Last Tuesday I was invited on to Radio Scotland to talk about the benefits of ‘Virtual Reality’ for older people in Scotland especially in our care homes. As regular readers of this blog might know I am someone who has long held an interest in all things technology and digital, not least artificial intelligence and robotics.  Both during and after this week’s programme I began to reflect on the extent to which we have not fully tapped into the potential of VR for both older people living in care homes but maybe especially for those in our communities. This will be an issue which we will be considering in a lot more depth during the Scottish Care hosted virtual Care Tech 4 event which will be held this coming Thursday and Friday. It promises to be a great couple of days which folks can drop in and out of with a range of up-to-date demonstrations, presentations and exhibits as well as fascinating panel discussions. For more details see https://scottishcare.org/care-tech-4/

But for now, as my title asks should we care about virtual reality?

A lot has been said and written about VR over the years not least about its role in gaming technology, of which Scotland is one of the major centres of innovation, development and invention. There has been less written about the benefits and drawbacks of VR for the care and support of citizens regardless of their age. Indeed, there have, I believe, been around 5,000 academic articles in the last three years alone about VR but few of these have been about the use of VR in our care and support sectors.

We can make some general conclusions from the research that has been done to date along with anecdotal evidence in Scotland which in broad terms suggests that VR is of real benefit, in some instances of very significant benefit. One of the reasons research suggests that VR is an asset is because of the immersive interaction capabilities which VR enables and allows.

In my experience I think we can broadly suggest there are the following positive benefits of using VR in care homes and in someone’s own home:

Firstly, there are clear health benefits to be gained in terms of exercise, increased physical mobility and movement. So, the recently developed innovation from an Edinburgh entrepreneur working with local care homes has helped individuals to remain mobile and to exercise. See https://www.edinburghlive.co.uk/news/edinburgh-news/edinburgh-entrepreneur-uses-virtual-reality-21228219and https://www.digitechtive.co.uk/care-home-vr

Readers might also be interested in the work of the Norwegian group Motitech which enables people to exercise whilst re-visiting parts of the country which they might be familiar with and evidences real positive outcomes re increased muscle strength, balancer and breathing.

More research needs to be undertaken in this area because studies have tended to focus on rehabilitation and physical function including gait, balance, falls prevention and pain management. They have also tended to focus on settings such as care homes where there is support in their use but the real potential future benefit for physical health will undoubtedly be in the community and ensuring people can remain as independent for as long as possible.

VR in any of its formats is not a panacea but studies are detailing increasingly significant benefits especially if used as part of a wider programme os health and wellbeing, rehabilitation and exercise. See https://www.jmir.org/2020/6/e17331/

Secondly, there is growing evidence to suggest that the use of VR can improve psychological health and well-being. The use of VR in the support and care of many people with dementia has led to a reduction in agitation, improvements in behaviour which challenges, and a reduction in the use of psychotropic interventions.

Thirdly, the use of VR as a memory tool has heralded real benefits. Used well it can bring people back to experiences and encounters, to places and events, which have been significant in their past and which can help in terms of cognitive recall and stress alleviation.

Fourthly, VR has great strengths as an educational tool, enabling its immersive approach to support any individual regardless of their age, to gain new understanding and knowledge. Contrary to popular opinion and stereotype many older people both in care homes and in their own homes, thrive on new experience, learning and insights.

Lastly, they enable people to interact and be in touch with people they know or those who they might want to get to know. Whilst pad technology has been dominant in maintaining contact especially during the pandemic there is a real potential in the use of VR.

Now there are clearly challenges but these are capable of being addressed and overcome. Wearing a headset for too long can cause confusion or headaches; there is an importance of being aware of factors which might impact balance and hearing. There needs to be an emphasis on adequate support and maximising accessibility for individuals with reduced cognitive abilities.

But perhaps the biggest challenge for the use of an VR is cost. Whilst basic headsets are now retailing for below £30 some devices can stretch into the 1000s. More pragmatically excellent headsets can be purchased as part of support packages for the low £100s. Nevertheless, there is a clear fiscal cost both in equipment and in the support needed for people to sue them to their maximum benefit. Therefore, when we are designing and developing services and supports, we should now as a matter of priority be considering the cost benefits of using VR alongside a whole suite of other technologies.

Doubtless the above and many issues will be explored during CareTech4 and throughout Scottish Care’s work on technology and digital.

Technology and VR especially is here to say – it is too important a tool to be left to gaming alone – we really need as a whole community to start caring about VR.

Donald Macaskill

I crossed one of my favourite bridges yesterday – one which has a long resonance within my experience. After what can only be described as a stormy crossing this morning I am writing from Skye and my family’s croft in Dunvegan. I’ve said before in this blog that Skye has a special place deep inside me no matter how far I am from its physicality, so it is good to be up even for a couple of days. The Skye Bridge is well known – synonymous with a struggle of a community determined not to have to pay exorbitant bridge tolls and who carried out a successful campaign in the late 1990s, one which belied both court and parliament.

Bridges have long fascinated me – probably since my late uncle showed me his signature on a bridge over the river Hamara in Glendale, Skye because he had been involved in building it. As a child at the time, it seemed to me to be huge but in truth it was but a few feet in length. But the idea of something which brought you from one side to another, something which you could build to provide safety and passage, fascinated me from that moment on.

On Monday last the Scottish Government published their consultation on a National Care Service. I will no doubt make further comment on its contents and proposals in another blog or space but for the moment its words and ideas are cogitating inside my head! But what has fascinated me this past week isn’t so much the vision of the future but the ‘how’ – how do we get from where we are now in terms of social care support delivery in Scotland to the vision or prospect which is held before us in both the consultation and in other proposals which are beginning to emerge in civic society. I think reflecting on that ‘how’ is important because it will either help to achieve the vision or hinder it.

I spoke to the AGM of Scottish Care members a couple of days ago and I heard there and reflected upon the concern of many that the next few weeks, months, and years will be ones of real importance. Getting from where we are to where we want to be involves planning and preparation, focus and concentration. I know that all too well. Climbing a Skye mountain is a challenge in itself – obtaining and developing a vision for how you see the future of social care is an equally arduous task – but as with any climb it is both the preparation for the climb which is essential and also the descent that often causes the most harm and poses the greatest risk. Having a vision is all very well but moving towards that future vision is where risk and harm can really happen.

That is where I feel the image of the bridge comes in. A bridge is not an incidental or accidental combination of brick and mortar, steel and structure, but the fashioning of materials for a purpose which entails design, calculation, and precision. Too often we rush to get to the other side without thinking about the importance of the route we travel or what we use to get us there.

There is such a critical importance that all of us involved in social care plan our next steps with care and mutuality, be we people who use support or frontline workers, managers or owners of care services, trade unionists or politicians.

We need to think of how we support and nourish our workforce who are tired and drained so that they stick with it and continue to dedicate themselves to the art of caring. We need to stop the blame game for care providers and work together to create a future worthy of our communities of compassion. We need to bestow trust upon professionals delivering our care home services rather than hauling them before investigations and oversight, scrutiny, and inspection. We have to chase away the falsity of infection prevention practices which negate human living by treating a care home like an acute infection unit. We need to work with every sinew to build confidence and remove fear so that we can urgently return to the normality of care home living. We need to allow people to take risks, including the risk of acting in ways which may harm themselves if it is their choice with capacity.

We need to think about mutuality not as an airy concept but as a practical, day to day reality where the professionalism of one group is valued, appreciated, and affirmed by another. We need the false dualities of care and health to become entwined in a regard which puts the person at the centre and treats them not as cared for or patient, but as citizen and director of their living health and wellbeing. We cannot wait for a reform to commissioning but must end now the obscenity of 15-minute visits and the penalising of frontline staff. And so on and so on…

One of my favourite poets is the American Emily Dickinson. She led a secluded and quiet life, and her poetry was unconventional both when it was written in the 19^th century and for some still now. She is considered by many as one of the greatest female poets. One of her commonest motifs and images was that of the bridge. Her most famous bridge poem is this one:

Faith—is the Pierless Bridge 

Faith—is the Pierless Bridge

Supporting what We see
Unto the Scene that We do not—
Too slender for the eye

It bears the Soul as bold
As it were rocked in Steel
With Arms of Steel at either side—

It joins—behind the Veil

To what, could We presume
The Bridge would cease to be
To Our far, vacillating Feet
A first Necessity.

Dickinson’s poem is not primarily about religious faith though uses the metaphors of faith traditions. It imagines a sceptical explorer crossing a bridge (possibly the Niagara Falls Bridge). It is a bridge without piers – a suspension bridge – it extends from what we see to what we do not see. It connects what we know to the unknown. It is not a wobbly wooden planked bridge but as one commentator has said is personified as a mother gently rocking her child (the soul) with arms of steel.

The way we cross the bridge, the way we move into the future will determine what is on the other side as much as what we have left behind. So too I suspect it will be with the creation of a new way of doing and being social care. In our creation of a new model or new systems we have to characterise our behaviour as one of care, bestowing autonomy and choice, nurturing humanity and dignity, and fulfilling rights and equality. We can walk with care and compassion, treading a bridge which brings renewal, or we can ignore the reality of the present. To achieve all this, we must have critical and urgent regard to the crisis of the present time and social care in Scotland has I believe rarely been in such a state of multiple crises.

The making of the future is built upon the changing of the present. You cannot build a bridge you expect to walk over by pulling up and destroying the planks on which you walk.

Donald Macaskill

Three weeks ago, I wrote a blog on the nature of vulnerability – both challenging the misuse of the word and also suggesting the need to develop a more positive view of vulnerability. With a degree of synchronicity and similitude, I have been having comparative conversations with clinicians and colleagues in the last few weeks over the concept of frailty.

Frailty has been a key concern for the care sector for many years. Over that time there has been considerable discussion about its definition, what it means both physiologically and psychologically and how relevant it was as a descriptor in the support and care of individuals.  I was therefore delighted to read a piece in the last few weeks by the respected clinician David Oliver which confirmed both my own unease with the term and why it is important that we reconsider our views of frailty.

In that paper Oliver reminds us of the uncomfortable debate in spring 2020 in the midst of the first Covid wave, on the use of the Clinical Frailty Scale (CFS) as a tool ‘to triage, target, and potentially ration scarce intensive and high dependency care.’ With many others I was critical at the time of the use of such a tool as a proxy for individual and person-led clinical decisions and the dangers of age discrimination which might result.

It is important in any debate on frailty to recognise that it has positive dimensions to its usage. As Oliver states:

‘in over 75s registered with NHS practices, severe frailty as defined by an electronic frailty index is associated with far higher risk of hospital admission, death, or care home admission in the following 12 months. People with frailty have less functional reserve and are far more likely (with or without covid-19) to present with immobility, falls, confusion, or generalised failure to thrive, or to get stranded in hospital or experience acute loss of function. Those in care homes, or who have dementia or are receiving home care or post-acute rehabilitation, will often be frailer and older.’

As a general term, therefore, there are clear benefits in being able to use models which can be early predictors of the benefits of additional support and intervention. As a preventative assessment measure such frailty tools are invaluable in achieving both better outcomes for the individual person and in reducing the economic health costs for the rest of society brought about by unnecessary hospital admission.

But the term is not neutral and can be used sometimes with inconsistency and contradiction. Indeed frailty is a term and concept which as researchers like Archibald et al have shown is not widely understood by the general population and is negatively viewed as a descriptor by older people themselves. They argue in their research that the use of the term may actually serve to harm key public health messaging.

A critical dimension of the care and support of older people is to enable individuals to maximise independence either in their own home, in the community or in a care home. Most associations on frailty relate to a loss of independence predominantly due to challenges with mobility and a loss of control over one’s environment. Frailty clearly both at the popular level and clinically carries with it negative connotations.

There are a couple of points in this extensive debate which I want briefly to make in this blog.

The first is that at times there can be too great a stress upon frailty seen as physiological decline without a resultant emphasis upon psychological, emotional and environmental changes and challenges, and

Secondly, I wonder if it is time to collectively replace the concept of frailty with a more positive modelling based on how we should be enabled and assessed as ‘ageing well’?

Turning to the first issue. There is now a wide professional acceptance that frailty is not solely about physical decline, either of mobility or other functions. There is an appreciation that we need to have and adopt a holistic understanding of frailty. An individual’s circumstances and the constraints on their independence are a product of many factors, including their physical environment, their psychological well-being, the extent and degree of their relationships and social connection. Frailty therefore cannot simply be a score on a chart to take account of changes in someone’s physical health.

But when I speak to practitioners and to those older persons who access health and care services, such a holistic understanding of frailty seems frustratingly absent and missing. They complain about the dominant emphasis and focus on their physical health and a limited or absent appreciation of their psychological, social and relational well-being.

From my own experience I can remember my great aunt who was an astonishing woman still writing articles and letters when she was 94. She had a fall which resulted in a hip fracture and underwent very successful surgery. Her rehabilitation focussed on her physical return to health. The stress was upon addressing her frailty. But over a short period, she declined sharply, and it wasn’t the physiological decline – as I said surgery went well and she responded astonishingly well – but it was the impact psychologically that it had upon her and her confidence which those around her recognised as the major factor in her change. Yet nobody attended to that because all they could see was the physical decline and frailty and not the change in the person.

The person who has had a hip fracture at home because of isolation and loneliness and lack of social care support and ends up going into an acute hospital for a replacement – their intensive rehabilitation back in the community isn’t – should not be – simply about enabling them to get back on their feet, to mobilise, to be able to ‘look after themselves again’. If that is all we’re doing, we’re only attending to the physiological functional dis-ease. We’re not attending to that connectedness of the person who needs to be able to maintain relationship with neighbours and with their community, and nor are we attending to their mental health needs because that certainly, in my experience of frailty and falls, is what we often forget because we’re so focused on the physiological. We know about but often fail to respond to the sheer mental distress, trauma and psychological fatigue which occurs when somebody has a major fracture whether it happens in their 60s or in their 90s.

I think we are some considerable distance from a situation where there is a robust multi-disciplinary team awareness across health and social care of the multiple factors that contribute to the decline and change in the health story of an older individual.

Another really important recent study from Coker et al makes the same point of a gap between awareness of the need for a holistic understanding of frailty and what actually happens in practice. Summarising their research study, they state:

‘There was a shared narrative among participants that frailty is an umbrella term that encompasses interacting physical, mental health and psychological, social, environmental, and economic factors. However, various specialities emphasised the role of specific facets of the frailty umbrella. The assessment and management of frailty was said to require a holistic approach facilitated by interdisciplinary working. Participants voiced a need for interdisciplinary training on frailty, and frailty tools that facilitate peer-learning, a shared understanding of frailty, and consistent assessment of frailty within and across specialities.’

I could not agree more about the necessity to move beyond biomedical descriptions of frailty and to support older people in a more holistic manner utilising the professional skills of all social care and health care staff.

The second issue I raised above was the suggestion that perhaps we need to move beyond frailty descriptors and to develop a more positive modelling based on how we should be enabled and assessed as ‘ageing well’

The language we use in life and in our descriptions of how we value living are critical and there can be no doubt that concepts of frailty are negative, limiting and associated with decline and deterioration. Whilst ageing does indeed for all result in change and alteration and for some that includes elements of physical or psychological change, it does not always need to be perceived in a negative and diminishing manner. Why do we see such change as negative? Is it because our societal ideal is still a concept of humanity rooted in a cult of physical prowess, our vision of humanity one of the ‘whole and able’, and that inevitably ageing, and the change that accompanies it, is seen through a negative lens?

I think the continual impugning of negative association with frailty is preventing us from being positive about ageing. If frailty impacts almost inevitably for those who age then why should we see it as decline and deficit rather than as natural and normal, to be lived through rather than avoided?

As more and more of us live for longer and longer periods of time and increasingly with healthier older age, we really need to grow up in our attitudes about age and the extent to which we either on the one hand dismiss the benefits of older age or elevate them to a false authority. Neither is entirely accurate nor helpful.

Instead, we should, I would contend, be seeking to adopt a positive view of ageing and a model of care and support, both healthcare and social care support, which is oriented not on a negative paradigm such as frailty but on the positivity of ageing. This is after all the World Health Organisation’s Decade of Positive Ageing!

Frailty is the consequence of ageing for many of us and it will happen both physically and psychologically at different stages for different people. We have to own it and see it as one of the glorious realities of us all getting old which for many of our forebears was not a possibility.

Yet in descriptions of frailty and ageing the norm is on too many occasions a limited clinical view. This is the description of ageing I came across recently – it described it as  ‘characterised by a complex and intraindividual process associated with nine major cellular and molecular hallmarks, namely, genomic instability, telomere attrition, epigenetic alterations, a loss of proteostasis, deregulated nutrient sensing, mitochondrial dysfunction, cellular senescence, stem cell exhaustion.’ Dictionaries available online!

To age has to be seen as the flourishing of our lives, despite the challenge of the passing years. So, it is time both to broaden our vision of ageing well and to re-consider whether frailty as a concept should be replaced by ageing. Or perhaps weathering?

The late Whithorn born poet Alastair Reid sums the changes brought about by ageing in a manner that for me captures its essence – I would rather weather with the time of age than decline on a clinical frailty scale any day!

Weathering.

I am old enough now for a tree
once planted, knee high, to have grown to be
twenty times me,

and to have seen babies marry, and heroes grow deaf –
but that’s enough meaning-of-life.
It’s living through time we ought to be connoisseurs of.

From wearing a face all this time, I am made aware
of the maps faces are, of the inside wear and tear.
I take to faces that have come far.

In my father’s carved face, the bright eye
He sometimes would look out of, seeing a long way
through all the tree-rings of his history.

I am awed by how things weather: an oak mantel
in the house in Spain, fingered to a sheen,
the marks of hands leaned into the lintel,

the tokens in the drawer I sometimes touch –
a crystal lived-in on a trip, the watch
my father’s wrist wore to a thin gold sandwich.

It is an equilibrium
which breasts the cresting seasons but still stays calm
and keeps warm. It deserves a good name.

Weathering. Patina, gloss and whorl.
The trunk of the almond tree, gnarled but still fruitful.
Weathering is what I would like to do well.

Alastair Reid

from Weathering: Poems and Translations (New York: E.P. Dutton, 1978; Copyright © 1978 by Alastair Reid. All rights reserved)

https://www.scottishpoetrylibrary.org.uk/poem/weathering/

Donald Macaskill

 

This blog will next appear on the 14^th August.

Two colleagues, Dr Tara French and Imogen Caird, have this past week published what I consider to be one of the best papers on social care reform in Scotland that I have read for a very long time. ‘Time for Change: Conceptualising a National Care Framework’ is not long but packs a punch of impact and insight and is well worth a read.

One of their central arguments is that rather than so much debate and focus being placed upon a National Care Service what we should be considering, debating and engaging others on is the concept of a National Care Framework. Now lest that seem like a semantic argument they express their point thus:

“The connotation of language has huge implications for how people understand or conceptualise proposed change. The use of the word ‘service’ implies a relationship and role of providing and receiving, perpetuating transaction between people providing and people accessing support. In defining and describing the conceptualisation of a future of social care, there is a need to carefully select language that emphasises the mutual, relational and outcomes-focused mindset to set a precedent for how people may interact with such a concept. As has been reinforced in many policies related to health and social care over the years, there is a need to shift away from transactional models of care and support towards collaborative, relational approaches which are developed in true partnership with the people they are designed to support. From a rights-based perspective, people have a right to be informed about the options and choices they can make with regards to decisions about their own health, social care and wellbeing. “

As well as highlighting the dangers of a casual association with the National ‘Health’ Service Trench and Caird rightly articulate in their paper that we must recognise that the NHS and any potential National Care Service have to be fundamentally different from one another because in essence they are completely unalike. Failure to recognise the distinctiveness of social care as opposed to healthcare lies at the root of many wasted interventions and failed initiatives.

Social care is more than a service – it encapsulates the essence of a person-to-person support and care relationship. When we are thinking of social care, we need to reflect on the core principles and characteristics which have long been recognised and accepted. As Scotland begins in the next few weeks to consider what we want for the future it might be worth spending a brief time reflecting on those principles and characteristics.

In 2014 my own organisation Scottish Care was one of the many signatories to a Statement on the Principles and Values of Self-directed Support. Now I know in some quarters self-directed support has received a negative press and in others is seen as an option rather than as the only route in which social care should be being received in Scotland today. Nevertheless, its underpinning principles which are enshrined in Scottish legislation are, I would suggest, an excellent description of the essence of what social care is and should always be. They describe a relationship rather than a service. Social care support is about creating independence not fostering a dependency on others or upon services. Fostering independence and the strength, and sometimes the courage, that comes with it requires the building of relationships of trust, honesty, authenticity and reciprocity. It demands an exchange which empowers the supported person rather than validates the needs of the care-giver or commissioner of that care support.

The principles of Self-directed Support both as a legislative set of rights and a descriptor of the process of social care delivery underpin such a relational dynamic at the heart of social care support. They are about collaboration, dignity, informed choice, involvement, participation, innovation, responsibility and risk enablement. Any future model or framework of social care in Scotland has to speak to these principles or it has nothing to say of value.

An individual’s right to dignity in the support and care they receive does not just happen by casual circumstance but through deliberate action, planning and support.

The person needs to be able to know what they do not know, to be given information about their rights, about their options and what is available to them, in a way that they understand, at a time that suits best, and with the assistance that they may require. In no small measure the mess of social care delivery in Scotland and the failure of the Self-directed Support Act to date has been as a result of failed information, poor communication and an echoing absence of a commitment to public and national information. To know, to be informed, is to be empowered and we have as a whole community failed to empower those who require to exercise their rights to social care support. We have been silent too long about the individual rights of people in Scotland to access care support, to take control and exercise personal choice.

There is still too much within traditional social care delivery which retains power and control at the point of professional commissioners and providers of that care support. True collaboration and co-production enable people to be involved in a real and meaningful way, not as a tick-box exercise but as a dynamic that alters the relationship between the person receiving support and care and those paying for it and providing it. We have a long way to go in so many parts of Scotland before we achieve such a dynamic.

I hear of too many instances where a professional assumes that they know best, that they know the outcomes an individual wants to achieve for their life. The real radical strength of the SDS Act was its replacement of a system which assessed what you needed with a process that was about helping you to achieve what you required and wanted in order for you to be able to play your full part as a member and citizen of your local community and country. We have failed in large measure to achieve this and to really trust people to know best, to enable and own their own risk taking, and to have control over the activities and supports that would enrich their lives.

All the above-mentioned principles are the lifeblood of any social care framework and should be at the beating heart of any envisaged National Care Service. We have for too long concentrated on the model and not the meaning, focussed on the mechanics and not the rhythm, centred our concern on the sustainability of the system rather than the flourishing of the individual who receives support and care. Until that changes and until a system of governance and professional influence allows it to change then we will never deliver person-led, rights-based, citizen-controlled social care in Scotland.

I was reminded of the essence of care and support this last week when on Care Home Day (last Wednesday) someone sent me Lee McCurley’s poem called ‘Caregiver’

“I am the caregiver, the watcher, the guide
I walk down the hall with you by my side
a smile, a laugh, a hug or embrace
I watch the worry fall away from your face
I am the caregiver, the watcher, the guide
I walk down the hall with you by my side
I am your compass, your shinning north star
I try to remind you of just who you are
I am the caregiver, the watcher, the guide
I walk down the hall with you by my side
Pictures and letters, music of old
keep your mind warm and away from the cold
I am the caregiver, the watcher, the guide
I walk down the hall with you by my side
the routine of night shows no wear and tear
the light of the morning so soon will be here.”

That is a reflective and, in many ways, insightful piece but the relationship of care and support is not a one-way street but a contra flow of compassion; it is not constant giving but a frequent sharing; it is not always doing for but receiving more.

I have lost count of the folks who over the years have said to me that they care and offer support because it makes them who they are; they cannot imagine doing something else. Now that is not to excuse the pitiful neglect and abandonment of social care workers in regard to their reward and remuneration, their terms and conditions, but it is to acknowledge without embarrassment and apology that to care and support another is ‘more than a job’ it is the essence of our humanity. That is why it needs to be esteemed and valued as the essence of our economy. That is why as we frame the future of social care in Scotland the empowering, relational dynamic of care support needs to replace a transactional, functionalist model which is based on financial value rather than human benefit. Social care support is more than a service it is a way to life.

Donald Macaskill

 

 

Next Wednesday is Care Home Day which this year carries the theme Care Forward. Care Home Day is an annual opportunity to focus on care homes and their vital role and contribution to Scottish society. This year’s theme both recognises the challenges and trauma of the last eighteen months but also seeks to move us forward to a revitalised and renewed care home community. In order to do that I think we need to focus on three areas, restoration, rehabilitation and renewal.

For all of us, I would hope, a day to focus on care homes in the present and future has to start with an honest reflection of where we are now. Our present is one which is far from where anyone would want to be. We are still living in the face of a pandemic with cases on a scale which are disturbingly high and with high levels of community transmission, albeit thankfully low death rates especially in our care homes. We are in an environment where new strains like the Lambda strain dominate a concerned population. We are in a situation where staffing is a real challenge and in the past week, I have heard of more and more care homes shutting up again and excluding family visits on the advice of local public health. We have a tired and exhausted workforce, managers searching for the trust and professional respect which seems to have been stripped from nurses and carers in the sector. We have fundamental problems about the fiscal sustainability of a diverse system with more and more charitable and private operators calculating that they cannot continue to deliver quality care on the resource allocated to them. And against it all we have an approach to infection prevention and control which seems insensitive to the realities of living with dementia and living together in community, in a ‘home’ alongside others.

For so many people it seems as if we have never left the shadows. There are still so many constraints. There is nothing normal or natural about the situation. Having to book a timeslot to make an appointment with love and for a limited period of time seems a huge distance from life as normal. Having to undergo testing and checks, to maintain social distance, to continue to wear masks – which are all immunologically understandable – make it hard to feel that we are in anything other than a twilight existence.

The first priority must therefore be to restore care home life as urgently and as safely as possible to that which people used to experience. Given that the average life expectancy of someone in a care home is close to two years then we have already lost a huge amount of precious time in the last eighteen months. Fundamentally we have to ask the question as to whether or not we have created such a climate of fear and risk aversion, such an impugning of guilt and anxiety upon care homes and their staff, that whilst we are keeping people alive with vaccination and precaution the quality of those lives are ones which are poor.

As we move to a situation where we are required not to suppress the virus but to live with it and balance its harms, we do need to ask questions to those who matter the most – the residents and their families in our care homes. What matters more – being so cocooned that you are safe but detached from contact and family or reducing protection to a level where people can be together in a much more natural and human manner? We have to honestly and in an informed way explore the risk appetite of people and find a space between suffocating protectiveness and dangerous naivety.

Care home life is more than just keeping people alive – it is giving a richness and fulness to the last years, months and days of life – and that depth and richness cannot be achieved without family, friends and presence; it cannot be achieved without interaction and activity, without normality and community. We need to make sure that the right for family to have natural access and contact with their loved ones does not diminish when there are outbreaks and as we prepare for an autumn and winter upsurge of threat.

Critical to restoration has to be an emphasis upon rehabilitation. I have frequently written over the months in this blog about the physical and psychological damage and deterioration caused by both lockdown and the pandemic itself. We are slowly seeing a return of allied health and primary care professionals into our care homes. This must not suffer as priorities begin to be re-directed in the next few weeks and months. Determined and focussed attention needs to be given to a population who have suffered too much and most especially this means attending to the urgent needs of those living with dementia.

But rehabilitation is never just a return to what was or a response to the inevitable decline that a degenerative disease results in. Rehabilitation must also carry with it a re-focus and new direction, a taking into account of changed circumstance and condition. Again, I have written about this before, but every day I am hearing of residents who have been impacted by the deaths of their friends in the care home. We need an urgent prioritisation of grief and bereavement support in our care home sector.

The direction restoration and rehabilitation combined offer us is a dynamic which is about renewing and reforming our care home sector. This is not the space to reflect and argue about resource and recognition, about investing in training and skilling staff, and rewarding them in a manner appropriate to the dedicated skill and professionalism they possess. This is not the space to argue for a more robust wrapping around of community healthcare and social service support for our care home sector. Both are critical but rather, in this space and in this week, we need to urgently focus on how we renew the spirit and positivity, the joy and happiness of the places we have so often in the last eighteen months painted and pictured with words of sadness and loss.

Care homes have to be allowed to re-discover the dynamic of infectious fun and love which is their core. For even in sadness the healing of laughter and enjoyment can bring immeasurable benefit. We have to as a whole health and care and as a political system, to allow care homes to re-discover the art and the gift of making a pile of bricks and mortar into a place where someone feels content to call it their home. We have to allow love to flourish both from the hand of family and staff.

One of my favourite poems is one by Diana Hendry. It is entitled ‘Poem for a Hospital’ but actually I think it speaks just as well to a care home setting – just change patient into resident. It reads:

Love has been loitering
down this corridor
has been seen
chatting up out-patients
spinning the wheels of wheelchairs
fluttering the pulse of the night nurse
appearing, disguised, as a bunch of grapes and a smile
hiding in dreams
handing out wings in orthopedics
adding a wee drappie
aphrodisiaccy
to every prescription.
No heart is ever by-passed by Love.

Love has been loitering down this corridor
is highly infectious
mind how you go. If you smile
you might catch it.

On Wednesday as we celebrate Care Home Day we celebrate the raw incarnating of love into tiny action, touch and tenderness.

Love is there despite the smell of chlorine, an infection prevention and control tidiness which seeks to remove the marks of living, which puts in the drawer the mementoes of memory lest they hold infectious risk.

Love is there despite the silence of activity, despite the empty chairs distanced from contact, without the bustle of busyness and belonging.

Love is there in every touched hand, mopped brow, supported arm, reassured fear and eye that smiles.

Love has been there even in the midst of fear and saddening loss and is there still in times of uncertainty.

But that love needs to be brought into flourishing so touch can be close, distance can disappear, and the ordinary gossip of exchange can stretch across the spaces which have been so unsocial and harmful.

We are all longing for the day when we will accidentally bump into life and love without appointment or planning, without testing or trial, without fear and distress. It is the infectiousness of love that we want to catch as we loiter around our living. And on that day, we can truly celebrate the restoration, rehabilitation and renewal of our care homes.

Donald Macaskill

The Diana Hendry poem from Borderers (Peterloo Poets, 2001). See https://www.scottishpoetrylibrary.org.uk/poem/poem-hospital-wall/