It is time for the frail to weather well:  a call for positivity in ageing.

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 14th August.

More than a service: the essence of social care

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

 

 

Care Forward – renewing care home life

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/

 

The language of vulnerability : a personal reflection

In a recent video conference, I found myself gradually getting more and more uncomfortable when one of the participants continually referred to ‘vulnerable service users,’ ‘vulnerable old people’ and ‘vulnerable disabled people.’ I began to reflect on my discomfort and realised that in essence it has to do with the use of the term vulnerable. It is one which is increasingly being used by commentators in the media and in politics. In this brief blog I want to reflect on the way in which the word vulnerable can result in the ‘othering’ of a person or group and the damage which can arise from that, and secondly and not contradictorily why I believe we need to accentuate the positive in our understanding of vulnerability.

‘Vulnerable adult’ was a phrase that was much used in the context of adult protection and safeguarding and to a degree still is. However, when Scotland was developing its new Adult Support and Protection legislation – which came about in 2007- there was a lot of debate on the appropriateness or otherwise of the term ‘vulnerable’. Many self-advocacy groups from the disability and older people’s movements were rightly uncomfortable with the use of the term. The reason for the discomfort is that the term used as an adjective can have the effect of diminishing, limiting and categorising a group or individual. In adult protection terms, it can both lead to a situation where individuals are treated as a group -continually at risk – devoid of distinct identity and capacity, and at the same time can lead to situations where someone is not considered to be at risk of harm because they either do not see themselves, or other professionals do not define them, as ‘vulnerable.’ So it was that the Scottish legislation, not least after some robust judicial contribution, decided not to use the word ‘vulnerable, and in its accompanying Guidance and developments there has grown up an understanding that we are all of us vulnerable to harm from the malevolent actions of another. There is therefore nothing inherently ‘wrong’ about being vulnerable, rather it is an essential characteristic of our humanity. Being vulnerable is part and parcel of human relationship where we take of the masks of pretence and expose the nakedness of who we are to another. Harm can sometimes arise when someone uses our individual characteristics including our vulnerability to cause hurt to us, it is not inherent to vulnerability.

There is a related issue as to why the use of the term vulnerable is unhelpful and it is perhaps especially a development we have witnessed as the pandemic has advanced. There is a danger that the use of the word ‘vulnerable’ risks the ‘othering’ of a person or group. What do I mean by that? Othering treats a group as ‘them.’ To ‘other’ a group or person means to so categorise and distance them that they lose autonomy, individuality and control. They become the object of our concern or care, the centre of our action on their behalf – they lose their voice and agency – their ability to be autonomous and in control. We make the decisions and do so out of paternalistic regard. If we denote a group as being ‘vulnerable’ it seems to almost add justification to the way in which we diminish their autonomy and take actions ‘in their best interests.’ Thus, we have heard words such as ‘vulnerable old people’ throughout the pandemic – treating individuals as a collective with an increasingly diminished ability to see them as individuals and able to make decisions and exercise risk on their own terms.

I mentioned above that as well as a concern for the mis-use of the word vulnerable that I would also want us to embrace a positive dimension to vulnerability. Perhaps the person who has advanced this more than anyone else has been the researcher and speaker Brene Brown. She has in her writings and speeches cogently articulated the need to recognise vulnerability as intrinsic to our humanity.

Brene Brown argues that vulnerability is essential to enable us to live a life which is connected and authentic. She believes that it is those who live fully open to their vulnerability, who ‘spend their life showing up’, who are happiest in their own self and in relationship with others.

In our rush into situations of strength and protection, in our avoidance of risk and emotion, perhaps especially in pandemic times, we are in danger of on the one hand diminishing some people by labelling them as vulnerable and on the other hand totally falling to see that vulnerability is a real strength, and an  essential asset and characteristic of our humanity.

Throughout my working and personal life, I have continually discovered that it is those who are vulnerable, who are wounded, (the word ‘vulnerable’ indeed comes from the Latin word ‘to wound’),  those who live fully raw and honest lives, it is they that evidence to us a strength, reality and maturity which is beyond price and value.

To live a life open to the dynamic of change and circumstance, to be courageous to the point that we can allow others into the space which is our inner self, to be able to stand against easy stereotype and hatred, to speak against the noise of expectation, strikes me as a wound of vulnerability we should all be seeking.

The English poet David Whyte has written a beautiful narrative poem which captures the intrinsic value and necessity of vulnerability:

‘Vulnerability is not a weakness, a passing indisposition, or something we can arrange to do without, vulnerability is not a choice, vulnerability is the underlying, ever present and abiding undercurrent of our natural state. To run from vulnerability is to run from the essence of our nature, the attempt to be invulnerable is the vain attempt to become something we are not and most especially, to close off our understanding of the grief of others. More seriously, in refusing our vulnerability we refuse the help needed at every turn of our existence and immobilize the essential, tidal and conversational foundations of our identity.

To have a temporary, isolated sense of power over all events and circumstances, is a lovely illusionary privilege and perhaps the prime and most beautifully constructed conceit of being human and especially of being youthfully human, but it is a privilege that must be surrendered with that same youth, with ill health, with accident, with the loss of loved ones who do not share our untouchable powers; powers eventually and most emphatically given up, as we approach our last breath.

The only choice we have as we mature is how we inhabit our vulnerability, how we become larger and more courageous and more compassionate through our intimacy with disappearance, our choice is to inhabit vulnerability as generous citizens of loss, robustly and fully, or conversely, as misers and complainers, reluctant and fearful, always at the gates of existence, but never bravely and completely attempting to enter, never wanting to risk ourselves, never walking fully through the door.’

Donald Macaskill

Grief is the cost of loving: care and Covid trauma.

The distinguished writer on bereavement, Colin Murray Parkes once wrote that ‘grief is the price we pay for love.’ It is a price which many have had to pay in deep measure in the 15 months that have passed, and which thousands are still paying. In this piece I want to reflect on the issue of bereavement and what we may have to do as a society to properly support those who have experienced death during the pandemic.

There are three groups I want to give particular focus to but that in no way should be seen as suggesting either their higher priority or indeed that there are not others impacted in an equal way by bereavement during Covid. The three are staff who work in care homes; the residents of care homes and lastly family members of those who have died in hospital, care home and community.

There is already an emerging literature and research focus on the experience of death, dying, grief and bereavement during the pandemic. At the launch of the UK Commission on Bereavement on which I am honoured to be serving, I heard a detailed description of the excellent research which is being carried out by Drs Emily Harrop and Lucy Selman. Their study has highlighted the difficulties and distress people experienced when trying to get support after the death of a loved one during the pandemic, with more than half of people (51 per cent) experiencing high or severe vulnerability in their grief and those seeking support facing long waiting lists or being told they were ineligible. The study also showed that of bereaved people demonstrating high or severe levels of vulnerability, three quarters (74 per cent) were not accessing formal bereavement services or mental health support. These are very worrying and challenging initial findings.

Internationally there has been an emerging recognition of unique pandemic grief responses and a growing acceptance that there is a strong likelihood that we will witness a significant growth in people presenting with what is termed ‘prolonged grief syndrome’.

Prolonged grief syndrome.

Grief is normal and natural. It is part of the rhythm of our living. When we experience the death of someone we know or someone close to us it is as if the earth beneath our feet quakes with their absence, we lose our footing and take time to steady ourselves. Grieving is a journey onwards into a new way of being in the world and with others in the absence of the loved one. Over time, we learn to live without that familiar voice, without their smell, presence, and touch. But grieving is invariably lonely, painful, and sore deep inside our very being. We slowly re-orientate our journey of life and our steps take on a different pattern and shape, as we travel to a new destination without the person who has died.

But for some people this adjustment and change does not happen. Their grief is blocked, their hurt simply overwhelming. They may end up experiencing what has become known as prolonged grief disorder or syndrome (PGS). Psychological experts have stated their belief that up to 10% of all who experience death will be impacted at some stage by PGS. The World Health Organisation describes it as ‘a pervasive yearning for the deceased or a persistent preoccupation, accompanied by intense emotional pain. In addition, individuals with PGD have difficulties enjoying social activities, experience a reduced capacity to feel positivity and possess a general inability to accept the death of a loved one.’

In a helpful paper, Lise Johns and others, describe the risk factors which may make PGS more likely:

  • experiencing more than one death within a short period of time;
  • a strong dependency on the person who died;
  • the death was shocking, premature and unexpected;
  • the death could be perceived as preventable;
  • witnessing the death, or suffering alongside the deceased person if they died following a protracted illness;
  • previous history of mental illness, especially post-traumatic stress disorder (PTSD) or depression.

Numerous scholars and clinicians are now suggesting that one of the legacies of Covid19 will be a significant increase in the number of people suffering from PGS. Indeed, the sudden and swift nature of Covid death for so many means that Covid deaths are often shocking and surprising. There is equally a lot of emerging commentary on ‘Covid guilt’, self-critical behaviours characterised by a belief that you could have done more to prevent the person becoming infected, as well as evidence that many of those who have died from Covid have experienced ‘hard’ and ‘traumatic’ deaths. All of these fit a definition of PGS.

Care home experience

We know that right across the world aged-care facilities or as we describe them in the Scotland, nursing and residential care homes, have been disproportionately impacted by high numbers of deaths because of the Coronavirus pandemic. Speaking to both frontline staff in Scotland and to colleagues across Europe I am very aware of the profound impact that this experience has had upon staff. I would argue that this is a unique grief experience in the sense that it is unlike any other equivalent experience and that not only will it result in prolonged grief syndrome but that there are factors as well as those noted above which may well benefit from academic colleagues undertaking further research and clinical investigation, in order to categorise the experiences and response as a distinct Covid grief syndrome and to thereafter identify specific and bespoke psychological and trauma therapy responses.

A care home resident in Scotland on average spends between 18 months to two years in a care home but in many instances, especially in residential care, this can be a much longer period, potentially up to 8-10 years. It is inevitable, therefore, that over that time a resident gets to know their fellow residents and staff extremely well. Whilst staff come and go and continuity of care has always been an issue in the sector, it is equally true that there are many thousands of care staff who have worked in the one care home or organisation for a long number of years. This results in the formation of deep, close personal relationships – not in divergence from but complementary to the relationships a resident has with their family. Perhaps this is especially the case for the estimated 1 in 10 residents who have no close family proximate to them and for those who live with dementia for whom figures of recognition become so important.

It is a sad reality that for many hundreds of care home staff that outbreaks resulted in the deaths of a large number of individuals over a brief period of time and that the nature of these deaths has been especially upsetting. That in itself is traumatic and is something shared with colleagues in emergency and acute medicine. What is markedly different, however, are the often intense and long-held relationships which care staff have formed with those who die compared to even staff working in intensive and emergency environments in the acute sector.

I know from my conversations that staff have been left traumatised and deeply shocked by what they have experienced and witnessed. Just a couple of days ago a senior palliative colleague expressed concern at the impact the multiple sudden deaths of residents was having on the young staff team in a particular care home.

Staff, I have been told have supported each other and have where necessary had additional psychological support and there is no shortage of virtual support. But I remain unconvinced that there has been an appropriate recognition of the distinctive grief trauma which care home staff have experienced and are still enduring. I profoundly believe more work needs to be undertaken in this area. What we are witnessing is that staff have struggled through the first wave, have been determined not to give up but to keep people safe and have worked through the second wave. But when they have had the opportunity to take a break, to switch off then they have frequently either not returned to work or have returned only to leave after a brief time. The workers whom I have spoken to in these situations are frequently manifesting behaviours and responses which have at their core an inability to process and deal with what they have lived through and the grief which has resulted. We need to do more for this amazing cohort of professionals. In passing, I would also comment that concern is being raised for those who have ‘got on with the job’, those who have returned and have not wanted to or are unable to open up, to talk and share their experiences. For some this might be a coping mechanism but the inability or lack of willingness to talk through such hard experiences is well recognised as a challenge.

The second group who I feel have often been ignored or forgotten about in our support for the bereaved have been care home residents themselves. Just picture the scenario. You are living in a community with others who help to make your life meaningful and purposeful, who are your friends and acquaintances. Together you have formed groups of interest and affection. Then the pandemic hits and the chilling exclusions of isolation together with the loss of familiar activity and exchange; the removal of the rituals of routine and predictability leave you very much alone but for the care and compassion of staff. Add to all that unreality the lack of contact with family, friends, and acquaintances unable to come into the care home for a very prolonged period. Then you may experience living in a care home where there is an outbreak. What do you feel like when not one but maybe a dozen of your friends, people with whom you have spent time and relationship, die within days?

The experience of residents during lockdown is increasingly being explored but the impact of the deaths of friends and fellow residents has not received much attention. It needs to. Whilst a renewed focus on the physiological impacts of the pandemic on residents is imperative, I am concerned that we are not sufficiently focussing on the emotional and psychological impact of the pandemic especially the grief of our care home residents.

Some have suggested to me that my concerns are misplaced and that because so many people are living with dementias and cognitive impairment that their memories of contact and their sense of loss and grief is less significant and troubling. I find such attitudes to be offensive and totally inaccurate. They are equivalent to the attitudes I encountered years ago when professionals suggested that those living with profound and multiple learning disabilities did not experience grief. People even in advanced stage dementia evidence behaviours which are clear grief responses, sometimes evidencing behaviour which challenges. These are manifested in many ways but it is clear that for some the fear and inner anxiety of not knowing what is happening, of losing the pattern of predictability and the comfort of routine, of being unable to be consoled by touch, of masks worn which have distanced empathy and the absence of families, have all had a profound impact.

We owe it to the dignity of their humanity to make sure that appropriate grief and bereavement support is in place so that the Covid grief care home residents have lived through and are still experiencing is addressed.

The third group I believe that is deserving of greater focus are those who have had to endure the absence and separation from loved ones as they have spent the last weeks and days of their lives. This has been hell for so many, moments that will never be re-captured, days that will never be had again. Whether it has been in hospital or in care home, despite all the efforts of many staff, the effect has been an absence of consolation from the hands of those who matter the most. I know from email and conversation that this aching inability to be present has cut deep into the hearts of many, it is a sore which seems incapable of healing.

We cannot turn the clock back, much as many of us would wish but we can not only learn the lessons so as never to repeat them, but equally important we must ensure that we are present and there in word and deed to support those who are left bereaved and grieving. As the world rushes to re-frame its normality, there is a danger that the fractured lives of those who grieve will be forgotten and ignored. They cannot be. We must strive to not only talk about but to actively support in practical ways the needs of the Covid bereaved. The Harrop and Selman research shows just how far short we are failing in this regard.

Covid19 has left its scars on our humanity, it cannot be allowed to continue to wound that humanity still further. Whether it is recognising the distinctive psychological and practical needs of care home staff, the necessity to adequately address the grieving of care home residents, or to bring solace to the suffering of the bereaved relatives and friends, there is an urgent task which cannot be delayed.

Speaking at the launch of the UK Commission on Bereavement and as chair of the group, the Bishop of London and former Chief Nursing Officer, Sarah Mullally said:

“To have to choose a very small number of people to be present at a loved one’s funeral, not to be able to hug and to hold one another, to be unable to gather with a large group of family and friends in someone’s home or a restaurant or pub afterwards is another series of losses, heaped on top of the raw grief. In some cases, this has included the additional trauma of having been physically separated from the person we love as they have died.

“In the wake of so much loss, we now risk a post-pandemic bereavement crisis.

Donald Macaskill

Unconquered Care: the human right to independent living

This week’s blog is an adaptation from an address I gave at the Scottish Care Homecare Festival a couple of days ago.

It has been said on several occasions – that we are at a key point – as a nation – at a crossroads as a society – perhaps that is inevitable given the trauma and the pain of the pandemic

There are two major legislative proposals which are likely to come before the Scottish Parliament in this coming term – the first are the plans for a National Care Service and the second are the proposals for Scotland to have a new Human Rights Act. I want to talk about both.

I’ll take the latter first – we all know that human rights are often mentioned and there are few who perceive the broad concept of human rights in our culture in a negative sense – but it is one thing to make constant reference to human rights it is quite another to really embed rights but if they are to be more than a fob to liberal conscience they need to be rooted in practice and in reality, and critically in legislation.

I am today calling for the new human rights legislation to have on its face – a right to social care and specifically a right to independent living. I have written a lot about why social care should be seen as a distinctive human right and not just subsumed into the right to health. Social care as we all know is much broader than a narrowly defined acute physiological or even psychological health definition – it is about the enabling of wellbeing, it is holistic, it is about relationship, connection and citizenship.

If we are creating a new Human Rights Act – then I would hope as a nation we can be adventurous enough not just to take the easy parts from the Convention on the Rights of Persons with Disabilities and the Covenant of Economic, Social and Cultural Rights – but to seek to push these to their ultimate and to be progressive and visionary.

The CRPD has a famous section which is Article 19 which recognises

‘the equal rights of all persons with disabilities to live in the community, with choices equal to others’.

The CRPD is the first legally binding instrument to give explicit recognition to the right to live and participate in the community. While the recognition of this right is an important step, having it in legislation is not sufficient. Successive governments have been criticised for their failures under the CRPD whether through the bedroom tax at UK level or other measures such as the failure to fully implement Self-directed Support in Scotland. They have been criticised for failing to live up to the requirements of the Convention. Bringing it into national law would be a huge first step for Scotland but it cannot be the last one.

Article 19 of the CRPD provides a clear vision for the future – that people with disabilities can live in the community as equal citizens. But simply being present is not enough – presence requires support for it to become belonging.

It is also important that older person groups and advocates see themselves within the scope of this legislation and come increasingly to recognise that these provisions if incorporated into national law give them added recourse and opportunity. We might argue till the cows come home about whether for instance ’dementia’ is a disability but that nicety should not be at the cost of empowering our older people communities.

And in passing I hope our political leadership will finally have the courage to create a Commissioner for Older Persons like Wales and Northern Ireland have and critically support the United Nations in its work in developing a Convention on the Rights of Older Persons.

But more than that I want to see a right to social care and a human right to independent living on the face of any new legislation brought forward to create a National Care Service. Unless it is there – unless it is enshrined in statute then the ability to achieve what Feeley hopes for which is a real re-orientation of power and influence away from the system to the supported person, a re-design which puts the individual rather than commissioner at the centre, will not be fully achieved.

We have had plenty legislation in the past – and it has been effort wasted in large part – Feeley made clear the extent of the implementation gap – I think it is a chasm not just a gap between aspiration and real life. It would be unforgiveable if we fail to achieve the vision of Feeley because there is not sufficient legislative intent to give citizens the ability to challenge and where necessary have recourse when things go wrong or do not meet what they consider to be their human rights.

This is not just a semantic suggestion. Incorporating a human right to social care in both pieces of legislation would show that our politicians are serious and not just playing to the crowd. It would bring with it a set of duties and accountabilities on a range of stakeholders and the ability to seek redress and to ensure all duty-bearers live up to their responsibilities.

So, what about this right to independent living – why is this so important? Why is it so important that people can be who they are in a place they call home, in a community they know and love, with people they wrap around themselves with familiar grasp and touch?

One of the first roles I had in social care was working alongside people with learning disabilities who were living in long term institutions or hospitals. My job was to support them to become more independent but also to support the staff they would work with to help them in the journey from closed hospital ward to open community.

It was hard but also such a rewarding experience. One person I remember well and who I go to know so well – summed it all up for me when I asked him why it was so important that he was moving into his own home. He turned to me and said: “Donald – I now have a name – for the first time in my life I have a name and a place I can call home. Now in his seventies he had entered that institution in his teens decades before. He was probably someone who we would now describe as having emotional and behavioural challenges. But for that he spent decades institutionalised. And of course, he was there in a time when quite literally we gave people numbers not names, categorised them by diagnosis, and really failed to see rehabilitation or recovery as in any sense necessary approaches. Because he had been there for so long, he had remembered the days when he was just a number on a patient file, a reputation, a diagnosis…now he had a place to call home.

For most of us being able to be who we are; to be with those we want to be with; to be able to create our own pattern and time; our own rhythm, and moment – is the essence of what independence is.

It is all about life and living on our own terms – a life free to find its own fulfilment

But it does not just happen. For so many who need support whether because of age or disability, condition or disease, circumstance or event,  independence must be resourced and supported – planned and prepared.

That is the real essence of social care at its best – not a system or process, but the developing and nurturing of a support relationship that transforms a life – that gives it a name like no other name.

Social care support allows us to belong – to be a vital vibrant citizen in our community; to have our words heard and to make us feel we matter; we have something to say that should be heard and which can make another love us or even to change society. Paradoxically true independence is not separation from another but closer connection to others.

That is why a human right to independent living is so important.

For a party of Government that prizes the goal of independence for the country – the Scottish Government should commit to embedding in legislation the right to independence for each citizen regardless of disability, age, or circumstance. You cannot foster an independent nation without nurturing an independent people.

And if we created a social care system, a National Care Service, rooted in the human right to independent living – then we might be able to work together to build a homecare sector which was founded on the principle of enabling independence to the fullest and what a change that would be…

It would give people the ability to question the obscenity of commissioned care visits which are task oriented and functional in nature; it would enable a citizen to challenge the presumption that their worth and value can be calculated in 15-minute timeslots.

It would help the whole sector – both the health and social care system – to revert to a preventative, relationship based, dignity infused model of dynamic care delivery rather than the embarrassment of indignity that we now too often are forced to deliver.

It would really help to empower people to be the directors of their care support rather than passive consumers of a take-it off the shelf care package, pre-determined by commissioners and delivered by providers with little scope for change. It would put real muscle and meaning to the talk of person-led rather person-centred care support.

It would help to foster and encourage innovation, which was able to be delivered because all providers, across all sectors were treated with equality and all citizens regardless of diagnosis or age were treated with fairness and equity.

When Nelson Mandela was imprisoned on Robben Island, he often recited a poem to his fellow prisoners. That poem was written by the Victorian William Henley and followed the loss of the lower half of his left leg: he was determined to remain ‘unbowed’ and ‘unconquered’ by this physical setback. The poem is called Invictus – and inspired not only a film by Clint Eastwood, gave its name to a male cologne but a new movement for injured veterans in the form of the Invictus Games. Invictus is the Latin for unconquered. It was a poem which for Henley made sure that he would remain independent, the master of his own fate, the director of his own life-story.

It was also a poem which my friend had in a frame over his bed in the first place he could call home – it described his own determination to be independent and not to be bowed or overcome – in a place where he was not a diagnosis, a number or reputation but a man with a name and a story – at last.

‘Out of the night that covers me,

Black as the pit from pole to pole,

I thank whatever gods may be

For my unconquerable soul.

 

Beyond this place of wrath and tears

Looms but the Horror of the shade,

And yet the menace of the years

Finds and shall find me unafraid.

 

It matters not how strait the gate,

How charged with punishments the scroll,

I am the master of my fate,

I am the captain of my soul.’

The prize of a reformed, reshaped, and re-invigorated care at home and housing support sector in Scotland are transformed lives in a transformed community. That is why the human right to independent living matters and why it needs to be at the heart of any new legislation for Scotland’s human rights and social care future. We need through independent living to give every person who requires support a name they can call their own.

Donald Macaskill

Home First: re-enabling homecare.

Next week Scottish Care will be holding our Homecare Festival. This is the second such event which explores and examines the major issues, challenges and potential facing the care at home and housing support sector in Scotland. It is once again a virtual event because of the continuing pandemic which we are all experiencing.

The theme of this year’s event is Home First and each of the days from the 15th to the 17th will have a specific focus. The first will Home First: issues of vision, sustainability and practice; followed by Workforce First: the critical role of homecare workforce and ending on Thursday 17th with Independence First: homecare and personal independence.

The phrase ‘Home First’ has become ever more commonplace in the last year. It describes a desire on the part of most individuals that the place where they would want to be supported and cared for is their own home. The emphasis upon the increased use of homecare is an important if subtle change in both social messaging and political commentary. But what lies beneath the catchphrase?

Homecare has undergone some dramatic change in Scotland over the last couple of decades and not all of it for the best. We have seen the gradual stripping away of non-personal, preventative and relational care and its replacement by a transactional, functionalist and reactive approach to care and support in one’s own home. The numbers simply do not lie.

Since the introduction of Free Personal Care we have witnessed a dramatic change in the way in which home care has been delivered in Scotland. This is evidenced in Scottish Care’s 2015 report, ‘Home Delivery’, which was premised on independent research on the home care sector in Scotland. It outlined that:

  • In 2002, clients receiving Free Personal Care accounted for 56.9% of all care at home clients aged over 65
  • By 2013, those receiving Free Personal Care accounted for 93.6% of all care at home clients over 65

A later report Bringing Home Care said of this:

“In 2004/5 there were 16,440 clients who received home care provision out-with the Free Personal Care criteria. By 2014/5, this figure had fallen to 3,410. We can therefore deduce that a dramatic reduction has taken place in relation to the number of clients receiving publicly funded support for areas outwith the definition of ‘personal care’, such as ‘mopping and shopping.’ Instead, those who access services are narrowed significantly to those with high level personal care needs and often, those with lower-level needs are left without support.”

What this effectively meant is that non-personal care has been squeezed out from prioritisation, eligibility and therefore public funding. This change in dynamic and delivery has had real consequences not just for the nature of the care but for its impact upon the individuals being supported.

The same Scottish Care report summarised this well in stating that:

“Care at home services have tended to be developed almost accidentally; in part as a reaction to the market, whether that be a shaping in response to social care commissioning or a reaction to health and wellbeing policy development.

This has caused many problems; a lack of commissioning for innovation and new developments, a stereotypical assumption of the contribution of care at home and housing support and more worryingly, a diminution of its central importance and the effective marginalisation of the capacities and skills of the care at home workforce.” (page 4)

Undoubtedly one of the casualties in the re-orientation of homecare has been the loss of an emphasis upon preventative care and support. The Christie Commission and more recently the Feeley Report articulated just how critical such an approach was not solely on fiscal grounds but for improving personal outcomes for individuals and for the wider wellbeing of community and Scottish society.

Nowadays preventative homecare is virtually non-existent because we have stripped out from the system the ability for frontline workers to form natural and meaningful relationships with those who they support. The ability to spend time with someone, to consistently get to know the needs of an individual cannot happen within the constraints of a functionalist approach to a task and time-oriented form of care. You cannot build a preventative model of care which fosters wellbeing within the constraints of what is commissioned as homecare today. Indeed, the last few months have witnessed the obscene rise of commissioned 15-minute visits – and given it takes 7 minutes to don and doff PPE – what chance is there for care and support delivered in a manner which affirms human dignity and individual autonomy, and which can embed a preventative approach to care?

If we are serious about enabling people to be independent and autonomous for as long as possible then we need to invest in that reality. Ultimately that involves significant fiscal prioritisation. It means that we invest in creating and retaining a talented workforce who are more autonomous, professionalised and enabled to do what they are best at, caring through relationship. It means that we in this Carer’s Week need to put our money where our mouths are and actually make the task of caring for a loved one less onerous and demanding, by properly funding carers, both paid and unpaid, and by developing meaningful respite supports and maximising the commitments we already have.

I attended a European meeting a couple of weeks ago which had as its focus ‘re-ablement’. It described a growing movement in Europe which we have seen here, which is all about less dependency upon long-term support and a shorter focus on enabling people to re-discover or develop skills of self-reliance and self-management that they may have lost. Now no-one can be in disagreement, I would suggest with such reablement approaches. Indeed, there is a lot of academic and research evidence to show both the fiscal, personal and societal benefits of such an approach. However, as I sat and listened to the growing reablement movement in Europe I could not help but reflect on the reality of care at home and support in our own country. Yes, reablement is the essence – not fostering dependency but encouraging independence, not doing for but enabling someone to do for themselves, autonomously, free and self-directed. But that is not what we have.

For in truth what we have in Scotland are not true reablement models but an elastoplast approach to enabling independence. We constrain reablement to within a defined time period, often twelve weeks, rather than moulding the support offered to the needs of the individual.

Homecare at its best is always about relationship. Reablement should be a process without time constraint but one which involves a multi-disciplinary team with diverse skills and mutual respect for each other’s competences. Such teams should include practitioners such as a homecare worker, community nurse, GP, community geriatrician, AHPs and others. They should be allocated a case load of individuals whose journey to reablement is not limited by the constraint of time or resource, or commissioned models, but is flexible and relational in nature. Workers regardless of role should be autonomous and trusted to make appropriate local, person-led decisions. Such a model has a built-in rhythm where the person is followed up at regular intervals and where real preventative care ensues to the benefit of society and the individual alike.

We need to be adventurous enough in Scotland to embed a re-visioned model of care at home which fosters independence, breaks down the barriers between professionals and different parts of the health and care system. We see some of this in the hospital to home model, but it is much wider and more holistic than that especially when it focuses as much of psychological, emotional and relational wellbeing as it does on physiological needs and frailty.

There is a real opportunity in the talk of a National Care Service for us to re-imagine homecare in a way that fosters independence through continuous personal care and care accompaniment. Preventative care at its best doesn’t create dependency but enables independence.

The concluding words of the report mentioned above still ring true:

“Preventative care is the only way in which social care can deliver – for current and future demand, for constrained budgets but most importantly, for people’s lives. Preventative care is not the opposite to greater self-management but a natural ally and requirement. And preventative care can only be enabled through the valuing and prioritisation of relationships, time and home care services.” (page 36)

 

Donald Macaskill

Details of the Home First event this coming week can be found here 

 

 

 

 

Fulfilling the promise: the potential of a National Care Service

My colleagues Dr Tara French and Imogen Caird have launched the fruit of over a year’s work which they had undertaken with another colleague Becca Young. ‘Coileanadh’ is the output of phase two of the Scottish Care ‘Collective Care Future’ programme. It presents a vision of care and support in Scotland created in collaboration with Andthen, a design strategy studio. The visual landscape embodies the contributions of a diverse range of expertise and experiences from providers, staff, people supported, families and wider partners in care and support in Scotland. The findings include eight concepts and three priority areas of focus relating to the overarching philosophy and culture, the policy and partnership enablers, and the way in which change can be enacted in social care practice.  The work also includes 39 practical steps for action across these themes.

I will let you have a read of the change landscape envisaged by the work, but I just want to focus on a couple of the themes raised.

This last week has seen the formal commitment in Parliament by the new Cabinet Secretary for Health and Social Care, Humza Yousaf, to the creation of a National Care Service. It is a bold vision – albeit one at the moment with little detail, but it represents a real opportunity to create a better way of providing and receiving support and care in Scotland. The authors of Coileanadh believe the actions identified in their work are both complementary and distinct to the recommendations of the Independent Review of Adult Social Care which first formulated the idea of the National Care Service. Coileanadh explores the synergies and areas of opportunity that can help to overcome the implementation gap and articulate the key requirements of a National Care Service, what it refers to as a National Care Framework. In doing so, they aim to offer a more holistic perspective on the creation of a National Care Framework and the resulting implications for how work in this context could be taken forward.

I have already reflected in this blog on a number of occasions on some elements of the National Care Service not least the positive image of a social care covenant, but today I want to take a couple of Coileanadh themes to underline why I think it is important that the distinctiveness of social care is continuously affirmed and why we need to adopt a life-course approach.

The distinctive integrity of social care.

Coileanadh starts with a call to ‘put the foot down’ in order to harness the moment and wider climate that currently exists to make significant change. There is a wide acceptance, accentuated by the experiences of the pandemic, that the model of social care support we have in Scotland is not working. Recognising the problem as the Feeley Report did so eloquently is a critical first step in addressing the challenge. It is, as many have said, not that we have the wrong legislation or the wrong vision, it is because we have failed to implement what we promised. Overcoming the barriers to implementation will be the major challenge of any new models or systems seeking to change the current landscape.

A critical part of creating a national care service is as Coileanadh argues the need to ‘develop a commonly accepted ‘hallmark’ of non-negotiable ‘conditions’ so that everyone is held to account for upholding these and working to ensure that these are supported. This would give assurance and confidence to all people involved, both in terms of quality and recognition.

Part of that is adopting a social care mindset which creates and establishes a more supportive approach to understanding people’s experiences, needs and preferences. This cannot be a functionalist and transactional model but one which is relational in essence, and which starts from a wellbeing perspective that emphasises individuality. We have to get beyond the accounting of value by commissioned timeslots, where care and its outcomes are measured by the length of a visit, with all the negative impacts such casual care arithmetic has upon supported person and worker alike.

A social care mind-set involves shifting the balance of power that clinical models are believed to hold in relation to decision-making and recognising the unique contribution of social care. In all the talk of a national service there is a risk that we try to ape and mirror the NHS. Social care is not health care. It demands and involves a different vision and perspective, one rooted in autonomy and control, personal independence and choice. The National Care Service cannot simply be the National Health Service for social care. Social care has value and importance in its own right not just as an adjunct to acute health care. As Coileandah states: ‘At the moment value is largely from a system-oriented perspective e.g., relieving pressure on hospitals, prioritising settings of support such as the drive for people to remain in their own home and a focus on ‘beds’, ‘placements’ and ‘packages’ as forms of measurement.’

Any model of social care has to be rooted and focussed on the needs of the person and not rescuing the fractures of the system. There is an opportunity in the consultation in the next few months to articulate and substantiate the vision of a distinctive social care mindset. One that moves us from talking about people being ‘treated’ to ‘supported’ and not saying ‘putting’ someone in a care home or ‘maintaining’ someone at home.

A life-course approach

Part of that re-envisioning of both the debate and the foundations of a new way of doing things is the necessity to adopt a ‘life-course approach.’ As Coileanadh argues we need to ensure that any model of social care is not rooted in a discriminatory and broken approach to personal life and wellbeing, not least in terms of age. Instilling a life course approach means normalising the ageing experience in order to view this as a natural journey.

Empowering people to have choice as they age and preparing society with information and awareness of support available should be critical elements of any national commitment. Coileanadh puts it well:

‘A focus on opportunities within the education system and enabling earlier conversations about the value of age and the celebration of wisdom, experiences and richness that comes with the journey of life would foster open and transparent conversations when reflecting on the life course and personal growth. Instilling a value for ‘levelling up’ will support the profile of older people and social care to the extent that people feel privileged to make choices, have options, and encourage people to work in a sector that is rewarding and with opportunity. All stages of life should be viewed with equal importance, e.g., later stages as important as birth, and people should be equipped with the knowledge to prepare for and navigate each stage and life event positively.’

Coileanadh is the Gaelic word which means to fulfil and accomplish. The conversations have been held, the words heard, the desires expressed. Now is the time to make the change happen. Now is the time to put aside vested interest and partisan position, and to adopt the holistic shared common purpose of creating something new and better. This is a task not just undertaken for those who use care support, who work and manage, who provide and regulate, who commission and finance today– but for everyone who follows. There really is an opportunity to fulfil the promise.

It is time to push the boat out, to seek a better horizon than the limitations of our sight, to dream bigger than our imagination, and to do better than our skills permit. And in the brilliant words of Edwin Morgan the unknown is always the best even in older age:

At Eighty

Push the boat out, compañeros,

push the boat out, whatever the sea.

Who says we cannot guide ourselves

through the boiling reefs, black as they are,

the enemy of us all makes sure of it!

Mariners, keep good watch always

for that last passage of blue water

we have heard of and long to reach

(no matter if we cannot, no matter!)

in our eighty-year-old timbers

leaky and patched as they are but sweet

well seasoned with the scent of woods

long perished, serviceable still

in unarrested pungency

of salt and blistering sunlight. Out,

push it all out into the unknown!

Unknown is best, it beckons best,

like distant ships in mist, or bells

clanging ruthless from stormy buoys.

From https://www.scottishpoetrylibrary.org.uk/poem/eighty-0/

Donald Macaskill

 

 

 

 

 

 

Donald Macaskill

Neighbourhoods that care: the importance of inclusion.

You probably did not notice but yesterday was European Neighbour’s Day. I have to admit I stumbled across it online in part because I am going to be doing a live input on Monday evening as part of the Glasgow Loves Europe network. The focus of that is on the importance of encouraging people to sign up for the EU Settled Status Scheme. More of that in a minute. But it did get me thinking of the very concept of neighbourhood and neighbours.

Clearly concepts of neighbourhood and what a neighbour is, and means are very individual but also culturally influenced. For a rural community like the one from which my family originated neighbourhood was an alien concept in its reduced metropolitan definitions. Everyone as far as the eye could see was considered a neighbour even if the physical distance to the next croft house might be half a mile away. There was an inter-twining of living and relating one to the other in Hebridean crofting townships which I have rarely seen or experienced elsewhere. It had its strengths of mutuality, solidarity and support but in truth it also had its weaknesses and at times a suffocating lack of independence and privacy. When I lived in Glasgow tenements, I came to love the neighbourly feel that is unique to that environment – from the responsibility of co-washing the close stairs to the extent to which folks looked out for one another but at ‘appropriate arm’s length. I cannot see Avril Paton’s lovely painting ‘Windows in the West’ without a stirring of fond memory.

Now, I know there is a danger of romanticising the concept of neighbour and becoming overly bucolic but those of us who have been blessed with good neighbours know the priceless value of the same, and those who have been the victims of the ‘neighbours from hell’ know the cost and pain of that experience. But the nature of our relationships with one another are hugely influenced by the degree we feel our community and culture roots itself around a sense of care and compassion for those who live most close to us.

I discovered yesterday that European Neighbours Day has been in existence since its foundation in Paris in 1990 and is held on the last Friday of May. It is an opportunity for residents’ groups and housing organisations to celebrate the value of being a neighbour, and to thank those who are.

There is a particular resonance to the idea of neighbour this year as I mentioned at the start, because we have just one month to go before some of our neighbours might be at risk of losing their status and rights as citizens of our country and members of our community.

I am not going to get into the merits or otherwise of the Brexit debate, but I do think it is vitally important that everyone is made aware that the end of June brings real potential change to many.

There are many thousands of women and men who have been intrinsic parts of our neighbourhoods, who have cared for and supported our fellow citizens, and have worked in health and social care. Many of the 6-8% of European citizens who make up our social care workforce in Scotland have applied for and received confirmation of their status. My concern is that because there have been so many care workers tired beyond exhaustion in working to care during the pandemic in care homes and community that some may have put applying for Settled Status onto the back burner.  There is a real sense of urgency that we ask and encourage folks and friends to check that they have made their application.

I am also concerned that there may be many older people, perhaps living with dementia or increasing frailty, some without necessary documentation, many without access to social media and information, and without technology to for instance take the photographs necessary to apply, who may miss out on the deadline.

Along with a number of organisations I signed a letter to the Home Secretary which asked for an extension to the cut-off date, but the UK Government has not heard this concern or request. Whilst this is immensely disappointing it is nevertheless important that in the next few weeks, we encourage everyone we can to apply if they are required to do so. Please follow the link and share it with any friends or acquaintances http://www.mygov.scot/help-eu-citizens

In the weeks ahead I am concerned that neighbours old and young, fellow members of the community of care and compassion which contributes to the vitality of Scottish life, may feel their status and value unaffirmed and diminished. I think I speak for many when I say we are better when we are linked one with the other, in hands stretched out to welcome rather than as barriers of rejection.

 One of my favourite poets and a Gael of real distinction is Iain Crichton Smith who wrote a beautiful short poem called ‘Neighbour.’ It is a poem that speaks of shared humanity, compassion and connectedness. For it is the same rain and pain that falls on us all, and I am made better by being with others from Europe and elsewhere in the one community.

Neighbour

Build me a bridge over the stream
to my neighbour’s house
where he is standing in dungarees
in the fresh morning.

O ring of snowdrops
spread wherever you want
and you also blackbird
sing across the fences.

My neighbour, if the rain falls on you,
let it fall on me also
from the same black cloud
that does not recognise gates.

A human right to creativity: older age and wellbeing.

In the last parliament and in the returning SNP Government’s manifesto there was a commitment to create a new Human Rights Act for Scotland. Indeed, the Scottish Greens, Labour, Liberal Democrats and the SNP all made manifesto commitments to enshrine rights treaties in Scots Law. Whilst there will doubtless continue to be debate the mood music is clear. Unlike the rest of the UK’s rush away from human right obligations within statute and practice, Scotland seems to be setting its path quite clearly.

I want to reflect in this blog – based on a talk on older people’s arts and creativity at a Voluntary Health Scotland/ACHWS event this past week – on why this is important.

One of the main acts we are likely to see in any new legislation is the incorporation of the International Covenant on Economic, Social and Cultural Rights (ICESCR) into Scots law. This would do many things but amongst them would be the enshrining in national law of an extensive range of ‘cultural laws’ and secondly embedding the ‘right to health’ and all that entails.

ICESCR and indeed the UN Declaration of Human Rights recognise that ‘the full promotion of and respect for cultural rights is essential for the maintenance of human dignity’ and that ‘everyone has the right freely to participate in the cultural life of the community’.

This is of huge significance I believe for older people.

The right to health as defined by the World Health Organisation is a recognition that we become and remain healthy not just as a result of the absence of disease but in part through the ability to enjoy, find fulfilment and to flourish in our identity and self. Psychological and physiological health and wellbeing are entwined.

This is where creativity, culture and health are going to root themselves. These offer us powerful levers to influence, shape and direct our health but also our cultural needs as a society embedding a holistic view of our health and wellbeing.

I think there are certain things in what with some justification I would term a human right of creativity that we need to address to maximise this potential.

The first is the need to address discrimination.

The pandemic and our collective political and societal response to it, has exposed the systemic and systematic ageism which lies at the root of our society. Naming and shaming it for what it is – the pervasive wallpaper which provides the backdrop of so much of our exchange and civic society – is self-evidentially important.

When it comes to the world of culture, we see this writ large, a mixture of blatant discrimination and lazy presumption. There is in all the chat and conversation about ‘building back better’ and restoring our cultural life – a pervading presumption that we are talking about particular forms of culture and the arts, and that those most impacted have been the ‘young’; all of which ignores the reality both fiscally and creatively that so much of the cultural arts and community are led by, directed by and paid for by those who might be defined as ‘older.’

More significantly there still pervades the presumption that creativity has a sell by, or use-by date attached. I find the ongoing debate of some psychologists and sociologists about when creativity peaks and when it declines a somewhat arid and turgid conversation – if you believe some of it and you are tempted to write your best lyrical poetry, or paint that breath-taking landscape or compose a hit after the age of 40 – forget it. Didn’t you know great poetry and art are a young person’s preserve?

The truth that I see is that creativity occurs and happens at all ages, sometimes with fading intensity, sometimes with a renewed vigour as time ticks on.

There is a lazy stereotype which needs challenging – for what I witness in creatives later in life is not just a re-treading or re-moulding of past action or product, but frequently a freshness, vitality and originality – a renaissance of creativity which utilises experience, insight, effectiveness and maturity.

To maximise the benefits of a human right of creativity we need to challenge the presumptions. Even working in a palliative and end of life context I have seen music formed, words created, art designed which has been both poignant, original and truth-telling.

The second thing we need to do is to maximise resource.

The fundamental right to exercise creativity, to be inspired, moved, motivated and impassioned, needs to be nurtured and resourced. If we are serious about recognising and validating all the research which links loneliness with mental health distress, which shows that someone connected through creativity benefits their health and well-being to a significant extent – then we must start recognising that financially investing in the creative sector and its role in ageing is of vital preventative importance. It cannot be an after-thought or added extra; it has to be a mainstream focus.

I know that as we recover from the pandemic our first and foremost priority must be to get people connected, families re-united and ‘normality’ returned but we must also plan for a better future. So, it is I long to see every care home have an artist in resident, every homecare organisation employing an itinerant creative, ever hospital ward having access to an in-house creative, because the evidence is clear – connect through creativity and you reduce isolation, loneliness, depression and so much more.  I have witnessed first-hand this to be the case with people with late-stage dementia who when they have lost the power to verbally communicate can still create and express their emotions and thoughts through those creations. You enable and enhance the ability of a person to see and feel themselves to be of worth, to be able to contribute and sense value.

Put bluntly spend money to save money – we have too many people who end up utilising scarce NHS resources when the adequate flourishing of creativity could have prevented so much decline and deterioration, despair and distress.

The creative arts can nourish real change and the right to creativity can foster the realisation of other human rights. In the past we have perhaps focussed too much in older person’s care and support services in seeing the creative arts as solely forms of entertainment and performance, but the use of art and creativity to enable voice, advocacy and articulation is immeasurable.

The creative arts can turn the ‘rage against the dying of the light’ into the sparks of new beginnings, new directions and new insights.

So how do we create the spaces and places where poetry can speak a truth more passionate, raw and real, than the clarion calls of policy put into practice or political proclamation? How do we enable people to discover until the moments of ending that they have a spark of creativity intrinsic to their humanity – perhaps dormant, perhaps supressed or hidden?

Art is about the flourishing of humanity and the fulfilment of personhood – it is therefore a fundamental human right – but all human rights cannot just sit on shelves gathering dust in legal tomes – they have to come alive in our communities.

I have been privileged to walk behind in the shadows and occasionally in the footprints of artists and creatives all my life. Those who have etched their impression into me at greatest depth have all of them been those late in the years of their creativity – and perhaps most especially my storyteller grandmother – a spinner of yarn and truth, insight and fable by a Hebridean fireside. She once said to me that she felt the need to tell stories more often as she got older rather than less. With that insight came the words: the older I get the more I know that silence is as important in a story as sound; the older I am the more prepared I am to listen to that silence.

I hope we can all listen to the silent creativity which comes with the maturity of age, and with the words that surround our attention be prepared to celebrate and advance the human right of creativity which belongs to all.

Donald Macaskill