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