Like many people of my generation, I have always feared or at least been anxious about poverty. Memories of lack rather than emptiness have conditioned me as the first of my family to go to university to always have a desire to look over my shoulder to see the past story of family poverty coming up on the inside lane. Professionally I have seen and witnessed first-hand the demeaning and devastating effects of poverty. It comes in all sorts of sordid shapes; the inability to put food on the table which is nutritious and healthy; the indignity of having to borrow money or get the shopping on the ‘tick’; the rented room with the constant air of damp that infiltrates everything and leads to avoidable asthma; the parents struggling to get the ‘right’ Christmas present for their wee one so that they don’t become the object of bullying on their return to school; the holidays not experienced, the birthday parties not held; the continual drip drip of debt and borrowing; the pensioner whose savings are to bury them and who sits shivering in front of a one bar electric fire to say nothing of all the countless lives drowning in the false illusory escape of alcohol and drugs. I’ve seen them all and I’ve also seen the subtle poverty that might not even call itself such. The poverty that is one of limited ambition and silenced perspective – don’t seek to contribute or achieve because you went to the ‘wrong school’ have the ‘wrong’ accent or simply don’t wear the ‘right’ clothes and conduct yourself in the ‘right’ way. The poverty of “I know where you came from and nothing worthy has ever come from there.” Poverty of opportunity, access and aspiration can and is just as sapping of hope as poverty in its traditional sense.

It has therefore been with a degree of more than self-interest that I’ve been watching the media portrayal of the current cost of living challenges facing our society. I have become concerned and irritated by what I would call the glamorisation or acceptability of poverty and its effects. Now I accept there is and always has been a fine balance between stigmatising poverty and romanticising or validating it.

There is nothing new in this. For every example of modern ‘slum tourism’ there have been antecedents not least with the Victorians who were masters at the hypocrisy of poverty. On the one hand they held guided tours to allow the rich to ogle at the mentally ill of the Bedlam asylum and on the other they tried to address the horrors of child labour in factory and field. They painted paintings of elegiac beauty about Highlanders being cast out into the snow but perpetuated the brutal clearances of people in the name of mutton progress.

More recently social commentators have coined the phrase ‘poverty chic’ as a catchall phrase for the growing cultural tendency of using poverty as a vehicle for inspiration, idea or design. It is a phenomenon most commented upon in relation to American popular culture, but it also has its expressions closer to home. If you are interested in exploring these ideas further, I’d recommend the writing of the blogger Stacy Lee Kong. She has reviewed the hugely popular work of Justin Bieber and his album ‘Hold On’ and argues how it is illustrative of poverty chic. She concludes: (and I would suggest this resonates with some contemporary British song writing):

‘It’s clear what Bieber and his collaborator on these videos, director Colin Tilley, are trying to do here. Their goal is to make some unspecified statement about precarious work, affordable housing, the high cost of healthcare in America and/or poverty in general, which is an admirable desire, I guess. But in practice, these videos feature Bieber and a bunch of other actors pretending to be members of America’s downtrodden in order to tell a love story and to project some sort of nobility and honour onto “simple” lives. There’s no actual engagement with the systemic reasons why hard, dirty jobs are often the only option for young people in North America, or why so many young, and particularly racialized, women don’t have access to healthcare. And okay, maybe that’s a lot to ask of a music video. But without that context, what’s the final message of “Holy,” really? That people experiencing poverty and homelessness can depend on the kindness of strangers? That love overcomes all? These are glib platitudes, not reality.’

Of course, she is absolutely right. The glamorisation of poverty is a perversion of painful reality. When art and fashion curate poverty into a new aesthetic for clothing or interior design; when philosophies and belief systems elevate the poor as being somehow especially worthy or when creativity and genius are portrayed as the fruit of suffering and economic want then we have perversely lost our moral compass.

Bringing things back to the present – what has recently concerned me as along with others I have sought in blogs and in the media to highlight the dangers of energy and cost of living poverty – is the possibility of a new subtle version of poverty chic beginning to appear in our media. At times it smacks to me of the stench of bread and circuses.

So this past while I have begun to read many stories about how we can survive poverty or the challenges ahead. I read a Daily Telegraph story of the benefits of hunger and intermittent fasting appearing on the 16th August. Then the next day I came across a story in the Express about how mouldy food was perfectly okay to eat. Then just a few days ago on the 23rd August the Mirror carried an article entitled ‘I went shopping for Asda’s Just Essentials range and couldn’t believe what £10 got me’ – at least in its text it noted the risk of stigma and impact. Along the same lines we have had some articles stating that waking up with ice on the inside of the windows in winter as you were growing up wasn’t all that bad indeed it was character forming! Delusions which ignore the generations who grew up with respiratory conditions!

What is going on here? Am I being over-sensitive about the sudden growth in articles and commentary which might be arguably said to be asking us to accept the inevitability of less, the reality of restriction, of poorer food quality, greater want and poverty?

The acceptance of poverty as inevitable, the willingness to concede that it is a given that people will die because of an economic down turn or an energy crisis, the collaterising of life is a moral and political trap we would do well to call out and avoid where ever we see it.

Those who are living through and who have known poverty know it is an experience and pain not ultimately worthy of art or creativity, design or aesthetic, but rather demanding of action, solidarity, re-orientation and change. Don’t be deluded into thinking poverty is either romantic, glamorous or inevitable.

The brilliant poet Edwin Morgan who regular readers will know I much admire sums it up well. The air of poverty is one too raw to breathe or glamorise. It robs us and we should not let poverty chic suffocate the air of action and response.

GLASGOW SONNET i

A mean wind wanders through the backcourt trash.

Hackles on puddles rise, old mattresses

puff briefly and subside. Play-fortresses

of brick and bric-a-brac spill out some ash.

Four storeys have no windows left to smash,

but in the fifth a chipped sill buttresses

mother and daughter the last mistresses

of that black block condemned to stand, not crash.

Around them the cracks deepen, the rats crawl.

The kettle whimpers on a crazy hob. Roses of mould grow from ceiling to wall.

The man lies late since he has lost his job,

smokes on one elbow, letting his coughs fall

thinly into an air too poor to rob.

See https://www.scottishpoetrylibrary.org.uk/wp-content/uploads/2018/11/Glasgow-Sonnet-i-by-Edwin-Morgan.pdf?

Donald Macaskill

The following blog is based on a talk given on Monday 15^th August at the inaugural meeting of the GCVS Health and Social Care Network. SeeNetworks – Glasgow Council for the Voluntary Sector (gcvs.org.uk)

I am absolutely delighted and honoured to have been asked to speak at this the launch and opening event of the Glasgow Voluntary Sector Health and Social Care Network. As has been advertised I want to speak about why I think social care is so fundamentally important to both individual citizenship and wider society in Scotland; how the essence of the Feeley Report needs to be upheld and implemented; how a human rights and inclusion perspective needs to be at the heart of social care delivery, and lastly why social care needs to be seen as distinctive from, different to but yet intrinsically complementary to a robust health and wellbeing system.

I suspect that there will be little I say today which will come as novel or new because GCVS and other civil rights infused disability organisations have been stating much the same, championing and campaigning for what I am talking about for decades and decades.

In starting our conversation where better to start than me explaining the title of this talk. ‘Always the Bridesmaid and never the bride.’. First of all, I have to thank Lynn Williams who used the remark in a conversation we were having about the way in which social care seemed to be being ignored and sidelined in so many of the meetings and discussions she and I sometimes share. It felt then and still do now that the title was apt – but then I explored where the phrase came from.

The phrase first originated in a music tune, but it came to huge prominence when the mouthwash brand Listerine in 1924 launched a series of advertisements with the slogan “Often a bridesmaid, never a bride”. These ads portrayed a forlorn woman by the name ‘Edna’ or ‘Eleanor,’   who was unlucky in love and for reasons unknown to herself and was never being able to find love and settle down. The manufacturers marketed the mouthwash by insinuating that everyone around her, even her friends knew the real reason for her lack of success- Halitosis (bad breath). But since it’s an embarrassing subject to bring up, they wouldn’t tell her. This line of advertising sold millions of bottles of mouthwash increasing the company’s sales from $100,000 in 1921 to over $4,000,000 in 1927.

It just goes to show how a phrase can have such a power to convey a message – and whilst the way we use it today is significantly divorced from taking fun out of someone – it has a sense of never being the centre, the focus, special and valued – always playing runner up or the forgotten one. Never getting the main focus and prize. So is that really the case for social care in Scotland in 2022 – you bet it is!

But what is it I am meaning when I talk about social care. After all definitions are important and I am so often in meetings and at events – not least with those who comment about the sector but do not work in it or use its services and support – when they think they know what they are talking about but evidentially it soon becomes clear they do not – and yes that especially includes our politicians and media.

The common misunderstanding is that social care is a series of services which are done to and for a person. It is the tasks and functions that help someone or support them. In fact, in a lot of the recent debate – not least on the National Care Service – the word social has dropped out completely – we are to have Care Boards – but I want to argue that care is not the same as social care and social care is more than simply care (especially if that care is narrowly understood and defined)

I am quite sure if we did a straw poll of what social care was for most of this audience it would not primarily be about services, and tasks and functions – but would be much broader.

For me social care is about connection and relationship, about belonging and being, independence and community. It is for me something which is profoundly about enabling people to be and become fully human to realise their potential and to flourish until the last gasps of living and loving.

There are loads of definitions of social care – the one I often use is this one – it has a forward dynamic – it is not about doing to or for – but enabling, empowering, – it is not about bringing order into the messiness of living but allowing that life to mess up the order and bring creativity, vibrancy, energy, and vitality to life.

‘The enabling of those who require support or care to achieve their full citizenship as independent and autonomous individuals. It involves the fostering of contribution, the achievement of potential, the nurturing of belonging to enable the individual person to flourish.’

That is why social care is so important – it is social – it is connectedness, citizenship, discovering abilities and celebrating diversity. We need to re-discover the social in social care – and tell policy makers and politicians to take their hands off something which will long outlive them and of which they know not.

Social care is therefore for me a human rights issue and a human right in itself.

More of that in a minute – but one of the problems in the ‘Always a bridesmaid’ scenario is that people – even those who should – simply do not recognise and value the massive role and contribution which social care is making every day to our society.

The work of many not least the SSSC has highlighted the economic benefit of social care to the Scottish economy – but that is often lost – even our latest national plan for economy and business Does NOT mention social care -a shocking dereliction of ability and priority and an even greater marginalising of the value of the sector.

Even just last year another report – this time commissioned by Enable showed that far from being a burden on public finances, the sector contributes more than £5.1 billion Gross Value Added (GVA) to the country’s economy and supports some 300,000 jobs.

That report demonstrated that social care’s direct economic impact is more than £3.3bn GVA and its indirect economic impact, through supply chains and supporting industries, contributes £800 million. The impact of the sector from employees spending their wages generates £1.1bn.

So, given all this – and the shocking failure of our economic leaders to recognise social care and its prospect as an economic driver and contributor – much more than many other valued sectors – what is going on here you might well ask? … you could ask a lot about why it is that social care is marginalised – always the bridesmaid and never the bride –

… but I hardly need to articulate the reasons to this audience – is it not the same reasons which in ancient times saw the ban on anything other than perfection in Greco-Roman sculpture and art? Is it not the same attitudes and reasons which saw throughout history the diminishing of those who were different because of disability, mental health challenges or health needs – a diminishment which still goes on to this very day? Is it not the age-old desire to have disability – out of sight and out of mind – shut off from the mainstream, prioritised as other? Is it not the same source of behaviour which has created a cult of youth and beauty and which even today dismisses older age as having had its day, finished its contribution, not worthy of voice or listening to? Is it not the same attitudes which have never treated dementia as a disease of equal health impact such as cancer or diabetes because primarily it impacts upon the lives of women and of those who are old.

The answer is of course discrimination and inequality, the othering of those who we can label, the dismissing of value and voice, of contribution and importance. It is as old as the heavens and as perverse as it has always been.

That is why we who use, access, work in and are involved in social care supports have to find a voice to challenge the status quo – to say enough is enough – we will not be marginalised or silenced – this is our lives and livelihoods – if we change and do things better, seek to be better, to reshape and reform then we can do so much better; we can then celebrate social care as an essential component to civic life and Scotland.

Now both those elements – a broad inclusive definition of social care and a sense that social care had the potential to be an economic driver and contributor to the whole economy can be found richly running through the Feeley Report

I have to confess to something of a Damascus Road conversion to the work of the IRASC – I was a cautious critic at the start because I thought that the task Derek and others were set was impossible to achieve within the time frame given and that they would not fully and properly engage and consult and involve in anything other than a tokenistic manner. It is to the immense credit of Derek Feeley and the whole tram that what resulted was such a dramatically positive and at times visionary report.  It was a report set at a particular time, but which managed to capture the spirit of the hour, to offer pragmatic solution and to describe reality warts and all.

The problem is that today or at least for me the Feeley report feels like a dream slowly disappearing into the distance, having been touched by the cold abnorming of political reality and opportunistic pragmatism.

Feeley rightly emphasised the contributive economic and societal nature of a social care system which worked well and enabled the flourishing of all within community. He rightly addressed the implementation gap – or for me the chasm between aspiration and the legislative potential of things such as Self-directed Support which could and should and can still be transformative and revolutionary – he described in words of your making and shaping the practice reality for people who receive care support. Why is it that everything feels like a battle and grind to achieve what should be the right of those who are supported?

This is not the place to go into detail on the NCS – but oh I groan at the gap between vision and reality, between energy of Feeley and the lethargic texts and framing we are now presented with. There is such a slew of despond when by a thousand deaths of bureaucratic implementation, the whisper of originality and the spark of excitement is silenced and snuffed out.

There is still time to shape and influence to try to keep the jewel at the heart and not just create a mini-NHS with the failings its parents are unwilling or unable to recognize such is the adoration of the original.

But you see I am more and more convinced that social care is too important to be left to the politicians and professional policy makers. Indeed, social care is more than the National Care Service – it is more than a service or system, a model or framework – it is about lives and people, about dreams and relationships, about freeing the person to become and the community to flourish – the NCS may enable that, but social care is much much more …

Social care cannot be left to be the plaything of politician and commentator, the disinterested only thinking about a vote or a story, or a sale or a system-  It is ours – those who use and have used, those who are family and informal carers, the frontline workforce in projects and care home, homecare and addiction services, mental health recovery and day services – and so many other places where the SOCIAL matters and takes place and shape.

It is not time to be silent during consultation; it is time to press upon our elected representatives that they cannot get away with half-baked, half costed and half resourced plans and ideas – this is our life, and it will shape our future community – we cannot get it wrong.

The title of this talk is ‘Always the bridesmaid never the bride’ – it is time for social care to take centerstage – not as the bridesmaid to the NHS bride, not as the handmaiden, the Cinderella, the forgotten one, the one who gets the crumbs from the NHS table. We must call out the lazy political speak and mantra which sees the world through NHS eyes, which perceives the need of social care by its impact on the NHS – such as classically the debate about delayed discharge. Such myopic obsession with the NHS is damaging, dangerous and obscenely short-sighted.

Living well in community, independent and with a life that is flourishing is just as important and worthy of resource, political attention, and popular valuing, as the emergency and acute and dramatic success of hospital, GP, nurse, and clinical professional.  They are symbiotic partners of a whole fount of wellbeing.

It is the people on this call and beyond who have the power to advance, to rescue and to advocate for social care support. It is time to make the system human rather than transactional. We cannot continue to have a system which is built around the cult of maintenance – keep people as they are, where they are, who they are – that is the complete opposite of social care which is about enabling the person to change and grow, to flourish and renew, to adventure and discover. Independence is too important for it to become a matter of constitutional debate – independence is first and foremost, most, and best – the enabling of a person to be who they are and to grow to their full potential often in relationship to others.

For me we have a very real potential to rescue the human at the heart of social care – to nourish the social within services and to discover the breadth and depth of a mature modern social care world. That potential is rooted in recognising that social care is, as I stated above, a profound human rights issue.

I have written – at some length – about why I think we need to seize the opportunity of Scotland creating a Human Rights Act – and to become the first nation to explicitly describe what the rights are engaged when we seek to incorporate the International Covenant on Economic involved in the Economic, Social and Cultural Rights into Scottish law – now I know the right to health is critical within that.  But I want us to go further and to make explicit – even with the likelihood of progressive realisation – the human right to palliative care, the human right to bereavement support and explicitly and most fundamentally the human right to social care.

The right to health has been interpreted more than just the right to physical and physiological health – in case law it has included emotional and psychological health, but I really hope we can go broader than a loose definition of wellbeing to say that social care – regardless of age – is distinctive, it enables the fulness of life and the achievement of other fundamental human rights and without it being protected as a distinct right then others are diminished. Social care is a human right – it is my right to flourish and thrive, to be independent, to have voice – this is not about attending to my health needs but meeting my social care needs. And in that sense social care can only be judged as a human right realised through the United Nations human right test principles of availability, accessibility, acceptability, quality, participation, and accountability

It is not enough to have a new National Social Care Service, or another set of legal obligations, you become the bride when you are treated as valued and wanted, centre-stage in economic and societal priority, considered as worthy of focus and attention, adequately resourced and prioritised, and for me social care to be human has to be seen as a human right with all the protection that affords, not just a bridesmaid to the NHS bride.

Last week I wrote in my blog about the potentially devastating impact of energy cost increases on the care home and homecare sector in Scotland. In response to that several people got in touch to say that there was a dimension of the cost of living and energy increases that was rarely talked about in the mainstream media – namely the impact on older people who live on their own and on their health and wellbeing.

One correspondent put it fairly bluntly when she wrote:

“I feel as if what is happening around me is something over which I have no control. I am on a fixed pension which was a struggle at the best of times but allowed me if I saved to get some things for the grandkids. Now I am either going to have to cut off the heating for most of the winter or not be able to give my grandchildren what I want to. I am going to have to choose between love and heat.”

Despite my attempt to reassure and suggest what I think is a priority and which her grandchildren would consider a priority – i.e., to heat and be warm – I am ashamed that in 2022 an older woman who has given so much to her community and society, and to her family should be having to contemplate making such a decision.

But her choice describes the situation for countless thousands across Scotland today. Unlike those in work who can argue for an increase in their salaries to match the spiralling inflationary costs; or who can potentially work more in order to bridge the gaps – the vast majority of older Scots are on fixed incomes and pensions which at the moment are restricted. They are in a very real and costly Catch 22. The consequences of some of the choices they are making now and will make in the autumn and winter are devastating and, in some instances, might be deadly.

Professor Linda Bauld,  a leading academic at Edinburgh University and who has become a familiar face during Covid, yesterday appeared in the Herald saying that the steep increases in prices could spark a public health emergency with a rise in deaths.

She is quoted saying:

“We know from history that when people lack access to basic resources including energy and food there are health implications… Cold, damp housing exacerbates respiratory conditions for adults and children and results in worsening of symptoms for a range of chronic conditions.

“Not having enough money for transport means people can’t travel to appointments with health services or to collect prescriptions.”

There is nothing new in this reality, nothing new in the fact that older people are more vulnerable to winter deaths because of rising respiratory conditions; nothing new in the fact that more heart attacks occur after a cold spell and nothing new in the poverty faced by older Scots. What does not seem to be new is any political response regardless of where that might come from.

That is not to dismiss some of the interventions which have occurred, and I would encourage anyone who knows any older person to be aware that we are in the last week of being able to apply for additional assistance. People living on a low State Pension should check their eligibility for Pension Credit and apply ahead of next week’s cut off point on Thursday as it could mean an extra £650 of financial support which could help with rising energy bills. There are more details available from Age Scotland and others. But sadly, I suspect all the interventions to date will not prevent the major health emergency we are about to face as a whole society – unless action is taken  and all this said in a week evidencing yet more massive energy producer profits.

In an earlier study from Age UK it was stated that 220,000 older households in Scotland will have insufficient income to cover their essential spending this year. They estimate that the poorest older households in Scotland will need to drastically up the percentage of their net income spent on essential goods and services from 70% in 2021-22 to 87% in 2022-23 due to higher costs of living.

Every day we seem to be hearing yet more negative news with little action or comment from both the Scottish and UK Governments. It is one thing to respond to an emergency and have fault lines found in the response, it is quite another to walk into a nightmare fully awake and to fail to take action which could save lives.

Therefore, it is not only our care homes and homecare services which risk collapse and which will result in inevitable deaths in the coming weeks and months, but people at home on their own over the next few months who will be asked to make life and death decisions, and for many the wrong choice will inevitably follow, and for countless others there will be no choice at all.

Donald Macaskill

I was in London this past week and had a couple of hours to spare between meetings and on the recommendation of a colleague I found my way to the Design Museum in Kensington. The building itself and its displays are well worth a visit – not least as the air conditioning is fantastic in a city with 30-degree heat even when I was there! But I was there specifically to see an exhibition curated by the Design Age Institute in collaboration with the Design Museum, The Future of Ageing, which explores ‘how design is transforming the way society can support everyone to age with greater agency and joy.’

I have written quite a few times in this blog and elsewhere about how we need as a whole society to reconceive the way in which we design the built environment to better include and accommodate the needs of an ageing population. Specifically, I have suggested that we need to stop building aged care facilities separate and apart from the communities in which people  actually live. I have remarked about how ridiculous it seems to me that so many of our housing developments are inaccessible to the needs of a population which will become the dominant group within the foreseeable future. I cannot remember the last time I was in a modern built housing estate which had an adequate mix of bungalows or at least accessible accommodation.

The Future of Ageing exhibition was interesting, less from the perspective, that it was coming up with starkly original designs or suggestions but more from the fact that it argued about the urgent criticality that the whole design community, from technology and robotics, from townscape to rural environmental planning, from kitchenalia to social media, have all to seriously start accommodating the needs of a population who will soon be its majority customers and consumers. In so doing designers have to involve older people in the design process and have to stop treating older people as a homogenous group as if older age is bereft of difference and diversity.

The exhibition highlighted an often-ignored reality that although by 2040 more than a quarter of the UK’s population will be over the age of 60 what is less well known is the fact that over 70% of that ageing population will not be needing support or assistance in normal and daily tasks and activities. Those of us working in social care have a narrowed perspective for obvious reasons, but it is true today and hopefully even more the case tomorrow that the vast majority of older people will not need care and support until a very late stage in life if ever. Yet as a society we continue to view older age so negatively, as a deficit and as something which limits ability perhaps especially in the world of design. As the exhibition declares it is time to put some joy back into ageing which was put succinctly by one contributor in a short and incisive video when he declared “Don’t let people with no abracadabra stop you from making magic!”

‘The Future of Ageing display celebrates how design can help us reimagine products, services and environments to enhance our experience of living in later life with a selection of prototypes, sketches and research from projects that are being developed by Design Age Institute and its partners.’

One of the prototypes I enjoyed the most was ‘The Centaur’ – a self-balancing, two-wheeled personal electric vehicle for people with difficulties getting around. Its inspiration and designer is Paul Campbell from Centaur Robotics who asserts that “I want to end the social isolation resulting from reduced mobility and I believe good design can do that.” The Centaur is designed for the world as it is – it can fit through normal-sized doorways, under desks and tables, and gives a significant degree of autonomy to the person who uses it.

There were several insights within this exhibition but the one that left a mark on me was the statement that we should stop seeing the world around us as one we need to change in order for people to fit in but that we should enable people as they are to better fit into the world as it changes. The argument of the past that it is the environment that ‘disables’ and so we must change it to enable inclusion, is put aside by the assertion that we must equip those who are ageing to enable them to better use the world, adapt to their environments as they find them, rather than to seek to change the world around us. I personally think the issue is a both/and but I cannot deny the practical insight of someone like Patricia Moore who is an industrial designer, when she asserts, “Stop designing for disability and start designing for usability.”

From ‘Gita’ – a hands-free cargo-carrying robot, the ‘Home Office to Age in Place’ – created to integrate flexible living and working space for later life, and ‘Hearing Birdsong’ – a digital ‘audioscape’ app that uses the sound of birdsong to engage visitors with their hearing health there is a lot to see in this small exhibition but all the designs have one thing in common and that is they perceive age as a positive source of inspiration and enjoyment, rather than something to be ignored and excluded.

But the challenge for us all is to look beyond the stereotype and presumption and to re-design the world around us so that it becomes truly inclusive, as one participant said of age in general: “It’s not the way you look  it’s your outlook that matters.” For after all as the hashtag of the event declared #WeAreAllAgeing

Donald Macaskill

It is eleven years ago today that the ultra-talented Amy Winehouse died from alcohol poisoning at the age of 27. She is best remembered for her famous songs’ ‘Rehab’ and ‘Stronger Than me.’ I first saw Amy on the Jools Holland Show early in her career and could immediately recognise a talent which went beyond mere ordinariness or description.

Amy Winehouse did not have an easy life with periods of drug and alcohol addiction, mental health and relationship challenges. Her album ‘Back to Back’ became the UK’s bestselling album of the 21st century albeit for a short time.

I have been thinking a lot about Amy this week partly because of her music but more directly because of her story and the grief and loss that results in those left behind following such a traumatic and sad death.

In my own personal and professional life, I have witnessed first-hand the raw reality of the way in which alcohol and drugs can change a person and devastate a family. The death of a loved one to addiction empties a person like nothing else and so often that emptiness is filled with questions and guilt, with a sense of ‘if only’ and of regret, and with a continual self-examination as to whether you could or should have done more.

I have always admired the work of Scottish Families Affected by Alcohol and Drugs. https://www.sfad.org.uk . I was therefore very pleased this week to have had the chance to meet a colleague from that organisation. They do a wide range of work including a focus on bereavement support and most of it is undertaken at local level. When someone in your family is affected by alcohol or drugs one of the main things you feel is a sense of isolation and aloneness and the way in which SFAD and others can help connect you to others, to limit the isolation, to support through mutual understanding and connection becomes invaluable.

My primary reason for speaking with SFAD this past week was to form links between their bereavement work and the work of Scotland’s National Bereavement Charter. The Charter, whose organising group, I am honoured to chair, is growing from strength to strength with new resources being developed all the time to help anyone across Scotland be better supported in their grief and loss. The aim of the Charter is to ensure that anyone who requires support and care following a bereavement is able to access that and that Scotland becomes a world leader in a human rights-based approach to grief and bereavement. Those who lose loved ones through drug and alcohol deaths have an especially hard journey of grief and loss and it will be a mark of the Charter’s progress as to whether or not we are able to make their journey any easier.

One critical dimension experienced by so many who experience the death of someone to alcohol and drugs is the societal stigma that often accompanies such a death. Someone once described this to me as ‘furtive grieving’, her felt sense of having to hide the cause and reason for the death of her son to a heroin overdose because she felt that others would dismiss both him but also her pain, grief and loss as somehow ‘self-inflicted.’  She told me it took a long time for her to stop saying her young son died of a heart attack and to be open about the reasons for his death and that that openness helped her in her grieving.

In a heart-felt plea in the media this week, David Strang, the chair of the Scottish Drugs Deaths Taskforce spoke about the newly published “Changing Lives” report which makes 20 recommendations and 139 action points that it says will help turn around Scotland’s record drug death numbers. The shocking and sad statistical truth is that in 2020, 1,339 people died as a result of a drug overdose. The report calls for the creation of a national stigma action plan because of the reality that societal stigma and discrimination results in not just personal and family trauma but in unnecessary death. When deaths do happen, that stigma continues to re-enforce discrimination and makes grieving and bereavement all the harder and more painful.

Grief shrinks you. It makes a person small in their body. It shrivels up hope and dreams. It’s emptiness echoes with a silence no sound could ever soothe. Grieving the loss of a loved one to drugs and alcohol makes many feel like they need to hide their grief and so makes bereavement unnecessarily traumatic. We desperately need to transform cultural and societal attitudes to alcohol and drugs not only so that lives can be saved but also that when loss does happen grief can be freed from the shackles of societal disapproval and discrimination. The tragic legacy of someone like Amy Winehouse should be not only her amazing music but an urgent need to end the stigma around all drugs and alcohol deaths, to encourage society to start a mature debate on all the issues without the stance of moral superiority that often occurs, and importantly by so doing to let loved ones who grieve be able to make that journey in openness without societal stigma.

Donald Macaskill

Summertime is often the time of year that I manage to do some reading separated from the normal rhythm of work issues. Over the last couple of weeks in amongst the usual whodunnits and attempts to see merit in ‘bestseller’ lists, I have also been re-visiting some thoughts and texts which I had put aside for that elusive ‘quieter time.’ In that vein I have been exploring some writings around the concept of ‘generosity’ especially as it relates to social care.

Generosity is often dismissed as an old-fashioned concept but I’m very much of the opposite view believing that generosity as a concept needs to be more embedded in our individual and societal discourse. In fact, the last week busy as it has been with political intrigue and debate has struck me as one that would have benefited greatly from a bit more generosity of spirit and action. But more significantly having had the privilege of witnessing so many acts of compassion and care over the years at the hands of both paid and unpaid carers I am convinced that generosity is wired into humanity but also that it needs to be cultivated, nurtured, and promoted.

The dictionary defines ‘generosity’ as ‘the quality of being kind and a willingness to share.’ Many psychologists have argued that by inherent and instinctive nature people are generous, that they act in ways which seek to better another and to benefit those around them. They have stated that the innate predisposition of children at an early age is not to be selfish and narcissistic but to help others. What is more there is an abundance of research evidence which shows that being generous to others is of psychological and emotional benefit to ourselves:

“A growing body of research has revealed numerous psychological and physiological benefits of giving, challenging common conceptions about the relationship between money and happiness. In 2008, for example, Norton and his colleagues conducted a study where they gave $5 or $20 to people and then instructed them to spend it either on themselves or someone else.

Later that evening, the researchers checked in with the participants to see how they felt emotionally. The group that gave money to others reported feeling happier over the course of the day. What’s more, the results showed no emotional difference between people who received $5 and those who got $20. “  (from How generosity changes your brain – Big Think )

The act of giving is something which might indeed come easier to some than others but it is clearly at the core of social care and support. Being generous with one’s time and skills, with knowledge and ability are a tremendous expression of mutuality with another, especially perhaps someone to whom one is not linked to in any other way than through work and professional role. But the real dynamic of generosity which is at the heart of care support and indeed all of social care is the generosity of individual humanity. When you support or care for another you give of your self – there is a dynamic exchange which alters you. You are and become a different person when you support and care for another. I am not denying that there is a cost to care and an element sometimes of sacrifice, hurt and pain in the compassion and support given, but in most instances the person caring is changed in a  way that helps to fulfil their humanity.

I personally think this generous essence of care is what makes care support a unique profession and role. Over the years when I have met and talked to people about the jobs which they do in social care they have often used phrases such as “It makes me feel better,” or “I get such a buzz out of giving to others.” This is generosity in action, an act and way of being with others which changes the recipient but equally which changes the care giver.

Our society would benefit a great deal from such a spirit of generosity in all our interactions and exchanges, and it would be changed were we to recognise that we need to do more to value and reward those whose essential roles are to be generous to others.

All this is wonderfully captured in ‘When Giving Is All We Have’ by the contemporary American poet Alberto Ríos.

When Giving Is All We Have.

One river gives

Its journey to the next.

We give because someone gave to us.

We give because nobody gave to us.

We give because giving has changed us.

We give because giving could have changed us.

We have been better for it,

We have been wounded by it—

Giving has many faces: It is loud and quiet,

Big, though small, diamond in wood-nails.

Its story is old, the plot worn and the pages too,

But we read this book, anyway, over and again:

Giving is, first and every time, hand to hand,

Mine to yours, yours to mine.

You gave me blue and I gave you yellow.

Together we are simple green. You gave me

What you did not have, and I gave you

What I had to give—together, we made

Something greater from the difference.

https://poets.org/poem/when-giving-all-we-have

Donald Macaskill

I well remember how much effort was put into the planning of the birth of a new child and its arrival into the world. So many hours making sure the right clothes were bought, the cot was built properly, care seats fitted and tried, the pram was ready and so on. And then the actual birth – the planning process around birth is unrecognisable today compared to the experience any woman might have had in the 1960s or 70s.

Childbirth and early years must equate to one of the most planned and prepared for moments of our lives. That sense of planning continues to a lesser degree as we go through life and grow up. Whether it is our education and career choices, our university or college, our vocation or job, then through the various stages of relationships and partnerships, our first flat or home, a marriage or engagement – there seems to be no limit to the times to plan, schedule and prepare. Then we get older, and we age. And the planning seems to diminish if not entirely disappear.

Perhaps it is the demise of the life-long career or the ending of the statutory retirement age or the unpredictability of modern pensions, but it strikes me despite all the pressure and focus, the encouragement and emphasis, that fewer and fewer people prepare for post work life or for older age in general.

The positivity of human demography in Scotland is that most of us will live longer than our forebears and our children and grandchildren will live even longer. The challenge is few of us do so with an abundance of good health.

We are now into the second year of the United Nations Decade of Healthy Ageing and I am increasingly of the view that the way we today view ageing is anything but positive and healthy. In fact to some degree, I think the pandemic and our response to it internationally as well as in the UK has put us back years in terms of challenging age discrimination and the valuing of older age in particular.

The Decade (2021-2030) aims to be:

‘a global collaboration, aligned with the last ten years of the Sustainable Development Goals, that brings together governments, civil society, international agencies, professionals, academia, the media, and the private sector to improve the lives of older people, their families, and the communities in which they live.

Populations around the world are ageing at a faster pace than in the past and this demographic transition will have an impact on almost all aspects of society. Already, there are more than 1 billion people aged 60 years or older, with most living in low- and middle-income countries. Many do not have access to even the basic resources necessary for a life of meaning and of dignity. Many others confront multiple barriers that prevent their full participation in society.

The COVID-19 pandemic has highlighted the seriousness of existing gaps in policies, systems and services. A decade of concerted global action on healthy ageing is urgently needed to ensure that older people can fulfil their potential in dignity and equality and in a healthy environment.’

The Decade has four focus or priority areas for action, namely age friendly environments; combatting ageism; integrated care and long-term care.

I was reflecting recently on the relative lack of progress in terms of the Decade with some colleagues and on the growth of what I consider to be even more ageist attitudes in the last few years as we responded to a recent consultation on healthcare and older people. In particular the consultation asked for perspectives on the role and value of what is called ‘Anticipatory Care Planning.’ These are plans often prepared with an older person post diagnosis of a serious illness like dementia and cancer. They come in various formats but consist of a description of choices and desires around deteriorating health and potential loss of capacity and personal control.

I think there are emerging views that the negative experience of some people with DNACPRs during the pandemic has made the work of developing ACPs harder. But apart from the unhelpful association with negative pandemic practice I think one of the basic needs is that we as a whole society need to re conceptualise our planning into and for later life, for ageing in general and to develop and nurture much more positivity than we currently possess for older age.

Work needs to be undertaken to ensure that planning is part and parcel of later life and ageing and that maybe even the term anticipatory care plan is one that we need to ditch. Planning for later life does not need to be about planning for decline and deterioration or for the inevitability of care and support. Why instead should we not broaden out planning for later life away from the narrow confines of health and social care? Why should we all rather not be encouraged and resourced to create a Later Life Plan, or an Ageing Plan?

Now I immediately recognise that for so many of my fellow citizens this seems illusory or even a waste. There are, I fully acknowledge countless thousands who simply do not have the capacity or resource to ‘plan’ for their future, so busy are they with simply continuing to exist and meet the basic human needs. Such poverty in older age should shame us but should equally be an incentive to ensure that whole life planning becomes fully inclusive of older age.

I think as part of this we urgently need to reform the way in which pensions and support in later life is offered, including the inequities of funding for some parts of social care and health and not others. We cannot achieve the laudable aims of the Decade of Healthy Ageing without seriously addressing the structural and systemic issues which fail to prevent ill health, mitigate against measures to protect, and which disable our ability to address the diseases of older age, not least mental health, and wellbeing. We need, I would suggest, a radical non-partisan and politically independent commission on older age across our society to meet the Decade’s aims and aspirations. Instead, we have piece meal strategies which regurgitate promises and past policy without venturing into new ground and possibility.

We need to both individually and collectively plan for the future of ageing as a positive prospect and possibility rather than to react to ageing as something accidental or by  happenstance. Only when we individually and societally start to plan and resource positive ageing will we achieve both healthy and holistic older age. Let us put as much focus in later age as we do in preparing for birth and new beginnings.

Donald Macaskill

The following is based on a contribution to the inaugural session of the Human Rights and Social Care Forum created by Dr Caroline Green, Kings College London, which was held virtually last Tuesday.

If not here, where?

The recent past has cut itself into our hearts like a sore wound. There will be other opportunities to more fully reflect on the wider and detailed lessons of what the last two and half years mean for our society, for the way in which we value older age and in particular dementia as well as the relative priority we give to the resourcing and recognition of social care and its workforce. There will be time to reflect on what I have elsewhere described as the conscious and unconscious inappropriate limitations of human rights – not on all occasions but at some specific times and moments.

It has been a time of hard harrowing and a winnowing of our hopes.

But I want to look both forward and back in the space I have been given, not least as I strongly believe that the legacy of such pain and terrible grief should be healing and if required deliberate and focussed action and purpose. If we do not plot our future we are much more likely to navigate into trouble and trauma.

I have a fundamental question to ask this afternoon about human rights in care homes and indeed elsewhere. The question I think we have to ask and answer is –

How do you enable someone to ‘realise, fulfil and flourish in their human rights, to be treated with equality and in a manner that recognises their unique dignity, and which fosters their sense of independence and identity?

There will be numerous responses and answers to that but for me it has to be about a rediscovery of the individual as the central focus of the human rights response.

We need to rediscover an individualised and personalised approach to human rights.

The reason I am saying rediscover is that the pandemic has shone a cruel light on the way in which we have collectivised our response to human rights to a cost of very real pain and loss.

At heart we have – and by we –  I mean society in general, politicians in particular, clinicians and epidemiologists, and those who provide care and support services – we have failed to treat individuals as unique and distinct and not part of a collective – our whole emphasis has been on keeping everyone safe rather than letting the citizen decide and lead.

Now doubtless some might hear these words as a utopian illusion and that in a critical situation of unparalleled threat it was necessary to a degree to sublimate the wishes of the individual and to focus on what would bring fastest remedy, safety, and security. There is much truth in such an assertion. If you are in a capsizing boat then it is often desirable to have strong, directive almost dictatorial leadership, from someone who knows how to rescue the situation – quite literally. But that appeal to emergency and urgency, the vestige of defence from hindsight and a lack of knowledge in the moment, can become a casual excuse for failing to act in an emergency or crisis in a manner which upholds individual rights and yet still protects the majority and fulfils the desire for response and safety.

I am not suggesting that every piece of clinical guidance during Covid should have gone out for extensive consultation, that the only way to uphold rights is to act in a manner which delays response, but I am saying that the presumption that you do minimum engagement, and that you develop guidance and introduce intervention without involvement is an erroneous and dangerous approach. The individual resident, family member or staff members and manager are the experts in the care home environment.

Moving forward I do not think ever again in pandemic response – oh and in passing was there ever a human rights impact assessment undertaken on the pandemic planning processes? (which were themselves wholly inadequate and lacking inclusiveness) – I sometimes doubt it.

Moving forward – there cannot be again a one size fits all approach to pandemic response. For me this was critically illustrated by the approaches to public health and especially to infection, prevention and control measures. In the early days there was a failure to properly contextualise approaches for preventing infection which may have been appropriate and attainable in an infectious disease hospital within an acute health environment but which paid all but lip service to the environmental dynamic of a care home, to the fact that this was primarily someone’s home where they lived not where they were treated or cared for, and to the critical importance of attachment, association, or simply plain love, being with family and having contact, routine, ritual and a diversity of experience. It was – and to a considerable degree – still is a process of IPC which puts the collective, the environment before the individual and the person. We can, must and should do better not just in any future Covid outbreaks but in facing any future risk from an infectious disease.

But how can we protect the individual rights of the person who lives in a collective or group dynamic such as a care home?

This was before the pandemic the central question often ignored, during it was a continual cause of pain and upset, and now and into the future I think is the singular most important question.

Passing laws is one good and necessary step – and in Scotland the changes to the Health and Care Standards enabling a right to visit during outbreaks, and the incorporation of Anne’s Law into the new National Care Service which is being developed – both are positive steps – but let us be honest – we had wider human rights law at the start of the pandemic but a systemic failure to utilise, respond and to adhere to these. Law is necessary but not sufficient.

I am convinced what would make the difference is if all involved become confident around the embedding of human rights in aged care – not just aware – but confident. That can only come through increasing knowledge and awareness of what a human rights-based approach is not just on paper, in theory and text, but in practice, in daily care home life, in the dynamic of relationships.

And that of course is the heart of all this – human rights are about relationships not texts or codicils – their origin in the modern context following the horrors of the Second World War – was to put right the relationship between peoples but much more importantly to begin to reframe and understand again the rights of the individual in a time of crisis, in a community of difference, and in a society where you may not feel that you belong.

Recently I have been spending some time reading the writings and works of Eleanor Roosevelt who was such an inspirational leader at the time of the development of the UN Charter in 1948, and who later President Truman described as the First Lady of the World.

Her words are famous – perhaps the most famous is her sentiment that unless human rights happen in the small places, the ordinary interactions, the mundaneness of human living then they mean nothing. She said:

“Where, after all, do universal human rights begin? In small places, close to home – so close and so small that they cannot be seen on any maps of the world. Yet they are the world of the individual person; the neighborhood he lives in; the school or college he attends; the factory, farm, or office where he works. Such are the places where every man, woman, and child seeks equal justice, equal opportunity, equal dignity without discrimination. Unless these rights have meaning there, they have little meaning anywhere.”

But in other writings and this is why I think her words need to resonate today for care homes, residents, staff and others she wrote about how important it was that we did not so collectivise human rights ; not just to focus on what they mean for a country, a nation, a group, but that we always understood that we need to start with the individual and what human rights means for the person.

Signing up to the latest Charter, embedding a covenant in national law, proclaiming you uphold human rights and are a human rights nation means nothing unless it means something to the individual person.

That is why I think we have a real task in care homes. Because like it or not a care home can indeed become a homely place, but it is not identical to one’s own home, because in your own home – by in large – you have choice and control over who you live with, who is your company, who shares your space and place. A care home is inevitably a place of congregated living and exchange, a place where we might get on with the majority, but there might be some we would rather not spend time with.

How then do you do human rights in such a place? How do you as a manager deal with someone quite rightly asserting their Article 8 rights to family life and wanting family to be present but at the same time deal with someone else who for whatever reason, perhaps fear and anxiety, are not wanting you the manager to allow anyone in to visit during an infectious outbreak. Ask any manager and she or he will say – this is the stuff, the mess of ordinary living.

If we take a scenario outwith the pandemic – how do you manage competing interests in terms of activity, or leisure; disagreements over relationships and friendships, disputes in regard to all the other choices which we are asked to make in care home and collective living life?

We have I believe to find a way to restore the individual in human rights in general, and specifically within aged care facilities. But I do think that there is a potential for a human rights-based approach developed in a care home environment to be able to speak to the wider and more general question of balancing the individual and the collective.

Long before the pandemic the Scottish Human Rights Commission developed a project I was proud to be associated with. It was the Care About Rights work and it sought in all social care settings to embed a process of conciliation and decision-making where human rights, equality and inclusion were held in creative tension. It centred around a decision-making process called the FAIR model and I would commend it to you.

It is not easy – it has to do with the mess of living and loving; it will not always work but it provides a framework for talking and action, for reflecting and relating.

We are all diverse and different and in that is the glory of humanity. Care homes at their best are about enabling the flourishing of individual life first and foremost and through that the enabling of what it means to live in loving tension and growing community one with the other. They have the potential of being the best form of human community as we age and sometimes as we struggle with illness and conditions which limit our individuality.

Eleanor Roosevelt also said:

“Remember always that you have not only the right to be an individual; you have an obligation to be one. You cannot make any useful contribution in life unless you do this.”

Let us in her other words create a future where the individual is prized above all – in creative human rights-based intention in our aged care facilities. If we want to make human rights real then they have to be meaningful for the individual resident, family member, worker and carer in our care homes. If not here, then where?

I leave you with some of her other words:

“The future belongs to those who believe in the beauty of their dreams.”

Donald Macaskill