I well remember how much effort was put into the planning of the birth of a new child and its arrival into the world. So many hours making sure the right clothes were bought, the cot was built properly, care seats fitted and tried, the pram was ready and so on. And then the actual birth – the planning process around birth is unrecognisable today compared to the experience any woman might have had in the 1960s or 70s.

Childbirth and early years must equate to one of the most planned and prepared for moments of our lives. That sense of planning continues to a lesser degree as we go through life and grow up. Whether it is our education and career choices, our university or college, our vocation or job, then through the various stages of relationships and partnerships, our first flat or home, a marriage or engagement – there seems to be no limit to the times to plan, schedule and prepare. Then we get older, and we age. And the planning seems to diminish if not entirely disappear.

Perhaps it is the demise of the life-long career or the ending of the statutory retirement age or the unpredictability of modern pensions, but it strikes me despite all the pressure and focus, the encouragement and emphasis, that fewer and fewer people prepare for post work life or for older age in general.

The positivity of human demography in Scotland is that most of us will live longer than our forebears and our children and grandchildren will live even longer. The challenge is few of us do so with an abundance of good health.

We are now into the second year of the United Nations Decade of Healthy Ageing and I am increasingly of the view that the way we today view ageing is anything but positive and healthy. In fact to some degree, I think the pandemic and our response to it internationally as well as in the UK has put us back years in terms of challenging age discrimination and the valuing of older age in particular.

The Decade (2021-2030) aims to be:

‘a global collaboration, aligned with the last ten years of the Sustainable Development Goals, that brings together governments, civil society, international agencies, professionals, academia, the media, and the private sector to improve the lives of older people, their families, and the communities in which they live.

Populations around the world are ageing at a faster pace than in the past and this demographic transition will have an impact on almost all aspects of society. Already, there are more than 1 billion people aged 60 years or older, with most living in low- and middle-income countries. Many do not have access to even the basic resources necessary for a life of meaning and of dignity. Many others confront multiple barriers that prevent their full participation in society.

The COVID-19 pandemic has highlighted the seriousness of existing gaps in policies, systems and services. A decade of concerted global action on healthy ageing is urgently needed to ensure that older people can fulfil their potential in dignity and equality and in a healthy environment.’

The Decade has four focus or priority areas for action, namely age friendly environments; combatting ageism; integrated care and long-term care.

I was reflecting recently on the relative lack of progress in terms of the Decade with some colleagues and on the growth of what I consider to be even more ageist attitudes in the last few years as we responded to a recent consultation on healthcare and older people. In particular the consultation asked for perspectives on the role and value of what is called ‘Anticipatory Care Planning.’ These are plans often prepared with an older person post diagnosis of a serious illness like dementia and cancer. They come in various formats but consist of a description of choices and desires around deteriorating health and potential loss of capacity and personal control.

I think there are emerging views that the negative experience of some people with DNACPRs during the pandemic has made the work of developing ACPs harder. But apart from the unhelpful association with negative pandemic practice I think one of the basic needs is that we as a whole society need to re conceptualise our planning into and for later life, for ageing in general and to develop and nurture much more positivity than we currently possess for older age.

Work needs to be undertaken to ensure that planning is part and parcel of later life and ageing and that maybe even the term anticipatory care plan is one that we need to ditch. Planning for later life does not need to be about planning for decline and deterioration or for the inevitability of care and support. Why instead should we not broaden out planning for later life away from the narrow confines of health and social care? Why should we all rather not be encouraged and resourced to create a Later Life Plan, or an Ageing Plan?

Now I immediately recognise that for so many of my fellow citizens this seems illusory or even a waste. There are, I fully acknowledge countless thousands who simply do not have the capacity or resource to ‘plan’ for their future, so busy are they with simply continuing to exist and meet the basic human needs. Such poverty in older age should shame us but should equally be an incentive to ensure that whole life planning becomes fully inclusive of older age.

I think as part of this we urgently need to reform the way in which pensions and support in later life is offered, including the inequities of funding for some parts of social care and health and not others. We cannot achieve the laudable aims of the Decade of Healthy Ageing without seriously addressing the structural and systemic issues which fail to prevent ill health, mitigate against measures to protect, and which disable our ability to address the diseases of older age, not least mental health, and wellbeing. We need, I would suggest, a radical non-partisan and politically independent commission on older age across our society to meet the Decade’s aims and aspirations. Instead, we have piece meal strategies which regurgitate promises and past policy without venturing into new ground and possibility.

We need to both individually and collectively plan for the future of ageing as a positive prospect and possibility rather than to react to ageing as something accidental or by  happenstance. Only when we individually and societally start to plan and resource positive ageing will we achieve both healthy and holistic older age. Let us put as much focus in later age as we do in preparing for birth and new beginnings.

Donald Macaskill

The following is based on a contribution to the inaugural session of the Human Rights and Social Care Forum created by Dr Caroline Green, Kings College London, which was held virtually last Tuesday.

If not here, where?

The recent past has cut itself into our hearts like a sore wound. There will be other opportunities to more fully reflect on the wider and detailed lessons of what the last two and half years mean for our society, for the way in which we value older age and in particular dementia as well as the relative priority we give to the resourcing and recognition of social care and its workforce. There will be time to reflect on what I have elsewhere described as the conscious and unconscious inappropriate limitations of human rights – not on all occasions but at some specific times and moments.

It has been a time of hard harrowing and a winnowing of our hopes.

But I want to look both forward and back in the space I have been given, not least as I strongly believe that the legacy of such pain and terrible grief should be healing and if required deliberate and focussed action and purpose. If we do not plot our future we are much more likely to navigate into trouble and trauma.

I have a fundamental question to ask this afternoon about human rights in care homes and indeed elsewhere. The question I think we have to ask and answer is –

How do you enable someone to ‘realise, fulfil and flourish in their human rights, to be treated with equality and in a manner that recognises their unique dignity, and which fosters their sense of independence and identity?

There will be numerous responses and answers to that but for me it has to be about a rediscovery of the individual as the central focus of the human rights response.

We need to rediscover an individualised and personalised approach to human rights.

The reason I am saying rediscover is that the pandemic has shone a cruel light on the way in which we have collectivised our response to human rights to a cost of very real pain and loss.

At heart we have – and by we –  I mean society in general, politicians in particular, clinicians and epidemiologists, and those who provide care and support services – we have failed to treat individuals as unique and distinct and not part of a collective – our whole emphasis has been on keeping everyone safe rather than letting the citizen decide and lead.

Now doubtless some might hear these words as a utopian illusion and that in a critical situation of unparalleled threat it was necessary to a degree to sublimate the wishes of the individual and to focus on what would bring fastest remedy, safety, and security. There is much truth in such an assertion. If you are in a capsizing boat then it is often desirable to have strong, directive almost dictatorial leadership, from someone who knows how to rescue the situation – quite literally. But that appeal to emergency and urgency, the vestige of defence from hindsight and a lack of knowledge in the moment, can become a casual excuse for failing to act in an emergency or crisis in a manner which upholds individual rights and yet still protects the majority and fulfils the desire for response and safety.

I am not suggesting that every piece of clinical guidance during Covid should have gone out for extensive consultation, that the only way to uphold rights is to act in a manner which delays response, but I am saying that the presumption that you do minimum engagement, and that you develop guidance and introduce intervention without involvement is an erroneous and dangerous approach. The individual resident, family member or staff members and manager are the experts in the care home environment.

Moving forward I do not think ever again in pandemic response – oh and in passing was there ever a human rights impact assessment undertaken on the pandemic planning processes? (which were themselves wholly inadequate and lacking inclusiveness) – I sometimes doubt it.

Moving forward – there cannot be again a one size fits all approach to pandemic response. For me this was critically illustrated by the approaches to public health and especially to infection, prevention and control measures. In the early days there was a failure to properly contextualise approaches for preventing infection which may have been appropriate and attainable in an infectious disease hospital within an acute health environment but which paid all but lip service to the environmental dynamic of a care home, to the fact that this was primarily someone’s home where they lived not where they were treated or cared for, and to the critical importance of attachment, association, or simply plain love, being with family and having contact, routine, ritual and a diversity of experience. It was – and to a considerable degree – still is a process of IPC which puts the collective, the environment before the individual and the person. We can, must and should do better not just in any future Covid outbreaks but in facing any future risk from an infectious disease.

But how can we protect the individual rights of the person who lives in a collective or group dynamic such as a care home?

This was before the pandemic the central question often ignored, during it was a continual cause of pain and upset, and now and into the future I think is the singular most important question.

Passing laws is one good and necessary step – and in Scotland the changes to the Health and Care Standards enabling a right to visit during outbreaks, and the incorporation of Anne’s Law into the new National Care Service which is being developed – both are positive steps – but let us be honest – we had wider human rights law at the start of the pandemic but a systemic failure to utilise, respond and to adhere to these. Law is necessary but not sufficient.

I am convinced what would make the difference is if all involved become confident around the embedding of human rights in aged care – not just aware – but confident. That can only come through increasing knowledge and awareness of what a human rights-based approach is not just on paper, in theory and text, but in practice, in daily care home life, in the dynamic of relationships.

And that of course is the heart of all this – human rights are about relationships not texts or codicils – their origin in the modern context following the horrors of the Second World War – was to put right the relationship between peoples but much more importantly to begin to reframe and understand again the rights of the individual in a time of crisis, in a community of difference, and in a society where you may not feel that you belong.

Recently I have been spending some time reading the writings and works of Eleanor Roosevelt who was such an inspirational leader at the time of the development of the UN Charter in 1948, and who later President Truman described as the First Lady of the World.

Her words are famous – perhaps the most famous is her sentiment that unless human rights happen in the small places, the ordinary interactions, the mundaneness of human living then they mean nothing. She said:

“Where, after all, do universal human rights begin? In small places, close to home – so close and so small that they cannot be seen on any maps of the world. Yet they are the world of the individual person; the neighborhood he lives in; the school or college he attends; the factory, farm, or office where he works. Such are the places where every man, woman, and child seeks equal justice, equal opportunity, equal dignity without discrimination. Unless these rights have meaning there, they have little meaning anywhere.”

But in other writings and this is why I think her words need to resonate today for care homes, residents, staff and others she wrote about how important it was that we did not so collectivise human rights ; not just to focus on what they mean for a country, a nation, a group, but that we always understood that we need to start with the individual and what human rights means for the person.

Signing up to the latest Charter, embedding a covenant in national law, proclaiming you uphold human rights and are a human rights nation means nothing unless it means something to the individual person.

That is why I think we have a real task in care homes. Because like it or not a care home can indeed become a homely place, but it is not identical to one’s own home, because in your own home – by in large – you have choice and control over who you live with, who is your company, who shares your space and place. A care home is inevitably a place of congregated living and exchange, a place where we might get on with the majority, but there might be some we would rather not spend time with.

How then do you do human rights in such a place? How do you as a manager deal with someone quite rightly asserting their Article 8 rights to family life and wanting family to be present but at the same time deal with someone else who for whatever reason, perhaps fear and anxiety, are not wanting you the manager to allow anyone in to visit during an infectious outbreak. Ask any manager and she or he will say – this is the stuff, the mess of ordinary living.

If we take a scenario outwith the pandemic – how do you manage competing interests in terms of activity, or leisure; disagreements over relationships and friendships, disputes in regard to all the other choices which we are asked to make in care home and collective living life?

We have I believe to find a way to restore the individual in human rights in general, and specifically within aged care facilities. But I do think that there is a potential for a human rights-based approach developed in a care home environment to be able to speak to the wider and more general question of balancing the individual and the collective.

Long before the pandemic the Scottish Human Rights Commission developed a project I was proud to be associated with. It was the Care About Rights work and it sought in all social care settings to embed a process of conciliation and decision-making where human rights, equality and inclusion were held in creative tension. It centred around a decision-making process called the FAIR model and I would commend it to you.

It is not easy – it has to do with the mess of living and loving; it will not always work but it provides a framework for talking and action, for reflecting and relating.

We are all diverse and different and in that is the glory of humanity. Care homes at their best are about enabling the flourishing of individual life first and foremost and through that the enabling of what it means to live in loving tension and growing community one with the other. They have the potential of being the best form of human community as we age and sometimes as we struggle with illness and conditions which limit our individuality.

Eleanor Roosevelt also said:

“Remember always that you have not only the right to be an individual; you have an obligation to be one. You cannot make any useful contribution in life unless you do this.”

Let us in her other words create a future where the individual is prized above all – in creative human rights-based intention in our aged care facilities. If we want to make human rights real then they have to be meaningful for the individual resident, family member, worker and carer in our care homes. If not here, then where?

I leave you with some of her other words:

“The future belongs to those who believe in the beauty of their dreams.”

Donald Macaskill

‘We don’t talk about Bruno’ from the amazingly successful Encanto children’s animation has dominated my personal airways for months – like all ‘earworms’ I have found it impossible to stop humming or silently singing it.

It was a song that I’ve kept thinking about in the last week. My week started with a train journey to Aberdeen in early Monday morning. Because of the impending rail strike the carriages were deserted and there was just a smattering of folks in the carriages, some with masks and some without. I was in Aberdeen both to visit the exciting collaborative work being undertaken by Scottish Care colleagues and members alongside the local HSCP, not least their care technologist work, but also to attend the annual NHS Scotland conference where I took part in a couple of sessions on the Wednesday. At the conference the vast majority of the several hundred delegates were unmasked and after years of not seeing folks social distancing was most certainly not in evidence! It felt natural and normal but if I’m truthful I also had an undercurrent of anxiety and caution.

The primary reason for my caution was the emails and messages, the calls and conversations I was getting from social care providers including hearing about our weekly member surgery. They were telling me a very different story, presenting voices of concern rather than celebration. It was a hard story to hear.

It was a story of growing numbers of staff being off with Covid, of organisations especially homecare ones struggling to cover shifts because of staff shortages and long-term absence from conditions such as fatigue, depression, burnout and traumatic grieving; it was the story of the impossibility of recruitment with one provider recounting that 22 people were called to interview for a homecare post and only 3 turned up and that out of 12 organisations delivering homecare and housing support all of them had lost over a dozen staff in the previous few weeks because of the cost of living and fuel crisis. It was a story of growing anxiety that folks were not able to go on their summer holidays because they felt the need to cover shifts, in particular managers were saying their staffing crisis was now as bad as it had been at the peak of the Omicron wave a few weeks ago.

Now I am not naive – I know that the nature of a pandemic is of peaks and troughs – but at the moment it feels we are in a very challenging place and at a time when the social care sector is already stretched and exceptionally fragile.

The data published by Public Health Scotland on Wednesday underlined what I think is a change in the Covid story which we would do well to pay attention to. Last Wednesday there were 2,200 cases in the week to the 22nd compared to 1,181 positive cases a fortnight before which is a 30.5% increase on the previous 7-day period. Again, the numbers are likely to reflect a substantial under-recording and reporting. From what I hear many people are not testing, going to work or activities with what may be a common cold, hay fever but could equally be Covid19. The number of Covid re-infections stood at 15.5% compared to the 12.5% previous fortnight. There are now 948 people with Covid in hospital compared to 637 a fortnight ago – again another significant increase. There were 17 people in ICU which is more than double the 8 people a fortnight before.

In the week to Thursday 23rd June there were a total of 41 Covid19 deaths compared to 20 people the previous fortnight.

Again, there is evidence of an increase in the number of deaths in the Care Inspectorate data when for the week to the 21st June there were sadly 12 deaths including from suspected Covid compared to only one a fortnight before. Outbreaks have also risen sharply with a total of 131 in the week to the 21st June compared to 61 homes in outbreak a fortnight before.

This data should not be ignored. I really hope it is a blip and a result of activities such as the Jubilee long weekend but if it is not, I feel we need to start considering how do we respond.

Amid all this I am sure I am not alone in having a sense of conflicting and sometimes contradictory voices and thoughts in my head.

I hear the voices that say that this is a mild virus, that it is just a cold and that we need to learn to live with it. But tell that to those hospitalised or who have a really bad response, despite being vaccinated.

I hear the voices – and not least in a powerful workshop at the NHS conference – of the impacts of Long Covid – now affecting at least 155,000 people in Scotland according to a recent ONS estimate but which campaigners argue is much much more. These are lives limited, changed, altered, and diminished by what others describe as a ‘cold’ or ‘just like the flu.’  And we do not even know the impact of the new strains in terms of Long Covid risk or likelihood.

I hear the voices that say that vaccination has changed everything, and people just need to get protected. They are right – imagine a world without the protection of vaccination – but we know with distance of time that protection is waning and lots of us are not as protected as we once were.

I hear the voices arguing that we can never go back into restrictive lockdown, and I agree as long as vaccination protects the majority that we need to find other measures to ensure those most vulnerable are safe from harm, that their rights are upheld and that their independence, citizenship and contribution remains valued.

I hear the voices that express anxiety that they will be shut out from care homes. I am very aware a tweet I put out about growing Covid numbers in the community and its impact on staffing levels together with a suggestion of the need for more restrictions was interpreted as a request to return to care home restrictions. For that anxiety I apologise but agree we can NEVER lock people out of our care homes again. That is what Anne’s Law now part of the newly published National Care Service Bill is going to make sure alongside existing protections. No one I know wants to go back but rather think about how we can better involve and empower families. Care homes are amongst the safest places now – we have enough protection – the fear is the loss of staff as the virus gains ground in the communities in which they live.

I hear the voices that say that ‘life has to be more than existence’ and I agree that we need to bestow much more autonomy onto people to balance the harms in their life – protection from the virus against personal restriction; the emotional and psychological trauma of isolation and separation against being together with others even if there is a risk in that belonging.

I hear the voices of those who say they cannot cope with the psychological harm caused by measures which restrict their freedom and choice; that they are not prepared to be directed and told anymore.

But this last week in at least two meetings I heard the voices and was moved almost to tears by the stories of isolation and a sense of forgottenness, of felt abandonment and lack of priority that so many with long-term conditions, that so many informal and family carers are feeling at the current time. The newspaper piece by Dr Sally Witcher this last week was a powerful description of that sense of marginalisation and felt discrimination.

It has been a week of lots of voices, lots of conflict and lots of contradiction. By the end of the week as I travelled to meetings yesterday on the train, I had my FFP2 mask back on and I’ve started to test again.

But it is also a week where we saw the publication of the Bill to create The National Care Service. There is a lot to read and its emphasis on co-design and collaborative involvement is good but as with all things the proof will be in the consumption. But to be truthful it’s hard to get overly excited about a future prospect when the present reality is so precarious. I’ll reserve for another time further comment on the NCS but right now as I have described it before it feels like we are enduring a perfect storm – rising Covid cases, a unique recruitment and retention crisis, an energy and fuel cost nightmare, a cost of living breakdown and an inflation rate of 9.1%, together with staff fatigue and breakdown and so on.

There are some levers of influence and change beyond our grasping but why for instance has Scottish Government decided that next Friday they will stop paying social care providers and others sustainability payments for critical tools necessary to ensure infection prevention and the enhanced use of PPE? A fuller statement details our concerns. Timing is everything and during growing Covid community cases, a very fragile sector, and a depleted workforce this is one piece of timing in which is a huge and dangerous miscalculation.

I would dearly love to believe that Covid19 is over, that its threat has so diminished that concern is misplaced and that anxiety is unnecessary and inappropriate – but simply failing to face up to emerging challenge, to address these and to prepare for autumn and winter resurgence, will not result in safety. Pretending threat is not there because you want to get on with other priorities and address other issues and challenges is naïve and dangerous. Simply not talking about Covid will not stop it still impacting on our lives. We cannot stop talking about (and addressing) Covid even if we can about Bruno!

Donald Macaskill