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

 

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 

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