The following is based on an address given yesterday at the Scottish Care, Care at Home and Housing Support Conference, ‘Care Revolution: Time to Act’ held In Glasgow.

 

I suspect I won’t be the only one in this room for whom the words of the song from Tracy Chapman were the wallpaper of their teenage years or twenties. First launched in 1988 ‘Talkin’ Bout a Revolution’ became the anthem of disenchanted and disaffected youth and social campaigners at a time of high unemployment, industrial unrest and growing poverty. It was a clarion call not just to be passive and talkative but to do something and to be someone.

The lyrics are illustrative of the whisper that becomes a shout for change:

Don’t you know

They’re talking about a revolution?

It sounds like a whisper

Don’t you know

Talking about a revolution?

It sounds like a whisper

 

Don’t you know

Talking about a revolution?

It sounds like a whisper

 

And finally the tables are starting to turn

Talkin’ ’bout a revolution

Yes, finally the tables are starting to turn

Talkin’ ’bout a revolution, oh, no

Talkin’ ’bout a revolution, oh, no

Talkin’ ’bout a revolution, oh, no

Many of you will know that I love words and languages and their root meanings and in my first language which is Scottish Gaelic the main word for revolution is ‘ar-a-mach’  and is similar to the Latin word revolvere which means  “a revolving,” “turn, roll back”.

All of these have the connotation of return and orientation and so I love the way in which Tracy Chapman‘s song uses the same metaphor that the tables are starting to turn …

Revolutions don’t necessarily mean throwing the baby out with the bath water, of engaging in violent and dramatic destruction and removal of the past. There is no need for any heads to be guillotined in the social care revolution that I want to suggest to you urgently needs to happen in today’s Scotland.

Going back to the way things used to be, a turning of time, is and can be revolutionary in itself and that’s what I think we need in social care not least in-home care we need a turning of the tables – we need a decision and a time to stop what we’re doing and rediscover the essence of what social care and home care is all about.

And why do most revolutions or renaissances or rediscoveries happen? – well usually because people or communities have simply had enough. They become tired of accepting the givenness of things, of settling for third or fourth best, of the status quo which limits and imprisons them.

Whether the civil rights cause in the United States, the disability rights movement of the1970s and 80s, the Dallits or Untouchables in India, – there is a time reached when people say enough – there has to be a better way.

And have we not got to that stage in terms of homecare and housing support in Scotland? Despite the warm rhetoric of political mantra and the delusion of massaged figures and budgets what we have arrived at is a state of affairs that cannot be deemed to be human rights based social care and cannot be seen to embed dignity in the lives of people.

What we have arrived at is a shameful abandonment of the essence of good social care which is about enabling people to be independent, to have control and to manage the living of their lives so that they reach their potential.

What we have arrived at is eligibility criteria set so high that you need to be close to death before you get a package of support, for which it will have taken you weeks and months to get an assessment organised. Then once you do you will get the bare minimum of support.

What we have arrived at is a system stripped of humanity, commissioners arranging an approach to care which is about providing maintenance not furthering life. Keep people alive but no more – and do it cheaper. Let us save money at the cost of living life to the full.

When someone in their nineties gets stripped of the care and support, she has had for 4 years; when someone who is imprisoned in their house by their mental illness has a care package removed with 2 days’ notice; when more and more workers are faced with the impossibility of packing all their compassionate care into 15 minute monitored time slots then …

what we have arrived at is a state of affairs which requires revolutionary change not just a tinkering or a slightly increased budget here and there – we need a re orientation and a rediscovery of the essence of who we are as one another related in our common humanity.

That’s why we need a care revolution and I’m sorry but I simply do not believe that the mechanistic reorientation of the system also known as the plans for the National Care Service will bring that revolution about.

But for a revolution to succeed we do not just need anger and frustration. We have that in abundance. We don’t just need a desire to change for the sake of change – but revolutions firstly succeed when you have a vision of what you want to become as an individual or as a society. And secondly, they succeed when causes are able to garner sufficient support so that there is a collective desire to change the way things happen.

And of those two starter ingredients we have the vision – we don’t need to search or look for it. It’s in the very description we have of social care at Scottish Care – it’s in our DNA – it’s about people being supported to lead the lives they want and need to – it’s in every report we have ever written about homecare.

Homecare as:

‘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.’

And how do we create a collective? – well for home care that means the coming together not just of those who work in the sector, not just organisations which deliver care and support, but all people in our community, not just those who receive care and support and their allies who are themselves drained and exhausted and so often without the energy to fight, to struggle for more than themselves and their loved ones.

We need Scotland to waken up – we need the tables to turn – we need a care revolution so that it becomes the concern of every person, every community, every politician and every individual who considers humanity to be of worth.

We have to stop fighting in our own patch, sometimes sniping at one another, we have to collectively come together and organise. We have the vision – we have the dream – it’s time to act – and the time is now.

But any journey needs strength especially to make that first step – to go outside of the known and venture towards an uncertain future.

I truly believe there is an inevitability that compassion will win out over contracted concern, that reality will replace rhetoric, that possibility can become the norm, that dreams and visions can become the familiar and the ordinary of our lives.

 One of my favourite singers who is very different to Tracy Chapman is the 1960s singer Judy Collins and one of her most poignant and beautiful songs was one that she sang having heard it first from Pete Seeger -a man who knew more than a bit about revolutions and change – who wrote the music to some very well-known ancient religious lyrics – You might also know the version by The Byrds.

To everything there is a season

To everything (Turn, turn, turn)

There is a season (Turn, turn, turn)

And a time for every purpose under heaven

A time to be born, a time to die

A time to plant, a time to reap

A time to kill, a time to heal

A time to laugh, a time to weep

To everything (Turn, turn, turn)

There is a season (Turn, turn, turn)

And a time to every purpose under heaven

A time to build up, a time to break down

A time to dance, a time to mourn

A time to cast away stones

A time to gather stones together

 

To everything (Turn, turn, turn)

There is a season.

 

For social care and for homecare there has to be a season,  this is it,

a season of revolution, a return to care without calculation, to times when relationships mattered more than records, when compliance wasn’t a monitoring system but the relationship between supported person and carer.

a season for everything under the sun

the time is coming when the tables will turn

 

when the talk of revolution will result in change

because the season of compassion, the season of care, the season of regard, the season of prioritising support for all has surely to come.

Enjoy being the care revolution in season and out.

 

Donald Macaskill

 

 

Donald Macaskill

The following extended blog is based on an address given to staff at Erskine Veterans on Friday 10^th May, in celebration of International Nurses Day which is held every year on the 12^th May, the birthday of that original nursing pioneer Florence Nightingale born some 204 years ago.

The theme for this year’s International Nurses Day 2024 is ‘The economic power of care’ which might seem at best a bit of a tangential topic but when you reflect on it, I think, makes complete sense.

I want to share some reflections this morning on this theme and to do so in three strands:

• What did money mean to Florence?
• The economics of nursing care, and why I believe,
• Social care nursing has a particular and unique contribution to make to economic and wider societal wellbeing.

I think it is fair to say that Florence came from a relatively well-off family. She was the second daughter of a prominent family, and her father William was a successful banker. The family owned properties in Hampshire and also an estate in Derbyshire. Like many wealthy individuals of the age, they had a large number of servants and staff. What was more unusual was that William insisted that his daughters had an education, and they were schooled in science, history and mathematics.

Florence was a religious child even by the standards of the age and from an early age she had decided she wanted to in her own words ‘alleviate suffering’ and to do so she decided to become a nurse. At the time nursing had a very low social status and the idea of someone from a wealthy background who simply did not need to work, becoming a nurse seemed unthinkable. It certainly was to her father William who resisted the protestations of his daughter. But like many fathers might recognise he eventually gave in and in 1851 he agreed that she should attend a school for women in Germany where she learnt core patient skills.

Two years later Florence was improving the treatment of patients at a women’s hospital in London. Then the war that changed nursing started. The Crimea War broke out in 1854 and British troops went off to fight in the Crimea – an area in the south of Russia, now part of Ukraine. When news reached the Minister for War, Sidney Herbert that hundreds of men were dying from their battle wounds and diseases he asked Nightingale to lead a team of nurses and go to the Crimea.

Her frontline heroism, her emphasis on hygiene and cleanliness, her transformation of hospital conditions became legendary and modern nursing really started.

After the Crimean War Nightingale was awarded a huge sum of money – over £250,000 from the British Government and in 1860 she used the money to establish the Nightingale Training School for Nurses at St. Thomas Hospital in London. Indeed, during the War in 1857 a fund was set up to support Florence’s work and it raised £44,000 equivalent to £2 million pounds today.

If you read her many letters and the histories and biographies produced over the years you can’t help but be struck by the fact that here is a woman who had economic and financial savviness, and knew the cost of things to the penny but she was always confident that she could raise the money needed in order to focus on what was paramount in nursing – the patient. Indeed, she is quoted as saying that ‘I attribute my success to this – I never gave or took any excuse.”

Money was a means to an end; its absence or lack could not or should not be used as an excuse for poor patient treatment or poor nursing skill and education. And ever since the Florence Nightingale Foundation has invested millions of pounds over the years to improve and advance the quality of care and nursing across the globe. And still does so today.

So, I think Florence teaches us our first lesson on economics and nursing – namely don’t let economic excuse or fiscal challenge become the reason for inaction.

In our modern era then what do we mean by the economics of care?

When the International Day of the Nurse theme was decided it was declared with the statement that ‘nursing creates healthy people and societies and drives healthy economies.’ In other words, there was an assertion that to have a healthy economy you need to recognise the contribution of nursing to societal and national wellbeing and health.

But when the ICN President, Dr Pamela Cipriano explained the reasoning behind the chosen theme, she also issued a warning:

“Despite being the backbone of health care, nursing often faces financial constraints and societal undervaluation … ICN has chosen to focus IND 2024 on the economic power of care with the aim to reshape perceptions and demonstrate how strategic investment in nursing can bring considerable economic and societal benefits.

We believe now is the time for a shift in perspective. We have seen time and again how financial crises often lead to budgetary restrictions in health care, typically at the expense of nursing services. This reductionist approach overlooks the substantial and often underemphasized economic value that nursing contributes to health care and society as a whole.”

Couldn’t be any clearer – if you want a healthy society then invest in nursing and what it brings to the health and wellbeing of that society. When times are tough and economies are struggling it is NOT the time to disinvest or draw back – quite the opposite – it is the time to prioritise in a profession which enables people to remain healthy (especially in austerity); it is a time to ensure that nursing continues to support people who want to and are able to remain part of their communities and who can then contribute themselves to the economic and social wellbeing of their place.

We very rarely view nursing as an economic contributor – we tend to be uncomfortable with that sort of language – but I think we need to get real and recognise that without the daily contribution of nurses up and down our country, then the functioning of our society and economy would simply over time grind to a halt.

It is especially the case in a country like Scotland that nurses enable communities to thrive and people to flourish, and where they contribute to our wider societal wellbeing and health. It is because of nurses that communities live better, and we are all able to become healthier. Without nursing the horrendous health inequalities of our country would become even worse and deeper.

My third strand for the economic contribution of nurses – is what I consider to be the distinctive, unique and particular role of nurses who work in social care settings and contexts.

There is a very active debate about what it is that is special or unique about social care nursing. I am not the only one in this room I suspect who has been reading a lot of threads on Twitter or X and Facebook discussing what a difference social care nursing makes.

There seems to be nothing new in this… more of that in a minute… But here are three descriptions: (so you know what it is that you should be doing.)

‘Nurses in social care have distinct expertise. They use their clinical skills to understand the variety of needs of patients, and also deliver relationship-centred support. They recognise the importance of giving each individual a sense of security, purpose, achievement and significance.’  NHS England

The distinct expertise of this group of registered nurses is in enabling individuals with care and support needs, many of whom have multiple co-morbidities and complex health issues, to live positively in their own homes. They embody the capabilities and cultures of both health and social care professions and employ their nursing knowledge and skills within a social model of care. Their focus is not only on an individual’s health condition and resulting impairment but also on the impact this has on their participation in social and community life.  Skills for Care

​A healthcare need is related to the treatment, control or prevention of a disease, illness, injury or disability. And the care or aftercare of a person with these needs. A social care need is focused on providing assistance with the activities of daily living.’  MIND

My former colleague Dr Jane Douglas researched and wrote a brilliant report which was published two years ago. It stated that:

“While participants to the study struggled to define the role of nursing, they were able to clearly articulate the knowledge and skills required to undertake the nursing role in care homes, along with the value of having Registered Nurses. They easily reflected on how they use their own knowledge and skills to ensure residents in their care remain as well as they can.’

It went on to say:

‘The Social Care Nurse focus is to ensure better outcomes for people experiencing care and their relatives, to ensure a quality of life and a quality of death. To support the person to be as well as they can with the understanding that wellness fluctuates daily. This is achieved through a holistic person-centred approach.’

That definition and the findings of her report in part grew out from and drew upon a Twitter debate about the distinctive role of social care nursing. And lo here we are again two years on and we are still debating what is distinctive and special, unique and particular.

But the very fact that there is need of a conversation in the first place tells its own story about the under-valuing, the stigma and the marginalisation of social care nurses. I find it astonishing that there is such a high level of ignorance amongst nurses who have never worked in the social care sector about what it is that their colleagues and fellows do. I find it shameful that there are so many instances of casual dismissiveness that suggest that social care nurses are folks who are wanting an easy life away from the hard work and grind of the acute hospital ward; I find it demeaning that there is so little understanding of the ultra-professionalism, astonishing levels of skill and autonomy that exists in the care home sector.

Can you imagine that surgeons in different disciplines would so easily dismiss a colleague or worse than that would not even consider that it was worthwhile that they should know the scope, expertise, clinical ability or patient insights of a colleague.

Maybe we have got it the wrong way around – rather than social care nursing having to defend its position, propose a theory of its uniqueness and posit its distinctiveness – maybe our colleagues in the NHS can tell us what is so special about the jobs that they do that all others in social care should be so casually excluded from value and appreciation, from recognition and notice?

In the theme of the day perhaps more than any other form of nursing it is social care nursing that helps turn the wheels of our economy. It enables people to be supported and nurtured so that they can continue to contribute. It nurtures relationship, fosters community, attends to not just the clinical needs but the holistic requirements of a person in community.

Social care nursing has to re-discover the spark of passionate identity which Florence Nightingale fostered – for if nothing else it strikes me when you read the works of Nightingale that it is social care nursing that seems closest to her original person-led, relationship based, autonomous understanding of nursing from life through to death. In social care nursing we get Florence’s sense that nursing was not an added extra or luxury, but an essential ingredient which bound our common humanity together especially to those who were wounded or ill, broken or fragile.

Florence once said:

“The world is put back by the death of everyone who has to sacrifice the development of his or her peculiar gifts to conventionality.”

It is time for social care nursing to stop being put back by dying to be defined … we should not be continually having to defend a definition but rather need to proclaim the irreplaceable benefits, the peculiar gifts, that the women and men in this room and outside across Scotland’s care homes and social care organisations are bringing every single minute of every single day.

Happy International Nurses Day when it comes.

Donald Macaskill

I sat last week and listened one year on from the day since Joan’s husband had died as she recalled the ups and downs, the tears and laughter that had been her year’s journey of grief. She had so many thoughts and memories which came tumbling out almost without ceasing, not least as she told me she needed to talk because when folks asked how she was she knew that it was just a passing off the cuff remark and that it did not really mean that they were wanting or prepared for an outpouring of truthfulness in all its raw and contradictory reality. So, she grabbed the chance of an anniversary hour and spoke and spoke and spoke.

It is unfair to try to summarise anyone’s mourning and grieving in a phrase or even anecdote, but one thing Joan said to me struck a resonance of recognition within me – that her grieving was all about ‘the silence of emptiness.’ I have often reflected over the years in this blog about the nature of emptiness and loneliness as it affects people as they grow older and age and as relationships change and come to a physical end, but there is in truth something unique about the emptiness of living in the absence of a loved one. There is something about silence stripped of sound, of energy and purpose which arrives when someone you love has died.

Joan talked in a way that spoke to me of all the moments I know and have myself experienced. The phone call you start to make before you come to the realisation that there is no number to call that will end up with you hearing that voice; the days when in excitement and happiness you rush home to talk and share but as you open the door you know that the crushing emptiness of silence will be all that will greet you; the fragile forgotten moments when you used to just gossip and opine, argue and agree; the rituals of a week whether the midweek night out at the cinema, the Friday night glass of wine, or the Saturday morning walk – all now accompanied by absence and silence and emptiness.

Now life seems full of the manic desire to fill every moment with activity and action in a failing attempt to forget just for a moment. And to top it all the sense that beyond a few people there is no one out there who really understands what you are going through and your sense of self-guilt that you aren’t further down the road, that you are still back at the first step on so many days, that sleeplessness is more often your night-time companion, and that there seems to be a never ending path ahead. That first year – and the next and the next – in the calendar of absence and loss seems to tick inexorably slow.

I sat there and listened not trying to do anything other than to be present so that the tears and sound might find some solace, but as I did I thought to myself why is it that personally, individually, and as a community we are failing still to give place to those who are lost in grief, real attention to those whose pain is locked silently within them, and have and are continually failing to offer true solace and compassion to the bereaved.

Nearly 6 years before the time I spent with Joan a handful of folks met together in May in Glasgow to talk about the sad state of bereavement support in Scotland at that time. Our concerns were that as individuals and as professionals we were continually coming across people who were broken by grief and a system of health and care, workplace and community, which seemed so inattentive to the needs of the bereaved and the grieving. We knew the personal and societal cost, the economic and community burden which resulted from grief unspoken and an inadequacy of effective bereavement support.

Out of those early discussions we set up the Charter Working Group which resulted in the creation of Scotland’s National Bereavement Charter for Children and Adults. Since then, we have continued as a group to raise the profile of bereavement and the importance of changing the way in which we support those who are grieving. We have developed guidance, and animations and videos, held webinars and seminars. All of this rooted in the conviction that good and adequate bereavement support should be a fundamental characteristic of our society. Indeed, our premise was and was and still is that bereavement support should be a fundamental human right.

Six years on it saddens me that I can sit with Joan and still have to conclude that Scotland is a country where we simply do not do death and dying, grief and bereavement well. I still have that hope and aspiration that Scotland could be that nation, our communities could be those places, where the bereaved are able to talk without a sense of burden, where businesses and organisations do more than tick the box in their offering of support and practical care; where we talk openly and honestly, emotionally and rationally about what it means for us to grieve and to mourn. But we have a huge distance to go and in part one of the things that holds us back from the achievement of the Charter’s aspirations, is that we are still too silent in our talk around death and dying, grief and loss. We are still as likely today to cross over to the other side of the road when we see the bereaved approach rather than to stay and be present.

That is not to deny the amazing work that is happening in communities and cafes, in pubs and parks, in theatres and church halls across Scotland. There is more chatter about grief and in no small part that is due to the work of Good Life, Good Death, Good Grief. This brilliant programme holds an annual week in which it seeks through small local projects and events, using the ordinariness of the commonplace and the creativity of the arts, to get us talking about death and dying. Demystifying Death Week is starting on the 6th and across Scotland this week in many places and spaces near to where you are you will have the opportunity to experience an honest conversation. As Good Life, Good Death, Good Grief says:

‘People usually want to do the right thing when someone they know is affected by serious illness, death or grief.  But often they can feel awkward offering help or worry about making things worse. People can have questions about serious illness or dying. But often they don’t know who to ask. Making plans when you’re healthy means there is less to think about when you’re ill. But people can put off making plans until it is too late.

Demystifying Death Week is about giving people knowledge, skills and opportunities to plan and support each other through death, dying, loss and care.’

My hope and aspiration live on. We can and must become more comfortable not just with talking about grief and loss but putting our words and platitudes into practical authentic living. I hope in the days and months ahead we might all continue to shatter the silence of emptiness around grief.

I end with some of the words of the British author and educationalist Abi May who also writes a grief and loss blog and who in a post entitled ‘Griefbursts and silent screams’ wrote this:

I screamed today.

A silent scream.

Nobody saw.

Nobody heard.

I clenched my fists

And breathed in deep

A silent scream

Nobody saw.

Nobody heard.

There were no words.

None to speak

None to say.

I closed my eyes

Shut them tight

My face was creased

And stretched

Muscles tense

But soundless

My silent scream

Came from the heart

From a place so deep

There are no words

I didn’t cry

I just bore down

I screamed alone

Without a sound

There is no why

Nor where and how

For what, it can’t be said

But for whom.

I screamed today.

A silent scream.

For her, that special one

The one who long is dead.

Donald Macaskill

Photo by Ann on Unsplash

On Monday and Tuesday of this past week I had the pleasure of spending time with colleagues from across the United Kingdom and Ireland at a meeting of the Five Nations Care Forum. This is a bringing together of senior staff from social care representative bodies and happens a couple of times a year. This spring meeting was hosted by Boots and took place in their headquarters in Nottingham.  As well as discussions on the key issues facing social care, I particularly enjoyed the opportunity to discover more about the history of Boots and the critical role of pharmacy in the support and care of all citizens but most especially for our older population.

In many ways the world of pharmacy is facing similar challenges to social care with issues  around public and governmental funding especially for community pharmacy, issues relating to recruitment and retention of staff, changes in the role of the pharmacist and the need to prioritise resource around research and development. But one thing I was continually struck by in my discussions was just how important it is that we have a constructive and positive relationship between those of us who work in social care and those who work in pharmacy. From the need to better support community care staff to assist folks in their use of medicines, and this will only grow as more and more people are supported at home rather than in hospitals, to the need to address issues of ecology and sustainability around medicine waste there is a need for a very close and developed relationship between social care and pharmacy. And as in all things this relationship needs to be nurtured at both local and national level to be of real benefit to all.

I was reflecting on all this when I discovered that in a couple of days on Monday 29th April, we will be recognising World Immunology Day. Indeed this year’s theme is “Immunity Through the Ages: Navigating the Science of Aging and Immunology.”

Some might ask why is someone who works in the world of social care reflecting on immunology? But in the light of a global pandemic which devastated so many lives and communities I would hope the role of immunology would be self-evident but also that its significance for all in both social care and in community would be better understood and elevated. Sadly, I suspect with the passage of time except for those who continue to be concerned about the impact of Covid on their own lives and those of others, for the majority thoughts of viruses and pandemics are fading into the rear or even worse are being deliberately ignored or deprioritised.

The British Society for Immunology states that:

‘Immunology has its origins in the study of how the body protects itself against infectious diseases caused by microorganisms, such as bacteria, viruses, protozoa, and fungi, and also parasitic organisms, such as helminth worms.’

This year there is a particular focus on the impacts of infectious disease amongst the old.

For those of us working in social care issues of immunology, infection prevention and control and vaccination have become centre stage to our concern and focus since Covid and for the majority of practitioners they remain so. Sadly, there are still people dying of Covid every week and there are still individuals who every week die as a result of developing other infectious diseases such as influenza. Yet the impact of infectious disease seems to be continually marginalised and ignored. So, the role of immunology remains or at least should remain of primary concern to the practitioners of social care.

When I was in Nottingham the latest report from Public Health Scotland was published and it showed a fall in Covid-19 and flu vaccine uptake for all eligible groups in the winter that has just passed when the figures of uptake were compared to winter 2022/23.

Like many I am increasingly concerned that vaccination rates seem to be going in the wrong direction. That concern has critically to do with the extent to which – despite the naysayers and anti-vaccination lobby – there is clear evidence that vaccinations have saved the lives of and protected tens of millions of individuals against so many conditions, not least Covid and influenzas.

In addressing the figures, Dr Sam Ghebrehewet, Head of Vaccination and Immunisation, at Public Health Scotland said:

“Vaccination remains the best protection against severe outcomes of both flu and COVID-19 and reduces the likelihood of severe illness, hospital admission, and in some cases death. Work is underway to understand the reasons behind the decrease in vaccine uptake. This is crucial to ensure that those most vulnerable are aware of their eligibility for vaccination.”

I suspect that some of the answer to those explorations will be (though I know this will not be articulated) a lessening in focus and priority on the role of vaccines in general not least by the prioritisation given to it through planning and resource allocation. At the height of the pandemic or most especially in the latter days of late 2020 when the first vaccines began to be rolled out, there was significant co-operation between the worlds of health and social care around vaccination both for residents in care homes, older people supported in the community and the health and social care workforce. That co-operation and joint working is sadly much diminished and so I fear that there is a lack of co-ordination, targeted support and priority.

We know for vaccination programmes to work well that vaccines need to be delivered to people in a manner which is as easy as possible. For many this will be at their local community pharmacy and for health and social care staff at their place of work. Whilst vaccines at work remain a priority for colleagues in the NHS sadly this is not the case for social care staff. Expecting workers in their own time to go and get vaccinated is inevitably going to reduce uptake not least when we are talking about those who are in roles which do not earn a lot of money and many of whom have to work extra shifts or extra jobs. As I have said on numerous occasions for a vaccination programme to work in the care sector, we need to take the vaccines to people, and we need to make sure that we address myth and scepticism which exists around vaccination.

We can and must do a lot more to protect everyone from the very known risks of infectious diseases and as my own organisation, Scottish Care, commented in response to the report, I believe that this should, include a targeted campaign to increase the confidence of all, especially social care staff, which both addresses vaccine scepticism and also popular myths and attitudes which suggest that catching Covid-19 or the flu are not serious.

Walking around the Boots headquarters and exploring the rich history of an organisation that for the last 175 years has been bringing medicines and pharmacy to the British public showed me just how critical pharmacy has been in addressing the ravages brought about by diseases. The fact that in general terms life expectancy has been extended and most live in health has been because over history we have eradicated so many infectious diseases which were once deadly. But addressing the challenges of infectious disease did not happen by accident – but rather it was achieved through targeted, joint working, relationships and partnerships at local level. So increasingly I feel we need to break down the barriers which sometimes exist between the worlds of pharmacy and social care, increase mutual understanding and professional regard, and together prioritise ways in which we can ensure all who need to be are protected from disease and infection. If the pandemic has taught us anything it has surely taught us about how important it is to work across boundaries, to know the worlds of others and to avoid silo thinking and planning.

As we think about immunology and vaccination, like many in the world of social care I think about the challenges that a new season of infectious disease, whether Covid or influenza might bring, and I increasingly wonder as to whether we really have learned the lessons of a pandemic for which we were so badly prepared. Are we working together to address known and unknown immunological threats? Certainly, given the complete absence of social care provider contribution in the current Scottish Government pandemic planning, the signs are not good.

Donald Macaskill

Home is where the health is … ageing well in place.

The following is a shortened edited version of a talk given to the Edinburgh University Advanced Care Research Centre (ACRC) Spring Symposium on Monday 15^th April.

Whether tenement flat, bungalow, farmhouse, or croft virtually every piece of research I have read or conversation I have held with folks over the years has articulated a desire to age in place, remain in place and to die in place – if all else is equal.

Space and place are intrinsic to not only our psychological sense of wellbeing but also to our physical health, not least in a community such as Scotland where health inequalities are so influenced by geography and economy. In the lottery of location, location, location where you live matters for how healthy you are or are not.

Over the years I have written and spoken a lot about what it means to belong to somewhere, and the influence that such a sense of place can have upon your health and wellbeing, or even more critically what happens to you when due to no fault of your own you are unable to ‘remain’ in your locale or when ‘you lose your independence.’

There is a rich history of research on the desire of people to live independently in their own homes for as long as possible. There is an accepted presumption of the truth of that sentiment, albeit that we also have growing evidence to show the clear health benefits of congregated or shared living when an individual may reach a particular age in life or stage of frailty.

The presumption of home first is part of the DNA of our social care policy and delivery. It is articulated in the Scottish Government’s post pandemic Statement of Intent on the ‘Health and Social Care of Older People.’ in the following terms:

‘Our vision for Scotland

We want people to enjoy a high quality of life as they grow older. Our ambition is to make Scotland the best place in the world to grow old. We want to achieve this through safe, integrated, person centred health and social care. Everyone should be able to live independently, and drive the decisions about their health and wellbeing; with their human rights respected and their dignity protected…’

All this underlined further when it states:

 ‘Home first approach

 People have told us that they would like their care and treatment to be delivered in their home or local community as much as possible. Our health and social care services must reorganise themselves to better support people to live well and independently in their communities as they age.’

Health and social care for older people: statement of intent – gov.scot (www.gov.scot)  (March 2021)

Laudable, clear, and factual in statement and intent. Hard to disagree with it.

And we can all recognise similar aspirations, notably the desire for independent living – throughout the years of policy of Scottish national government, whether in the seminal work of the key learning disability report ‘The Same As You?’ of 2000 which hastened further the closure of our long stay institutions, or the more recent passion behind the Feeley Report, the Independent Review of Adult Social Care (2021) – people time and time again have stated the desire to live as independently for as long as possible.

The ageing-in-place agenda posits that the preferred environment for older adults to age in is the community, where they can remain active, engaged, socially connected, and independent.

The question is – have we as a society paid more than lip service to that aspiration? Have we fostered and nurtured the civic and care capacity to respond in full to that desire or have and are the visions of ageing in place becoming rooted in the soil of delusion? How prepared is Scotland to enable people to age healthily in place?

I want to explore this issue of healthy ageing in place – through three perspectives, namely legislative, finance and the built environment.

1.

The first is legislative. It is sometimes lost amidst all the talk of reform and reshaping, of new creation and novel development such as the National Care Service, that Scotland already has some of the most progressive health and more specifically social care legislation in the world.

The Social Care (Self-directed Support) (Scotland) Act 2013 (SDS Act) sought to bestow upon the individual who required support and care new rights guided by the principles of participation and dignity, involvement and inclusion, informed choice and collaboration. It aimed to change practice from assessing what someone needed to maintain and survive life to determining what outcomes would enable that individual to flourish and thrive. Budgets were to be in the hands of the supported person; new models of innovative, community-based supports would be developed as flexibility, creativity and diversity were written into Guidance and advice. It was all designed to allow folks to live the ordinary lives they wanted and to participate as full citizens of their local communities. In essence it was about enabling ageing in place (before the term became commonplace.) This was primary and preventative health care dovetailing into community-based social care.

Derek Feeley 8 years later in his Review told us what those of us on the ground knew already namely that the implementation of the SDS dream had failed.

It was clear from his Review that from the experience of many of the stakeholders who had engaged in its processes that the implementation of Self-directed Support (SDS) was symptomatic of the failure to embed progressive social policy within the existent political and governmental systems. SDS failed and is still failing in part because of the impacts of austerity and economic downturn and later the pandemic but in truth the faultiness are a lot more local. Social care as delivered today and Self-directed Support as initially conceived has been and is hampered and limited by the current model of local government in Scotland and by the desire to entrench power and control within the hands of those who finance and contract rather than bestow control and choice to citizens.

SDS provides the foundation stone for a re-shaping of social care that enables the person to be in control, to utilise autonomy and exercise choice not only of the decisions made around their life but of the outcomes they want to achieve.

The legislation already exists to enable place-based healthy ageing – the commitment around implementation is what is lacking. We are paying lip service to individual choice and personal control.

2.

The second influencer upon any assessment of ageing in place must be the fiscal reality of the current moment. Folks like me who have been around this social care world for more years than we would wish to confess recognise that we have never before seen the drastic levels of savage cuts to social care provision we are facing now. What is happening in our local communities across Scotland today rides a coach and horses through legislative intent and political aspiration.

In the days and weeks that have recently passed I have come across numerous instances where individuals are having their packages of support and care reviewed, reassessed and stopped. Indeed, I know of several authorities which have established review teams ostensibly to make sure people are getting the right support but in reality to cut the majority of packages and find savings. Now in a context of fiscal waste I can understand such a measure – but we are already talking about a population who only receive services at the level of critical and emergency need. How many people do you know who as they age require less support? A few yes but the majority – no way.

Despite the self-assurance rhetoric of commissioners and local officers in health and care partnerships what we are witnessing is frankly a grotesque cost saving exercise which is putting people’s lives at risk or at best is serving to limit and diminish those lives.

Indeed, the CEO of Age Scotland Katherine Crawford warned about the precarious state of social care in Scotland, stating that:

“The longer people wait for care, the more acute their needs can become. Distressing figures from last year showed that hundreds of people died while waiting for care packages to start. For others, it is unsafe for them to be at home without the care they need, resulting in poorer health, increased hospital admissions and yet more pressure on the NHS as people are trapped in hospital.”

“The crisis in social care in Scotland is fast becoming a national scandal.

More than 10,000 people waiting for social care at home (agescotland.org.uk)

She is of course right because the latest figures from Public Health Scotland found that 6,811 people are waiting to be assessed for social care at home, with a further 3,393 waiting for a care package to be delivered. The vast majority of these are older Scots.

Because those who age in place are largely invisible, because they don’t form queues in ambulances outside hospitals or in A and E corridors – they have become the easy collateral of the phoney war which is going on in our communities. A war which proclaims a political rhetoric of more investment and funding in health and care whilst the truth on the ground is of stripped back services, packages of support being removed (often with only 72 hours’ notice) and people being quite frankly abandoned to age unhealthily. The vast majority of additional resource is helping to pay workers a better wage which is fundamental, but it is not adding to the level of support in any significant way.

We’ve turned away from an aspiration to enable people to be supported by preventative care to enable them to age in place and potentially thrive and flourish into a system which is about maintaining people. There is no dignity in a life which simply breathes in and out but whose choice, wishes, feelings, desires, and dreams are negated.

3.

There are of course other dimensions which also need to be addressed if we are to achieve a healthy ageing in place.

Central amongst these is our built environment, not least our housing stock.

In 2018 I was writing and speaking about how important it was that we started to re-design our city centres to enable them to become once again places where people of all ages were able to call home and to do so in a manner that was truly inclusive. To some extent this has and is happening, but I fear that it is a process of re-design which excludes the potential of ageing in place. But do we have an urban environment which validates and values ageing in place?

I was intrigued by the research of three Scottish based academics Brunelli, Smith and Woolrych in a paper ‘High streets, ageing and well-being’ published in the Journal of Urban Design at the start of this year. In it they explore three Edinburgh ‘village’ high streets.

Full article: High streets, ageing and well-being (tandfonline.com)

They start from the premise that ‘despite their perceived decline, local high streets in the UK remain valuable central and well-connected places that can foster ageing in place, yet their potential to sustain well-being in old age has been overlooked.’

Analysing their qualitative and quantitative data they explore older people’s well-being in four key dimensions: social well-being, sense of place, enjoyment and feeling active and sense of purpose and mastery of the environment.

Their findings include an assertion that to make these locales more age-friendly and to support older people’s well-being:

‘it is desirable to: make the public realm more inclusive, pedestrian-friendly, and integrated with public transport infrastructure; actively support the clustering of amenities, shops, services, and bus stops, anchored to a day centre/local hub; encourage attractive shopfronts to support a welcoming and safe atmosphere including the externalization of activities, for example, adding opportunities to sit outside; and increase the provision of affordable housing near and/or on the actual high streets.’

It can be achieved with collective coherent inclusive involvement of all voices in town planning, in architectural design and in urban investment. I really do believe our cities and towns can become age friendly and dementia confident. To do so we in part need to challenge the bias in the construction industry which effectively buys out ‘social housing’ targets – when did you last see a bungalow built? We need to address the issues of pavement furniture and shared pavements; of traffic lights that are far too fast, a lack of seats and public toilets, poor visual signage and so much more.

We also need to challenge the ghettoization of ageing which creates villages for those with dementia equivalent to the asylums of the Victorian era – age out of sight out of mind even in a luxury environment. Ageing in place also requires a collective reframing of workforce skills and abilities to make all retail, commercial and community staff, both in the public and private sectors confident around age and all it brings including dementia rather than simply aware.

But as the Centre for Ageing Better made clear in a report last year:

‘ simply changing the built form is not sufficient to create a more inclusive environment for ageing since places are more than physical spaces. Viable environments are articulated through a strong sense of place, defined as the social, psychological and emotional bonds that people have with their environment. A strong sense of place results from having access to supports for active participation, opportunities to build and sustain social networks, and assuming a meaningful role in the community. In contrast a feeling of displacement or ‘placelessness’ is associated with alienation, isolation and loneliness, often resulting in adverse health and well-being outcomes, particularly amongst vulnerable older adults.’

To conclude if home is really to be where the health is, where people can age in a manner that allows them to grow and change, thrive, and flourish, then it requires the collective will of designers and architects, planner and politicians, economists, and employers to create the spaces and places that allows for that. It demands a vision of ageing where those who age are in control, not just at the centre of someone else’s concern. Technological innovation can take us part way down that road but without the societal willingness and political investment it will be a wasted journey.

Donald Macaskill

Photo by Katie Barrett on Unsplash

The month of April is Stress Awareness Month which has been held every April since 1992 and which is designed to increase public awareness about both the causes of and cures for what in many parts of the world is a stress epidemic.

Stress has been a topic and theme that has always interested me both in a personal and professional way. My interest probably started when as a teenager I was aware of two adults in my life who were deeply affected by stress. One was an individual who worked constantly and relentlessly – people around him tried to get him to slow down, to take a break, to look after himself by eating better and not drinking so much. All of it was to no avail as he powered on to the get the next task done with an invisible deadline focussing his mind and work pressure dominating his priority. He used to dismiss concern by saying he was a ‘workaholic’ and he needed therapy not criticism.

He quite literally worked himself to death because one day he dropped dead in his late fifties of a massive heart attack. At his funeral people talked about how his stress and workaholism had killed him with someone in my earshot opining that “There are too many in this graveyard who are there because of stress.”

The other person I’m thinking about was someone who was continually anxious and who was always concerned that what they did or how they performed was never good enough. They had held down a good job but over time they got more and more anxious and their life and relationships began to be deeply affected by the pressures they felt they were under at work. Despite very real and honest attempts by managers and employer they continually felt that they were falling short and what started as occasional days off work morphed into days and weeks. After a while they were in the language of the time ‘signed off with stress.’

Two very different instances but with one common link – stress. After this I went on to study the nature of stress and in particular occupational burnout and its relationship to self-identity. After conducting just short of a hundred interviews I realised just how complex the whole nature of stress was but just how devastating it could be not just for occupational role but for your very health and wellbeing and the relationships you were or were not able to have. Stress really was and is a killer and can change lives dramatically.

According to research in 2022/23:

• There were 875,000 cases of work-related stress, depression or anxiety.
• Stress, depression or anxiety accounted for 49% of all work-related ill-health cases and 54% of all working days lost due to work-related ill-health.
• The main work factors cited as causing work-related stress, depression or anxiety include the demands of the job, lack of control, lack of information and support, work relationships, and roles and responsibilities.

There is a huge amount that organisations and employers can do which not only fulfils a legal duty, but I would argue a moral one, to ensure the health and wellbeing of their employees. Doing so as the HSE argues is good for business as it increases productivity, reduces sickness absence and nurtures staff.

In the last few years, we have seen across the board an increased awareness in targeted resources and support to improve mental wellbeing for the workforce not least after the pandemic.

Having said all that – and we certainly need to continue to resource and develop practical work-based mental health supports – I think there is much more to reducing stress than responding with support after stress has occurred – there are clear preventative approaches.

One of the few insights I have gained over the years in researching and reading about stress is that there is an inextricable relationship between the stress one experiences in work or life in general and the extent to which your role or job of work is valued or you feel valued personally in life or relationships.

When I interviewed people nearly three decades ago about what made them stressed – yes the volume of work, lack of structure of support, financial and other pressures all were commonplace – but what was highlighted more than anything was the extent to which they felt they were not valued in their role.

Jump forward to conversations I’ve been having in the last 4 weeks, and it has felt to me as if I’ve turned back the clock. Time and time again home carers, nurses in care homes and managers in care services have told me that what affects them and their colleagues more, what adds to the stress is that they feel the job they do is not valued, understood, respected, or considered of worth by others around them. Put simply they are saying to me that a significant part of the stress they are enduring is because of a perceived lack of worth and value impacting on both occupational and personal self-esteem.

The pandemic brought about the moment of the clapping syndrome – where every Thursday (eventually for social care) people would gather in the street or on their front steps and visibly thank key workers by clapping. But no sooner had the claps echoed into silence, frontline care staff fell into the old routine and habit of being told they were ‘just a carer’; of others being more rewarded by pay increases, of struggling to get people to consider that social care was just as important as the NHS. People like me go on about this imbalance a lot – for instance how we have a ministerial role which talks about NHS Recovery but not one for the equally if not more pandemic traumatised social care world and workforce. At the frontline, workers are stressed to an extent and degree that I and others haven’t witnessed – it is a set of system harms resulting in real illness, fatigue and burnout.

But for many it isn’t just about salary and reward, about systems and models, it is about how society does or more honestly does not value the job and role, the professionalism and expertise entailed in the role of frontline care work.

Collectively we will only address the burnout and stress, the breakdown and despair at the heart of both paid and indeed even more so unpaid care, if as a whole community and society we start to value care and support as the heart of our being community with one another.

I know that many carers love and find huge personal satisfaction from their job and what it brings and means to the people they support – the truth of that is seen in the long service and dedicated professionalism of thousands of women and men who would be capable of earning so much more in other sectors. But we also, I would suggest, have to recognise those we lose to care, those who leave and give up, those who are stressed and burnt out because they simply don’t feel valued or wanted by wider society. As one put it to me recently. ‘“What I do is who I am. I can’t imagine not being a carer. But there are so many who think my job is of no consequence and who brush me aside. When that happens, I feel so empty and just want to scream.”

If we are to address workforce and personal stress in the care sector, we must surely start by valuing the very essence of the role of care and support? Sadly, we have a long way to go on that journey but it has to start sometime.

Donald Macaskill

Photo by engin akyurt on Unsplash

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Shiona from Dumfries and Galloway  wrote:

I can still breathe

I can still bend

I can still laugh

I can still love

I can still fly

Donald Macaskill

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

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

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

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

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

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

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

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

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

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

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

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

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

I mentioned another conversation I had this week.

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

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

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

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

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

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

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

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

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

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

Donald Macaskill

Photo by Rebecca Matthews on Unsplash

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Canadian poet Rupi Kaur writes:

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

Donald Macaskill

Photo by Alexander Grey on Unsplash

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

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

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

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

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

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

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

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

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

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

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

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

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

This change has been described in the following terms:

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

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

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

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

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

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

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

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

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

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

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

Someone a bit like Anna Wigeon’s social worker:

Mosaic
by Anna Wigeon

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

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

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

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

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

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

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

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

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

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

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

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

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

From Poems by and for Social Workers – Scottish Poetry Library

Donald Macaskill

Photo by Anne Nygård on Unsplash