‘Get up, stand up for your rights’: a call for an Older Peoples’ Commissioner. A blog for United Nations Day.

Heroes come in all shapes and sizes. At different stages of our life we probably most of us need heroes. For some they will be the celluloid stars of imagination, sporting greats or fashion and style icons. For many they are the famous and extraordinary, the remarkable and amazing. Our heroes will doubtless change over time but at the risk of exaggeration most of us need a few heroes in our hearts. They are the people who inspire and motivate us, who are exemplars of something we admire and whose lives push us to be someone we want to be. Regular readers of this blog will probably have guessed that most of my heroes are individuals who are not well known, many of them folks I have met along the way, but all of them people whose compassion and care, humanity and sensitivity have made them for me heroes of our humanity. That’s why during the first wave of the pandemic I spoke about ordinary frontline carers as being the real heroes of this year.

But in a more traditional way there are some people who have always inspired me and who have taught me something important about the essence of what matters. For most of my life I have found the story and example of Rosa Parks to be truly inspiring. Many of you will know her claim to fame and the heroism of her actions.

On December 1, 1955, in Montgomery, Alabama, Rosa Parks when travelling home from work on a bus refused to give up her seat in the “coloured section” to a white passenger after the whites-only section was filled. Bus segregation was part and parcel of the law at the time and was a physical embodiment of the race laws that existed in the United States. She was arrested for civil disobedience in violating Alabama’s segregation laws. Her quiet dignity led to many in the black community to boycott the Montgomery buses for over a year which became the first major direct-action campaign of the post-war civil rights movement. Eventually in November 1956 the courts decided that bus segregation was unconstitutional. She became in many senses the ‘mother of the civil rights movement’, spent her life thereafter fighting for equality and now even has a day named after her to commemorate her actions.

After years of struggling to achieve justice , after her retirement, Parks wrote her autobiography and continued to insist that the struggle was not over and there was more work to be done. In her final years, she lived with dementia and spoke and wrote with passion about the rights of older people and those with dementia.

Today is the 15th anniversary of the death of Rosa Parks in 2005. It is with a real synchronicity of time that today is also the 75th anniversary of the founding of the United Nations.

On October 24, 1945, 51 countries came together to create the United Nations. Its purpose was to promote peace and cooperation around the world.

The 75th anniversary is happening at a time of massive upheaval and uncertainty for the world living as we are through the  global health crisis which is the COVID-19 pandemic. The pandemic is resulting in severe economic and social turmoil. But as the UN has said this week it is also a reminder that times of struggle can become an opportunity for positive change and transformation. It is at such times that we learn what is intrinsic to life, why collective action and inter-national co-operation are so important, and perhaps why most of all peace is what remains the aspiration at the heart of the founding Charter of the UN.

There may be occasions when we can be tempted to forget the way in which the actions of others impact on our own story, but the global pandemic has shone a light on the way in which we are all inter-connected, one with the other, co-existing in our humanity and on our planet.

The COVID-19 pandemic for many of us has become a watershed. Even as we now respond to a second wave and no doubt prepare for future waves of the virus; even as we accept the reality that pandemics will become part of the pattern of our future, we are now being presented with opportunities to do better and be different.  These are the times when the lessons of our heroes can come off the page of our imagination and be written into action and response.

So, it is on this United Nations Day and in recognition of those who have stood up to injustice that I want to argue that Scotland needs to urgently decide to commit to creating the role of an Older Peoples Commissioner.

There has been much debate over the years about whether or not the time is right for Scotland to join Wales and Northern Ireland in the UK, and many other countries across the world in appointing an Older People’s Commissioner. I would argue that the time for such debate is over and that the pandemic response requires such a role to be created.

Ageism has been at the heart of so much of what has been the experience of older people during this pandemic. Whether it has been the suggestion that Covid19 was a ‘baby boomer harvest’ and only affected the old, all the way through to comments in the media this past week about the requirement to ‘segregate the old and vulnerable’ in order to protect and safeguard them. Throughout the pandemic there has been an obscene , conscious and at times unconscious, ageism at the centre of much social and media commentary. In practical actions, from a questionable ethical Guidance document which used age as a proxy for decision making, through to the inappropriate use of DNACPRs, to unequal treatment of older people in terms of access to social care packages, to the lack of agency and voice to those who receive care at the table of decisions – this pandemic has been a shameful enactment of profound age discrimination right across Scotland.  It is time for that to change. It is time for Government and political leadership across the parties in Scotland to take older age seriously and create a post for a Commissioner.

Scotland does indeed have a Minister for Older People but that is not enough – that is part of the structures of government, an Older People’s Commissioner is someone who is appointed by a parliament, responsible both to it but primarily to the older people of a nation, and who is enabled to speak and act with independence, able to hold those who rule and decide to account for responsible human rights based actions. She/he becomes an advocate for older age.

In the last few months I have had the privilege to work alongside Helena Herklots and Eddie Lynch, the Older People’s Commissioners in Wales and Northern Ireland respectively. Their ability to champion the voice of older people, to challenge and remind, to articulate and to speak out has been inspiring. Scotland needs such a voice to hold all of us to account, to remind all of us of our responsibilities. The election in 2021 should offer us that as a legacy to all who with older age have struggled in these last few months. I recognise  the creation of such a post is in itself no panacea but it is the first step in a journey to equality regardless of age. As a people, as communities and as a nation we must challenge the pernicious acceptance and allowance of age discrimination.

Growing up I was very aware that others had heroes who sat alongside those I held important. It felt to me that every night in my teenage years that I feel asleep to the sounds of the music of Bob Marley, the undoubted super-hero of my older brothers’ world. Over time – perhaps with sleep appreciation – I have grown to appreciate the awesome power of Marley’s words. One verse in particular resonates today as I remember those who have stood up for equality, justice and peace throughout the 75 years of the United Nations, including Rosa Parks who literally refused to move, and as I continue to work with others to create for Scotland an Older Peoples’ Commissioner.

Get up, stand up, stand up for your rights
Get up, stand up, stand up for your rights
Get up, stand up, stand up for your rights
Get up, stand up, don’t give up the fight

 

Donald Macaskill

 

 

Care home visiting:  the keeping of promises in winter: a personal reflection.

In the week that has passed one thing has dominated my conversation and consideration – care home visiting. On Monday the Cabinet Secretary published Guidance which amongst other things extended the potential of outdoor visiting to include up to 6 people, indoor visiting was enhanced to enable the possibility of physical touch (with PPE), longer visits (up to four hours) and involvement in activity with residents. In addition, there was permission given to allow children, pets, and hairdressers into care homes.

In the hours and days after the announcement I have held and heard many conversations with individual family members, providers, managers and staff. The conversations have sharply illustrated the degree of disagreement both about the visiting guidance but indeed about the risks and opportunities around visiting altogether.

I am writing on this subject this week to partly reflect the variety of views but also to attempt to identify steps that might be taken in the weeks ahead to give greater reassurance, and most critically to argue that unless we all of us work collectively over the next few weeks then the winter we are about to face will be a very dark one indeed.

There can be no doubt about a point of overwhelming agreement and consensus – namely that everyone involved in care homes both recognises the importance of restoring a more normal and natural family and resident relationship, and that there is growing evidence of the physical, emotional and psychological harm that is resulting from the enforced and extensive separation that has occurred over the last seven months. There can also be little grounds to dispute the knowledge that the risks of Coronavirus upon those who are our very old, frail and elderly are immense and considerable. No one wants to see a return to the devastation which brought such heartache and sadness to all our lives in the spring and early summer. But there are also points of real tension beyond agreement.

I have heard this week from providers, care home managers and staff who are deeply concerned and very fearful indeed about the measures which were announced on Monday. The grounds for their concern are numerous but chiefly they feel that the timing of the announcement and the start of increased visiting is miscalculated. They argue that at a time when cases of the virus are increasing in the community, when hospitals are beginning to fill up and when large parts of society are facing increased restrictions in order to protect, then this is not the time to extend visiting and increase the risk of transmission from the community into care homes. They further argue that the safeguards which we have been operating over the summer months are now at a state of real fragility, this is especially the case with care home testing where the experience of many is that delays in the UK Portal mean that some staff are having to wait for test results for a period of up to and beyond a week. They express further concern that without the testing of visitors that there will be real harm to residents from the risk of asymptomatic individuals coming into the care homes. They state that they have a duty of care not just to individual residents but to all residents and staff. They have also highlighted the huge pressure extending visiting places upon already stretched and exhausted care staff and managers at a time when they should be focussing on keeping people alive.

In addition, I have heard from family members who have written and spoken to me who are alarmed at the extension of visiting and see this as posing a risk to their family members. They have stated that they are the silent majority who are either happy with the level of visiting as it exists or simply fear for the extensions on similar grounds to those I have already mentioned. I know of families where some visit and others refuse to do so.

Then there are other voices, and I have spoken directly to many including representatives of the Care Home Relatives Scotland Group who I met alongside some providers and managers on Thursday evening. They have long campaigned for a normalisation of visiting and have broadly welcomed the new enhanced Guidance. Their case is simple, that it is a human right for an individual to be able to be with their family; that care homes are not prisons and that we have to respect and listen to the desires and will of those who are residents. They point to the research evidence from SAGE and others that the risk of transmission of the virus into care homes is very low, almost absent, with the appropriate use of PPE and certainly lower than other associated risks. They point to research which shows the level of deterioration and decline being experienced by care home residents devoid of contact and encouragement, presence and family love – they point out that no matter how good the quality of paid care is in a care home it can never replicate the love and touch of husband and wife, son and daughter and family in general.

I think it is important to state that everyone involved in this discussion and debate is starting from a point of real sincerity and desire to protect, keep safe and enhance the quality of life of residents in our care homes. The way that is to be achieved are the points of disagreement.

Even though the First Minister has made clear that guidance will not be mandated it is critical we work collectively together to move issues forward. I do not think this is the best place to go into the various individual elements of some of the debate, but I do think there are several actions which can be taken to improve things on the ground.

Firstly, we need to get to a working Covid testing system as a matter of urgency, one that can give as much assurance as possible to staff working in care homes. The current UK system is not working and the sooner there can be transfer to a robust NHS Scotland system the better.

Secondly, we need to develop a mechanism which will enable family members to either become part of the standard staffing testing system or much more desirable to introduce either in every care home or on a local community basis a rapid testing system that would enable them to be tested and get their results quickly, recognising their critical role in the care and support of their relatives.

Thirdly, the Scottish Government and COSLA need to make very clear that additional costs which result from enabling visiting to happen will be speedily met so that providers of all sizes are able to be sustained.

Fourth, we should collectively work to develop a system whereby the sheer managing of visiting (in these current circumstances) becomes the focus of one individual in each care home, whether volunteer or not, because we cannot over-burden existing staff who are already tired, exhausted and focussed on keeping life going and maximising health and wellbeing.

Fifthly, it is time to develop a National Care Home Visiting Action Plan and Statement where we bring together all the diverse voices and commit to how we will move forward into the spring. This is as important an area as any of the other realms of winter planning and will itself be no doubt impacted by other threats such as the growth of seasonal respiratory conditions, the flu and Brexit fall-out.

Sixthly, we need a degree of consistency around decisions taken by Public Health officials over when visiting is restricted due to community transmission. Explicitly we need all of us to know not only when this happens but also why. So why is it in some parts of the country that even window visits are being restricted but in other parts they are allowed? Why do we exclude visiting for 28 days in instances that a staff member tests positive and is not at work? This seems disproportionate and risks closure to visits becoming a rolling reality for some homes.

Seven, it is increasingly clear that we need more localism in the implementation of decisions. We need to find a better balance that avoids blanket positions being adopted and which enables individual care homes in specific parts of the country to work together with their stakeholders and family members to take decisions locally which reflect the risks in the local area. We are losing the ability to trust our care professionals.

Eight, as was shown in an open letter from some of our leading Infection Practice and Control experts in yesterday’s Nursing Times, we have to urgently develop a way of understanding infection practice in our care homes which is not simply the adoption of what works in acute health settings. Care homes and their residents are not equivalent or the same as hospital wards and their patients. One is an institutional setting, a care home is not; it is a home of friends and companions, who interact, mingle and mix. As we move into winter the ‘IPC fundamentalism’ which has been adopted around infection control practices needs to be replaced by an understanding of the imperatives of infection prevention which work for a different context.

Lastly, we must all of us get better at communicating and consulting. There will be many times when decisions have to be taken which are hard and challenging. It is especially important at such times that all involved both understand reasons and feel involved in the taking of these decisions, where it is possible to be so involved. It is equally important that when any new future Guidance is developed and issued that those most impacted are the first and not the last to know.

At the heart of all the debate and discussion I have held in the last week, one thing has continually struck me, and that is the need for us all to work together. At a time at which wider society is obscenely chattering about the possibility of segregating the old and most at risk, in some pretence of humanity, it is incumbent on all who are committed and concerned about care in care homes and in the wider community, to be united rather than divided.

It is not always easy to see the perspective of the other, especially when the urgency of action, the desire to protect, the passionate need to be present with loved ones, the fear of failure and blame, the terror of the virus, dominates our thoughts, But we can achieve very little without working alongside others.

The next few weeks and months will be ones of challenge for all who care. The nights are already growing longer and the evening sets earlier with each day. I have always been more at ease in the draughts of winter than the rays of a summer sun, but one thing I have discovered is that you cannot rest for long in winter, you have to keep moving on to the hope which spring beckons, bringing a new start and new beginnings. We cannot simply settle content with the ways things are at the moment – we need to work together to make sure contact with family is enhanced and safety of residents is deepened.

One of the poems I read this week is an old favourite. It is ‘Stopping By The Woods on a Snowy Evening’ and is one of Robert Frost’s earlier poems. It describes the woods as a place of beautiful silence and peace, but it is also a place that exists alongside danger, stress and activity, amidst obligation and responsibility. For me it is a reminder that we all have promises to keep, not just to keep going, but to be better, to restore, and to re-build. That is the essence of care wherever it is delivered. We cannot stand still in the winter peace – we have to move forward. “I have promises to keep, And miles to go before I sleep.”

As we move into winter it is critical beyond the obvious to state that we must find ways of being open in our dialogue, working together and making sure that we maximise the protection of folks from the virus but at the same time increase the alongsideness of family presence. I believe we can do this but not in our own defensive and reactive siloes. We owe it to those we love to work together with a responsiveness and mutual regard which is at the centre of all good care.

“Whose woods these are I think I know.

His house is in the village though;

He will not see me stopping here

To watch his woods fill up with snow.

 

My little horse must think it queer

To stop without a farmhouse near

Between the woods and frozen lake

The darkest evening of the year.

 

He gives his harness bells a shake

To ask if there is some mistake.

The only other sound’s the sweep

Of easy wind and downy flake.

 

The woods are lovely, dark and deep,

But I have promises to keep,

And miles to go before I sleep,

And miles to go before I sleep.”

Robert Frost

 

Donald Macaskill

Palliative humanity: living through dying a blog for World Hospice and Palliative Care Day

When the story of the pandemic is finally written I hope that one of the chapters in that tome will be the recounting of how as individuals and as a society we have dealt with death and dying. Today is World Hospice and Palliative Care Day which provides an annual opportunity to reflect on the importance and significance of palliative care in societies across the world. Scotland is blessed by having a level of palliative care provision and excellence rarely matched elsewhere, even if we have fallen short of our aim that by 2021 all who need and require palliative care would achieve its easy access. But what can we say of palliative care during the pandemic?

“Without the skill and quiet professionalism of the palliative care nurse none of us would have got through what we have just experienced.”

Those were the words of a care home nurse at the height of the first wave of the pandemic. They mirrored the experience of dozens more. There was and still is a real sense of palliative professionals wrapping their arms of support around social care and health colleagues in care homes across Scotland. Where others talked, they walked in and worked in honest care partnership. It was my privilege to take part in weekly then less frequent virtual calls with palliative care colleagues from across Scotland and I can lay testament to the truth that some of the real unsung heroes of the last few months have been the women and men who work in palliative care and palliative medicine in both our hospitals and in the community. Their lack of recognition is perhaps itself illustrative of the discomfort of wider society in relating to issues of death and dying.

Today is an opportunity to reflect upon the criticality of palliative and end of life care to thousands upon thousands of people across our society. For me personally it underlines the importance of recognising that access to good palliative care should be considered as a fundamental human right in much the same way as we recognise that access to health in general is a human right. Last year I argued this case in a session at the Scottish Parliament stating that the way in which we care for and support those who are dying is as important as the way in which we care for and support those who will go on to recover and live through any illness. I’m not at all convinced we are there yet!

If we are able to prepare for our own death, then we engage upon the most person-centred activity we will ever undertake. Being in the presence of those who are dying teaches us that every death is unique and individual and that the art of such presence is to learn to mould your care to the needs and wishes of the person who is dying. It is to learn the lesson that silence speaks more than sound, that touch teaches more than restraint, that our hearts cradle hope. There is no textbook on the last days and hours of life albeit that we recognise the signs and symptoms of life ebbing away as the body shuts down and breath departs. Every death is unique and the care of those who are dying requires skills of empathy, compassion and alongsideness which are nurtured over many years.

If it is an overstated truism to say that death encourages us to live our lives to the full then it should also be transparent that we all of us need to learn how to die well. Palliative care is not just about the last few moments of breath but the times in which we are supported and cared for in the days, weeks and months before we die.

But of course, as a society we have never really been comfortable with talking about never mind planning for death. Death is always something that happens to someone else and we let it into our head only when the death of those we love, or a person of our own age reminds us of our own fragile mortality.

It is too early to say what the pandemic experience will mean for our collective understanding of death and our ability to be more skilled at living in the face of our own dying. For some undeniably the experience has been one of acute pain where we have been prevented from being at the bedsides of loved ones, have been unable to say goodbye and be present with touch and tear. For some it has been an experience which has robbed them of precious time to spend with others and do all that was planned as they have lived with terminal illness in a world locked down on loving and togetherness.

There are many things we need to learn to do better and differently. There should never be any excuse or reason for denying the presence of family and loved ones (properly protected) in the days before and at the moments of death. There can be no justification for allowing people to die without those they love and want beside them – even with the caring professionalism of strangers beside them – for that is a loneliness we can never end. We have to do better at recognising that end of life care in care home or hospital is not just in the final hours when someone has lost so much of the spark that is their self but, in the days, and weeks before. We have to get better at balancing risk with love, presence with absence, quality of life with quantity of life.

But over all of this the pandemic and its daily echo of mortality as numbers of lives lost etch themselves into our hearts, should also teach us the essential truth of palliative care. We all of us should be better at preparing and planning for our dying and the last days of our living. That is what anticipatory care planning is all about. It is the recognition that if we are able, planning our own death is as important as the plans we make for the birth of new life into the world. Tragically the abuse of Do Not Resuscitate forms and their indiscriminate, ageist application by some during the pandemic, has damaged the concept of planning around dying. But the ground must be recovered because a life which does the work of death before the moment of dying is one that is undeniably more settled and peaceful for both the person and those around them.

I am reminded of this truth whenever I read the words of those who are dying. Now lest anyone accuse me of simplistic naivety I have been around death long enough to know that moments of quietist peace are balanced by times of angry fear and raw rage. Death can be terrible and terrifying in equal measure to its ability to be peaceful and calm. But as possibly one of the most important things we will anyone of us do then we owe it to ourselves and those we love to be prepared.

I have seen over the years that dying can create new life and family restoration, it can bring about healing and forgiveness. Past experiences are seen through a new prism of priority and what truly matters. Dying moments can be our best time, they can gather up the story of our living and loving into a gift of touch and solidarity that nothing can equal. That’s why we owe it to all to be present at times of death. That’s why we owe it to all to give time in the weeks and days before death. Honesty grows slowly in ground which has been fallow but its fruit is a memory whose taste remains forever. That is what good palliative care is all about.

Over the years as I grew up, I came to love the acidic and wise wit of the Australian Clive James. After being diagnosed with leukaemia and emphysema in 2010, James said that his terminal diagnosis led him to “start saying goodbye” through his poetry.

He captured the pain and agony of departure, of planning and preparation in his usual witty style in a poem called Japanese Maple, which is about a tree given to him by his daughter. In it James adores the tree’s soft presence in the back garden of his home, yearning to live until autumn in order to see its leaves “turn to flame”.

Japanese Maple

Your death, near now, is of an easy sort.
So slow a fading out brings no real pain.
Breath growing short
Is just uncomfortable. You feel the drain
Of energy, but thought and sight remain:

Enhanced, in fact. When did you ever see
So much sweet beauty as when fine rain falls
On that small tree
And saturates your brick back garden walls,
So many Amber Rooms and mirror halls?

Ever more lavish as the dusk descends
This glistening illuminates the air.
It never ends.
Whenever the rain comes it will be there,
Beyond my time, but now I take my share.

My daughter’s choice, the maple tree is new.
Come autumn and its leaves will turn to flame.
What I must do
Is live to see that.That will end the game
For me, though life continues all the same:

Filling the double doors to bathe my eyes,
A final flood of colors will live on
As my mind dies,
Burned by my vision of a world that shone
So brightly at the last, and then was gone.

© Clive James, 2014

Donald Macaskill

 

 

The invisible pandemic:  the urgent need to renew homecare

If the weather allows this weekend I will hopefully escape the house and get into the garden to start to prepare the soil for the seasonal planting of bulbs. I’ve always loved gardening and open spaces, perhaps it’s me getting in touch with the Hebridean genes of ancestors who farmed the land, even without their skill and ability. Even when I have been in a place without a garden I have always wanted green life in my space. This time of year, in particular, is one that gives me a sense of the natural rhythm of existence, as planting bulbs kindles my inner hope for renewal and rebirth after the anticipation of the deadening and bleakness of winter. But of course, as any gardener knows only too well the quality of the resurrection of vibrancy in the spring, the depth of colour and vigour of harvest, is always conditioned by the soil and its preparation. You cannot sow hope in rotten soil.

On Wednesday along with colleagues I will be starting a three-day ‘Homecare Festival. It is an attempt to focus on the astonishing work of care and support that happens in the heart of our communities. On any one day of the week there are tens of thousands more people being cared for and supported in our communities than in our care homes and hospitals combined. They are being supported to play their part as full citizens of their communities. It is a care and support that gives them independence and freedom, meaning and purpsoe, contribution and value. Yet the homecare sector is one which is often ignored and rarely recognised. Never has that been more true than during the last few months of Covid19. Despite attempts it has been rare for the media to tell that story or focus on what has been happening in our communities. Perhaps understandably but no less inexcusably our focus in society has been on events in care homes and hospitals, and not in the homes beside our living. This needs to change.

In the last few days as I have prepared for the Scottish Care Homecare Festival, I have read report after report detailing the silent and invisible pandemic which has been affecting our old and disabled in communities right across Scotland.

At the start of the pandemic tens of thousands of packages of support were withdrawn – in part by local authorities seeking to prioritise resource and in part by families who feared that staff going from home to home would bring in the virus. The effect of these interventions is only now becoming clear. A couple of weeks ago a homecare worker wrote to me and detailed some of what she was witnessing and seeing. She spoke of older folks she had known for a long time showing visible signs of decline and deterioration; of a gripping sense of isolation and loneliness because with restrictions some people living with disabilities were cut off from friends and family; she recounted the growth in cases of body sores because folks had become immobile without exercise and unable to go out into the community; and most worryingly she told of the dozens she knew whose mental health had been shattered by lockdown. The stories of thousands of individuals who receive homecare supports will not often be heard or told but their pain during the pandemic is no less real for the lack of telling.

We stripped away thousands of packages of support and it is clear as we start the possibility of yet more restrictions moving into autumn and winter that many of these have not been restored. Some undeniably because family are still caring because their work has not re-started. But I fear that many more have not been re-started because of a decision to save money and a presumption that if people coped during the pandemic then they can cope now. I have heard such folly voiced and foolishness it is indeed. If for no other reason we have to reckon in that calculation the truth which tells of a 25% increase in ‘excess deaths’ in our communtiies of people living with dementia, diabetes and orher conditions.

Even before the pandemic homecare in Scotland was in crisis, it was rooted in a rotten soil. That rottenness was for many reasons. Chief amongst them was because we have failed to embed ground-breaking legislation which gave citizens control and choice of their care, instead the ‘system’ has held on to its power and resource by refusing to inform, to give people control over their budgets, and to really empower people to take control of their lives. The system has played the game of ‘self-directed support’ but not released its spirit, vested interest has cut off the shoots of real change before they could flourish.

Even before the pandemic we witnessed the perversity which comes from presuming that care can be delivered in fragments of time. Across the country there are packages of care counted out in 15 or 30 minutes created by number checking commissioners of care without regard to the urgent need for people to be treated as human beings rather than coins in a machine. There is no way one can deliver dignified, rights-based care and foster and nourish relationships in slivers of time.

Even before the pandemic we treated our frontline care workforce shamefully. Local authorities whilst boasting of their own Living Wage Employer and Fair Work practices bought care on the cheap by drawing up contracts with care companies knowing that their allocation of resources prevented those organisations from delivering fair terms. And to add insult to injury the same authorities introduced electronic monitoring systems to effectively ‘tag’ frontline carers so that they could be stalked and controlled.

The pre-pandemic state of homecare in Scotland – and therefore by volume – social care as a whole was shameful, pathetic and rotten. And it still is. Radical change is needed. If we are to flourish and come to a spring of renewal the soil needs to change and the system needs to be overhauled.

So, at the Homecare Festival I hope we will hear of a vision which will be about giving control and power to the citizen who is supported and who uses care rather than to commissioners and bean-counters. I hope we will hear of a vision where workers are trusted and given autonomy, not clocked and checked at every turn. Where terms and conditions are resourced for equality and fairness rather than a two-tier system where local authorities look after their own first and others get the fag-end of attention and support. I hope we will hear a vision where prevention rather than reaction is at the heart of the packages of support we create. And most of all I hope we hear of a vision which adequately resources the care of people in their own home rather than seeks to buy care on the cheap. All of this would show we care about care rather than empty slogans.

At the heart of all this – as we enter a Covid autumn and winter, I hope that when we plan, we remember that many of the thousands of family carers who took over care or carried on care without support are absolutely on their knees. Families are exhausted, the act of 24/7 caring has spent and drained them. They urgently need support especially where traditional day services and respite opportunities have been stripped away during the pandemic. We need to critically re-prioritise homecare and seek to invest more not less.

Across Scotland today there are thousands of people in urgent need of support to rehabilitate their physical bodies after months of decline, there are hundreds in need of psychological and emotional support after isolation and emptiness; there are yet more in need of being made to feel that they matter, that they are noticed, that they are valued.

There is much talk of winter planning –but if we do not plan to tackle this pandemic in our communities and in the homes of those who require support and care then we will reap a terrible harvest of regret in the spring. We need to renew the soil, replace the rotten practices of the past with refreshed vision and humanity. We can only sow hope and healing in conditions that allow it to grow.

The great Irish poet Derek Mahon died on Thursday night. He was a poet of his time asking uncomfortable questions to those who would rather not hear. I think homecare asks us the same. We can go through the next few months choosing to ignore the silent pandemic in our streets, in the homes around which we settle our living, or we can open our eyes to create a vision of a better way of caring for and upholding one another. We can collude with the ‘old conspiracy’ of staying as we are, settling for the soil we have or we can create a fresh hope for spring because the truth of homecare around us should surely ‘exact more interest than casual pity.’ Mahon says it all in his brilliant poem  ‘Spring in Belfast’ and its last stanza in particular.

 

Walking among my own this windy morning

In a tide of sunlight between shower and shower,

I resume my old conspiracy with the wet

Stone and the unwieldy images of the squinting heart.

Once more, as before, I remember not to forget.

 

There is a perverse pride in being on the side

Of the fallen angels and refusing to get up.

We could all be saved by keeping an eye on the hill

At the top of every street, for there it is,

Eternally, if irrelevantly, visible —

 

But yield instead to the humorous formulae,

The spurious mystery in the knowing nod;

Or we keep sullen silence in light and shade,

Rehearsing our astute salvations under

The cold gaze of a sanctimonious God.

 

One part of my mind must learn to know its place.

The things that happen in the kitchen houses

And echoing back streets of this desperate city

Should engage more than my casual interest,

Exact more interest than my casual pity.”

 

Donald Macaskill

To find out more about the Homecare Festival from Wed 7th to Friday 9th  see https://scottishcare.org/cah-conference-2020-2/

Turning the world purple: a reflection for International Older Persons Day.

Today the 1st October marks the 30th Anniversary of the International Day of Older Persons. It is a United Nations event which focusses on continued age discrimination across the world and which this year, also the “Year of the Nurse and Midwife”, seeks to highlight the role of the health care workforce in contributing to the health of older persons. In doing so it seeks to give special recognition to the nursing profession and to give a primary focus to the role of women in health and care.

When these themes were decided some time ago no one could have imagined that we would have faced the traumatic year that we have had and are still experiencing. It has been a year which has underlined the need to focus on older people not least because of the appalling truth that the majority of the million people who have died as a result of the Coronavirus pandemic have been aged over 75.  At different points over the last few months we have had occasion to reflect on the existence of unequal treatment of those who are old in the way in which society has responded to the pandemic. At the start we had casual careless talk describing Covid19 as a ‘baby-boomer harvest’, then we had questionable ethical frameworks which envisaged age to be the main criteria to use in any decision to withhold treatment should resources become restricted, and most recently we have heard of suggestions that we should ‘lockdown the old’ in order to let the rest of society get on with life.

Our attitudes to older age, whether positive or negative, are, I believe deeply influenced and shaped by our experience of older age in our early years and upbringing. It is those experiences which will to a greater or lesser extent embed within us a belief that older age is something that continues to have value and offers contribution, or alternatively that we associate older age with deterioration, incapacity and a lack of creativity.

I have mentioned before in this blog my Aunt Effie from Skye. When I think of age, and older age, I think of her. She was a character who stood physically tall and strong, intellectually robust and rooted, at one and the same time melancholic and reflective, fun and frivolous. I marvelled at her daily consumption into her nineties of the written word from novel to textbook, from newspaper to magazine. I was left enthralled by her forensic ability to trace her family tree back three hundred years, a feat achieved in the pre-internet age through telephone and letter – and all at the age of 95. So, for me age has always been a chronological clock that granted the individual free expression, space and time, that blossomed creativity and insight. That is not to deny my own personal awareness and family truth of those who have been limited and imprisoned by dementia and decline, whose lives have been shortened by the lostness of disease and whose living has spoken of sadness and confusion. But overwhelmingly older age is for me a positive characteristic.

So it is that I have always been very fond of the brilliant iconoclastic poem ‘Warning’ by Jenny Joseph which at one stage was the most popular poem in the UK. You might know it: –

“When I am an old woman I shall wear purple
With a red hat which doesn’t go, and doesn’t suit me.
And I shall spend my pension on brandy and summer gloves
And satin sandals, and say we’ve no money for butter.
I shall sit down on the pavement when I’m tired
And gobble up samples in shops and press alarm bells
And run my stick along the public railings
And make up for the sobriety of my youth.
I shall go out in my slippers in the rain
And pick flowers in other people’s gardens
And learn to spit.

You can wear terrible shirts and grow more fat
And eat three pounds of sausages at a go
Or only bread and pickle for a week
And hoard pens and pencils and beermats and things in boxes.

But now we must have clothes that keep us dry
And pay our rent and not swear in the street
And set a good example for the children.
We must have friends to dinner and read the papers.

But maybe I ought to practise a little now?
So people who know me are not too shocked and surprised
When suddenly I am old, and start to wear purple.”

There is a delicious irony in that when she grew older Jenny Joseph was asked if she would start wearing purple anytime soon, to which she replied, “I can’t stand purple. It doesn’t suit me.”

Today as we reflect on what active and healthy ageing is all about – even in the midst of a pandemic which threatens older age – I think it is time for us all to start to wear purple. It is time to turn upside down the conventional assumptions about age and challenge the prejudice which devalues older age and puts youth on a pedestal. It is time to shout down and decry the subconscious discriminatory presumption that the old are incapable of individual choice and decision, of creative contribution and radical change.

On too many occasions during our pandemic response we have treated those who are old with an obscene paternalism and syrupy protectionism which ignores their intelligence and capacity, their autonomy and energy. We have talked about corralling residents in care homes into units to protect them; we have failed to ask and give voice to those whose lives we have restricted and whose capacity for consent we have removed; we have done to rather than working with. Even today we see this paternalism in the desire of some politicians and commentators to rush to become the jailers of the elderly on the pretence that we must protect those most at risk.

The old are not passive passengers in life but they are the living witnesses of years of hard knocks and experience. Age enables in many the ability to nurture the humility that comes from error and failure and from that ground to grow an honesty and sensitivity to others. We ignore that insight at our peril as we repeat the mistakes of the past in every passing moment.

Stepping into the future with our older citizens, wherever they live in our communities, whether alone or with others, is about making a commitment that no one will be left behind, no voice will be unheard because it has lost its strength, no contribution will be dismissed because it is articulated by age.

To be valued, to find a place, to be able to give, to contribute, to participate are fundamental to our health and well-being. Healthy ageing is not about keeping simply the body and the frame of skeleton alive, it is about enabling the passion and power of age to express itself in the whole of our lives and communities. So, as we all grow older in Scotland, I hope we can also tap the potential of every individual in order to maximise the health benefits which come from feeling you can still make a difference.

So, in your place of home, in your place of work, in your place of relaxation, think today about how you can include all the generations, and value especially the gifts, abilities, capacities of those who are older. Think not just about how we protect and keep safe but about how we listen to, learn from, allow to grow and critically allow older age to disrupt and contradict.

Let us all therefore work together to step into a future where every older person can find their place to give, share and be. Let us all  wear a red hat that doesn’t suit and learn to kick over the traces of conformity! It is time for all of us to start to practise for the days of purple.

Donald Macaskill

 

 

200 days of emptiness, waiting and yearning: a reflection

On Monday it will be 200 days since March 12th/13th when the majority of Scotland’s care homes shut down in order to protect residents from the emerging threat of coronavirus. It is a point in time which comes as the seasons change from a late summer into the shortened days of autumn beckoning in the coldness of winter. Spring and summer have been and gone and the world as we knew it at the start of the year is unrecognisable. These have been days of real pain and emptiness for thousands, and of waiting and yearning for countless more.

I feel it is an anniversary of time which needs to be marked and which should cause us to pause and reflect on how we should be planning and preparing, both practically and psychologically, for the seasons and days to come.

Since the first days of spring when Coronavirus started to reap its harvest, we have lost countless thousands across the country to this virus. We have learnt many lessons taught us in a school of pain and cruelty, sadly some have come too late for the knowing and others have been appreciated too slowly. The daily statistics have become like an inexorable tick of a clock with numbers increasing every day, yet their regular recounting hiding the true story of thousands whose lives have been changed for ever.

As we remember 200 days, we know that there are too many who have lost their lives before their time, too early for parting, too soon for absence. We know that there are thousands who have not been able to be present, to sit alongside loved ones to say goodbye, to hold a hand and caress a face, to wipe a tear and simply to be silent before endings. We know that there are thousands who have not been able to celebrate lives well lived, to spark memories with others and laugh and cry together in funeral and farewell. This has been the unbearable cost of these days.

During those 200 days there have also been those struck down by the virus who have recovered, both in care home and community, but who are marked by the legacy of the disease in a way that has forever altered their living. What has become known as ‘long Covid’ is a set of conditions and a legacy of illness, that we are only now beginning to appreciate, and which will result in extensive need for rehabilitation and recovery for countless years.

So, there has been no shortage of emptiness drained from life and community in the last 200 days. The emptiness of grieving, of lostness and aloneness. There has been the emptiness felt by those who have struggled with the full reality of lockdown, whose mental health and self-esteem have been shattered and diminished; whose hopes and aspirations for their lives have been set aside; whose businesses and careers have been wrecked or abandoned. This has been six-months of real desolation for too many – and yet for so many it has been pain endured in silence, in absence, in hiddenness and on the edge of noticing.

These have also been days of waiting. Waiting to return to normal only to learn the language of a new normal; waiting for life to re-start and living to re-open only to discover a reality unfamiliar and unrecognisable; waiting for exam results and university to start only to experience the pain of anxiety and a strange new beginning; waiting for furlough to end only to be told of redundancy and loss of role; waiting to be re-connected, for shielding to end and encounter to start; waiting for a tomorrow which feels more like our past.

200 days which have changed us all. 200 days which have brought out the best of humanity, have shone a light on the exhaustion of love and giving, but have also witnessed the predictability of ambition, selfishness and frustration.

So, what of the future. As we sense a slipping back into the inevitability of more restrictions, the fear of a return to a pain which is now one that we know all too well, a diminishing of the loss of hope – what now?

I have held many conversations over the last 200 days and in the midst of sadness and emptiness, the characteristics and emotions that have struck me the most, whether on the part of carer, manager, family member, supported person or care home resident, has been a sense of determination and hope, of energy and commitment of care to the other given to the point of exhaustion, of a deep yearning to survive and do better in the midst of the waiting and the absence.

So, the next 200 days can and must be better even though they may be harder – for if we do not believe that, then the sacrifices and loss of the former would be too much to bear.

We need to plan and prepare to a degree and extent which we have never before attempted. Of course, I am not naïve. I do not imagine that even with the best precaution and best planning that we can prevent yet more pain and yet more damage from this virus. But whether it be by getting a testing system that really works rather than promises and fails to deliver, whether it be through robust practice in terms of infection control in our communities and care homes, whether it be through supporting those on the edge of despair and hopelessness in our communities, whether it be through simple acts of neighbourly kindness,  then we can build on what we have done to prepare better for tomorrow.

And some of my personal hope would be:

That we recognise that we have to create opportunities for family members to better re-connect with their loved ones in care homes. We know the desolation and emptiness; we have heard the cries of lostness and have seen the signs of deterioration and decline caused by enforced absence and the loss of touch and contact. Whether it be through extending the time for visits, better resourcing care homes to have additional staff and volunteers to support visiting, by the use of testing to protect visitor and resident, we are all of us determined to learn and improve. We all of us need to make the next 200 days better and more connected.

That we really accept that we need to start to prioritise what happens in our communities as much as in our care homes. There is a growing awareness of all those who have lost their lives in our communities both to Covid and more significantly to other conditions in the last 200 days. We need to make sure we do not remove the homecare and supports which are the lifeline of so many as we face challenge of resource and workforce into the winter. We need to recognise that we have depended on family carers who are now exhausted and drained and cannot face the future without respite and recovery.

That we recognise that just as it was in March, so it is in October, that the first line of defence against this virus is the individual action and responsibility of every citizen. We need to rediscover a collective solidarity which strengthens us to sacrifice our freedom and intention in the service of and for the protection of others who need our loving and caring to be seen in our actions.

That we develop a testing system to protect all whether young person or old, whether care home resident or worker, whether schoolteacher or student, homecare worker or NHS staff member. The imperative of using testing as a protection has never been louder but so too is the importance of recognising that it is not a panacea merely a critical tool in the battle we are engaged in.

That all who can will take up the opportunity to be vaccinated for the flu recognising the real risks of overwhelming care and health systems in the weeks ahead.

That we recognise that there are thousands of staff in care home, community and hospital who are not simply weary but drained and exhausted, and that we do not just speak of support but show it in actions both large and small to alleviate, recognise and reward.

That we do not lose hope and that we continue to feed and foster our yearning for a better tomorrow, a brighter spring and a healed summer.

For even in the last 200 days life has won through against all the death and destruction. At 103 John fought off this pernicious disease and now sits laughing and story-telling with his fellow care home residents. At 38 Jane was able to come through weeks of intensive care and rehabilitation and is now able to hold her child and laugh at the small things of unimportance. At 17 and in a strange university experience there are students falling in and out of love with equal measure in the predictable rhythm of life; that in ceremonies across the country there are lovers committing to a future of togetherness; that in creative ingenuity ideas are being born out of hard work and reflection; that there are artists painting a future of purpose and poets ploughing the depths of emotion; that there is even in the midst of autumn a renewal which overcomes the decay and despair.

The next 200 days will undoubtedly be hard and there will be times of barren emptiness and pain but one lesson the last 200 has taught me is that we cannot make the journey onwards alone, but must all walk through into our future together, without casting casual blame, scoring points, asserting ego but upholding one another and speaking love into emptiness.

We pull ourselves forward together through our yearning. In the words of Seamus Heaney in ‘The Cure at Troy.’

“No poem or play or song
Can fully right a wrong
Inflicted and endured.…

History says, don’t hope
On this side of the grave.
But then, once in a lifetime
The longed-for tidal wave
Of justice can rise up,
And hope and history rhyme.

Believe that further shore
Is reachable from here.
Believe in miracle
And cures and healing wells.”

 

Donald Macaskill

Trust in care : a personal reflection

I noticed in my calendar this morning that Monday is International Peace Day. It’s a day designed to promote peace among nations and peoples. The UN established the day and its website describes the day by stating that ‘peace is recognized as both an innate state of being, and a dynamic evolutionary process wherein constructive growth can occur and the children of this and future generations may gain hope for a better world to inherit.’

A bit wordy but in essence peace is both internal and relational. Reading the description reminded me of a phrase from the work of one of my favourites, the contemporary American novelist and short-story writer Veronica Roth, who wrote that:

“In order to have peace, we must first have trust.”

I will leave world peace to the Nobel prize winners but there is a truth in the linking of peace and trust which is inescapable. Whether in the realm of international politics, in the interactions of lovers, in the contracts of care or during a pandemic there is a profound interconnection between a sense of peace and ease and the extent to which trust is present.

But the problem is that if there cannot be peace and what comes with it without trust then there has been very little trust both before and during the pandemic in the realm of social care.

Where else would you get the extent of mistrust as in some of the contractual terms and practices between local authorities and social care providers. Explicitly what does it say of trust when electronic call monitoring systems originally designed to keep lone workers safe are used in homecare services to effectively electronically tag workers, to pay providers only for their contact time and to penalise for late arrivals or only to pay for a proportion of attendance. As one colleague put it – it is almost like saying to a nurse in a hospital you only get paid for the time you are at a patient’s bed but not your walking between them. There is little trust in the way we contract and provide care at home and housing support in Scotland. Without trust there can be no maturity of relationship.

Where else but in social care in the community would we treat workers with so little respect and maturity that we clock them in and out like some sort of Victorian factory, failing to give them autonomy and the capacity to make professional decisions? So, if they come across someone who is distressed by loneliness and simply wants company they have no capacity to sit and have a cuppa which restores. Why do we not have a system that instead of clock-watching care enables a worker to design their day around the needs of the supported person  rather than the demands of the system? Instead we have a system  of mistrust designed to drive down costs as much as possible.

This lack of trust was endemic during the last few months not least in relation to additional financial support for social care providers where in some local authorities the support and collaboration has been remarkable but in far too many the level of forensic examination of applications for financial support for things like PPE, extra staffing and additional costs, has been equivalent to trying to get money out of the Royal Mint. Without trust there can be no growth in relationship.

In all the talk in the last 24 hours about a second wave of Coronavirus I think that we need to reflect on the nature of trust both in the last few months and as we move forward. For perhaps the evidence of lack of trust and therefore absence of peace can be seen at its sharpest during some of our responses during the pandemic.

Much has been and no doubt will be written about the way in which as a society we failed to protect the most vulnerable in our care homes; the prioritisation of the NHS, confused Guidance, misuse of DNACPR forms, the absence of testing till late in the day and so on. But where a trust deficit has been perhaps seen most acutely is in the degree to which we have responded to the issue of allowing families in to see their loved ones in care homes.

This morning one of the main stories on the BBC website along with news of a second wave was from the English social care minister talking about visiting into care homes and making it very clear that all visits would require to be strictly supervised. This is all about trust. There is no trust when you have to police the love and care of family for their loved one. There is no trust when you have to have care wardens dressed in PPE to remove the privacy of individuals and disproportionally limit their rights of exchange. There is no trust when it is assumed that more harm will come from family rather than, at least for the last two weeks, the risks of a failed and broken testing regime designed to protect staff and residents alike.

It is time to start trusting rather than on the edge of a second wave to retreat back into positions which put up the walls of defensiveness. It is time for all to start to trust the professionalism and dedication of care home staff and providers rather than assume ignorance, lack of professionalism and ability. I have heard this week of one nurse manager who after 40 years of dedicated professionalism has resigned because in essence there is a lack of trust in her professionalism which has kept people safe from Covid from those who know nothing of what a care home is and does. Without trust there can be no community of care.

Trust is that most elusive and intangible of human emotions and characteristics. It is, however a fundamental for human relationship and community cohesion. It is an essential requirement for social care. Trust is diminished by lack of knowledge, by fear and the absence of relationship. It is fostered and grows by being alongside, by asking questions rather than knowing all the answers, and by taking proportionate risk.

I think as well as all the work we are doing in directly fighting the virus we also need to do the necessary work to build trust collectively as politician and commentator, carer and family, community and provider.

The psychologist Dr Andrea Bonior argued that there are some six requirements for building trust – I suspect they have a place in these days on the edge of a second wave:

1. Say what you mean and mean what you say – In the noise of conflicting priorities there is a need for clarity and clear communication. We often hear what we want to hear rather than that which is said. I hope in the weeks ahead as we face new challenge we can be clear and concise, truthful and honest.

2. Be vulnerable – Vulnerability is often used to describe that which is fragile and broken, limited and unwhole, but rather, I believe, our vulnerability should be seen as part and parcel of our humanity. It only becomes a weakness when someone uses that vulnerability for their own negative ends, it is a strength when we live through that vulnerability to be authentically who we are. So, in the days and weeks ahead let us not pretend to be who we are not, to know what we do not have the knowledge of, but rather to own our limitations and lack of certitude.

3. Remember the role of respect – Respect comes from an ability to understand the other and to see the value and essence of who they are. It is also rooted in a mature understanding of our own self. So, in facing the next few weeks I hope we can as professionals and colleagues come out from positions of defensiveness to recognise the ability in the other, the knowledge and expertise in that which we do not know, and to be honest in admitting our own frailties.

4. Give the benefit of the doubt – There are times in human relationships when we simply have to go into the unknown trusting that the other will not hurt or harm us. This is perhaps the hardest thing to do especially if there have been reasons for a lack of trust in the past. When pressure comes it is of the ultimate importance to be able to take a risk that the other will be true to their word, will adhere to what they say and walk their talk.

5. Express your feelings functionally, especially when it’s tough – it may not surprise many that there is a real emotional illiteracy in much of society and those who work in and around social care are no stranger to that lack of maturity. To hide emotions to the extent to which they overwhelm and overcome is not a sign of strength or ability but rather the reverse. One of the insights that I have gained from the last six months is that it is only by the honest display of feelings and emotions in all their raw pain and reality, that we can meet the challenges of a virus which can overwhelm and of emotions of grief and loss which can become so all consuming.

6. Take a risk  – I wrote last week about risk – but it is important to recognise that risk is not a solo activity but a mutual journey. Trusting the other that they are able to take a risk but one grounded in a mutual concern is the essence of being together in all human relationships. In facing challenges there are always moments and times when we venture into the unknown and the fearful, it is at such times and moments that we need to have the certainty that our risk-taking is upheld by the regard and support of others – we all need to know that there is someone there to have our back.

I hope as we move into the next stage of this pandemic, into days which will have their times of darkness and fear, that we seek to build the trust that gives us peace; that we work together to respect the knowledge and professionalism of the other, and that critically we work as hard as we can to continue to foster connection and contact between care home residents and the co-carers who are their families.

There will be many pressures in both community and care homes, upon our staff and families, but these will not be overcome by retreating into fear and blame, but only through trust and developing relationship. The future of social care in Scotland whether in community or care home can only be one built on trust and then perhaps we might have the peace we all seek.

Donald Macaskill

Taking risks cautiously: a personal reflection.

This weekly blog is a day later than normal. I spent yesterday cutting a hedge or to be more accurate doing the manual labour when my suitably qualified and certificated brother used two vicious large petrol hedge cutters! This happens about twice a year – it is a big hedge! Conditions were not ideal – a sharp wind and not so occasional showers but the job is now completed  – even the tidying! Only when I put the machines away do I realise what dangerous and risky pieces of machinery they are.

I have been thinking a lot about risk in the last couple of days. Risk is part and parcel of everyday living. There is no context which is completely risk free. The way in which we grow from children into adults usually teaches us how to manage and deal with risks, having been protected from them as children to a greater or lesser extent. We learn strategies for dealing with risk, we develop models and systems and we fashion an internal risk management system! For there is, in reality, no such thing as total safety but rather there are degrees of safety and levels of risk. Risk is therefore a given of human living and relationships.

It is also a truism that risk is highly personal. I may make judgements and undertake activities and consider them normal and safe e.g. going skiing or mountain climbing but another person may consider those to be highly risky and never to be touched.

The influencers on how we manage our approach to risk are numerous. The way we have been brought up, the extent to which we have taken risks and things have worked out well, the impact of our behaviour upon others, especially those who are important to us – all are factors which influence our approach to risk. But by in large, part of adulthood is that we develop strategies that enable us to have a healthy approach to risk and to develop an acceptance that safety is often illusory and subjective.

Life is all about risk and risk is all about relationship. As someone who worked in both child and adult protection and having trained hundreds of staff in safeguarding I have always been acutely aware of how important it is to get the management of risk right. The failure to analyse and assess, to take action, to guard and protect can be literally a matter of life and death. But equally there are dangers of over-protection and risk avoidance which can result in care and support which suffocates with kindness and which serves to limit individual autonomy and personal control.

In conversation last week with colleagues from around the United Kingdom I reflected that where we are now in our current response to Covid is all about risk management. How we manage the obvious risks around us and the decisions we make and take will have a profound impact on the way we control the disease and also the nature of the communities and societies we are forming in that response. But whilst risk may frequently be an individual decision and action, it is influenced by and in turn affects relationships. I can make and take decisions which are appropriate for myself but when those decisions are impacting upon others or are made on behalf of another for whatever reason then the management of risk needs to be forensically examined and transparently justified.

The debate which is for so many of us the most critical and crucial discussion we are having these days is how do we improve and increase the access to care homes to allow families to get back together. In essence that debate is all about risk and how we manage risk. It is far from an easy consideration, in fact it is heart-breaking.

Yesterday’s Big Interview in ‘The Times’  newspaper was on Prof Sir David Spiegelhalter from Cambridge University, who has impressed me every time I have seen him on television during the last few months. But he is also someone whose work I have known for some time because he is an ‘expert on risk.’

Spiegelhalter a long time before the pandemic said:

 “The media want to make things exciting and usually alarming, so there’s a tendency to present figures in a way that makes them look dramatic, and we should be able to take these stories apart…it’s important that it’s not just left to the very senior people to draw attention to the misuse of evidence or statistics.”

And how true has that been in the last few months! –  don’t we all know the truth of the deception of statistics and the perversion of data.

In his book, The Art of Statistics,  Spiegelhalter argues that there is an onus on scientists like him to explain risk to the general public in a way that achieves the appropriate balance between informing and causing alarm. He appreciates that we all understand risk in  an often very individual way and even two scientists looking at the same data may come up with a diverse interpretation because of the moral paradigm of risk that they are working with.

At the present time we are witnessing an alarming increase in daily cases in Scotland in no small part generated by the risks which those of a younger age have taken around house gatherings and behaviours in hospitality settings. There are so many ways in which I can understand their behaviour. The data seems on the surface to present the risk of Covid to them as one which is relatively low and so the accompanying warnings that it is still a virus that can result in crippling long-term damage to young people are not heard. What dominates is the desire to get back to normality, to live life to the fullest, to reconnect and to enjoy. All perfectly understandable. But as Spiegelhalter states:

“The point is that risk is not just risk to yourself it’s risk to others as well,”

The challenge is, in part, that our understanding of risk as a younger person is palpably different from risk as we deal with it when we are older. At times I think the psychology of our public messaging has failed to appreciate that risk really does feel different dependant on the age you happen to be. So rather than an emphasis on risk the narrative should rather focus on our mutual responsibility one to the other not in order to ‘guilt out’ folks but in order to tap into the altruism and humanity which so many showed during the depth of the pandemic in the spring. For me in the last few weeks the biggest impact on local lockdowns has been on our older population and especially those families prevented from visiting residents in care homes which have had to close to indoor visiting just as they were beginning to open up. Individual actions can lead to a real desolation for others at this time perhaps to a degree that individual risk-taking has never impacted on others before. But I am not convinced those taking ‘risks’ truly understand the consequences upon others.

When we consider the issue of care homes I think we are getting to the heart of the risk debate that many of us are daily struggling with. The continual debate I have with clinicians and advisors is how do we get the balance right between protecting people from the virus and enabling them to have a quality of life which is enhanced by contact with their families and the wider community.

Spiegelhalter states:

“This whole crisis has turned into an issue of risk management. That means perpetually a balance of potential harms and benefits. There’s no such thing as safe, there’s no such thing as right or wrong. Everyone has to carry out that balancing act.”

As we move into winter and face the challenges of weather and potential increased instances of lockdown we need to find a better risk balance to enable people to be reconnected. I think we can learn some lessons from the world of safeguarding as we pursue that balance. At times I fear that maybe not surprisingly during a pandemic we have become automatically risk avoidant rather than risk enabling. We need to correct that imbalance.

In ‘normal’ times in health and social care a traditional risk aversion approach has gradually been replaced in the last few years with talk about enabling risk, and with the development of new models and ways of working which enable individuals to re-develop strategies for risk-talking and managing risk even in situations and contexts where familiar securities are no longer there, such as post illness or with declining capacity.

A major Department of Health consultation ‘No Secrets’ examined their approach to adult safeguarding and risk, and stated:

‘A balance needs to be established between empowerment and protection and between the rights for self-determination and the duty to ensure safety of people… We want to support people to be citizens and take risks that they understand. ‘

Good adult protection and safeguarding is about balancing risk. We all live within environments which are not risk neutral, but we have developed the skills and tactics to minimise, control and live in the face of such risks. That is part and parcel of what good support should be.

Risk enablement is about proportionality. It’s about nurturing within those who might be more vulnerable the insights and abilities which enable us to live in the world.

During a pandemic and especially now it is as we struggle to get a better and more proportionate balance between risk avoidance and risk enablement that I think we need to appreciate that for those who are at the end stages of their lives that seeing family, being able to be held, being together  – all with appropriate protection – trumps an approach to  risk which is in danger of adding to the number of days lived but diminishing the quality of those hours to a point at which they cease to have any real value. There really is more to life than chronology; more to our life than mere existence. There are no easy answers but simply asserting data and science as the sole predicators for decision-taking on risk is no longer sufficient or responsible, not least as it fails to value the rights of individuals.

I will let Spiegelhalter have the last word:

“Experts aren’t always right, they disagree, scientific disagreement is an integral part of science. When I hear a politician saying, ‘We are following the science’, that is when I start screaming at the radio. You do not follow science because it doesn’t tell you what to do. It is sitting there beside you humming and hawing.”

Dr Donald Macaskill

Media Statement on Care at Home Testing

Media statement on Testing:

 

Scottish Care has been arguing for the testing of all homecare staff on the same basis as care home staff for some considerable time. 

Regretfully this has not been progressed 

 

Whilst we recognise that testing resource requires to be prioritised it is our belief that homecare staff are an essential service s as and deserve equal treatment. 

 

CEO Dr Donald Macaskill said: 

 

“The women and men who work in homecare support thousands to live independently at home. A typical day involves frequent visits to different people and it is therefore critical especially now that the presence of the virus seems to be on the increase in our communities that we start to urgently test all homecare staff. We owe it both to keep this dedicated workforce safe and to protect those who they care for.” 

 

The pain of separation: are we creating an abnormal normality?

When I was at school my English teacher brought many poets to come and read to us. I probably didn’t appreciate then just how lucky I was. I do now. I can remember many and have forgotten more. But one I will never forget because he spoke in the timbre of my own first tongue with a rhythm I related to and a language I felt inside me was Norman MacCaig.

He wrote:

Aunt Julia spoke Gaelic
very loud and very fast.
I could not answer her —
I could not understand her.

She wore men’s boots
when she wore any.
— I can see her strong foot,
stained with peat,
paddling with the treadle of the spinningwheel
while her right hand drew yarn
marvellously out of the air.

Hers was the only house
where I’ve lain at night
in the absolute darkness
of a box bed, listening to
crickets being friendly.

She was buckets
and water flouncing into them.
She was winds pouring wetly
round house-ends.
She was brown eggs, black skirts
and a keeper of threepennybits
in a teapot.

Aunt Julia spoke Gaelic
very loud and very fast.
By the time I had learned
a little, she lay
silenced in the absolute black
of a sandy grave
at Luskentyre. But I hear her still, welcoming me
with a seagull’s voice
across a hundred yards
of peatscrapes and lazybeds
and getting angry, getting angry
with so many questions unanswered.

Norman MacCaig’s ‘Aunt Julia’ is now one of the poems taught in Scottish schools as part of the exam curriculum. I’ve always loved it. Aunt Julia lived on Scalpay on a croft not unlike that of my own family on Skye. She only spoke Gaelic and no English. Again, something that resonates with me as I only learnt to speak English ‘properly’ after I was five. She reminds me of my Aunt Effie in black boots and black skirt, whose apron painted a canvas of egg stain, peat and flour. Even though they could not share a language MacCaig adored his aunt, as I did mine. In words of poignant regret, it was only after her death that MacCaig learnt enough Gaelic to have been able to communicate with her. Now she is absent, his questions lie unvoiced and unheard. There is a separation that nothing can bridge. So many questions unanswered and he is angry.

To be absent from the hands that caressed you every day of your life; to be invisible to the face that woke your dawn with a smile; to be silent to the lilt of voice that spoke as music in your ears; to be distant from the touch that cradled your pain and held your laughter … that is separation.

To be separate from those we love and those whose bone has become the very marrow of our being is an ache which can never be put into words or remedied with any solace. If one has power over it happening, it can only be a conscious and deliberate action if it is for the protection of that very love whose absence creates ache and tear.

This week I want to write about separation.

Getting the balance right between keeping people safe from a pernicious virus and enabling individuals to be restored to the fullness of relatedness was never going to be an easy task. I have been reflecting on whether or not we have got this balance right in the last week partly because of a mounting unease within me and partly because of the tear-inducing correspondence I have been receiving, I have read so many Guidance documents and suggestions from across the world about how it is possible and what steps have been taken to restore a balanced safe normal to older people’s residential care including this week taking part in an international conversation.

I have written before that I think the early measures taken to exclude visitors and shut down our care homes were entirely legitimate and proportionate because the threat of the virus to life was self-evident. It was not an easy thing to do but restricting people’s human rights was acceptable and the right thing to do at the time. As we began to understand the danger of asymptomatic transmission, as a nation we have escalated testing of staff to the level it is now, and we have used PPE, especially masks, to the level we now do. As a result, and because of the wider actions of others in lockdown we have significantly diminished the impact of the virus though as witnessed in the last few days the virus is still present and can tragically still take life in care homes and community.

Last Thursday was the 25th week since the start of lockdown. In the last few weeks we have introduced visiting outdoors and then extended it, started visits indoors and on Thursday there was an announcement about the return of visiting professionals and the greater use of communal space.

But 25 weeks on it is still the case that thousands have not been able to meet up because of the restriction on numbers and the capacity of care homes to staff and supervise visits, because of the Scottish weather and more recently because of local lockdowns and decisions to close care homes to visitors.

There is now a growing anger in the wider care home community about the proportionality of many of the restrictions which in the initial Guidance seemed appropriate. People are weary of being separated and they are struggling to see the justification for what they perceive to be a disproportionate removal of the rights of those in care homes. I have reflected elsewhere about how we have failed to adequately hear the voice of residents and are increasingly, I am afraid, diminishing the human rights of citizens with capacity who happen to reside in a care home by failing to allow them to take decision and action in an autonomous way.

If some form of separation is necessary for protection then the way in which we do it simply has to change.

We have to get better at including and involving families not just to help them understand what Guidance says but to take control and co-write that Guidance so that they are more in control of decisions. Family members are not visitors into the lives of their loved ones they have the right to do be present (with consent) and no-one should diminish that right over such a long period of time without the most profound justification. Clinical paternalism, public health risk aversion or political caution have their place but we must also find a space for the exercising of the rights of residents with capacity to knowingly take control of their decisions and the risks they wish to take providing others are protected. We are witnessing on a daily basis that people are switching off their lives having decided that there is no point in living in this twilight existence of separation and absence. The distressing effects on the mental health and wellbeing of residents and family members alike is  a scandalous trauma.

We have to become more proportionate in the rules and requirements we make. I have yet to see any clinical or scientific reason why a family member wearing appropriate PPE cannot sit alongside their loved ones and hold their hand or stroke their face or feed them their meal. We have to encourage protected touch rather than strip physicality away from encounter.

We have to banish the distance of togetherness by removing the 2-metre distance requirement when people wear appropriate PPE. If a professional carer can be close then why can family not do the same?

We have to get to a stage where we prioritise the new faster tests that are being developed for family members seeing them as critical and essential key workers in the lives of their loved ones.

We have to extend the time that family can be together and get to the stage where there is more control for individuals.

We have to restore privacy to individuals so that they can meet and be together without supervision or oversight. Care homes are not prisons nor are care staff wardens for the behaviour of others.

We have to allow people to go out in the community and not expect them to isolate themselves for fourteen days when they come back to their own home. Which one of us would go out to the shops or for a meal and then imprison ourselves for fourteen days?

There is, I believe, much more that we can and must do. It is clear that we will be living with the pain of separation for some time. We can lessen that pain by ensuring that the times of togetherness are as normal and as natural as they can be. At the moment I fear we have simply created an abnormal new normal.

Donald Macaskill