging bowl to receive the scraps of budget allocation like some Dickensian orphan but must be seen as a priority sector.

Human rights point to a better future and give agency and purpose to the journey to realise our individual and collective responsibility. This is not just for paid up politicians and policy makers – as the title of the report states – it’s everyone’s business.

The excellent Commission report is a starting point – but change only happens when words come off the page, statutes come down from the shelf, people stand in solidarity and say enough is enough – it is time to change and time to act. The thousands who are bereaved each year and especially those who are struggling with their grief deserve a society which listens to them, hears their pain, responds to their needs and offers adequacy of compassion, care and support. In no little way that is why bereavement support should be seen as an inalienable human right, as important to us as the right to physical or psychological health and wellbeing. The work for such change starts now.

Donald Macaskill

I have written before on many occasions about mental health and older people, about the struggles of those who I have known to navigate the no-man’s land between support as an adult and the gaps in provision they meet when they suddenly become ‘old’; about how an understandable emphasis upon child and adolescent support can sometimes make those older adults with life enduring mental health conditions feel that their lack of priority is because of age, contribution and value.

There are many challenges facing older people and in a time of societal uncertainty, cost of living anxiety and a general economic downturn- it is especially hard for those who have mental health challenges to keep going and to navigate a world of uncertainty and confusion.

Monday 10^th October is World Mental Health Day, set by the World Federation for Mental Health, and it will as it always does provide people with an opportunity to focus on just how significant mental health is for us all. In the shadows of a global pandemic, it can sometimes feel that an emphasis on physiological health has overtaken the importance of holding in balance our focus on both the psychological, emotional and the physical. That’s certainly what John was reflecting to me recently in some of the communication I have been having with him.

John is in his 80s and he has been a user of mental health services for certainly most of his adult life. Recently he has been experiencing some very dark times and it has been hard for those who love him and who attempt to support him to get him on what he would himself describe as ‘an even keel’ rather than drowning in the torrents of his moods and moments. John said to me that the last few months have been very worrying indeed; what with Ukraine, talk of nuclear weapons, the worry about not having money, the fear of the cold, the fact that so many new faces are coming to support him because staff are leaving his homecare organisation – all of it is creating a whirring headache for John and in his words, ‘’It’s stripping hope off my bones.” But what he worries about and says so much is that he believes he needs to stop talking about how he is feeling; that he needs to pretend to be better and healthier than he is.

Sitting as I do on so many talking groups and committees where mental health comes up ever more frequently, I try to hold on to the stories and exchanges I have with people like John. Because it is easy to become desensitised to the very real fear, the cold fear, which some feel with their mental ill health. It is easy to forget that rather than becoming better or more settled, or attuned to managing episodes of mental ill health, that so many as they get older feel drained and simply exhausted and feel they cannot imagine growing older with such feelings and experiences dominating their living and loving. It is easy to forget that the stigma of mental health is still out there for so many folks maybe especially perhaps for an older generation. It is easy to forget that there are too many people who sit in silent pain and in rooms of lonely, abandoned hope because of a conviction that no one wants to hear their story, feel their pain or understand their distress.

So those of us who are able to listen and hear what is said, and see what is shown, and take on board what is felt, on this and every day we need to make sure that in all the noise of our communities that people like John can still feel their words are worthy of being uttered and that a plea for help will not be ignored. If we do that individually and collectively then perhaps, we will make progress as a community of the fragile.

The Scottish poet and biographer J.B.Pick puts this all beautifully in ‘Old Age Blues.’

‘I don’t know what I used to know.

I don’t say that it isn’t so,

I’ve just forgotten. That’s a blow.

When you know nothing, then you go.

 

The world keeps changing, things must grow;

You spend life learning, but it’s slow;

Perhaps my status isn’t quo.

I don’t know what I used to know.

 

Well, I must watch, not let it show,

Greet the morning, say ‘hello’;

When you know nothing, then you go.

I don’t know what I used to know.’

 

From : https://www.scottishpoetrylibrary.org.uk/poem/old-age-blues/

Donald Macaskill