The pain of isolation – thoughts for Dementia Awareness Week

This has been Dementia Awareness Week and it has been another unusual week in lockdown. Normally every year I would have been attending events, conferences or meetings learning and exploring with others about the nature of Alzheimer’s Disease. For countless thousands it is also a week when we remember those in our own families who have died from dementia.  It is a time when I picture and recall my own grand-mother and mother’s journeys into the lostness of dementia.

This year, however, faced with Covid19 I have spent days thinking and working on practical steps so that we might be able to restore visiting into our care homes to re-establish connection and belonging. But as I have done so I have grown even more acutely aware and concerned about the impact that lockdown is having upon the psychological and physiological health of care home residents as well as people in the community who are living with dementia.

Like many others over the last few weeks I have been moved to a real depth of awakened understanding by the reporting of Lewis Goodall on BBC Newsnight. On Thursday night his input was on the effect of Covid19 on people living with dementia. He reflected on the disproportionate impact of isolation on people with dementia and informed his viewers that  in England 42% of Covid deaths in care homes were from those living with dementia. I suspect in Scotland the figure is significantly higher given that 90% plus of people in Scottish care homes have dementia. He also suggested that many were not dying from Covid19 but from the effects of isolation.

At the start of the pandemic as care homes went into lockdown the advice from Government and public health experts was that individual residents should be confined to their own rooms and that communal areas and activities should be ended or reduced. Normal activities such as socialising and eating together should be halted and that social distancing should be introduced. That is now 12 weeks ago.

So, for 12 long and painful weeks thousands of individuals who are not aware of what is happening and who do not understand why family faces have disappeared have had their lives turned upside down. Critical routines which give a pattern of familiarity and comfort have been upended. Activities to stimulate and keep both physical and mental capacity going have been reduced or have simply disappeared as staff have struggled to deal with real desperate clinical care needs of others. Perhaps most importantly the affirmation of touch and stroke, of smile and hugs, have not been offered or have been hidden behind a scary PPE mask. Staff have struggled with those whose dementia meant they would not remain in their rooms, for whom masks, and shields have been simply terrifying, whose behaviour has become challenging in all the confusion.

I simply cannot conceive what life must feel like to someone with dementia in a care home today. It must surely be terrifying. I cannot imagine how disempowered and frustrated care staff are feeling right now. A nurse on the frontline this week described it to me as “seeing people silently screaming inside and not being able to do what you want to do – to touch and to soothe.”

I know the why, the importance of preventing infection spread and the imperative of protection, but how long can we continue to isolate individuals in the way that we are now doing? This enforced confinement is destroying and damaging just as many lives as the virus is. People are losing their physical body mass; they are losing the physical and mental abilities which they once had, and they are at real risk of deep depression. We urgently need to now find a better balance between infection control and the enabling of life. We need to think about how we can use volunteers and supplementary staffing to allow people the freedom of protected space and place. We have rightly stressed the importance of scrutiny and inspection on infection control practice, but have we given as much attention to the quality of life that is now that of those with dementia in our care homes? For too many there is existence and safety, but life and purpose is disappearing.

Kate Lee, CEO of the Alzheimer Society in the Newsnight programme said that “if this was our children being affected we would be screaming from the rooftops.” Sadly, as she also stated this is further evidence of the way we treat people differentially because of their age or because they have dementia and not some other condition such as cancer.

On this Dementia Awareness Week it is the urgent imperative on all of us involved in the care of citizens to search out new ways so that we can open the doors of confinement, so that we can begin to restore relationship and interaction; start to again give meaning and purpose, fulfilment and enjoyment to those living with dementia.

We have to find better ways to protect than we currently have in practice. There is little purpose in having infection free environments if the process of achieving them is the effective loss of life and meaning. This is the challenge for us all. If we do not then we have lost our own sense of direction as a society. Lockdown in our care homes is  harming too many.

Donald Macaskill 

Balancing the scales: Covid19 discrimination and future promise

In early March at the beginning of the Covid19 pandemic I wrote an opinion piece for The National which I concluded with the words:

‘Coronavirus will be a test not just of the infrastructures of health and care, of business and commerce, it will be a test which will determine the nature of our nation. Will we be a Scotland that cares for the old or will our compassion be limited by discrimination?’

That piece was written on the back of statements which suggested that we did not need to worry about the disease because it would only kill the old. Both social media and some wider media comment at the time was full of comments which articulated a view that Coronavirus was a ‘boomer harvest’, one of the many sickening references to the baby-boomer generation. The public health message across the United Kingdom at the time was ‘wash your hands and catch your cough.’

Twelve weeks on the truth is that this pernicious virus has indeed taken a devastating toll of the older age population with nearly three quarters of all deaths in Scotland and worldwide amongst those over the age of 75. It is also the sad truth that those who were most vulnerable as a result of age, frailty, dementia and other conditions, and who have been residents in our care homes, have been the hardest hit. This is the story of this pandemic as it has crossed the face of the world, its hurt has taken away from us our memory and soul, its scars have left a mark which will take long to heal.

So has our response been one of inclusiveness, of valuing all, of non-discrimination or has the pervasiveness of age discrimination and bias, subjects I have often written about, been evidenced in our pandemic response as a Scottish society, as a political, health and care system?

I will leave you to make your own mind up on that. But …

In recognising the evidence, we were getting from China in January, South Korea and Singapore, Italy and Spain in February, France and Germany in March, did we sufficiently protect our older citizens? Did we ‘contain’ for too long out of a desire to ‘bring people with us’ and lessen harm to the economy which meant that the entry into lockdown made our older population all the more vulnerable?

In noting the relative success of a strict test, trace and isolate model in some parts of the world with the continual echo of the World Health Organisation stating ‘Test, test, test’ to anyone who would listen,  did we as part of a Four Nation collective response abandon that safeguard too early?

In our desire to prevent our acute NHS system from being over-run did we so encourage the discharge of hundreds of older people from hospitals into the community and care homes where they were to be at greater risk or was staying in hospital an even higher threat?

In our requirement to protect the NHS at all costs did we fail to recognise the importance of ensuring that social care providers and their staff were to be an equal frontline so that requisitioning PPE supplies for the NHS would make their battle all the harder to fight?

In our desire to be prepared for an overflow did the indiscriminate phone-calls and letters about the importance of ‘Do Not Resuscitate’ orders serve to put older and vulnerable citizens into a state of real fear, leaving them with the feeling that they were of lesser worth or value?

In our requirement to support frontline clinicians to make hard treatment decisions if we should face resource constraints and run out of equipment did our ethical framework not give the impression that age would be used as a primary proxy for decision-making?

In our desire to reduce unnecessary admissions into hospitals in order to prevent the anticipated surge did our official Guidance give older people in care homes the impression that they were not to be admitted but were to be cared for and die in situ?

In our withdrawal of packages of care and support from some of the most elderly in our communities did we not place them at even greater harm not just from the virus but from dying alone, without contact, potentially hungry and disconnected?

I have my own views on each of the above but one thing I am clear of is that the attitudes of age discrimination which existed in Scotland before this pandemic have not been wiped away with its pain rather they have been magnified and lit large.

For years I have written about the way in which we have failed to value our older citizens in many disparate ways. But I see very little point in recounting these. Rather as we leave lockdown we have an opportunity to leave behind systems, models and approaches which have not worked and have failed our older citizens. We have the opportunity to cast off attitudes and behaviours which have served only to limit our humanity by dressing ourselves up into a pretence of equality.

Social care is still fighting this virus. It has not gone away and there is much more still to be done. But this is also a time for re-formation and reflection, renewal and re-orientation.

We have the opportunity to finally have honest discussions about how we will value and celebrate the reality that we have one of the fastest ageing populations in Europe. Faced with the gift of longevity and a growing life expectancy, how are we to enable those living longer even with conditions such as dementia to live until the end in the fullest and richest way possible?

We have the chance to change the way in which we value social care and those who work in it. It is not acceptable that we consider that being paid the minimum or living wage should somehow be the summit of our collective aspiration. It is not acceptable that there should be such disparity in what the State funds and what we expect citizens to pay. It is not acceptable that if you are struck down by cancer your care is largely paid for but if you live with dementia you and your family end up being charged.

We have the chance to take some really hard decisions about how as a society we pay for the potential of age which is in our midst. We need to have these grown up national discussions which we have all shied away from especially the closer we get to an election season.

We have the chance to challenge the gender segregation which equates care as being a woman’s work and thus accords it less status where the reality is that care should be the challenge of all, for all and by all. A society that does not care is not a community but a collective assortment of individual egos.

We have the chance to see those who are old as vital contributive individuals. Life does not end until you take your final breath. Let us stop viewing our humanity as if it has a use by date. Let us seriously work at inter-generational levels so that we harvest the knowledge, creativity, skill and ingenuity of all our citizens.

We have the chance to create a system which enables real choice rather than blanket solutions, gives respect and autonomy to our citizens and which takes seriously the human rights and dignity of everyone.

There will be many legacies left by this pandemic. Tragically for many of us there has been raw pain and loss at the heart of the last few weeks. But we owe it to everyone today and tomorrow to make sure that we seize the opportunities we have been given and to really build a social care system and a Scottish society where all are valued and included regardless of chronological age. This will not be achieved by point-scoring, by political fundamentalism, by defensiveness or entrenchment, but by real collaboration, honest humility, and a shared passion that we can and must do better.

Donald Macaskill

 

Statement on Testing and Death in Service Benefit

Statement

Scottish Care is pleased that following a submission to and meeting with the Cabinet Secretary Ms Freeman and Cllr Stuart Currie from COSLA on Friday 22nd May that the Scottish Government has decided to use the powers within the Public Health Act 2008 to ensure that no worker is disadvantaged if they are identified as requiring to isolate following a positive test for Coronavirus.

We are further grateful that the Scottish Government has taken the decision that the dedication of frontline social care staff who have tragically died from Covid19 should be recognised by means of a one-off ex-gratia payment of £60,000 to the families of those so bereaved.

Scottish Care will work with colleagues in COSLA, the Health and Social Care Partnerships and relevant Health Boards to expedite the practical arrangements of both these commitments in the coming days.

 

Ends./

Coronavirus exhaustion – upholding the mental health of the care sector.

 

We are on the penultimate day of Mental Health Awareness Week. It has been a week when there has been a great deal of focus on the mental health and wellbeing of all our citizens as we live through these strange Covid days. Lockdown has added to and created considerable mental health distress and ill-health for tens of thousands. For many help has come from support they have found online or on the other end of the phone. For many others help simply has not come and at best will be delayed. How we look after ourselves mentally as individuals and as a nation matters now more than ever before.

In my thoughts today, however, I want to focus on some of the conversations which I have been having this week with folks in the care sector. These have been conversations which have shown me the real fragility which exists out there in terms of the mental wellbeing of our care sector. They are conversations which have changed quite considerably in tone and concern.

I suppose the first thing to say is that I am detecting a real change in the spirit and the morale of people delivering care in our care homes and in the community. I am detecting a depth of emotional exhaustion which I have never seen before.

It is probably a truism to say that whenever we are faced with a challenge in life the adrenaline of initial encounter, the support of those around us, the sense of collective endeavour can serve to energise and renew us. I think that was what many people felt in the early days of the Covid nightmare. Undeniably some of this collective camaraderie was on the back of a failure on the part of the rest of society to value the role of carers at the start of the pandemic. There was the constant focus in media and politics upon the NHS and its workforce. I am not – lest I be accused of it – denying the importance of our NHS colleagues at any time far less in recent weeks – but undeniably whether it was by being barred from special shopping times or refused offers from companies for ‘NHS only’ employees – social care staff felt ignored and put aside in the early days of the pandemic.

That changed and the ‘Clap for Carers’ movement – a response which may come to an end this coming Thursday – helped to underpin the central role and critical contribution of social care and other key workers to the rest of society. In the midst of battling this virus there was a growing sense of us all being ‘In It Together.’ Political point-scoring was put aside, and we entered a no-man’s land of consensual support, collective solidarity and focussed attention on beating the virus not least in the care home sector where it was beginning to have a dreadful impact.

But over time I have detected a change in the mood. The uneasy political peace gave way to the articulation of blame and the apportioning of responsibility for action or inaction. Personalities began to dominate rather than community consensus. The media began to focus negatively and critically on the care home sector and the inevitable finger-pointing started. Workers were literally door-stepped and followed home by a media sensing a story and with little concern for the aching pain and loss frontline workers and families were living through. But despite all this there remained an astonishingly sacrificial professional commitment on the part of the care workforce focussed on saving lives, being present, consoling and comforting.

But there is no doubt 9 weeks into lockdown that people are exhausted.

There is a type of tiredness which is so intense that it reaches deep inside the marrow of our bones. It is an exhaustion which is more than physical, it encompasses our spirit and our very being, it removes the energy which keeps us going even when we are tried beyond imagining. It is this emotional and total fatigue which is happening to care workers, managers and providers across Scotland.

I have never before had to hold so many conversations with individuals who have been on the edge of emotion, who are simply drained of energy and very tired at the constant barbed criticism which they feel is being directed at them from all quarters.

There is a coronavirus burnout happening before our eyes across Scotland. It is an exhaustion which is emotional, mental, and physical and it has been fed by excessive and prolonged stress. The stress of keeping going, saving lives, granting compassion and simply being present. And all the time there is a ticking clock of critique in the background. And accompanying this there is an emerging individual guilt – however misplaced – of ‘Could I have done better? Did we do everything we could have?’

 We need to be alive to the reality of a burnout care sector, of workers, managers and others feeling they have lost purpose. This does not just necessitate a response at an individual level it requires a real ‘putting our arms’ around care homes and home care. It is imperative that the potential of support for social care is achieved and maximised, that there is a mutual appreciation of the professionalism of the care sector by health colleagues and vice-versa.

It is well known that although we may expend all our energies getting to the summit of a challenge it is in the process of descending from the peak that most harm and injury is caused. The care sector in Scotland has exhausted every energy in fighting this virus and is still doing so – unlike the rush to lockdown seen elsewhere and the silence of unclapped hands  – the battle is still going on; lives are still being saved and cared for.

The last few weeks have been a collective effort and it is imperative that the next few weeks are ones where health and social care, where worker and manager, where politician and commentator, continue to uphold the care sector as we work collectively to meet the challenge of this virus.

There is a burnt-out exhausted care sector in our midst, but it is also one which is strong. It is strong in its talent, its creativity, its compassion and professionalism. It will grow stronger still if it is really supported, truly valued and deeply cherished.

As we end Mental Health Awareness week, I hope we can all collectively continue to remember and focus on the amazing care in our midst. So, every Tuesday at 7pm I will try to light a candle and spend a minute to remember those who have died in our care homes, in our hospitals and communities; to remember those who care beyond calculation, those who go out from comfort to give compassion; those who work tirelessly even when exhausted and burnt out. I will remember until that day when we hear of no deaths from Covid19. May that day come soon.

Please join me in lighting a #candleforcare.

 

Donald Macaskill 

“Emptiness I have never felt.” – the trauma of caring in the pandemic.

We are now eight weeks into the Covid19 pandemic in Scotland’s care homes and the extent of distress and trauma being felt by many residents, staff and families is really hard to bear.

I was going to write something positive this week about the way in which infections are declining, about the amazing  work that frontline staff, managers and owners are doing to keep spirits up and positivity going, and about the news that in one Health Board there are hardly any Covid positive cases in the care homes in the area. So yes, there is at last a sense in which we are turning a long slow corner … hope is on the horizon.

But on Thursday I received a letter of such honesty and beauty that I need to share  some of its content with you in this blog.

Mary is a nurse in a care home run by a family who have owned the home for many decades. It is a good home with plenty of individuals wanting to come in as residents and with very good and consistent Care Inspectorate grades. The staff are skilled, empathic, kind and committed. There really is, in Mary’s words, a home from home feel about the place. From her description this is a care home which is doing precisely what all good care homes do, providing life and energy and safety for those who need additional support due to frailty or age. Sometimes in all the debate and necessary focus on infection control of the last few weeks people have forgotten that a care home is not a ward, a unit or an institution but someone’s home. Places where people are encouraged to bring in possessions and furniture to make the loss of their own homes and spaces less acute and hard. Places where you are encouraged to wander and chat, to settle and be still, to dance and play, be active and alive.

Mary has worked in the home for nearly 13 years and she has nursed individuals through the rhythms of pain and parting, has given solace at times of sickness and celebrated when people have recovered and been restored to health. This is the nature of care home life, a life in tune with the seasons of humanity, comfortable with living through older age and enabling not existence but life to the fullest in the face of mortality.

Then the virus struck in Mary’s care home. Like the thousands of other nurses and care staff in Scotland’s care home sector Mary is skilled and experienced in dealing with viral outbreaks not least norovirus and seasonal flu. But Coronavirus is unlike any other. Its silence creeps and kills, it’s invisibility touches and destroys. Despite very stringent efforts, with adequate PPE and a well-trained staff the virus got into the care home. No-one knows how but it did. Mary writes:

“We have been living with this virus eating away at the heart of our home. In a matter of days, we have lost so many people it is just too hard. We have lost real characters  – people who made the place what it is with their laughter and jokes. We have lost folks who have been here for so long. And when I say lost that doesn’t even tell it as it is. The deaths were really hard. They were sudden and horrible. People need to know about this. No-one is talking about the horribleness of this disease… No one wants to know the real fear we feel as we sit there holding the hands of people as they pass… It is all just numbers out there read out every day. It is all about getting back to normal. I can never get back to normal… But it is our friends, people we know like a family.. I have lost so many… I cannot sleep at night because of the sadness I have… it is an emptiness I have never felt. I can’t even say goodbye to them.”

Mary is not alone. Others have written to me or reached out through social media to say the same thing that we are not telling the full story of the deep sadness that is being caused by this virus. That as a society we have become inured to the statistics turning them into data analysis, projections and comparisons.

All of us who have known and lost someone to the virus will live with that memory for ever. We have not had the chance to grieve. We have not had the moments of hearing the story of a life lived because there is no one to tell it to us. But those who have had to be present at the bedsides of residents and friends, those who have experienced multiple deaths in such a short period of time, their trauma is acute and aching.

It is each of our responsibility over months and years to uphold and support these people. We will need to be very alive to the reality that what some will suffer will be post-traumatic stress. We will as a whole society, from Government to provider, from neighbour to family, require to be present to listen, console, support and cradle their grief.

But it is not just for care staff. Our cradling and solace-giving needs to be for the families and friends unable to be present, for fellow residents who have lost friends, and indeed for ourselves.

I hope that in the coming days and weeks the increasing words of harsh criticism, of finger-pointing and blaming, will be quickly worked through. I accept that they are often a understandable response to grief and trauma and that they are sometimes necessary to assure and to hold accountable all of us for what we have done and not done. But they ill-serve us if we want to move forward as a nation, as a community and as individuals. We need to learn again how to be kind.

I really do hope that we are all able to be increasingly present for those who feel like Mary, emptied of hope and life. I hope we will remember that true community is when we work, act, sit and rest in a spirit of open honesty and togetherness.  

There are hundreds of stories which have been left untold. As we come out of this cruel time it is up to each of us to give space for their hearing, soothing for the sorrow felt, and comfort in the emptiness. Mary and others in our care sector deserve no less.

Finding a way through – achieving a balance between risk and protection

Finding a way through – achieving a balance between risk and protection.

 

It is now over eight weeks since Scotland’s care homes went into lockdown. Overnight they changed from places of busy interaction and banter, entertainment and encounter, into environments living under strict infection control and with limited interaction with the outside world. They became quieter places, with people no longer sharing common spaces, meeting up with friends, having a laugh with neighbours, gossiping has given way to silence. Care home staff have tried their hardest to keep life going as close to normal as possible, to give special attention to those who need it, to support through encouraging smile and contact, to encourage and even to entertain. Technology has been used well to maintain contact and to keep connection going but there are many who cannot use it or don’t understand how to.

Frontline staff in many care homes have fought tirelessly to keep the pandemic at bay and through their skill and dedication have nursed many hundreds back to health despite Covid. But as this week yet again bears testimony they have also lost to the virus many people who have died before their time.

Despite all the hard work of staff, care homes are living in a twilight zone, a place of unreality and a place of real discomfort.

I have written before about the aching sadness felt by families who feel that they are slowly losing a grip on the lives of loved ones who are slipping away from memory with each passing day. I have spoken about the tears that are felt as significant birthdays pass by with only a knock on a window or a wave through an iPad by way of family celebration. I have affirmed the importance of being present at the end of life to say goodbye.

At the start of the pandemic the strict infection control measures introduced included a reduction in foot-fall into care homes with an aim of reducing that by 75% to all but ‘essential visits.’  Through time we have seen enhanced measures for PPE, improved testing regimes, stricter admission criteria and now in the latest Guidance published last night, a much greater appreciation of the impact of all these measures on the lives of people with dementia. Over time I think we will come to appreciate that infection control protocols which work in a clinical institutional environment like an acute hospital or unit need to be adapted much more sensitively to fit a place which is primarily someone’s home, where people are not patients and the environment is non-clinical. I am personally very clear that the area where there needs to be much more appreciation and adaptation of infection practice is in the realm of human contact – especially for the vast majority of care home residents  (perhaps as many as 90%)  who live with some form of dementia.

At the start of the pandemic I wrote to a few folks who questioned the appropriateness of some of the early strict exclusion measures and who voiced concern at the impact on the human rights of those involved. My argument at the time was that the measures were appropriate in that they were a proportionate response to achieve a legitimate aim which was the preservation of life. Now that we are eight weeks into those measures and after countless emails, messages and conversations with families and with some residents, I think we all collectively need to reflect on whether our restrictive measures are enabling us to  continue to uphold the human rights of residents and their families, or whether we need urgently to review some of our measures and to adopt more flexibility.

What may have been a proportionate restriction at the start of a crisis and considered acceptable action for a period of time may no longer be appropriate months into the pandemic. I am couching what I am saying very carefully in questions because I do not think we are in the territory of hard and fast answers but in a place where we need to nudge and feel our way forward to solutions.

I think we all of us need to find our way through to a better way of being and living especially for individuals with dementia in our care homes. I am not convinced the current processes are sustainable or remain justifiable. John put the dilemma to me quite clearly – he is nearly 100 with months to live by any calculation, and he wants to spend that time not ‘imprisoned in his room’ (his words) but being with his family even if at a distance. Quality of life matters more for him than quantity of life. He said to me “It is my human right to decide to take the risk!”

For perhaps the overarching concern in all the correspondence I get is the loss of connection and relationship felt by individual residents and their families. No matter how attentive and creative care home staff are there is simply no substitute for physical interaction with family.

The current Guidance rightly states that in situations of ‘distress’ that it is important that families of people with dementia and learning disabilities are allowed contact under strict criteria. Over the weeks it has become clear to me that such distress is not just seen in behaviour which becomes angry, frustrated and challenging but in what I have called a ‘quietism’ where the person withdraws into their skin and self, where they turn their face to the wall despite all the positive measures around them, where they have started to dis-engage and switch off – because connection with those who matter is not there. Many individuals with dementia even if they do not remember the name of loved ones intuitively know they are connected, that they are part of another, related and linked, loved and wanted.

We all of us collectively need to find a better balance between individuals knowing the risk, the requirements to wear PPE, the importance of encounter and the desire to prevent infection at all costs.  But when I speak to care home managers and staff, especially in care homes where there has been no infection, they are terrified that enabling people to re-connect risks putting others at danger. They are also after days of external blame and finger-pointing at the care home sector, terrified of becoming the object of scapegoating if something were to go wrong after they allowed a family member to visit. I think we urgently as a whole society from politician to media, from commentators to citizen, need to empower our care home staff and providers to feel they have the confidence to re-connect people with one another.

And there are ways of doing this. People have spoken of getting permission to have a family member escorted into the building following defined footways and of bringing together individuals at a safe distance in an outside space. Hearing of these ‘reunions’ and the comfort they have brought has been very moving indeed. But we need to do more. For instance, we need to explore the use of testing as a way of connecting people up to their household ‘bubbles’.

It feels really uncomfortable as the rest of the world becomes fixated on ending lockdown that there is a presumption that in care homes this unreal form of existence and dis-connection will go on for much longer. We must, I believe, give trust to professional care staff to find new ways – safe ways – to connect family.

Scottish Care has established a clinical care group which over the last two weeks has been  actively exploring how we can work better in this area and develop models and approaches to get the balance right and to better restore the human rights and choices of residents. But it needs the rest of society to embed trust, give confidence, and permission to the care home sector to restore relationships. We urgently need to find a way through from where we are which is no longer tenable to something resembling human connection, with families being together and re-united with residents in compassion and love.

Donald Macaskill 

The Forgotten Frontline: homecare during the pandemic

The Forgotten Frontline

As I sit here writing this I am looking out of my window and seeing two workers who have become a familiar sight as I work from home in the last few weeks. They are homecare staff coming to do their early morning shift in the sheltered housing complex beside which I live. They are there like clockwork morning, noon and late evening. They drive in two separate cars, get out, put their PPE on and enter the building. Their laughter and humour punctures the silence of the street. Their humanity is obvious, their care compassion needing no badge.

According to the latest data there are 71,000 women and men who work in Scotland’s care at home and housing support sectors. They work for local authority, charitable, voluntary and private providers.

In some senses during this pandemic they have been the forgotten frontline. The devastating impact of the virus on residential and nursing homes and the acute loss of life has rightly gained public and media attention and focus. But we should not forget as I think we have been prone to do, the impact of this virus on the lives of those who are supported in their own homes.

Perhaps one of the reasons for this forgetfulness is the reality that many individuals do not actually know what happens in homecare. Yet more people are supported in their own home every day of the year than in our NHS hospitals and care homes combined. Homecare services are a lifeline to thousands of our neighbours.

So why is homecare important? Why is it that thousands of women and men are putting their lives on the line, leaving their families, donning their PPE to go into the homes of others to deliver care and support?

This pandemic has shone a light on the extent to which, so few people understand what homecare is. For too many there is still an outdated image of homecare as ‘mopping and shopping,’ as a set of practical activities designed to make people feel better but not much more than that. As almost like an added luxury!  The truth could not be further than that.

Too often there is a convenient and wrong conflation of social care with health care. So at Scottish Care we have stated that social care should be seen as :

‘The enabling of those who require support or care to achieve their full citizenship as independent and autonomous individuals. It involves the fostering of contribution, the achievement of potential, the nurturing of belonging to enable the individual person to flourish.’

Homecare is that care and support which enables and empowers an individual to be free, autonomous and independent in their own home. It is the energy which gives purpose to someone wanting to remain in their own space and place, it is the structure of support and care which enables citizens to remain connected to their families and friends, their neighbours, streets and villages. It is not an added extra but the essential care that enables life to be lived to its fullest.

The best of homecare is a care that changes life and gives life.

Some of my blog readers may know that I am a bit of a Bruce Springsteen obsessive. In an interview which he gave around the time he launched his autobiography in 2016, Springsteen said that:

‘You can change a life in three minutes with the right song.’

At the time the sense of words and music changing and transforming a life struck me as being a powerful description of the musicality of one of the greats of his genre. But I also think that it is a description of the essential life changing and enabling power which lies at the heart of all care. It is this ability to change a life through care and support which has become so evident in this pandemic.

The women and men who work in homecare are life-changers. The reason that statement is true is that by their acts of personal care, by supporting someone to take their medicines, to get up in the morning; by making sure their space and place is tidy and safe, that hazards are controlled or removed; in ordinary times by taking someone to a club or to their family, to an activity or simply to belong somewhere, these women and men who are the workers of care are the gifters of purpose and meaning to so many. This is not incidental it is essential. It is this work that binds a community together, that truly creates neighbourhood, and moulds togetherness in the midst of our cities, towns and villages.

Most of us are able to be independent – to get around on our own, to have control so that we need not be dependent upon another. As life changes through age or illness the loss of that independence and the forming of bonds which make us reliant upon another can be both challenging and difficult for our sense of identity and self-worth. It is in this territory that the marvellous work of support and care locates itself and comes to the fore.

Good care is not about taking over another person’s autonomy, good support is not about creating dependency – they are both the total reverse. They are the actions and deeds, the words and encouragement that enable others to either re-discover or find for the first time, the abilities to make decisions, to exercise choice, to be in control and to be independent even if support is needed to achieve that goal.

This is why homecare is important –  this is why during this pandemic we cannot forget this frontline force of life and change.

Yet homecare has always existed on the knife-edge of economic sustainability. Delivering care and support is a costly exercise and for too long as a society we have sought to buy care on the cheap. Before the pandemic you could earn more money for walking a dog in Edinburgh than you could for caring for a fellow human being in their own home. During this pandemic faced with extortionate cost rises in PPE equipment homecare organisations would never ordinarily use, there is a real danger many of our small Scottish organisations may go out of business. As families have been on lockdown hundreds of care packages have been cancelled because folks are home looking after brother, sister, mum or dad. Some local authorities have cancelled contracts prioritising what they have termed as critical support. This has had a profound impact on care organisations.

We urgently need to ‘wrap our arms of care’ around those who care in our streets and the homes of our neighbours, the providers and workforce alike.

The autonomy that homecare gives a supported person enables them to flourish to their best and continue to grow into the person they want to be.

I hope we will all of us grow in valuing and recognising the work and the workers who I see every morning. If a good song can change a life in three minutes then good care and support changes a future forever. Yet if we forget this frontline during the pandemic the song will be silent and lives will not be lived to their full potential.

 

 

The ‘new care normal’

The new care normal

The First Minister published the Scottish Government’s strategy for coming out of lockdown on Thursday and encouraged a public debate on the issues which the document raised.

For the social care sector coming out of lockdown is likely to be very challenging. If as it is envisaged that there will be a phased and incremental removal of restrictions it is highly likely that this will mean that formal care settings will be amongst the last to be back to familiar patterns of behaviour and access. Even when this happens it is likely that social distancing will continue for some time and that staff will be required to continue to utilise a high level of PPE. It is likely that there will need to be increased staffing levels in a sector which has most recently been faced with acute staffing pressures and significant economic instability. But over all these very important and genuine concerns there should be a heightened awareness of the impact on those who are the recipients of social care and support.

Over the last two weeks in particular it has become clear that the levels of distress, of emotional and psychological harm, upon those living with dementia in our care homes and in our communities in Scotland are becoming more and more acute and worrying.

The ongoing focus in care homes in particular has been quite rightly the sustaining of life. This has led to the development of guidance which has meant that for 6 weeks our care homes have been in effective lockdown with only rare visits at the end of life and in the earliest couple of weeks for one named individual per family in situations of real distress. I fully understand and appreciate that concomitant to this have been clinical and infection control measures which have advocated self-isolation and social distancing; the end to the use of communal spaces and effectively the confinement of individuals who have been symptomatic.

Such ‘emergency’ measures have been justified as necessary and proportionate in order to achieve the legitimate aim of the maintaining of life. But I now believe that six weeks on we need to consider and actively debate both how long these restrictive measures can continue but also whether they are indeed the most proportionate and human rights-based interventions.

My personal concern is that we need to get a better balance between proportionate restriction of freedom of movement in order to attain infection control and a diminishing of normal life to the extent to which it is causing psychological and physiological damage e.g. through increased falls, impact on nutrition, effect on hydration, increases in delirium state etc. I am concerned that too many assumptions have been made in the adoption of infection control practices which fit an acute hospital-based environment without a full  appreciation of the nature of care homes and of the population that is supported within them. I am fully aware that there is growing epidemiological evidence around the nature and rate of transmission of Covid-19 in care homes and that we are some distance from the peak of the challenge. However, we have to more fully recognise specifically that the levels of acuity in care homes are exceptionally high and in particular that the vast majority – probably about 90% – of residents have some form or another of dementia.

Lockdown from the perspective of someone living with dementia has been in many instances quite frankly, simply hellish. Staff have spent a lot of time reassuring, being present, reminding and reaffirming what individuals about what is happening. They have supported people to understand why family have not visited and have used technology to help people to remain in contact. But sadly, such measures have only worked for a minority. For many more this has been a maze of confusion, distress and very real emotional trauma. The familiarities of touch, eye contact, physicality and presence have been denied them. The rhythms of routine so fundamental to someone living with dementia have been replaced by strictures and detachment which is causing real harm. Despite all the best efforts of nursing and care staff, care homes even where there have not been cases have changed.

Outside in the communities we are hearing equally distressing stories of individuals without family support who are immensely confused and disturbed by the changes in the pattern of their encounters with homecare staff, with neighbours and with friends.

I am convinced that we need urgently, not just as a care sector but as a whole society, to think about how we are going to support the ‘new care normal’ in care homes and in communities.

If we are to continue with some form of restricted access for some time then we need to appreciate that a care home is not an institution or a unit – it is someone’s home – and we need to get back to that understanding as quickly as possible. We need to re-connect care homes to families and vice-versa taking appropriate precaution but balancing risk against the reality that for many individuals their lives are greatly diminished and risk being fore-shortened by current measures. We need to create a real army of volunteers and others prepared to support the added demands of staffing which will be necessary with new models of care which need to maintain their human touch and person-led focus. Critically we need to urgently move from self-isolation to safe social distancing within the confines of the physical environment of a care home supporting re-connection and re-membering.

Within the wider community I am also concerned that some of the narrative which we are hearing in the media is presumptively assuming that there will be the use of age restrictions in our exit from lockdown, so for instance those over-70 may be in lockdown for a longer period of time. Just as withdrawing treatment based upon age was unacceptable as an ethical choice so I would contend such restrictions would be equally unacceptable. Setting different rules based on age is a blatant form of discrimination. It is one thing to seek to shield those most at risk because of underlying health conditions it is quite another to use blanket catch-all prohibitions.

The ‘new care normal’ needs to be molded by families and residents, citizens and carers, clinicians and professionals, so that together we get the right balance between risk and life. We urgently need to have this care conversation as part of the national conversation the First Minister started on Thursday. Put simply there is a difference between existence and living and for many living with dementia at the present time that balance seems not quite right.

Grieving in the time of a pandemic

Grieving in the time of a pandemic

Professionally I have been involved in the work of death, dying and bereavement for most of my adult life, both teaching and writing about the subject. In some senses then I am at ease talking about death and dying, about the pain of loss and the emptiness which the absence of another leaves.

At a personal level, like so many, I have had times when I have lost those very close to me. In those moments I have been forced to do the hard work of grief. In all honesty it has been in those personal times despite my so called ‘head knowledge’ that I have struggled to find a path through and a sense of balance when the waves of emotion overwhelm.

Bereavement is the sense of feeling robbed and bereft. For no matter how expected or anticipated a death or loss is, its ache is still sore, its pain still raw, its touch a cold beyond description. The pain of grief is like no other. It is a total emptiness, feeling abandoned and bereft and a searching which never seems to end.

This sense of lost-ness is beautifully conveyed in the original word for ‘bereavement’ from the Old English- ‘bereafian’ which denotes a sense of deprivation, of being robbed by someone, of being seized or grabbed out of living and life.

It is this feeling of being robbed that has been described to me in the last few days in my conversations with people who have had to endure the death of a loved one, someone they knew or who they cared for to Coronavirus.

This pandemic robs you. It robs you of time. It robs you of the moments when you would have been with another to say goodbye. It robs you of the touch, of the assuring smile, of the ability simply to wipe away a tear, of the chance just to be there. For to be with another at such times is to be still, to be in a touching place between life and death, between presence and absence.

This pandemic has robbed us of our traditions of saying goodbye. This is true of those who have died whether of Covid or for any other reason. It has robbed us of those moments when we find ourselves comforted by others; family have literally to be two metres apart unable to hug and console. It has robbed us of times when a song, a piece of music or hymn has sparked a memory and given familiar reassurance. It has robbed us of the rituals and rhythms of funeral and wake, of tradition and association. It has robbed us of the conversations which have sparked laughter even from the depths of sadness. It has robbed us of our ability to be with others, to reminiscence and remember.

This is in no way to deny or forget that undertakers and funeral directors, clergy and officiants are doing amazing jobs to keep things as ‘normal’ as possible not least through ‘Zoom funerals’ and video links. But strangely that very ‘connection’ has for many of us felt artificial serving only to confirm the sense of bereftness.

But out of such a sense of futility there are those who have been working hard to ensure that we can grieve despite the pandemic.

I wrote last week bout how important it was that we all made efforts to ensure that even if far from perfect there is a chance for people to say goodbye. I was therefore very pleased that a few days ago the Academy of Medical Royal Colleges along with Marie Curie and Scottish Care was able to publish some guidance to help this process. Huge thanks to Professor Andrew Elder for championing this and getting this done. 

Then on Wednesday we saw the publication the first Bereavement Charter for Children and Adults in Scotland. Over the last eighteen months I have been honoured to chair the working group of practitioners from across a whole range of organisations who have come together because they believed that Scotland needed to get better at dealing with death and dying. They devised the Charter as part of a national movement to get us all reflecting more about the role that grieving and supporting those who grieve should play in our lives and in our communities. 

No one could have imagined that the Bereavement Charter would be launched in such strange and disturbing times. Its messages have never been more important or necessary.

The next few weeks we will be all of us be rightly focussed on beating this virus. We will also be concerned about those most impacted in families and as professionals in the NHS and in care homes and home care. But after we get through to the end even if it is just the beginning of the end we will still be robbed of so many who have died, still needing to do the work of grieving.

We will need to do a lot to support those who are formal carers especially those who have faced grief at its most acute. For no matter how skilled and experienced you are we all need to be supported and upheld through our grieving, we all need to find a solace that comforts us in our weakness. When we have a sense of futility and despair, both personally and professionally, we need there to be space to open up and pour out our feelings; we need there to be people who have time and capacity simply to be present and there for us.

That will necessitate real change. There will be few of us who will be left untouched by this pandemic. Few of us will not know someone, however distant, who has been lost to the virus. We will all of us need to grieve both as a nation and as individuals. We need to be given space and time for that to happen.

We will, I hope, have a National Day of Mourning. I hope we will also as individuals and families have space for formal memorial services and events to recognise those who have died. But I also hope we will start to change the way we think about death and dying, the ways we need to begin again to restore the lives of those who are grieving and give solace to their hurt. Perhaps as a society in recent decades we have lost the capacity to share the grief of others and have individualised death, dying and loss. This surely has to change. We owe it to those who have died that their loss should mould us into a new tomorrow.

If Coronavirus leaves us with anything I hope it will be a determination not only to live better but also to be more comfortable and open in the face of dying as individuals and as a nation, for it is in that light, I am convinced, that we end up living our lives to the full.

Donald Macaskill