Today is World Labyrinth Day. I first came across labyrinths when I was at university and participated in a day of reflection as part of UN Peace Day. Since then, I have always been fascinated both by their ancient history and their contemporary usage. Indeed, in many senses labyrinths are having something of a resurgence and renewal none more so than in the world of palliative and end of life care.

For those not familiar with labyrinths the Labyrinth Society describes them thus:

‘Labyrinths are an ancient archetype dating back 4,000 years or more. They are used symbolically, as a walking meditation, choreographed dance, or site of rituals and ceremony, among other things. Labyrinths are tools for personal, psychological, and spiritual transformation. They evoke metaphor, sacred geometry, spiritual pilgrimage, religious practice, mindfulness, environmental art, and community building.’

The ‘labyrinth effect’ is described by John Rhodes as:

‘It appears that walking or otherwise interacting with the labyrinth might enable a set of physical responses (increased calm, quiet, and relaxation; decreased agitation, anxiety, and stress) that allows for the emergence of a set of “state of mind” responses (increased levels of centeredness, clarity, openness, peace, and reflection). In turn, these “state of mind” responses might increase one’s receptivity to flashes of intuition, hunches, nudges from one’s “inner voice,” and other types of insight regarding one’s problems, issues or concerns.’ [1]

And so in gardens and beaches, in forest clearings and community settings, in places of memorial and city gardens and as I noted above in hospices and some care homes you are likely to come across labyrinths in all shapes, sizes, materials and forms.

I was reminded of the labyrinth as a physical and metaphorical form after I had delivered a talk about the role of social care in palliative and end of life care.

Social care whether in care home or in one’s own home is often forgotten about when we consider end of life care yet in truth most of us would if all else was equal chose to die in our own home or in a homely setting. Enabling that to happen has surely to be one of the key priorities of the Scottish Government consultation and engagement exercise to create a new Palliative and End of Life Care Strategy which is currently being consulted upon.

The critical role of care homes and homecare in delivering quality, person-led and dignified end of life care cannot be under-estimated and was affirmed in the Scottish Care report, ‘The Trees that behind in the wind’ published some 6 years ago now.

At the event last week, I shared an insight which a frontline nurse gave me as she tried to describe her role in end-of-life care in a care home. She wrote to me during the pandemic and when I asked her how she saw her role especially in these times she said that she was ‘an in-between worker.’ She went on to say that she was very aware that she was not the person undertaking the journey of dying or coming to terms with the end of life but was the companion along that way for an individual as they took these steps forward. She was the presence in between absence and busyness; between silence and doing; questioning and content; pain and rest. She saw her role as especially valuable to those who were wracked by dementia and whose ability to associate with others or to remember events and occurrences had become so limited, for whom distress was too frequent a companion.

For many people who receive social care in later life and especially those living with advanced dementia wherever they are supported it is these in between moments which can become times of potential comfort and solace, the occasions when we drop our activity into simply being, yet for many that is also a time of real anxiety, aloneness, and fear. Presence is intrinsic to comfort, support essential for solace. In between times are the hardest ones but can also be the most fruitful.

That nurse also spoke to me of the way in which physically she gave comfort, assured presence, answered anxiety by walking with residents. She found a solidity, a sense of direction and purpose in walking and movement even with those who were very frail.

When I was in Canada some time ago, I came across a care home which used a labyrinth as a space for personal and individual reflection but also as a place for a guided exploration of the issues facing a person as they journeyed at the end of life.

I have seen labyrinths used to support the journey of those who are close to death. As we move and walk to its centre it allows us to reflect, to be, to ponder and to simply breathe. The labyrinth allows us to walk to the heart of our being, to prepare for any outcome, to be open to discover who we are  even in the last moments of breath, which in essence is what I think good accompanying end of life care is all about. Unlike mazes labyrinths have no wrong turns and no missteps, but rather all steps are of purpose and value; all experiences can enrich and mould us.

Life is often described in many cultures and philosophies as a journey. We recitnise and celebrate the first faltering steps of our toddler years, we reflect on the journeys of our adulthood and middle age, and then these are replaced by stepping into the unfamiliarity of age and the end of living. A journey can be both physical and psychological.

Whether a labyrinth is marked on a beach or in our own garden, is created in a formal setting or not, or is simply one of the imagination inside our head, on a bit of paper or in the touch of a hand, I think there is strength in finding and creating spaces and places that allow us to detach ourselves from the ordinariness and mundanity of the moment and to reflect, consider and ponder. At times of real challenge, the necessity and value of such spaces becomes all the more significant and heightened.

A journey is always achieved by single steps and as we move closer to death, we engage in that most personal and individual of all journeys. Great palliative and end of life care wherever it is offered enables an individual to undertake their own journey, at their own pace, in their own direction, both inwards and outwards.

Great poets can take us into their own labyrinths where steps bring us closer to understanding and truth in subtle ways. As the seasons change and the air starts to fill with the invitation of lawnmowers, I cannot but reflect on the wisdom of Philip Larkin’s poetry around death and dying, and I leave you with ‘The Mower’ :

The mower stalled, twice; kneeling, I found

A hedgehog jammed up against the blades,

Killed. It had been in the long grass.

 

I had seen it before, and even fed it, once.

Now I had mauled its unobtrusive world

Unmendably. Burial was no help:

 

Next morning I got up and it did not.

The first day after a death, the new absence

Is always the same; we should be careful

 

Of each other, we should be kind

While there is still time.

 

Philip Larkin, “The Mower” from Collected Poems. Copyright © Estate of Philip Larkin.

https://www.poetryfoundation.org/poems/48423/the-mower-56d229a740294

 

Donald Macaskill

 

 

 

[1] Rhodes, John W. “Commonly Reported Effects of Labyrinth Walking.” Labyrinth Pathways, 2nd Edition, July 2008, pp. 31–37.

I have literally been all over the place in the week that has just passed. It started with me joining colleagues in Ireland and hearing from the Irish Minister for Older People and Health about their pandemic experience in care homes and in the community as part of the Five Nations Care Forum. Also, at that Forum the delegates from various national care associations were able to share reports on what was happening in their jurisdictions and to talk about what were the challenges they were experiencing. Then on Wednesday I had the very real privilege of attending ‘Devoted and Disgruntled’ which was an Open Space event which brought together some 60 or so frontline carers, managers and others to share their insights on the present and future realities facing social care in Scotland from the perspective of the frontline worker. It was an inspiring day with great conversation, a sharing of ideas, support on emotional issues and a real and tangible sense of determination that the voice of social care needed to be heard in the din and noise of debate.

Throughout the week therefore issues to do with the frontline workforce have been uppermost in my mind. Chief amongst those has been the sense in which it feels that we are on a burning platform at the moment. As our politicians look into their telescopes to spy the glorious new land on the horizon called the National Care Service those working on the ground feel we are at a point of collapse and disintegration. Never mind the dream you are saying let’s deal with the real world. Nowhere is that disconnect between reality and the challenges being faced today in social care and a desire for future reform and new beginning more starkly visible than in the manifestoes of our political parties.

Just in case like so many in the general population you had failed to notice we have an election on Thursday coming (5^th), I had hoped that given the trauma facing social care not least as a result of latest waves, massive cost of living increases,  experienced staff leaving the sector because of emotional trauma and lack of value, levels of absence and sickness the like of which most of us have never seen, real recruitment and retention issues, huge increases in fuel stopping people going to work, and energy rises which are crippling care homes especially in rural areas  – given all that, that the present realities of social care would be front and central in all the debates we are hearing. But instead, deafening silence or at least whispers – so I have had a look on your behalf at what the parties are saying about social care, and most directly, the crisis that the whole social care system is enduring at this time.

Don’t hold your breath – because they are not saying much at all.  Or should I say they are saying a lot but without real costing, analysis, or grounding. I have put links so you can read them yourself but a brief summary:

The SNP Manifesto not surprisingly goes big on the National Care Service, underlining previous commitments to ensuring people who use services are at the heart of re-design, articulates that local accountability will still happen and that SNP councillors will be closely involved. It recognises the contribution and value of both paid and unpaid carers during the pandemic and the need to ensure enhanced pay and conditions. See SNP Local Elections Manifesto 2022 by HinksBrandwise – Issuu

The Scottish Conservatives argue for a local health and social care service with a sharp critique of what they see as centralisation of services. They talk about creating a Local Care Service, ending out of area placements, ethical commissioning, investment in staff and applying funding to frontline delivery. They also mention the need to re-focus on choice through Self-directed Support.  See Back to Normality (scottishconservatives.com)

The Scottish Greens emphasise supporting social  care staff to make sustainable travel choices, call for frontline carers to receive £15 an hour, that workers are paid for travel between jobs and fair work practices become embedded. They also talk of local delivery and valuing care staff as well as unpaid carers. See Manifesto LE2022 WEB.pdf (greens.scot)

Scottish Labour affirms that good quality care is crucial to our wellbeing (though disappointingly it characterises one of the roles of social care as alleviating pressure on the NHS). An emphasis on people being able to live life to the full potential sits alongside a statement that this will need more than a name change or structural reform.  It states, ‘It is time that we treat health and care like one system.’ The Manifesto calls for a £15 an hour minimum for carers; collective bargaining and regulator registration for workers to be paid for by Government not the worker. It argues for free residential care for the over 65s; an end to care charging; a national unpaid carers strategy, increased public provision and an end to marketisation of care. See  LocalGovManifesto2022.pdf (scottishlabour.org.uk)

A quick read of the manifestoes shows some real commonality and shared emphasis – on fair work, on proper remuneration, on giving choice and maintaining local influence etc. But for those of us who are somewhat long in the tooth in terms of our social care aspirations – have we not heard so much of this before? I am not at all convinced that given local authorities are the primary commissioners of social care that in these diverse manifestoes we are witnessing the level of ambition, practical resolve and real innovation needed to deal with the current crisis never mind crate a vibrant, visionary social care system for the future. And that is said with the deepest of respect for the motivation and commitment of so many in our political parties.

The conversations I have held and heard in the last week across nations and communities tell me a story of people who use and work in social care who are tired of platitudinal promises and lofty aspirations, they want change, and they want it yesterday not in some distant utopian dream-state. We need to radically change the way we prioritise social care and we start that by recognising its massive economic and societal contribution to our communities. I do not get the sense of that value in any of these documents rather it is a set of bland promises without root in reality.  The sheer lack of proper fiscal allocation or any analysis of the true resource gap between what we deliver now and what is needed is deeply problematic. We need to recognise that our structures and systems will not work into the future – we will simply not have enough workers even if they are well paid and rewarded to deliver social care as we know it today.  And we cannot simply depend upon family and informal carers who are already well beyond breaking point. How are we going to ensure dignified, rights-based care for a population where most of them will be older and will  be the users of support services when there is a declining working age (and therefore tax paying) population? How will we ensure real choice and not a monolithic offer which strips the social out of care and delivers a clinical emergency response only? So many big questions which are not getting even starter answers.

At the very least please go out and vote on Thursday – social care should be the dominant issue of the moment, the fact it is not is as much of a concern as the rhetoric of political emptiness we so often hear.

Donald Macaskill

On Thursday last along with a good number of folks I attended the first meeting of what was called the National Care Home Contract Redesign. Sounds dull and boring but it was both an interesting and critical meeting.

The National Care Home Contract (NCHC) is now over 15 years of age and has had one or two significant changes in that time, but most partners believe it is time for a radical re-envisioning of its core elements. It is a Contract often mentioned in social care circles in Scotland and is frequently held up by others across the UK as a model of best practice. However, at 100 pages plus I doubt many have read it from cover to cover!

What is it? It is a Contract between local authorities and providers of residential and nursing care home support services across Scotland. It grew out of a time when there was a challenging dispute and disagreement between care homes and both local and central government. The dispute centred around what was a reasonable fee rate to pay care homes for the care support of some of our most important citizens. Whether charitable or private in their business models care homes at the time argued that what they were being offered was insufficient to deliver dignified care. Out of this dispute and the very real risk of a ‘care strike’ the NCHC arose.

The National Contract is unique in the UK in that as well as setting standards of quality and expectations of what a service should deliver it also determines through an annual national negotiation what the rate of fees should be. Over the years a ‘cost model’ has been partially developed and partly agreed which sets costs for various lines including what staff should be paid, what cost payments should be for commodities such as food and energy, what should be allocated to resident activity and what level of return an organisation whether charitable or not should expect for providing both the premises and building and also the services delivered in that building. And a lot more besides.

Unlike in the rest of the United Kingdom the majority of care homes in Scotland are run by small, often family businesses, with an economy of scale unlike that of the larger groups which dominate the scene in England. Scotland also has the challenges of a very diverse population as well as rural and remote geography.

Over the years the gap between what some consider to be a reasonable level of fee charge and the National Rate has widened. Some have argued that the failure of public authorities to pay adequate fees has led to those who pay for the care home place themselves – known as self-funders – to effectively be subsidising the shortfall from the State. Others have pointed to the disparity between local authority care home provision (at a rough average of £1,300 a week) compared to what those same authorities offer independent (private or charitable care homes) at just under £800 a week. Independent analysis has recently suggested that the average weekly fee rate should be between £1200-1400. Now whilst mention of finance can be off-putting to ignore the realities of cost and resource causes huge damage to the ability of any organisation or system to be able to deliver the services that they want, to invest in improvements and to develop and innovate.

So all this is up for re-design and for completion in a relatively short period of time. The process last Thursday was inclusive of a wide range of interests from residents’ groups, advocacy organisations, care home providers, the trade unions, commissioners, government at local and national level and so many more. It is critical that such inclusiveness occurs to enable the end vision to be one shared by the majority.

One of the exercises we have all been charged to consider is what is our vision of the care home of the future? What is it that we aspire to? This is central and important because there is little point in looking at and agreeing on the detail of a contract if the service offered or sought is not what is needed and wanted. As colleagues have researched and written at length care homes today are very very different from what they were ten years ago, and I suspect in ten years’ time they will be unrecognisable from what we see today.

Some of those who read this piece will come from a position which states that there is no room for what they call ‘institutionalised’ care. I respect the strength of those views but disagree with them, nonetheless. Care homes at their best are not institutions in the sense that personal autonomy and individual control are removed, where in a Victorian sense, choice is withdrawn, regimental behaviour expected, and routine becomes the god of occurrence. Care homes, as I know so many of them, are places where in community with others an individual is able to flourish and reach their potential; where the care and support of persons who cannot be supported in their own home ( and this is true for so many) is delivered in a manner that respects their autonomy, values their dignity, puts the individual at the centre, and at the same time keeps someone safe from harm whilst enabling them to grow until they die. Care homes as I know them offer sensitive dementia care and enhanced quality palliative and end of life care.

I do believe that we will always need places – hopefully in the hearts of our communities – where those who cannot be supported to live independently and those who choose not to live alone – are supported in a way that values their personhood and enshrines the best of who we are as communities of women and men.

Regular readers of this blog can probably guess what some of the characteristics of my vision might be, but as a starter for 10 here are some:

1. Care homes must be places where people are able to flourish – where we better achieve the balance between the individual and collective living. Inevitably one of the challenges of living in community with others is that we cannot always get what we want, we have to engage in the rub of compromise and association. Equally one of the strengths is a solidarity of mutual support and concern, with less likelihood of loneliness or isolation. Sadly, the pandemic and especially the response to it as instructed by ‘experts’ to care homes has diminished the significance of the individual as blanket rules and assumptions have held sway. It led to the unacceptable long-term exclusion of family and friend. That is the antithesis of what a good care home should be – a place where it is possible to be yourself even in community with others. Where the care and support are not off the shelf but designed to fit your uniqueness and individual characteristics. It should be person-led rather than what we often experience in other settings.

It is this emphasis on enabling an individual to have their own self valued that witnesses the truth that many who have faced discrimination in their lives attest to namely that they find acceptance, welcome and identity in a care home setting.

Care homes are also places which challenge the widely held assumption that its residents and older persons in specific have nothing to say, contribute or offer to the common weal – nothing could be further from the truth. They are and can be places where individuals grow, create and flourish until the end of their days. They are not so much God’s waiting room, as the anteroom to a fulfilled and fulfilling life.

2. Care homes must be places with two-way doors. The physical shutting away of care homes during the pandemic has led to an even greater exclusion of them from the heart and hearth of community. They should and must always be places with an openness to the community and vice-versa. They are not prisons or shrines but rather should be the beating heart of all community. This necessitates them being local, proximate and in the middle of our living, where the flow in and out is reflective of the rhythmic river of community.

Perhaps that is best evident in those care homes which have worked so hard to create dynamic inter- and multi-generational living and sharing. Early learning centres and nurseries in the same place as a nursing home bring the generations together in lessons of insight, shared respect and knowledge which benefits the whole of our society. We need to do a lot more to foster such connection and inter-relatedness so that older age ceases to be feared and stops being a ghetto of exclusion.

3. The pandemic has highlighted that care homes at their best are places which put not just the resident and her or his needs at the centre, but which have a critical role for family, friends and others. In the future regardless of legislation such as Annes Law there needs to be a much greater focus on seeing family as co-carers and supporters in the lives of those they love. At the same time there needs to be an enhanced role and value given to volunteers and their resourcing so that we acknowledge that for too many people there is no family or friend to visit. For those who want to and need to there must be opportunity for relationship and togetherness.

Care homes must be places where people are enabled to receive appropriate clinical and social care. A lot is being done at the moment to redress the imbalance evident before the pandemic – and during it – where the health care needs of those who live in our care homes had become a lesser priority and focus. Just because you move into a care home does not mean that your rights to access the same level and quality of clinical care and treatment should be diminished. Equally true – and this will be a real challenge – we need to make sure we do not turn our care homes in the shadow of Covid and its tragedies into miniature clinical settings. A care home is first and foremost a place where someone lives, loves, cries and laughs in community with others – it is only secondarily a location where many of the residents have significant clinical and medical needs.

There is a very real prospect that if we get the balance between social care and health care delivery right in a care home then we will mirror the best of what integrated health and care services could and should be – a seamless pathway of experience with consistency of quality social care and a continuum of high-level clinical care.

As part of all this care homes given the particular needs of their population have the prospect of building on the excellent specialist skills that already exist in the sector in terms of the care and support of people living with all stages of dementia, and in the delivery of focussed excellent palliative and end of life care. This of course does not happen without the skill and support of a workforce trained and nurtured in such clinical and social care specialisms

5. As part of my vision for the future I know that care homes must cease to be the sector which every year holds out a begging bowl to appeal for resource – often when other priorities and sectors have spent already limited finances. As part of the work already under way all parties have to seriously examine whether or not the monies we spend on the care and support of our most important citizens, and on those who work with and for them, and the organisations who deliver care – is at all adequate. I believe it shamefully to be wholly inadequate and reflective of an ageist view which considers maintaining people in older age worthy of expense but holds back from enabling older people to exercise the fullness of the rights held by others. I would cite the failure to allow care home residents to have personal budgets under Self-directed Support legislation as an example of such a bias.

We cannot continue to deliver care which is affordable when we all know that whether it is a care home or homecare service, we are not delivering care which is necessary and needed, dignified and rights based.

All of this involves our society having a serious, inclusive, and grown-up debate about how with a declining working age population and thankfully more and more people living in to older age we are going to pay for all this. In Scotland we are simply not having those conversations at a sufficiently strategic and senior political level. What we are doing is engaging in Elastoplast initiatives which stop the bleeding but do not heal the wound and which store up problems because they are not thought through but reactive.

6. The future of care homes is intimately linked to the future of the social care workforce. Unless we are able to attract the right men and women to work in the sector, unless we collectively as a whole society start to value the work of social care, to create real and meaningful career pathways, then all the edifices of our imaginations and aspirations will but be built on sand.

We need to adequately reward and value the workforce in our care homes in a way that values them as individuals intrinsic to contributing to maintaining the very fabric of our society – we currently are far from that treatment.

Associated with such value is the need for all involved in health and social care to properly bestow respect and professional regard on the care home workforce. This is palpably not the case now and for some time, be that the diminishing of social care nursing or the lack of appreciation of domestic and catering staff in a care home. All have a valuable role. All are skilled, dedicated professionals who deserve less scrutiny and more support, less oversight and more autonomy.

This all of course demands resource not least to enable the continuous professional development and training of these critical frontline staff. Excellence and quality do not come about on a budget approach to care.

7. It is also very clear to me that if we are to have a national model for care homes, in whatever form that takes, then such a model needs to be flexible and appreciative of the very diverse and different nation we live in. What works in Stranraer may or may not work in Stornoway, but we should not presume it does. The last few months have seen a saddening demise of some high quality rural and remote care home services simply because they are no longer sustainable or are unable to attract staff to work in them. Care has to be local and approximate. People need to be supported in the places they belong to and have connection with. Yet we are in danger of people having to travel dozens of miles in order to visit residents and family because there is no local care home. That is wholly unacceptable. We urgently need to do something to rescue the truth that care needs to be local and that care homes should be in communities proximate to our people not detached from memory and association.

Part of this involves the need to recognise that significant financial investment is required to ensure that care homes are of a right size to enable people to possess a sense of home and space. It is clear the current estate is not addressing the needs of all.

7. Already today but even more so into the future care homes will be required to be locations which use cutting age, person-led and citizen-controlled technology. It will be critical that the use of technology is not – as sadly is being seen elsewhere in some parts of the world – premised on the basis of saving money and reducing workforce demand, but rather that technology serves to enhance the personal and human rather than limiting or replacing both. Data systems for instance should be able to evidence practical benefit which values individual privacy and autonomy, and which is as less burdensome as possible.
8. Anyone who has visited a care home in the years before the pandemic will know that they are vibrant, active and lively environments, with loads of activities and celebrations. These are places where creativity is discovered or renewed, refreshed or illuminated. Care homes are places where the artistic and poetic, the musical and the dynamic of touch and sense, of the arts and creativity in general has the potential to be enhanced and celebrated. But yet again this needs to prioritised and resourced not as an occasional extra but as fundamental to the creation of an environment which is all about living rather than surviving, all about discovery rather than maintenance.
9. Lastly but certainly not least care homes must be places where human rights are central and core – not as something taught and as a tick box exercise but as a way of being in relationship with others, especially in times of challenge and hardness, which is so automatic and natural that it infuses the air of the place. It is indeed important that every worker in a care home is trained in human rights but equally as important that everyone in the space knows what human rights mean in application especially in situations of dispute and disagreement. The nature of living in community is learning to live with divergence and difference and human rights-based approaches are intrinsic and fundamental to enabling that to happen.

But of course, all visions are illusory unless they are worked for which Simon Armitage the Poet Laureate puts so well.

A Vision

The future was a beautiful place, once.
Remember the full-blown balsa-wood town
on public display in the Civic Hall.
The ring-bound sketches, artists’ impressions,

blueprints of smoked glass and tubular steel,
board-game suburbs, modes of transportation
like fairground rides or executive toys.
Cities like dreams, cantilevered by light.

And people like us at the bottle-bank
next to the cycle-path, or dog-walking
over tended strips of fuzzy-felt grass,
or model drivers, motoring home in

electric cars, or after the late show –
strolling the boulevard. They were the plans,
all underwritten in the neat left-hand
of architects – a true, legible script.

I pulled that future out of the north wind
at the landfill site, stamped with today’s date,
riding the air with other such futures,
all unlived in and now fully extinct.

From:  Tyrannosaurus Rex Versus The Corduroy Kid

Copyright ©:  Simon Armitage

 

I hope like me many of you will have the opportunity to enjoy this holiday weekend. Today is an unusual day. It is the Saturday between the Christian feasts of Good Friday and tomorrow’s Easter Sunday. It was not until a trip to Europe many years agi that I realised that for many on the continent this day, Saturday, carries a meaning and significance all of its own. It is the waiting day, sometimes called the ‘day of harrowing’; the opportunity for some traditions to strip their church altars bare of adornment to symbolise waiting and loss, or to dress statues and altars in black to express the in between time of mourning.

Personally, I value the idea of having a space in our living between periods of pain, loss and emptiness, and what for some might be times of restoration and renewal. You cannot really go from depth to height in one step, there requires to be a journey and a movement which for some might be speedy but for many will take a good length of time.

In the week that has just passed I cannot but think of the necessity of reflection, of taking time to work through the pain of our experience, to try to make sense of it and to start the faltering steps to re-orientation and new direction. It is a necessary act of human living; it is part of the pattern of the rhythm of our days. It is perhaps why with others I have been shocked by the casual ability of Westminster political leadership to fail to appreciate the enormous hurt caused by the fact that some were partying when others were mourning, some were supping wine when others were full of tears. But any comment on political morality seems increasingly to be a waste of both breath and energy.

This particular weekend, apart from its religious and cultural significance, is also a transition time in a different way. On Monday coming the last remaining elements of significant public restrictions around Covid19 will be removed in Scotland. Indeed, in the last week I have held many a conversation as I have been out and about with people who have expressed happiness and anticipation at the thought that from Monday, they will no longer have to wear masks in various locations and places. At the same time, I have held conversations with those whose perspective is very different.

We are in a moment of transition, from one phase of the pandemic and our response to it to another phase and to ‘living with Covid.’ But hurtling from one state to the other without appreciating the need for reflection and journeying would be unhelpful and so I offer some thoughts here about the need for sensitivity.

Sensitivity to fear. I know many people who are really frightened about what the next few weeks might bring as more and more people remove masks or only wear them in particular circumstances. These include many individuals who fear being imprisoned in their own homes because of the high risks they face because of underlying and significant health conditions. Their fears and anxieties cannot just be ignored and pushed to the side – they are real. Debates about the efficacy of masks in declining pandemic prevalence will do little to assuage the very real concerns that people have. In some sense the masks – designed to protect – have become symbolic and totemic of the protection from risk for so many. Whilst there has always been a risk of misplaced confidence simply because a mask is worn, it has been something which has helped people physically to feel safer and protected as they have don and doffed their ‘armour’. The removal of such protection whilst waited with anticipation by many, will feel like the stripping away of protection from others. We need to be sensitive and appreciative of those fears and concerns. We need to work with individuals not from a position of ‘pandemic’ superiority but one that is open to accepting the concerns, fears and anxieties of others, and which may require us to adjust our behaviours to meet those fears. We will not move forward as communities if we marginalise those who wish to continue to wear masks.

Sensitivity to distress. The social care sector has come through real harrowing pain in the last two years, both in our care homes and in our communities. Individuals and organisations have changed forever and whilst in the pandemic response we have witnessed the best of our humanity on the part of frontline health and care staff it has not been without cost. The data that we read in Government updates, which in the past week has moved from the Government website to Public Health Scotland – itself an indication of a transition to a new way of doing things – tells us part of the story. It is terrifying enough. It tells us in its raw form that we still have many hundreds of health and care staff isolating because they have Covid. It tells us of a worrying level of reinfections.

What it does not tell us is that we have the highest levels of absence that the social care sector has ever seen. This is both because of Covid, but much more so because of other health conditions and sickness and high levels of vacancy. The social care workforce is exhausted beyond measuring, it is broken and diminished in large part, it is running on the last drops of emptiness. We have a workforce fatigued and exhausted by the constant demands of being on the frontline for such a long period of time. In this space between where we have been and where we want to go, we need to do a lot more work on supporting the mental health fatigue of our workforce. We need to be sensitive that we will not be going back to where we have been, that people will need time and space to recover, that organisations will need real investment in ensuring that they can support their staff.

Sensitivity to change. Covid has changed many of us but none more so than the thousands of people who are suffering from Long Covid. In an illuminating article this past week Prof Devi Sridhar has highlighted the belief of many that we will be dealing with the impacts of Long Covid for many years to come. Like so many others I know friends and family who feel that life will never be the same because they are living with the physical effects of this most pernicious disease. There is just so much that we still do not know about Long Covid and I am not at all convinced that as a whole system and society that we are sensitive to the scar Covid has inflicted on our community. My particular focus and concern as we transition to new ways of dealing with the virus is that there is need for urgent work to identify the number of those working in social care who are living with Long Covid and to appropriately prioritise their needs. I simply do not think we have done this to date with sufficient consistency and thoroughness.

Sensitivity to grief. Tens of thousands of people have been affected by grief and loss as a result of Covid, both directly to the disease and by being unable to be with loved ones at times when they would have wanted to, whether in care home, hospital or at funerals. There are thousands who are today doing the work of grief, who are in the in-between time where acceptance of loss seems so far away and where any hope of a different way of loving seems all too forlorn. We need to give people time to grieve. I am ashamed reading so much of the commentary of the last few days that there is a presumption that people just need to move on, to start their lives again, to ‘forget about Covid and its cost.’ A society that fails to nurture loss fails to comfort its people. We have too many friends, neighbours and family members who need the consolation of comfort, the solidarity of our presence and support, as they grieve through these days. That will not change simply because we are moving on with the pandemic and with life. If anything, the desire of politicians and commentator, to brush the pandemic under the carpet and re-prioritise will only exacerbate the sense of abandonment that many feel today. Sensitivity to grief necessitates real action to support the bereaved, not just warm platitudes.

Today I am going to spend time thinking about the areas of my life where I need to better nurture sensitivity, in the in-between moments, on the verge of a new stage of the pandemic, I hope we can all find such a time. Sensitivity is not just the awareness of each of our senses it is the discovery of a new way, a deeper insight, a more profound being in relationship.

The Bangladeshi poet Khairul Ahsan captures this well:

 

Sensitivity

Men and women seek to hide

Their weaknesses, their frailties

An inbuilt mechanism seeks to provide

An excuse for all their infirmities.

 

Men and women hide in the deep

Of their own sensitive mind,

Some secrets which they keep

And guard like sentinels of some kind.

 

Men and women crave for a touch

A delicate touch, soft, slim and smooth,

On their frail minds, if not so much

On their skin, at old age or at youth.

 

When their heart is touched by words

Or eyes that translate feelings into caresses,

Their spirit soars high in the sky like birds,

Yet they shrink when love offers its embraces.

 

Donald Macaskill

A few weeks ago, I gave a talk at a conference on social care and technology. Well in truth I recorded the talk because I was unable to attend in person because I had Covid. It was entitled ‘Moving from person-centred to person-led: How can technology play a part in building a more inclusive experience of care support?’

In light both of thinking about that talk and in reflecting on the pandemic experience of social care in Scotland, I want in this blog to broadly seek to map the journey to date in terms of personalisation and the distance we still have to travel to what I would argue should be the aim of all social care support, namely a person-led approach in practice which enables personal autonomy and which is seen in practice as much as in values, policy and political rhetoric.

The concept of ‘person-centredness’ is not new in fact it is in some sense, I would suggest, quite dated. It found its strength and real dynamic in the disability civil rights movements in the United States and Canada in the 1960s and 70s, but its origins go even further back. Faced with thousands of returning workers and the huge upheaval caused to commerce and manufacturing by the Second World War, many American industries in the 1950s began to think about their future direction of travel and how they could better glean the experience and skills of their workforce in charting that future. They developed a range of models which helped to put the worker in the driving seat of some of the largest US companies – at least in theory if not in practice. Importantly what developed were a set of models and approaches to planning and to enabling worker voice to be heard which were the most inclusive, creative and dynamic that had probably been seen in that environment.

From that industrial context, in the 1960s and 70s we began to see the use of some of these models, and their thorough re-adaptation by the inclusion movement as part of the disability civil rights campaign. Faced with the much campaigned for closure of long-stay institutions and asylums in the United States and Canada, advocates began to develop tools and models which would enable the people most involved by the closures, the people with learning disabilities, to be the centre of planning and re-design for their future lives. If inclusion was to mean anything it was not just to be the changing of an address and the staff who supported the individual, it was to be the re-orientation of a whole life as well as the manner of that care support. It was to be about putting the person at the centre of their lives.

The inclusion movement developed models such as PATH and MAP amongst others with an emphasis on literally putting the person at the centre of whole scale planning sessions, which were creative, dynamic, graphic, colourful and not dependent on pre-determined solutions and outcomes. The emphasis was on achieving what the person wanted, of dreaming big and charting the steps to implementation in collaborative and mutually agreed ways.

You can read a lot about the story of person-centred planning and personalisation both in the United States and in our own country where these philosophies became influential in social care delivery in the 1980s and 1990s. They deeply influenced the then emergent independent living movement and are at the root of our later social care legislation. I can commend Personalisation and Human Rights.

The radical new dynamic of inclusion and re-prioritisation which person centred planning tools evidenced can be best seen in a model like PATH and its associated principles, which in summary stated that:

• The control is with the focus person and their advocates
• Universal needs are as important as medical needs
• The focus in on an individual’s gifts and aspirations, not individual needs and deficiencies
• There is a future orientation
• There is a commitment to address conflict openly and honestly
• There is a commitment to reach a consensus for action
• There is a willingness to come up with non – traditional solutions.
• This is about inclusive process not pro forma
• Such planning will not produce standardised and predictable outcomes.

Anyone involved in Scotland’s own closure of large-scale institutions over the last few decades will know well the benefit of such planning which put the person at the centre. It was a process that demanded much of professionals and the need for them to re-conceive their own role in the dynamic of commissioning, contracting, delivery and evaluation of care support.

It is therefore maybe not surprising that the emphasis on ‘personalisation’ and person-centred planning was at the heart of the developing social care legislation which resulted in the Social Care (Self-directed Support) (Scotland) Act 2013. It is there that we see an emphasis on principles of informed choice, participation, collaboration and personal control. It is there, in some of the most progressive and dynamic legislation of its type we have ever seen, that we had the potential of a real and radical control by the individual citizen. This control was not just around their planning of support, but the managing of that support, the budget for that support, and the evaluation of care support.

The potential of self-directed support was immense. The Independent Review of Adult Social Care (IRASC) and other equivalent reports and audits have shown why this legislation has in large part not been the success we all desired in its implementation. Feeley highlighted that person centred working was critical – but he also showed the way in which there were massive implementation gaps – vested interest, power dynamics imbalanced, retention of control, failure to grant true autonomy and give real choice.

Elsewhere, not least in health environments, the emphasis on person or patient centredness has become almost a given, even without the robustness of the principles which are evident in the term’s origin.

So where are we now in social care in Scotland? I have long argued that social care support must as a system and model embed and foster the autonomy, control and direction of the person being supported, rather than as it is now, overly directed and influenced by commissioner, contractor or provider.

But I think we have now reached a stage where we should recognise that the logical consequence of both policy and practice is that we need to move away from person-centredness to models and approaches which are truly and fully person-led. The individual person needs to be fully autonomous within the care and support relationship dynamic. They need to not only become the budget -holder (though it would be great if everyone even had that choice!) but they need to become the director and owner, not an actor and passive recipient of their lives; they need to truly have control, to really become the initiator, originator and creator of their care support.

Social care has become a transactional dynamic where the system has been elevated above the person, where the rhetoric and policy speak of person-centredness is given a nod, but the reality is the individual citizen has become wholly passive in too many contexts and has diminished autonomy.

I would suggest what we have witnessed in the pandemic in terms of a governmental, public health, clinical and social care response has further perpetuated this stripping away of autonomy and individualism from the person. We have made decisions and interventions which have addressed the need of the collective and group (as we used to in the worst examples of institutionalised care) and have failed with the challenging requirements of truly person-centred, person-led, autonomous intervention. In this sense I feel we have failed the individual’s distinctive, personal human rights of control, choice, autonomy, and self-decision.  Perhaps none more so than in our care home response. We have addressed the needs of a collective community on too many occasions at the cost of individual resident control, voice and choice.

I am not the only one who has been suggesting that there is not only a distinction between person-centred and person led support but that we need to move as a whole sector to truly putting the individual in the lead rather than just at the centre of receiving care and support. Jenni Mack in an excellent blog articulated this well by talking about her care support:

‘How is this different to person centred? Well, person centred would be reading care plans and seeing that Mr A used to have toast with marmalade every morning without fail prior to moving into your care and assuming that this will be his preference now. Person centred care would show that you showed an interest in him and provided (what you thought was) his preference. The one error in this was that you didn’t ASK him. Perhaps his late wife made this breakfast for him in the past and he ate it without a grumble so as not to hurt her feelings and he would actually love some cornflakes. Perhaps he DID love this breakfast but now his taste buds have changed and he finds the marmalade bitter. Perhaps he just fancies a change. So the moral of this is, communication. TALK to people, and NEVER make assumptions, even if you believe you know them well. Perhaps Mr A will continue to eat toast with marmalade for the rest of his days, but maybe just maybe he’ll branch out to new tastes and really enjoy them. We are never too old to try something new!’

Person-led care support is what, I would contend, not only the individual but the entire system requires. So let us stop talking about person-centred care and support and instead really put the individual in the lead, not least in the creation of a new National Social Care Service. Person-led care support denotes a transfer in the power relationship from the system to the individual, from the model and process to the citizen and person.

Indeed, you could argue some of the chuntering from the usual suspects against some of the IRASC ideas –is that there has been concern of a loss of control, autonomy, and power, including finance and political influence not  from the person in receipt of support but from other stakeholders.

The world has changed – people want control – and not just a passive say but full voice and control of health and care decisions – that’s after all what they have in all other areas. We need to catch up – social care is ready for that journey – it is entrepreneurial and dynamic.

The age of person-led care support should be replacing the chat about person-centredness. Autonomy is not easy for those providing support or those receiving care, but it is the necessary requirement of a social care system come of age.

The uncomfortableness of the autonomy and power dynamic is one we need to own and accept if we are really going to radically transform social care in Scotland. That place of discomfort is where we need to be if we are to enable autonomy, dignity and rights to be at the heart of the care support dynamic.

The American poet David Romtvedt writing of a very different context expresses both the discomfort of autonomy but also its treasure.

Autonomy

Now at three, my daughter answers every question

beginning with “Would you . . . ?” by saying, “No.”

And every gesture I make toward her she considers

an act of aggression. She is fierce in defense

of her integrity while reminding me many times

each day that “I love you, Dad.” And I understand.

I love her, too, and would stand aside as, like a flower,

she blooms. When I was ten, my father made me sit

outside in full view of the neighbors and play German polkas

on the piano accordion. It was hot, and both my body

and the large black musical instrument became slick

with sweat. I tried to play quietly, fantastically

hoping no one would hear, and my father screamed,

“Louder, play louder!” I felt I could not bear

my embarrassment and impotence, my father’s complete

power over me. Yet I did bear it. I bore it as I had to.

Such a small thing: to play the accordion for one’s father.

But it was not small. Those moments of childhood return,

and my stomach is a dense knot of hatred and shame.

My sad father, wanting happiness and ease, shaking

with exhaustion when he came home from his labor,

called me to bring the accordion outside and play

while he rested, and I bitterly did so, and he knew.

But he could not change it, could save neither

himself nor me. So you see how it is that I am elated

when my daughter says no again, her voice a single petal

that I must not try to catch as it tumbles to the ground.

Autonomy | By David Romtvedt | Issue 241 | The Sun Magazine

Donald Macaskill

Today is World Purple Day. It is also known as Epilepsy Awareness Day and is celebrated annually on March 26th. In 2008, eight-year-old Cassidy Megan from Canada decided she wanted to help raise awareness for people with epilepsy and to make sure no one affected feels alone. She named her idea after the colour of lavender, the internationally recognised flower for epilepsy, and Purple Day was born! Sadly, only Canada officially recognises the day yet it is growing in popularity across the world. See https://www.purpleday.org/

The purpose of the day is to raise awareness about the brain disorder that is epilepsy. Epilepsy is defined as the tendency to have repeated seizures which start in the brain. It is also an opportunity to increase understanding of the disease and to eliminate the fear and stigma which is often still around it.

In Scotland according to the national body Epilepsy Scotland, children and older people are most at risk of developing this common serious neurological condition but anyone can develop epilepsy at any time, and eight people a day in Scotland do. These are huge numbers and yet I suspect many folks are not aware of this. Indeed approximately 55,000 people in Scotland are living with epilepsy, making it one of the most common chronic neurological disorders. It is therefore more common than people in Scotland who are living with Multiple Sclerosis, Parkinson’s, Cerebral Palsy and HIV combined.

Epilepsy Scotland do a great deal of work not least in campaigning for increased clinical and community support, increased training and expertise and critically the improvement of data collection, so we get a better picture of the extent of epilepsy and its impact in modern day Scotland.

I share a belief together with many in the field that more needs to be done to better support and make others aware of the impacts and extent of epilepsy in older people. I remember the first time I worked in a health and care environment and someone living with epilepsy had a ‘seizure’  – the alarm, uncertainty, and anxiety of those around was deeply regrettable including from myself. I am not convinced a few decades on that we have moved much more forward to an informed and inclusive approach.

Epilepsy Scotland have a hugely helpful website with fact sheets which can answer some very basic questions. Some points to note (amongst many) include:

• No two people experience epilepsy in exactly the same way. For one person, epilepsy can mean complete seizure control on medication. For another, it can mean uncontrolled and frequent seizures despite medication.
• A diagnosis of epilepsy can have life-changing consequences. These can include the loss of a driving licence, reduced independence, and disruption to employment. It can also affect someone’s education and employment prospects, and lead to an increased degree of social isolation and depression.
• A seizure is a sign of temporary disruption to the brain’s electrical activity. If there is excessive electrical activity in the brain it can cause a seizure.
• There are around 60 different types of seizures and epilepsy syndromes, and a person can experience more than one type. Seizures vary depending on where in the brain they are happening. Some people remain aware throughout, while others can lose consciousness.
• Seizures are generally divided into two main types, focal seizures and generalised seizures.
• As many as one in 20 people will have a one-off seizure in their life. However, this does not mean they have epilepsy.

There is a growing volume of research which argues that there is need for a particular focus both in policy, practice, education, and research on the impacts of epilepsy in older age.  One of the most significant pieces of research is that published by Prof A Sen in the Lancet in 2020 Epilepsy and the elderly Lancet revised final.pdf (ucl.ac.uk). It clearly states that as more and more individuals are living longer and into older life the occurrence of epilepsy in the older population is likely to increase. This they rightly argue requires substantial work around the impacts of particular pharma interventions on this population and argue that more work needs to be done on the range of cognitive, psychological and psychosocial comorbidities as well as the impact that epilepsy may have on an older person’s broader social/care network. I would add that there is considerable work needed to be undertaken on the specific inter-relationships with dementia and delirium especially amongst older women.

The lack of robust, national and strategic research on epilepsy ij the older population is yet another illustration of the extent to which on the one hand epilepsy research is under-funded and on the other the lack of priority given to health impacts on older people in general, a latter point I have frequently made in this blog.

We need to get better at supporting older people to live with epilepsy whether it is a condition developed during older age or into older age. That involves those with a particular focus on older people’s care and support becoming much more aware, better informed and more skilled at caring for, supporting and enabling people with epilepsy whether in homecare or care home environments. I strongly believe there needs to be a national dedicated resource and effort made to address the experience of so many older Scots living with epilepsy, and to reduce some of the concerns and alarm, lack of knowledge and stigma which can result in inappropriate behaviour, language, practice and response.

Today as World Purple Day should be used as an opportunity not only to raise awareness but to ensure that action results in order to reduce yet another area of health inequality for older Scots.

As regular readers know I often finish a blog with a poem and it would simply be too easy to repeat my often used Jenny Joseph classic ‘When I am an old woman I am going to wear purple.’ But there is a similar poem which celebrates the passion and unpredictability of older age by the irrepressible Dorothy Parker which I leave you with. It like the choice of lavender by young Cassidy Megan is about turning the tables of expectation, challenging stigma and limitation, and about recognising that life continues until it ends. We owe it to those young and old who live with epilepsy to try to create a country where we don’t just wear purple for a day but change the way we support one another to live our lives to the fullest possible extent.

The Little Old Lady in Lavender Silk

by Dorothy Parker

I was seventy-seven, come August,

I shall shortly be losing my bloom;

I’ve experienced zephyr and raw gust

And (symbolical) flood and simoom.

 

When you come to this time of abatement,

To this passing from Summer to Fall,

It is manners to issue a statement

As to what you got out of it all.

 

So I’ll say, though reflection unnerves me

And pronouncements I dodge as I can,

That I think (if my memory serves me)

There was nothing more fun than a man!

 

In my youth, when the crescent was too wan

To embarrass with beams from above,

By the aid of some local Don Juan

I fell into the habit of love.

 

And I learned how to kiss and be merry- an

Education left better unsung.

 

My neglect of the waters Pierian

Was a scandal, when Grandma was young.

 

Though the shabby unbalanced the splendid,

And the bitter outmeasured the sweet,

I should certainly do as I then did,

Were I given the chance to repeat.

 

For contrition is hollow and wraithful,

And regret is no part of my plan,

And I think (if my memory’s faithful)

There was nothing more fun than a man!

 

From The Little Old Lady In Lavender Silk by Dorothy Parker – Famous poems, famous poets. – All Poetry

 

Donald Macaskill

I’ve written before in this blog about the fact that English was not my first language and that in my early days at school I struggled with language and in part as a result lacked confidence both in the use of English and as a result in some of the subjects I was taught in early primary. I always felt that I wanted to finish every sentence with a verb or adverb just as in Gaelic!

That lack of confidence began to change because of the inspiration of one or two individual teachers not least those who showed me that the world didn’t have to be boundaried by the tightness and restriction of prose, by the starchiness and structure I then felt it imposed, but that there was a dimension of the imagination and a world of possibility which was the realm of poetry. From very early on poetry became my love, energy and inspiration. It has thankfully remained so for most of my life since.

On Monday we will be celebrating World Poetry Day. It is 21 years since it was established by the United Nations Educational, Scientific, and Cultural Organization (UNESCO) in 1999. Two days later- the 23^rd March will be the second anniversary of the Prime Minister’s speech which that evening put the nation into lockdown as we confronted the unknown fear and anxiety of a novel coronavirus for which we had no vaccine and about which we had in relative terms little knowledge.

I remember that evening well, and after all the organisation and calls, all the emails and bits of work I had to do, as I would on quite a few evenings after and still do, I took myself away and sat in a quiet room with a book of poetry. Poetry became for me both an escape, a consolation, a comfort and a challenge. I know I have not been the only one who has discovered or re-discovered a love of poetry during the period of the pandemic, and no doubt as I reflect in a moment of peace on Wednesday the events of the last two years, I will again do so with the words of one or more poets in my head.

I’ve often sat down and wondered why it is that poetry matters so much to me. Undeniably it is in part tied up with the discovery as a primary school child that in poetry that words and language were malleable and playful, that you could use and do with them as you wanted and wished, and that rules could be broken without meaning being lost. Poems were a form that offered freedom and possibility. But there was more. Probably it is poetry’s ability to describe intense emotions which is what rooted the genre in my soul and psyche. I think it is poetry’s ability to paint truth and insight in word and rhythm that for me is the very essence of poetry, and I think that’s why I still believe it has something to still teach me today not only about the pandemic but about how I need to live in the days and years ahead.

It is generally acknowledged that the first poems appeared in ancient Babylon some 4,000 years ago in the “Epic of Gilgamesh” which coincidentally I would later study at university. But in all likelihood probably from the moment someone used sound to structure sense, words to offer dream and meaning, poetry has been in existence both orally and in written form. The genre is so diverse from Shakespearean sonnets to free verse, from haiku to rap, from song lyrics to limericks. Poets have found a way to tell something of the story of their times, of their communities and society. Poetry has stretched our imagining into new visions, has helped to express the depths of pain and loss and has soared the heights of love, desire and passion. There is quite literally a poem for every emotion and feeling, every season and moment under the sun.

One of the reasons it appeals is that for me poetry is inherently rhythmic and musical, it is dynamic and energetic. I need to either hear a poem spoken aloud or hear it inside my head because it has an energy that struggles to free itself from the confines of a page into the air of my imagination. Whether it is an Angela Gorman, or a Benjamin Zephaniah or my all-time favourite Maya Angelou – poetry can become a performance which is an art in its own right; an experience separate from the words you take inside yourself. A good poem takes me on a journey whose destination is unknown but whose companionship is assured and confident.

I know I was lucky. Unlike so many children who have been put off poetry by the way it was taught – I was the opposite – I was inspired because as luck would have it I had teachers who brought poets to school, to inspire, encourage and enliven bored school children. I think every school should have a poet, whether in residence or not! Poetry helps to improve the ability of children to express emotions that might be locked in and imprisoned deep inside them, to find new rhythms and meaning, new insights and freedoms. It certainly did for me.

Poetry allowed me during the pandemic to see the world through different eyes, to see possibility rather than just pain; to find words to express my fear and my deepest sense of loss and sadness. I could never have found the energy which has kept me going were it not for the fact that someone before me, alongside me, has done that job for me and has gifted their insights through their poetry to make life better and richer.

Years ago when I was visiting a care home where someone I knew was a resident I came across Jean who I later discovered was a retired English teacher. She was living with what I would now recognise as advanced dementia. She had lost all memory of family and loved ones, had forgotten basic things and the knowledge of what actions to take in particular circumstances. To all intents and purposes, she required the most basic level of personal care and support. But… Jean continually and assuredly recited poetry to anyone who would listen. And I did. And from those lips tired of speech, having lost recognition of love, came tumbling words in rhythm and beauty, consistent in memory and recall. She was a marvel – when everything else had left her, her comfort were the words of the legion of poets she had gathered into her heart over decades. For me in that moment the sheer power of poetry to own and occupy our hearts was made visible.

On the night of the 23^rd March 2020 I read words of one of my favourites, the Irish poet Derek Mahon, whose work I have shared here before. It was a night of anxiety and the unknown was palpable, and the words of two others came to my mind. The first was a very ancient piece from the medieval mystic Julian of Norwich who wrote in the face of both danger and challenge, ‘And all will be well”, “all manner of things shall be well”; the second the words of Bob Marley. I grew up with the music of Marley ringing in my ears every time I fell asleep such was my late brother’s fascination with him. Indeed, my brother’s gravestone has inscribed on it the words, “Don’t worry about a thing’ Cause every little thing gonna be all right.’

I turned to the poetry of Derek Mahon. Frequently challenging and uncomfortable and as I read it at different points during the pandemic it seemed at times almost cold and then at other moments reassuring – but that is a mark of great poetry it speaks differently at diverse times and in distinct circumstances.

Poetry does not have all the answers it just provides us with the silence to make sense of the sounds and the sounds to make sense of the silence. It takes us further along the road and it is usually a journey worth taking.

Everything is Going to be All Right

“How should I not be glad to contemplate

the clouds clearing beyond the dormer window

and a high tide reflected on the ceiling?

 

There will be dying, there will be dying,

but there is no need to go into that.

 

The poems flow from the hand unbidden

and the hidden source is the watchful heart.

 

The sun rises in spite of everything

and the far cities are beautiful and bright.

 

I lie here in a riot of sunlight

watching the day break and the clouds flying.

 

Everything is going to be all right.”

 

Derek Mahon, from Selected Poems

Poetry Corner – Derek Mahon ‘Everything is Going to be All Right’ – Infinite Harmony

 

Donald Macaskill

Along with many others I signed a letter this last Thursday which was sent to the UK Prime Minister and the United Kingdom Government. Key organisations working with and for older people throughout the UK came together to call on the Prime Minister to take further action to support older people in the Ukraine, and those seeking refuge in other countries, and to ensure that our response to the escalating humanitarian crisis takes account of the specific impacts and challenges older people will face.

As we have witnessed the increasingly distressing images of war from Ukraine many of us have felt helpless as we have heard the stories of children, young people and women, to say nothing of the men staying behind to fight and defend. A voice rarely covered in the stories has been that of older people and those with conditions which limit their ability to flee and escape easily.

The joint letter sets out the action required, highlighting that many older people in Ukraine will be trapped and isolated in their homes, with limited support available from families, friends and neighbours, as they will be unable to make the treacherous journey towards safety due to limited mobility or ill-health. As well as expressing real concerns over food, water, and other supplies, we have also called in the letter for the removal of visa restrictions to ensure that more older people are able to find safety and sanctuary in the UK. This includes a call to:

• Use all possible avenues to ensure that humanitarian access is given to all civilians in Ukraine, including older people.
• Ensure that explicit attention is given to the needs and rights of older people in Ukraine and surrounding countries in preparing and implementing the humanitarian response with other national governments and international organisations.
• Ensure older people in Ukraine or those seeking refuge in neighbouring countries have access to appropriate medical supplies, medication and mobility aids through donations, funding or the sharing of technical expertise.
• Remove the visa requirements on Ukrainians fleeing the war to ensure that older people without relatives in the UK are able to seek refuge here.
• Consider the needs and rights of older Ukrainians who are seeking refuge in the United Kingdom and what support they may need upon arrival.
• Continue to provide support to charities involved in the humanitarian response including HelpAge International and Age International to ensure that they and their partners can provide the crucial support that older people in Ukraine desperately need.

Can I also draw attention to the amazing work of Age International who have set up a dedicated fund to support older people in Ukraine. Please consider giving a donation and you can get more information at https://www.ageinternational.org.uk/donation/ukraine-appeal/#step1

A colleague wrote to me yesterday to highlight that the national flower of Ukraine is the sunflower which has become a sign and symbol of hope amidst the trauma. In a lovely gesture his Edinburgh company Home Instead are giving sunflower seeds to people to plant hope into the hard ground, and also giving a donation on their behalf to  Age International.

I have often said in this blog and elsewhere that the mark of any civilised society is the way in which those without voice are heard, that we witness equality of treatment and response regardless of age, and that we recognise the particular and especial needs of those who are frail, elderly, and old.

Those sentiments are very much in my mind as this weekend we mark several anniversaries of the Covid19 pandemic.

Two years ago the World Health Organisation (WHO) officially declared COVID a pandemic and in that time an estimated 6 million plus people worldwide have died from COVID-19, while nearly 448 million cases have been recorded. The vast majority of those who died were older individuals but more positively it is estimated that almost half a million people aged 60 plus were saved due to vaccines against COVID-19.

Today also marks the two-year anniversary that many care homes went into voluntary lockdown in Scotland in response to the pandemic and evidence from Europe and tomorrow (13^th) two years ago saw the publication of Scottish Government Guidance on managing the coronavirus in care homes and other settings.

A lot of hurt and pain, sadness and regret has happened since. Too many lives have been lost and to many memories have not been shared. Too many people have spent their last days in hospital or care, both from Covid and other conditions, without the presence of those they love beside them. The public inquiries – including the UK one whose terms of reference have been published this past week – will, I hope, give space and opportunity for people to tell their story and share their experience as well as to hear an account of clinical, political and system response during the last two years. But for so many the pandemic even on this two year anniversary is far from over.

In the last week right across the United Kingdom we have seen a rise in cases of Covid, a rise in hospital and ICU admission, a rise in the number of care home staff and residents who are contracting the virus and sadly a rise in the number of care home residents dying from the virus. These are hard times.

On the one hand we want all of us to nurture the restoration of normality not least in terms of care home visiting and access to families recognising the huge damage that has been done by disproportionate exclusions, by limiting the quality of life of residents in such drastic ways, but on the other there is a growing fear about what the virus will do in the next few weeks and months. Will it ‘burn itself out’, will there be diminishing impact, or will there be increasing numbers of cases, more lockdowns, more damaging isolation periods insensitive to the particular needs of residents, families and staff? Will there be a new wave and if so, will it as some argue be less of a threat or will we see a strain developing which escapes the protections we have. This last week we have seen the start of a fourth vaccination round which most would agree is very necessary as increasingly those admitted to hospital are older people whose immunity and protection is depleting following their 3^rd vaccination some months ago.

I do not have black and white and hard answers to most of these questions and suppositions, but as we approach the second anniversary of so much pain, I am very aware that we need collectively to not just learn the lessons of the past but to make sure that those lessons alter our actions into the future.

No more lockdowns in the name of infection, prevention, and control, which are disproportionate, insensitive to the trauma which isolation causes, and blunt in its use as an instrument of protection.

Let us re-define what we mean by an ‘outbreak’ so that living with the virus means that we will not constantly see the cycle of infection leading to perpetual exclusion and isolation.

Let us remove the use of masks to all but a minimum of high-risk situations.

Let us use testing in the short term as a safeguard and be prepared both to increase but also critically to decrease its use.

Let us urgently get Public Health advice which is reflective of reduced risk rather than which continues to increase the risk of individual harm. We need infection prevention control approaches which embed human rights and person-led care and support.

Let us find a collaborative way of working together, families and advocates, residents and staff, managers and providers, clinicians, and public health, so that in community and care home, we take control over from national ‘guidance’ and instruction and enable local decision-making.

Let us get real about what we mean by public assurance and stop victimising care home professionals by using disproportionate scrutiny and fallacious ‘support’; let social care take back the ground of compassion stripped from it by others in the name of oversight and regulatory expertise.

Let us restore the trust in the professionalism and skill, the compassion and care of frontline nurses and staff, rather than denude their integrity even further by spurious politicised interventions.

Let us begin to value the story and life of every resident and let care homes start to be homes again and avoid the creeping clinicalisation of places which have the very real potential of bringing life to fulness.

Let us find our way back to hope and celebration, to community and integrity.

Let us plant a sunflower of hope to shatter the dismay and hurt, and to bring forth healing and togetherness.

As we stand on the edge of the third year of living with Covid let our future be markedly differ from our past. Whether in the Ukraine or in our own communities, let us stand in solidarity with older age, rather than the pretence of care and support whilst in truthful reality we walk by on the other side.

Donald Macaskill

Tuesday sees the celebration of International Women’s Day, 8 March, 2022. This is an annual event which raises the profile of the experience of women and girls around the globe. The theme for 2022 is “Gender equality today for a sustainable tomorrow.”  Regular readers of this blog will know that I have written often about the strong female influences in my personal and professional life, so I want to spend a bit of time this week reflecting on some connected thoughts from those insights.

1.

It was as far back as 2017 that I appeared before the Scottish Parliament’s Economy, Jobs and Fair Work Committee and gave evidence relating to the Gender Pay Gap in Scotland. A few months later the Committee issued its thorough report ‘No Small Change’  which identified that gender segregation was a real phenomenon within the care sector in Scotland. Indeed, Scottish Care in its evidence to the Committee argued that there existed systemic gender discrimination in the way in which we treated the predominantly female social care workforce in Scotland. Sadly, some four or five years later despite all the rhetoric about reform and reconceptualising care services we are still faced with clear gender discrimination in the way in which we prioritise social care and its largely female workforce. I am more and more convinced that we will not address the dis-ease afflicting social care provision unless we call out the gender discrimination which is so characteristic of the way in which social care in general and its workforce in specific are treated sector. At the risk of personal repetition, I said five years ago that were this a workforce which was 86% male and not 86& female then we would not have had the travails of unequal pay nor the ludicrous terms and conditions which are deemed acceptable by contracts from local authorities. Indeed that latter point was forcefully and cogently articulated in the Fair Work in Scotland’s Social Care Sector Report in 2019. It stated:

‘The evidence suggests that the undervaluing of care work is, to a significant extent, linked to the predominance of women workers in the sector. 11 The view of the Social Care Working Group was that part of the failure to value social care comprehensively is due to its status as women’s work. Women face systematic labour market disadvantage, including occupational segregation, workplace discrimination and lack of flexible working. Institutionalised undervaluation is common in highly feminised jobs and occupations, contributing to the gender pay gap (of 15% in Scotland). Social care work is also less visible than other work, taking place in service user’s homes rather than workplaces, with implications for skills recognition and for collective organising.’ (page 14)

Calling out gender discrimination in social care requires us to continually underline the reality that gender segregation is a fact which requires attention. Part of the reason we fail to value social care as a whole is that it is still seen by and large as ‘woman’s work.’

2.

At the heart this gender segregation challenges our understanding of what care itself is and the value that we put on the art of care. In the last few years, we have seen the offensive articulation of a belief that care is ‘low skilled’ and I cannot help but believe that such an assessment is in part because of both the fact it is undertaken predominantly by women but also that care itself is deemed to be of lesser value and import to society than a technical set of skills or attributes. Such pervasive gender stereotyping must be challenged not just for what it says about the workforce but just as importantly for what it conveys about social care.

It will come as no surprise that for me social care and our ability to prioritise it and value is both the bedrock and heart of our society and should be valued because it evidences a priority which captures the essence of who we are as a society and as communities. But clearly despite the fact that social care is a massive economic contributor to the overall economy wider society still perceives it in negative terms, in language of cost, burden and deficit. Take for instance the much heralded launched of the Scottish Government’s National Strategy for Economic Transformation report ‘Delivering Economic Prosperity’ in the last week. Except for mentions of support for the Living Wage in Adult Social Care and a passing reference to technology in care, social care doesn’t merit a mention.  I am utterly dismayed that despite the travails of the last two years and the heightened awareness of the intrinsic and fundamental importance of social care that this document fails to prioritise social care and its workforce, businesses, and employers. Instead of a nation considering that part and parcel of economic prosperity is a prioritisation of a social care system and supports that potentially becomes the engine of that prosperity there is a complete failure to think radically and creatively with people at the heart. Gender bias and the pay gap are mentioned as is the need for radical childcare, but the contribution, entrepreneurship and creative potential of the largest female workforce (outside of the health sector) is ignored.

3.

But the systemic gender discrimination we witness isn’t just to be found in the way we treat our social care workforce, or fail to recognise its economic value and ingenuity, it has also been sadly the experience of our response to the global threat which has bene the pandemic.

As the United Nations in various reports in 2020 and 2021 has underlined the pandemic has highlighted the way in which as modern societies, we are so reliant upon women both in the frontline of care and health services but also at home.

But as the United Nations Women report on Covid19 states:

‘In times of crisis, when resources are strained and institutional capacity is limited, women and girls face disproportionate impacts with far reaching consequences that are only further amplified in contexts of fragility, conflict, and emergencies…

Despite these numbers [in health and care], women are often not reflected in national or global decision-making on the response to COVID-19. Further, women are still paid much less than their male counterparts and hold fewer leadership positions in the health sector. Masks and other protective equipment designed and sized for men leave women at greater risk of exposure. The needs of women frontline workers must be prioritized: This means ensuring that health care workers and caregivers have access to women-friendly personal protective equipment and menstrual hygiene products and are afforded flexible working arrangements to balance the burden of care.’

4.

Lastly any consideration of International Women’s Day and a reflection on social care has to also face the challenges posed by the unequal treatment of women in terms of their health and social care. It is not just the social care workforce which is predominantly female and the victim of gender discrimination it is also sadly the fact that the majority of those supported and cared for are also themselves women. It is estimated that in the United Kingdom that 61% of people with dementia are women and 39% are men. Accepting that this is in part because women live longer than men it is not that difficult to evidence discrimination behind the data. There is relatively little research focus on the specific genderised characteristics of the disease that may impact upon women. Indeed an earlier report by the Alzheimer’s Society rightly stated that women and dementia are the ‘marginalised majority.’ The fact that dementia is the major cause of death of women across the United Kingdom is a reality that few consider or talk about. I cannot be the only person who having marvelled at the unified scientific community which brought about such astonishing breakthroughs in the discovery of the Covid19 vaccine, has pondered what would happen if equal focus and priority was given to finding treatments and interventions for dementia. Is it too simple a leap to suggest that both age and gender discrimination has a contribution to such relative lack of fiscal priority?

International Women’s Day is an opportunity for us all to focus on the contribution and creativity of women in our communities; it should also be a call to address the systemic discrimination that treats women and girls less favourably and equally, whether in social care, economic opportunity or in disease management and research.

Donald Macaskill

I’ve often remarked in this blog that in the strange patterning of days some words seem to become prominent in the conversations of the moment. Perhaps the word of the past week and for such strange times is ‘freedom’.

Freedom, that most elusive of desires, an emotion and state unable to be grasped and held, always open to escape, always unsettling, rarely achieved. It carries with it connotations of being empowered, having the right to act, to speak, or think as one wants. We celebrate freedom of choice, the liberty to be autonomous, the right and privilege to not be shackled or imprisoned by another or indeed by ourselves. In literature and art we try to depict the freedom of birds that fly, of oceans that stretch out, of rivers that determine direction. Freedom so hard to describe but so precious when absent.

Our newspapers across the political and tabloid/broadsheet spectrum were trumpeting headlines this last week declaring ‘Freedom Day’ a day when restrictions will be removed or largely limited. All of this following the announcement by the First Minister that on March 21st, the mandatory wearing of face masks in all public places, including pubs, restaurants, and shops along with the one metre physical distancing rule and the legal requirement for businesses to keep customer contact details will be removed. She declared this “is possible only because widespread vaccination coverage and better treatments have reduced the direct harms of the virus.”

Whether or not the slow restoration of former practice can be defined as freedom is a moot point. Indeed, along with the removal of restrictions comes the advocacy for caution and concern, a call to take public and personal responsibility. This is to be manifested in individuals choosing voluntarily to wear masks in crowded or public places, to be ‘sensitive’ to those who may have particular risks and vulnerabilities, and to act responsibly should one become ill.  A call to good neighbourliness and social responsibility is to take the place of mandating, legislation and requirement.

For many fellow citizens the reverting to former practice will indeed feel like a sense of freedom, but for not a few the next few weeks and months remain uncertain and fearful and feel like the lessening or loss of freedom. The disability advocate Dr Sally Witcher (@SalWitcher) writing on Twitter this past week asks:

“ Why should we have [to] be at the mercy of other people’s selflessness & willingness to protect/look after us? We’re not objects of charity. We’re equal active citizens. We fought for years for equality & human rights as relying on people to do the right thing just doesn’t work.

Of course we all want to go back to ‘normal’. None more than me after 2 years indoors. That’s what I call a massive restriction! Compared to that wearing a mask, etc is no restriction at all. And if businesses installed air filtration there have to be business benefits.

So-called ‘restrictions’ are protections that enable everyone’s freedom, not freedom for some at the cost of loss of it for others. They keep everyone safe from long Covid, new variants, and still unknown long term clinical consequences of even mild illness.”

It certainly, does not feel like freedom for so many people who have needed the maximum degree of self-protection from this still pernicious and dangerous virus.

What will happen to social care staff in care homes and homecare remains at the time of writing at best uncertain. Take care homes as an example. We are still awaiting guidance from clinicians and Public Health Scotland as to what, if any mitigations and measures will be required into the future. It is likely there will be a degree of testing for staff and potentially visitors. But how this will be undertaken, by whom, and how it will be paid for given the UK Government’s statements to remove free access to tests (including in care homes) in the last week, seems uncertain.  What will be required about masks if anything?

But what is even more pressing is the need for clarity on the current restrictions being placed on care homes. We are still caught in the endless cycle of care home residents having to isolate should an outbreak be declared in a care home and many unable to engage in normal activity and relationships. Such periods of isolation can literally go on for weeks because no sooner does one period of 14 days end then another often seems to start creating a new ‘outbreak’ and often as a response to very few cases. As many of us have been arguing with and trying to convince clinical leaders – and to date unsuccessfully – such extended periods of isolation (even with a named visitor in place) are unacceptable, disproportionate, unnecessary, and hugely damaging.

When is freedom going to come for them and what will it look like? In a week which has seen a significant increase in the number of Covid cases affecting care home residents this virus shows no signs of going away. So what does living with the virus mean for these individuals – a perpetual state of isolation and confinement? What quality of life is that? Anecdotally many managers and staff are saying to me that the level of decline and deterioration of residents forced into such isolation is wholly unacceptable and is they are convinced a set of actions which shortens life and certainly precipitates significant cognitive decline. This is simply not justifiable on any grounds, epidemiological, clinical or moral, nor is it, in my opinion, at all proportionate or legitimate in a legal sense. We have declared freedom for the wider public and yet still have no open door to a better future for those who have suffered the most.

Sounds of freedom outside and the rush to throw off masks and restrictions for so many in our care homes ring hollow and empty in both rhetoric and reality.

But of course, freedom took and has taken on a wholly different level of meaning in the last few days as we have seen the horrific scenes from the Ukraine and the results of a despotic dictator wreak havoc across a modern, inclusive and open society. The fragility of civilisation has never been so vivid as I have watched fathers break down in tears leaving their children behind as they are conscripted into a fight against the enemy of their people; as I watched people cowering to shelter from attacks in underground stations; as bombs were seen to rip open the homes of the innocent and land on kindergartens; as tens of thousands started a journey as refugees seeking a border of peace and escape. As Europe is plunged into a darkness we have not seen for generations, we are all of us yearning for a return to peace. Freedom seems so far away for so many in the blood and tears of the Ukraine this morning.

All of us wherever we are and whoever we are seek that common gift of freedom knowing only too well that sometimes it comes at a very real price. So today with so many I will spend time thinking of the women, men and children of the Ukraine before all else because it is only in solidarity with those who are suffering that true freedom for ourself comes.

I leave you with the words of a poem:

freedom

the elusive one;

once caught always lost,

once lost always found,

where is she to be searched for?

when does she discover you?

 

they look for her in their books

and search for her in their stratagems;

by policy papers and wordy manifestos

they fail to imprison her laughter.

 

they seek her in empty corridors

echoing with the sounds of powerless dictators,

dined to bloating on their own importance

fed to obesity by a diet of propaganda.

 

they seek her in the warmth of missiles

and search for her amongst a bed of nuclear pillows

pulling back the blanket of macho security

to reveal the nakedness of fear.

 

they seek her in the words of hatred

where prejudice becomes the scapegoat’s friend

and bullying the national sport

of nations too ashamed of difference.

 

they seek her in your heart

where she lies dormant

emptied of enthusiasm,

lazy through lack of exercise

exhausted by inactivity.

 

freedom

the elusive one;

when will they learn

she is not a place but a sound

not a word but a whisper

not a weapon but a heart

not a prize but a gift.

 

When will they learn?

when freedom imprisons hate

and freezes out fear.

 

Donald Macaskill