Losing touch in the Coronavirus pandemic

One of the few positives to have come out of the Covid19 pandemic has been the extent to which folks have got in touch with me through social media with at times very personal questions, concerns and stories.

This weekend I have been thinking a lot about those who will not have managed to be in physical contact with their families because of the lockdown that care homes and the rest of society is experiencing. This is very hard indeed but perhaps it is hardest for those who have a family member who is at the stage of receiving active palliative care and who are at the end of their life.

I have also spent time this weekend considering with colleagues the importance of enabling families, with appropriate safeguards and protection, to be present at the death of their loved ones.

I received a message from the wife of one of the residents in a care home this morning. She said:

“ I was initially very frightened about the virus, but I wanted to be with John. The staff supported me so much and made sure I was wearing the right protection… I know it was not ideal… but I was at least there… I am so grateful for them… even though I was wearing gloves I held his hand as he passed… that was so important … I felt the touch of his heart through my fingers.”

If we have the opportunity, being present with those who we know and care for at the end of their lives is so very important. It can help a great deal to know that they were comfortable, able to feel and have the sense that we were there.

Sadly, for too many in hospitals and in care homes this has not been possible in the last few weeks. Despite all the challenges and restrictions, I know that staff have tried to keep people in touch, through recorded videos and voice messages. Staff have spent time in care homes speaking about family members and loved ones to someone who is dying especially as for many care home staff they have known the families through their visits and contact for a long period of time. It is  these amazing care home staff who through their voices have sought to console and comfort, whose hands have offered the touch to remove fear and soothe anxiety, and whose presence has instilled solace and assurance. I know through all my work across Scotland’s care homes that staff are skilled at simply being there, alongside in silence and in word, with those who are dying,  there to hold someone’s hand in the last minutes of life.

Along with others I fear the damage that is being done to us as individuals by being denied or prevented from having these opportunities. So, over the next week, with others, we will attempt to do everything we can to make it easier for care homes to admit a family member to be present in the last hours and moments of someone’s life. It might not always be possible, but I really think it is of such fundamental importance that we all of us need to try our hardest – despite the obvious challenges – to enable this to happen.

“I felt the touch of his heart through my fingers.”

Donald Macaskill 

Advice for the Easter Weekend

The Easter bank holiday weekend is an important time for many. This year we need to be doing things differently.

Restrictions on visits to care homes and to individuals in their own homes (unless providing care) MUST remain in place and only essential travel can take place.

Gifts, cards and presents are fine to receive but please follow strict infection control procedures, including isolation of items for a period of time.  Please follow the advice on NHS Inform.

We recognise that this weekend, more than ever, many people will be feeling the strain of being apart from loved ones .  It is essential that we are supporting people as much as possible to remain socially connected to activities and loved ones in order to support their wellbeing.

Useful resources:

Please also consider how staff wellbeing can be supported, as they too will may be struggling with being separated from friends and relatives and of working extremely hard in challenging circumstances.

Useful resources:

 

Have a safe and happy Easter in these strange and difficult times.

 

 

 

 

The hardness of COVID ethical choice

Nelson Mandela in a speech in 1998 stated:

“A society that does not value its older people denies its roots and endangers its future. Let us strive to enhance their capacity to support themselves for as long as possible and when they cannot do so anymore, to care for them.”

Like many others I have been waiting with interest for sight of the ethical guidance which would be made available to our frontline clinicians who are engaged in the struggles against the Coronavirus epidemic. I read the ‘COVID-19 Guidance: Ethical Advice and Support Framework’ with considerable expectation and hope for a clear grounding for hard decision making. When I finished I was left with more questions than answers and no small sense of disappointment.

The reason for such a document is self-evident. Despite all the best efforts of planners and politicians we may get to situation where there is insufficiency of resource to be able to provide the optimum clinical care and treatment to every citizen.  As the document itself states;

‘if immediate need exceeds what is required and there is no additional capacity, changes to healthcare delivery and scope may be necessary.’

It is in this context when we are clearly not in ‘normal times’ that we need to be able to give our frontline clinicians the ethical, moral and rights-based tools to allow them to do their harrowing job with dignity and authority. I am afraid this document fails to give that sense of grounding and raises fear and concern for many of us. It fails to live up to its declared self confidence that ‘This guidance is considered both clinically sound and on firm moral ground.’

Some of my concerns include:

The Guidance describes the role of Ethical and Advice Support Groups at both a national and local level. Whilst the membership is delineated as including clinical professionals, academics, lawyers, religious groups, social workers and lay persons, it does not describe for us HOW these individuals will make their decisions. What will be the moral and ethical boundaries, principles and framework which will guide them? What will be the clinical criteria to enable them to make impossibly hard recommendations? Will these be based on utilitarian views? How will we be assured that their decisions and advice will be non-discriminatory and based on a robust human rights critique? To what extent will characteristics of age, co-morbidity and frailty influence decision criteria? What indeed will be considered the interests and obligations that this decision-making has to the ‘wider population.’

Secondly, the Guidance uses a lot of ‘feel good’ language but does not illustrate how that assurance is going to be played out in reality. It states that:

‘Everyone matters…

Everyone matters equally…

the interests of each .. are a concern for all of us

Harm suffered by every person matters…’

All undeniably laudable aspirations and statements but how are these fulfilled in practice in an emergency, resource constrained environment?

The Guidance describes the principles of Respect, Fairness, Minimising Harm, Working Together, Flexibility and Reciprocity, but again one is left asking what it means to state that

‘Patients should be treated as individuals, and not discriminated against.’

Perhaps more challenging is the statement:

‘No active steps should be taken to shorten or end the life of an individual, however the appropriate clinical decision may be to withdraw life prolonging or life sustaining treatment or change management to deliver end of life care.’

Thirdly the use of certain phrases beg more questions than they deliver answers:

‘Where there are resource constraints, patients should receive the best care possible, while recognising that there may be a competing obligation to the wider population.’

‘Under normal circumstances, these decisions would be made of the basis of patient choice and anticipated clinical benefit to the patient. In the context of increased demand, it may also be important to consider fairness of healthcare distribution within the wider population.’

What in this context is meant by the ‘competing obligation of the wider population’? If we are to supplant patient choice and anticipated benefit for an individual what does ‘fairness of healthcare distribution’ actually mean not just at a theoretical level but in raw reality for individual citizens? Care is to be rationed- I can understand – but ethically what does the needs of the majority mean for the care of the vulnerable minority?

Fourthly, I am really concerned that issues of equality and human rights are mentioned explicitly only in two footnotes. I have stated before that Scotland should be rightly proud of its articulate defence of the human rights which have framed both our legal and parliamentary process, not least since Devolution. To present a document which articulates some of the most challenging ethical choices of our generation, perhaps of any time since the Second World War, and to have that devoid of a robust human rights articulation is wholly inadequate. How are we going to make an ethical decision which upholds the right to life and the right not to be subject to inhumane and degrading treatment? How is the State going to fulfil its duties to the Human Rights Act or the European Convention of Human Rights? I see no robust articulation of this within this document. If human rights are to be more than rhetoric in easy times they have to be real in hard times.

All this matters a great deal and it matters now.

Already we have stepped into questionable territory.

I can fully understand that for many frail and older people who develop Covid19 in a care home that the best place for them to be supported is within the care home, that transfer to an acute setting is likely to be over traumatic and result in little effective clinical outcome.

I can accept and know at first hand the astonishing professionalism around palliative and end of life care delivered in Scotland’s care homes which makes them in ordinary time hospices in the heart of our communities.

What I am deeply uncomfortable with is a blanket presumption that there will be no transfer of any individual (except in the instance of large-scale fractures) from a care home into the acute context. This leaves me disquieted because it presumes that all individuals within a care home are old and frail and it assumes a sufficiency of resource in care homes which would potentially enable some individuals who have a severe infection to respond well.

What I am equally appalled by in the last few days is the numerous instances of DNACPR being demanded as routine and automatic from care home residents by some general practitioners up and down Scotland. Quite rightly the Chief Medical Officer has robustly challenged this.

I am equally dismayed at the number of GPs who have in recent days intimated that they will not visit care homes. I fully understand that the risk of infection has to be taken into account but a presumption of non-attendance to meet the needs of individuals, even with the best use of video diagnostics, is wholly unacceptable.

If equality of access and treatment mean anything then we must not abandon our care homes, their residents and staff to an unequal level of clinical support.

The next few days and weeks must surely be those where both the clinical community and wider Scottish society needs to have a proper debate about ethical treatment and care in the face of reduced resources. It is simply too important a set of decisions to be left to a document which though it tries hard is too subjective, too generalist and lacking in a foundation of human rights and equality.

The way we respond to harrowing issues of choice will determine the society we will be as a nation after Covid-19. In Mandela’s terms decisions which are potentially based upon an over-reliance upon age and do so in a discriminatory manner endanger the rootedness and the future of the whole of our society. I trust that over the coming weeks by our actions and decisions we will all create a future we will be proud of.

Dr Donald Macaskill

A thought piece on Coronavirus from our CEO Donald Macaskill

“ I don’t know what people are worrying about. It’s just going to kill the old folks.”

That’s one of the many remarks I have overheard on public transport this week since conversations started to focus in on COVID-19. When you couple these comments with public officials stating in the media that the majority of deaths from the virus have been “just amongst the elderly” you are left with the distinct impression that this is not a pandemic the majority of us need to get too worried about.

But the place where such attitudes have almost become endemic is social media. There are literally hundreds of tweets suggesting that those of a youthful age and who are not  immuno-suppressed need not worry – all will be well –  just clean your hands! Some of the content on Twitter really doesn’t hold back:

‘Corona virus is killing pretty much just old people. It sounds like Earth is getting revenge for them destroying literally the entire planet and not caring about it.’

‘What I find so funny about this is the corona virus is deadly to old people which are the establishment and conservatives biggest base. If god uses diseases to punish I wonder what message hes saying with this one.’

Not since the AIDS epidemic was painted as the judgment of a righteous God has there been such a negative discriminatory association between a virus and a specific group.

Of course, the reality is that any virus never discriminates by the age of its victim but rather anybody regardless of their date of birth and most especially those with a supressed or limited immune system are disproportionately affected.

I find it immensely despairing that there is both within the wider public and in the media a creeping ageism in the reporting of and discussions around COVID-19. It is almost as if because someone is older in years that their dying is of less impact or importance; that their loss to the community, to family and friends is somehow less painful and distressing to those left behind.

At one level you could say that what we are seeing here is simply classic age discrimination playing out on Covid-19 as it does in so many walks of life from employment to the allocation of public funding. But I suspect at another level what is happening is something much more significant and profound.

What does this say about us as communities and as a nation in Scotland? Is the virus beginning to strip away the polite veneer that hides attitudes and beliefs that are simply ageist and hostile against the old? Are we finally unmasking a popular consensus that considers that to be old means that your worth is over, your contribution complete and your value limited?

The way in which we respond to any challenge marks us out both as individuals and as a community. Are we going to be one which in cold-centred self-interest and protection considers the value of an old person to be less than someone much younger? Are we going to become blasé to the fact that perhaps thousands of our older citizens will be affected by and many will die as a result of this disease?

Over the next few days and weeks thousands of women and men who work in health and social care services will be putting other people, their care and support, before their own needs. We will undoubtedly as we often have in the past witness a selfless dedication and professionalism that doesn’t just go the extra mile but an extra marathon in terms of commitment, compassion and love.

The days ahead will help to shape us as a society. Will we be a Scotland which cares for others, gives value and grants respect regardless of chronology or age? Or will we care less, commit less, consider less because someone is in their eighties or nineties?

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?

Dr Donald Macaskill

This piece first appeared in The National newspaper on Sunday 8th March 2020. 

 

International Women’s Day: a blog from our National Director, Karen Hedge

Yesterday I dropped my children off at school on ‘World Book Day’. Amidst a sea of Harry Potter characters and superheroes I spotted someone else. There over by the door was Frida Kahlo, this girl of about 9 years old had brought the book ‘Good Night Stories for Rebel Girls’, 100 tales of extraordinary women. I purchased our own copy that morning.

Yet in doing so, I felt discontent. Of course I want my son and daughter to hear about the impact that women throughout history have made, but I could not overlook that twinge of disappointment and perhaps also a bit of rage that in 2020 we are still having to create our own platform to do so. Given the recent decisions and discussion around immigration, with a UK Government irresponsibly  and incorrectly describing social care as low skilled, this is a theme sorely and dangerously evident in social care. Intersectionality makes this worse.

The reality is that social care staff are highly skilled, professionally registered and regulated. They spend their working hours (and often more given that a significant proportion have personal caring responsibilities) supporting our loved ones, some of whom may require palliative or end of life care, have multiple co-morbidities, advanced neurological conditions or dementia and so on.

SSSC data shows that 86% of our care home workforce and 81% of our homecare workforce is female. Anecdotally from previous Scottish Care focus groups, we believe that many of those who do work in social care often take on ‘male-dominated roles’ such as handyman or chef. That there is such a gender divide should not really be surprising, it mirrors other sectors – 83% of primary school teachers are female.

We have a his-and-her-story of working with peers of our own gender; one of the contributing factors to the gender pay gap. A recent report by the Kings Fund[1] states ‘Jobs done by women are undervalued’ both in terms of the value society places on the jobs and the wage people are paid. Jobs with a higher percentage of women tend to be lower paid, and if, over time, the proportion of women increases average pay goes down further.’. Sadly I can evidence this from my own experience. I first worked as a paid carer in 2000 earning around £8.75 per hour. In 2020, social care is purchased by local authorities (usually) on the premise that social care workers are paid the Scottish Living Wage of £9.30. That makes a rise of 55p over 20 years.

One of the suggestions to counter this imbalance is to encourage more men to work in the sector as if balancing the gender of the workforce, would increase the value of the job. Of course having a more diverse workforce is welcome and a positive proposition, and from an academic perspective, this move makes perfect hypothetical sense, but a cultural shift takes time, and in many ways dilutes the issue to hand. The other solution is simply to recognise and value the workforce for the registered and highly skilled people they are.

Another example, to use the term coined by Carolina Criado-Perez in the same-titled book, of ‘Invisible Women’ is that social care contributes £3.4 billion to the Scottish Economy, which is more than agriculture, forestry and fishing. It seems no coincidence that the latter is a sector traditionally dominated by men.

Yet there are positive changes and opportunities. Whilst women are less likely to be company owners or shareholders, this trend is bucked in social care. Where other Boards are implementing 50:50 rules for the make-up of their Board, the Scottish Care Executive required no design to meet that criteria, it happened naturally as a result of the significant number of women in those roles.

At middle manager level, it is still the majority of staff who are women. Bringing their frontline leadership skills with them – social care staff are very often lone workers adept at making decisions in what can sometimes be challenging situations, they are well-prepared and qualified for the responsibility. As evidenced in the Scottish Care report ‘The Experience of the Experienced’ others have entered the sector bringing skills from elsewhere. We must also recognise that many have taken a reduction in pay or conditions to pursue this career where they can make a difference every day. But why should they have to?

We have also recently seen Project Lift, a leadership programme which started in the NHS open its doors to social care staff, growing our leaders of the future and potentially opening doors across health and social care. In addition, the current campaign to encourage more people to work in the sector and the Adult social care reform programme both have potential to promote the value of social care.

And so in raising the profile, we raise the value. Today is International Women’s Day. The theme for 2020 is #EachforEqual a statement of ‘Collective Individualism’ pointing out that it is as individuals we challenge, but only together that we can achieve change. This is not simply a call to women, or even to create the conditions for a counter-movement calling for an International Men’s Day. In collective individualism we work together and for mutual benefit. In this industry we might use the words collaboration and co-production.

Equality brings health and wealth to whole communities. So I ask you to channel your inner Frida Kahlo or whom-ever your inspiration might be. Perhaps they are a care worker.

Share this message wide and if you feel as I do, turn your disappointment (and rage) into action. #EachforEqual is for all of us, but to achieve it we must recognise and raise the true value of social care incorporating the value of our care workers, managers and owners of all genders who devote their time with skill and compassion, and who inspire us every single day. #careaboutcare #independentcare 

Karen Hedge, National Director, Scottish Care 

[1] https://www.kingsfund.org.uk/blog/2018/06/gender-pay-gap-what-now

Imagine a Decade of Care: a new year blog from our CEO

As doors of all sizes, shapes, and colours open up across Scotland to welcome in the first foots of the year; as peat, log and paper kindle an open hearth, as hand and hug, food and drink foster hospitality and welcome, so we find ourselves standing at the brink of a new decade. What to say at such a point in a blog for the New Year?

It would be the folly of futility to try to prophesise what this decade will bring. Indeed, at its edge we are witnessing almost unapparelled times of political uncertainty and societal challenge and no little fear and discomfort. But in the spirit of the optimism and hope with which we traditionally greet the new year as Scots, I for one would want to be positive and optimistic for to be any other is to bring into life the darkness that risks our tomorrows. So, what of social care? I would like to imagine and hope that this will be a Decade of Care.

I imagine a decade where women and men who do the astonishing job of caring for others, whether as a family member or as a paid professional, will be recognised as the vibrant heart of our country not as is so often the case as a drain and drudge. Where they will be properly remunerated and resourced either by appropriate respite and support or by being paid a wage, which is not just about ‘living’ but about being valued and affirmed, being able to dream their own dreams and live out their own future.

I imagine a country which turns the tables on what is considered to be of fiscal value and sees that those who care for others, those in our people sectors as the true entrepreneurs and navigators of our nation’s future; where the economic value of social care is not just talked about but that we consciously choose as a society to invest in, to finance and support the innovation and growth of our care sector.

I imagine a decade where we will be able to shape the way in which technology can enable us to be better at caring, to be more present when we need to be, which frees people up to care and which reduces the drudge of the practical. The 2010s have seen enormous progress. It was that decade which brought us technology as diverse as the iPad, driverless cars, smart devices by the score and 3D printing. Who knows what the 2020s will offer. But I want to hope that all innovation will be rooted in an ethical and human rights framed understanding that commits to the human and the personal, to citizen autonomy and control over data; and for each of us, but especially those who require care and support, to be the directors and leaders of their lives and not actors to someone else’s script.

I imagine a society which finally takes seriously the environmental and natural challenges we are all going to have to address. A Scotland where we do not just leave it to our children to be the campaigners for our planet. Admittedly the care sector has much to do in this regard, but this decade will have to be one which reduces waste, replaces unnecessary use of plastics, transforms our use of energy  and which makes being green a core part of what it means to care.

I imagine a society which does not just talk about human rights in pious platitudes and political catchphrases, but which acts to enshrine the rights of others at the heart of all we do and who we are. Where dignity, fairness, respect and choice are ethical values which are also underpinned by the robustness of legal recourse. Where we do not just talk the talk by passing great legislation in our Scottish Parliament but robustly enable change to happen through progressive work on issues like self-directed support, mental health legislative reform, palliative and end of life care and bereavement support, and every other piece of work that enables citizens to lead, removes power from vested social and political interest and truly democratises the way we do things.

So, I have no shortage of imagination as I stand on the edge of the decade – but that is not enough. Imagination has to be rooted in a determination to do different and be better. Imagining tomorrow starts with struggling with the issues of today.

For me in the work I do those struggles are against the discrimination of the old who are too often treated as if they are ‘has beens’ with nothing to say, contribute or change. It means challenging the cult of youth by recognising the mutuality of community, the inter-generational nature of belonging and the inter-dependency of all. It means challenging the easy complacency which inadequately resources and funds the costly task of care. It means the end to a naivety which thinks that quality care and compassion can be bought on the cheap and delivered on a shoestring. It means giving real power to citizens and real choice, not the creating of one-size fits all solutions or the drawing back of choice on the questionable presumption that Mother State knows what is best for you. It means shouting down the casual excuses of ‘It’s Aye been done like that’It’ll no work here’ or ‘We’ve tried it afore.’ – these three sisters of Scottish passivity – which are holding back so much across Scotland that is innovative, progressive, challenging and new.

To imagine a decade of care is to imagine a time where all those with something to say are heard and listened to; where those who struggle to be heard because of disability or self are able to find voice and recognition; where the scars of mental health are recognised and reshaped regardless of age; where the emptiness of a lonely life is populated with the presence of others; where personal purpose and meaning unleash the shackles of addiction and dependency; where the stranger is seen not as an outsider but as the one whose presence shapes our communities; where the contribution of those who are migrant and new citizens is celebrated and valued; where we no longer debate difference as the means of creating identity but where inclusion and openness foster belonging and citizenship.

I hope with others to reach a 2030 having contributed my own small share to creating a Decade of Care.

Bliadhna mhath ùr agus deichead ùr sona

Happy New Year and Happy New Decade.

Dr Donald Macaskill

CEO, Scottish Care