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

I was fortunate to be able to attend a conference held by the organisation Migration Policy Scotland this past week. Migration Policy Scotland is a relatively new organisation, founded by Dr Sarah Kyambi and it seeks to

‘work to improve immigration systems and enhance migration experiences through research, policy influence and inclusive engagement… [and] aim to offer principled and effective solutions to the challenges that migration may pose, while actively championing the benefits it brings.’

I was the last speaker at the event which was focussing on the experience of the changes to the immigration system over the last eighteen months or so. Being last allowed me to have the opportunity to listen to other contributors share what was happening in their sectors. It was a less than positive story with farming facing the reality of lower supply of fruit and vegetables because migrant workers were simply not opting to come or return and so there was simply no point in putting things in the ground to grow and not be picked; with hospitality and tourism taking a massive impact running at around 40,000 vacancies in Scotland meaning 60% of hotels were understaffed; with hearing that whisky is being blended in France, that salmon is being cured in Spain and so on. There seem to be critical shortages across so many sectors in the Scottish economy.

With regard to social care the Christmas Eve 2021 announcement from the Home Office which offered visa options and reduced salary thresholds amongst other measures certainly led to a period of increased activity as organisations started to begin the process of international recruitment. The thorough and fair report of the Migration Advisory Council on social care is to be commended for the progress it sought to make. But the whole process of recruiting internationally is fraught with cost, bureaucracy and burden and for small often family run SMEs working in the care sector it is well-nigh to impossible to initiate never mind to consistently implement.

By the end of the event, I was left more convinced than ever before that what we need for Scotland and with a degree of urgency is a radical redesign of immigration policy which takes account of our unique and distinctive demography. As I stated at the event what we have now is an immigration system which is demographically delusional rather than demographically realistic.

Scotland is an ageing society and has a declining population. Sadly, as we age and live longer we are not doing so healthily and that brings a personal and societal cost to it. In addition, our population which is still active and working is older and inevitably less productive as a result of health, fitness and energy. We have also seen as a result of Covid19 an increase in the number of those described as ‘inactive’ in the labour market – that is those of working age who have either retired early or chosen not to work. As someone else has said people are thinking of the ‘life-work’ balance not the ‘work-life balance’ and deciding that doing less work is the way to achieve that.

Therefore, by simple arithmetical calculation we bluntly do not have enough people to do the jobs we need filled in order to function as a modern society.

It would appear that all that Brexit has done is to stop ‘free movement’ from Europe leading to a loss of thousands who went home never to return, and our new immigration system has broadly flipped the coin so that we are now attracting 10s of 1000s of more people coming to the UK to work from non-EU countries, primarily India. Nothing wrong with that though I suspect not what many pro-Brexiteers anticipated! We have not seen in other words anything other than a marginal difference in overall immigration numbers. More worrying still is that a huge percentage of those who do manage to get to the UK are caught in the metropolitan bubble which is London and there is a real lack of folks coming north to Scotland and elsewhere.

All of this and especially the urgent need to plug employment gaps means we need a mature migration policy not one reactive to some very xenophobic motivations. Scotland has always welcomed and cherished new Scots, and as a small nation we desperately need that influx of youth and imagination to ensure we not only sustain ourselves as a society but that we positively thrive and flourish. If we do not do something about this and relatively soon, we simply will not have enough people to care for our population as we age and that for me is not the sign of a civilised society. And just in case you are sitting there thinking we will get robots and computers to ensure longevity and care. Undeniably technology will aid us in the months and years to come as it already is, but care in essence will always remain a human task and exchange and I for one do not want a robot wiping away my tear or soothing my fear as I spend my last days and moments in life.

I am fully aware that many societies are facing the workforce crisis in care and health that we are experiencing in Scotland. I am equally aware that in the long-term migration cannot be the only response to these issues. Increasing the valuing of the role of care, recognising the centrality of its societal contribution by proper reward and remuneration, addressing gender segregation which perceives care as ‘a woman’s role’ – all these and more are critical responses but so too is a mature migration system fit for the demographic reality Scotland is experiencing.

Sadly, all the talk this last week about immigration has been dominated by an ethically empty policy using planes to remove our obligations to another place. Whilst only 7% of migrants in Scotland are refugees or asylum seekers, and a couple of days before UN World Refugee Day, I cannot help but think that the toxic negativity to those who come to our shores has helped to consolidate the failure of the UK Government to take the necessary steps to make real change happen. Social care across Scotland, like so many other sectors, urgently needs an innovative re-design of migration policy that starts from a base of human dignity and ends in a place of appropriate welcome and acceptance and with a system which is manageable, accessible and affordable for all.

Donald Macaskill

In what some folks have suggested as the result of both a disorganised mind and lack of focus I recently attended the Scottish Care conference and awards having forgotten to take my wallet. The sense of fiscal nakedness was both fearful and freeing. I discovered after 48 hours that I actually didn’t need cash or even a card. Now lest you suspect that I have delusions of being a cashless royal or a serial borrower from colleagues – I discovered that I was able to exist without either a card or cash. As long as I had my phone I could travel on the trains with downloaded tickets; and through Apple Pay was able to pay for everything I needed. It was a strange experience but one which clearly a whole generation are getting used to and comfortable with – but not all.

The shift to a cashless society is a particular challenge for older people and exposes them both to the heightened risks of exclusion and financial abuse. A RSA report in March suggests that as many as 10 million people in the UK are being left to struggle with their finances as we drift to cashlessness. ‘The Cash Census: Britains’s relationship with cash and digital payments’ indicates that 48% of the population say that a cashless society is personally problematic. The describe this group as ‘Cash dependents’  but there are other groups who they call ‘cashless sceptics’ with 12 million; ‘cashless keepers’ at 12 million; the ‘cashless occasionals’ at 9 million and finally the ‘cashless converts’ at 11 million.

Increased isolation, digital fraud and an inability to control finances and debt are cited in the report as points of concern. Undeniably Covid has resulted in a huge change in the use of cards and digital payments as too has been the loss of free to use cash machines.

All this is creating a world where those who are old are at very real risk of trying to survive in a cashless world but without the knowledge and skills, the confidence and assurance of knowing how to live in that world. I personally support the RSA call that legislation is necessary to ensure everyone has access to cash near to where they live. The report also argues that essential services such as council tax and utilities should not become entirely cashless.

All of this was in my mind when I had another brush with our digital world last week.

A few days after I had returned from London I got a text message from ‘NHS-UK’ and it read: ‘You have been near a person who contracted the new SARS-CoV-2. Please arrange a PCR kit now via: https://nhs-protect.care-uk-now.co.’ (I have altered the actual address.)

My first reaction was to think that I must have – with a sense of inevitability – picked up Covid again on the Tube, train or at a meeting. Then I began to think.

There is no NHS UK; there is no contact system operating now; how did they get my number because I hadn’t signed in anywhere. With caution I then went onto the website and saw a very believable homepage with links to other genuine NHS information. I was asked to input data and did so without revealing accurate information. To cut a long story short this was a sophisticated scam ostensibly to book a home delivered PCR and pay for the postage at 0.99 pence – by which time I would have put in bank details etc.

After further investigation I discovered this scam had been flagged as occurring across the UK.

My reason for mentioning all this is to illustrate just how easy it is to be convinced to do something which in essence is designed to scam or rip you off. Even with a degree of awareness and confidence as a citizen of our increasingly digital and cashless world I very nearly became the victim of a scam. The level of sophistication and ingenuity of those who would seek to hurt and harm us is scarily impressive.

Next Wednesday is World Elder Abuse Awareness Day (WEAAD) which since 2006 has been held on that day and is held under the auspices of the World Health Organization and the United Nations.

The purpose of WEAAD is to provide an opportunity for communities around the world to promote a better understanding of abuse and neglect of older persons by raising awareness of the cultural, social, economic and demographic processes affecting elder abuse and neglect.

According to the national elder abuse organisation Hourglass Scotland a 2020 poll showed there were over 225,000 older victims of abuse in Scotland. They also stated that:

• Only 10% of people in Scotland think of older adults (65+) when they think of victims of abuse. Nearly a quarter (24%) think of animals
• The Scottish public woefully underestimates the number of older people who experience abuse – not one person surveyed thought the number of UK victims reaches over 2.5m every year.
• Hansard recorded mentions of the abuse of older people 35 times in Parliament compared to 3603 mentions for domestic abuse, 746 mentions for child abuse and 915 mentions for fox hunting

The lack of societal appreciation of the reality of abuse and harm against older people, predominantly in their own home is shocking. Such lack of knowledge is a complicity in the harm too many women and men are experiencing in our communities. This is partly because the overwhelming number of those who hurt and harm our older citizens are people known to the person, even in terms of financial harm. The increased use of digital payments and cashlessness makes someone already at risk of harm even more at risk.

This coming Wednesday let us all think about whether or not someone known to us who is over 65 might be the victim of hurt, harm and abuse, and rather than crossing the road of indifference, let us stop and enquire, report and act. As we move into a new digital financial and cashless age let us all make sure safeguards are in place so that those already hidden do not become invisible, those already disadvantaged do not become forgotten, and those already victims do not suffer more.

Donald Macaskill

 

 

 

 

 

On Wednesday I chaired an open meeting for those interested in the role and value of day services for older people. During the virtual meeting I heard of some of the very real challenges facing services which in large part had stepped down during the pandemic and which have struggled to be re-introduced as things have improved. At that meeting Scottish Care has undertaken to do some more co-ordinated work on evidencing the benefit and the essential critical role of such services and we would hope to produce a short briefing paper in the near future.  In this blog I want to offer some personal reflections on why I think this Cinderella service needs to be more valued, appreciated and understood.

My first encounter with day services in a building-based sense was probably close to three decades ago. At that time, I came to the service where I was to spend a day with some very entrenched suppositions and stereotypes. The phrase ‘adult baby-sitting’ may have accurately described my views which were that these were places where people attended in order to be ‘looked after’ and ‘cared for’ in part to give their relatives and families a rest or respite. I could not have been more wrong. What I found through the doors was a place staffed by professional and skilled individuals and many volunteers which was a destination longed for and looked forward to by many of those who attended. It was a place where the conditions that individuals may have been living with were supported and in no small part alleviated. As one family member said to me, ‘By coming here John is able to meet friends, to socialise but much more importantly to be able through activities and stimulation to keep his brain going and to keep the dementia at bay.’ It was quite clear to me that far from places where people were placed to ‘rest and remain’ these day services were environments which allowed folks to live well, be fed well and nourished and which stretched and stimulated individuals.

I also became aware that in an era of acute loneliness and isolation that local community-based day centres offered an oasis of company, a place to be with others, to no longer be imprisoned by the crowding in of the four walls or to be controlled by the routine of the box in the corner.

That first encounter shattered my stereotypes and convinced me then as now that day services far from being incidental or marginal to social care provision, are essential services and supports that enable people to remain healthy, mentally, and physically; connected to others and which enable independent living in the truest sense of contribution and choice.

I am not alone in such an analysis. After a three-year research project from 2014-17 researchers showed the very clear benefits of day services for attenders, family carers and those who volunteered in such environments. Indeed, the study argued that there was a massive untapped potential for such environments to foster better preventative care and support, to enhance independence still further and to as a result contribute to significant fiscal savings by preventing early use of more intensive social care and health care to say nothing for how much better people who used day care centres felt and how they assisted them to remain healthy.

The benefits of socialisation, of appropriate care, granting respite to family carers, neurological stimulation, enhancing nutrition and health by activity and diet are all evident in day services. One focus of many is the enhanced value given to physical activity in its various forms around which there is mounting evidence that such physical activity can aid the prevention of neurological decline, but also results in a decreased risk of fall, improves cognitive function, improves sleep, and aids coronary health.

Day services need to come out of the shadow and be recognised as a critical arm of enabling effective social care to allow older citizens to flourish. Commissioners of such care and those who assess individuals need both to recognise the essential and substantial benefits of such models of support and need to stop immediately reducing provision based on a lack of evidence and a failed understanding of both personal and fiscal benefit. As the researchers quoted earlier noted:

‘There is a need to look beyond the obvious costs when commissioning or reviewing day centre provision; centres offer added value beyond social inclusion, care, stimulating activities and respite. Commissioning without fully understanding their outcomes contravenes evidence-based commissioning principles by relying on individual knowledge which may be based on assumptions or experience of different client groups.’

On the eve of Carers Week, I recall one of the earliest conversations I had with someone whose wife used a day service for older people. He said that the time and space allowed his wife to breathe, to be with friends and acquaintances, to be away from him in a manner which kept their loving alive and their togetherness solid. He also said that as a carer it allowed him to take a break and if he chose either to be with others or do his own thing – and to do so without guilt but in the knowledge she was supported, understood and well cared for. It kept him going in the love of care. She, meanwhile, said much the same. She felt that the environment of the centre allowed her to breathe and do and be who she wanted to be rather than be the object or subject of care and support.

I am deeply concerned at hearing this week of the threats to existing day care provision and am convinced that all must be done to ensure these essential services not only remain but flourish, thrive and develop. They are an untapped potential which can benefit so many more than they already do. Such breathing places deserve to be given the opportunity to enrich the lives of those who need them and not to be continually struggling for the breath of their own survival.

Donald Macaskill

Monday sees the start of the annual Dementia Awareness Week (DAW) and I have to confess that it is a week which brings to mind mixed emotions for me. Professionally it provides an annual opportunity to focus on the issues which are important to those who live with dementia, their families, carers, and advocates. It is an opportunity to in coordinated and collective ways to emphasise the major issues facing those living in Scotland with dementia. Indeed, this year’s theme is entitled ‘Let’s Prevent, Care, Cure dementia together’ and over the week there will be a series of events, including the Alzheimer Scotland Tea & Blether campaign which will run in many places across the country.

On a personal level it is a week which brings into sharp attention my own memories of those close to me, like my late mother, who lived her last few years with dementia, and all the struggles and emotion caused by that reality.

But it is in drawing from those memories that I and thousands of others around the country simply know deep inside ourselves that the way in which we offer dementia care and support in Scotland is simply inexcusable and unacceptable. And to be honest it is well past time for the blatant discriminatory treatment of dementia and those who live with it to be called out as a stain upon the fabric of our collective Scottish political, and policy landscape. To live in Scotland today with dementia is to be marginalised, diminished, and ignored.

Now I hear the counter accusation to that statement that I am engaging in emotional hyperbole but I’m sorry I really believe that it is an assertion that is truthful.

The truth of dementia in today’s Scotland is one of financial and resource discrimination. It is over 3 years since I sat in a room with others and heard the former First Minster Henry McLeish launch a robust and rigorous academic and practice report calling for urgent change in the support of those with advanced dementia. And yet just last week Mr McLeish was writing and talking about the failure to move more than a snails pace in progress towards meeting the urgent asks of three years ago. Countless hundreds have died of dementia in that time.

He stated that:

“On the best analysis we have around 10,000 Scots – they have family, friends and community affected by this – and they have an advanced stage of dementia. They are both living and dying.

“They have got to a point where all their important needs are health needs. But what is happening is that they are being looked at as having social care needs…If they were regarded as having health care needs, they would be treated as free at the point of need.

“People with advanced dementia living in care homes are paying an estimated £49m a year, plus people with advanced dementia receiving care at home are paying an estimated £1.9m – coming to £50.9m”,” he said.

“I would describe this situation in 2022, this issue of advanced dementia as a moral outrage which exposes a massive inequity at the heart of care policy in Scotland.”

He is absolutely right as are other advocates involved in the Alzheimer Scotland campaign.

The truth of dementia in today’s Scotland is of a diminishing focus and appetite for the radical and significant change that is required. This is plain and simply an issue of human rights. It is a blatant breach of both moral and legislative frameworks to treat one group of people in a population who have urgent health needs in a manner which is systemically and consistently less favourable or equal than another. There would be a huge popular outcry if we decided that a child who develops cancer should not be treated free at the point of care by the State but we are doing precisely that by refusing to recognise that someone in advanced neurological decline has primarily health needs and only secondarily social care requirements.

The treatment of people living with dementia because they are primarily older is riven with blatant age discrimination and a lack of political nerve, commitment and intention. Three years – even in a time of pandemic – is long enough to have heard solipsistic political statements – the time for action is now. And all the promises of a National Care Service, of healthcare frameworks, of new older person health strategies add up to not a jot but are rather straws in the wind in a system resistant to the radical redrawing of discriminatory practice.

Further as I have reflected here before – is the discriminatory treatment of dementia in Scotland not also illustrative of a gender bias? The relationship between gender and dementia is a complex one not least that between the menopause and dementia as Davina McCall has recently stated. But maybe I’m being naive when I wonder if the lack of political and societal prioritising of dementia given the majority living with the condition are women has not something also to do with inherent gender bias.

I had the real privilege for nearly five years of chairing a group under Scottish Government auspices which brought issues of dementia and care homes together. Despite all the pressures it brought together people with lived experience, self advocates, professionals and policy makers, clinicians and carers – all focussed on improving the quality of care and support. I recently stood down from that role and upon reflection it is a regret that we had not made the real advances we had hoped for. In reflective moments I wonder why. It was not because of the lack of desire or vision, passion or energy. Something else in the system was and is resistant to real significant change.

After one of those meetings I was speaking with someone who cared for and supported his wife in her latter stages of dementia. It is a living loss too many know of every day. To see in front of you someone you love slowly lose a grip on meaning and memory, on function and action brings a unique ache and pain. He spoke to me of how he could determine how his wife was by simply looking into her eyes. Eyes that had once sparkled with fun and vitality as together they fell in love, brought up their children and lived out their loving. Eyes that had been filled with mischief and mystery, complexity and compassion. Those same eyes were now frightened and fearful, confused and anxious. He spoke about her watching into the distance and at a space beyond his reaching or reassurance and how when she came back from her wandering inside her head she always returned without a story but somehow diminished in her self. For him the hardest thing was looking into those eyes.

It is well past time for us as a whole society, not least our political leadership to look into the eyes of those who live with dementia and their carers, and tell a truth and a determination of ending discriminatory treatment, of restoring dignity and renewing human rights. Empty and vapid rhetoric should be put aside – we have all had enough of the snail pace of change when lives are diminishing all around us.

How many more dementia awareness weeks do we need to have before awareness and promise gives way to change and equality?

Donald Macaskill

 

 

The following blog is adapted from an address given to the Scottish Care Nursing event ‘I feel, I see, I imagine’ on the International Day of the Nurse ten days ago.

First of all, I want to say that I am both honoured and delighted to be asked to open this day full as it is with such interesting contributions and sessions and also the launch of a research report which having read it is an amazing piece of work. It encapsulates the real authentic voice of frontline experts – who are the nurses who work in social care.

Today I hardly need to tell you is the International Day of the Nurse which is held on an annual basis on the birthday of the inspired and inspirational Florence Nightingale who despite historical revisionism and relativism still remains a significant originator and pioneer of the nursing profession today.

Every year the International Council of Nurses announces the theme of the day which this year is ‘Nurses: A Voice to Lead – Invest in nursing and respect rights to secure global health.’

It is a day which the ICN asks us to focus on the need to protect, support and invest in the nursing profession to strengthen health systems around the world.

In today’s brief remarks as I open this event, I want to take and explore the same theme – the need to listen to social care nursing as a leadership voice.

Sounds simple enough – the requirement to listen to the authentic voice of nurses as we seek to embed rights and dignity in our health systems.

But immediately we are faced with the reality that often those who make the strategic decisions in our health and social care systems are not that good at listening to the voice of nurses – full stop. Some of you might say it is aye been like this.

And even if health and care system leaders do listen to nurses it would appear they are not that good at listening to the distinctive voice of social care nursing. And even less effective at letting that voice lead.

There is of course a world of a difference between listening and actually hearing what is being said. Indeed, there are some classic barriers to effective listening which anyone who has undertaken a basic course in counselling will be all too familiar with.

I want to reflect on some of them – in fact four of them – in part to try to explain why the voice of frontline social care nursing seems to be being ignored in some quarters … and because it might say something about nursing on a day when we are asked to listen to the authentic voice of frontline nurses.

We know that one classic barrier which stops people really hearing what is being said and what is happening is what is called assumptive listening – that is when listening to another we make assumptions about the speaker’s meaning or intention—and usually before the speaker has finished.

It’s the one which I suspect many of us who have been parents have perhaps fallen foul of – presuming knowledge of what you are going to be told and then finishing the sentence of your child especially if they are struggling or taking a time to say it. After all we are the parent, we know what it is they are going to say! Don’t we?

Sound familiar? There is a dangerous and presumptive arrogance might I suggest in assuming you know what another health or social care professional does in their role or what they want to say; or what they need from you.

Yet is that not what has sadly been the experience of too many tuning into this event? What may have had started from the best original motivation –  to support a stressed sector – namely the creation of oversight responsibility for Directors of Nursing – reactively and politically introduced by the former Cabinet Secretary – has in some parts of the country turned into a process which is causing untold damage to the inter-disciplinary partnerships and multi-disciplinary work between care home and primary care colleagues.

To treat professionals of considerable expertise in a manner which has demeaned and diminished their professionalism, has marginalised their skill base and called into question their integrity and autonomy has been and continues in some parts of Scotland to be hugely damaging. It is most certainly not letting the authentic voice of social care nursing to lead which is today’s task and invitation.

I believe and have argued this for some time – but then again, my pleas and those of others have fallen on deaf ears – that we have to urgently address these self-inflicted wounds as a whole system or the damage done will be irreparable and the loss of significant senior nursing leadership in social care will be irreplaceable. We can and must do so much better.

A second failing in the ability to listen to social care nursing voices comes from what psychologists describe as self-protective listening.

Here, the listener is so wrapped up in their own situation and/or emotional response to it that they simply have no brain-space to hear or concentrate on anything else. Undeniably the last two years in particular have been exceptionally stressful for frontline nursing staff in our care homes – but we recognise that this has also been the case in the community and in our acute sectors. We have all been under immense pressure – and demands have been disproportionate and sometimes overwhelming. In such a stressful environment, relationships almost inevitably can become frayed and fractured; a word is misinterpreted, a tone of voice misunderstood and damage to pre-existing relationships can result.

I would like to think that moving on we can as a collective in health and social care be open about our mutual tendency to self-protect ourselves, colleagues, and organisations. It is only then that we can move forward. But I do not think we are in that place at the moment.

Partly that is because there is a lack of being able – or even willing – to walk in the footsteps of those whose world is different from our own. We are all guilty of the barrier of seeking to protect our self and our own – especially understandable in a crisis context. But now it is imperative that we work together to ensure that we can create environments, spaces and places where we are enabled to really hear the other –because the creation of and reality of disrespect necessitates the fostering of trust.Part of that trust also needs to acknowledge yet another barrier to effectively listening to the voice of frontline social care nursing – and that is judgmental listening.

Often someone who is judgemental is someone who only listens to the surface of what another says, or who only listens to the bits that they want to hear. It is often a barrier which is rooted in preconceived ideas, or inherited beliefs and presumptions.

And let us be honest long before Covid appeared as the nightmare in our lives that it was and is, the ability of others in the wider nursing and healthcare system to listen without judgement to the voice, contribution and role of social care nursing was missing in action.

I well remember taking part in the initial Voices from the Nursing Frontline research shortly after I started this job and sitting with a talented and experienced care home nurse manager. After a while she welled up in tears reciting how devalued and marginalised, she had been made to feel by former NHS colleagues who saw her role as being limited, of little clinical skill and of in her words ‘babysitting the elderly.’ An otherwise strong person felt that the whole basis of her career choices, her love of dementia nursing, her passion for care, which was more than just transactional, had been pulled like a carpet from under her feet.

We have a long mile to go before we reach the destination where the specialism, the uniqueness, the glory and the astonishing mosaic of skills that social care nursing offers are fully respected, recognised and valued. We need to end the blatant discrimination and stigma that exists – and that is still happening at pre-registration stage, through academia, in clinical practice and in nursing governance and regulation.

If people are not heard they shut down, they find their own silence, and they end up not communicating, and that does huge personal damage to the individual but equally important it does damage to the whole nursing community and profession.

But perhaps the most challenging form of listening that social care nurses have spoken to me about as a barrier – is our fourth and last and is what is termed defensive listening.

This is when someone takes everything you say as a personal challenge and feels that they need to defend themselves or others, or the system, or the government and so on. This effectively shuts down communication and turns dialogue into a tennis match where each point made is batted back by a ‘but’ ‘or ‘we feel the same’ or ‘it happens like that in the NHS’ etc. It is a view and response which leaves no room for challenge, for exploring points of view different from your own. It silences contribution and it puts the listener in control rather than requiring her to be attentive.

To conclude these comments on listening I believe that if we are to be open to allowing the voice of social care nursing to lead, we first have to acknowledge that as a whole system we have failed to listen, to be open and to hear.

If we do that then I think we start to move on and re-build and restore trust, respect and mutuality. But it requires work and resource, focus and determination – it will not just happen by accident.

And If we create such a space and place for frontline social care nursing to be truly heard then I very much feel that what that professional group of social care nurses might say to us will change the whole of the nursing community.

Some of that voice is beautifully and brilliantly articulated in the work which has been published today which shows authenticity, richness and depth – and I leave it to you to read and enjoy.

But I want to share some concluding personal thoughts about why I think if we listen to social care nursing, we will hear a story of unique distinctiveness worth listening to.

The first thing is that to celebrate social care nursing we need to start emphasising the distinctiveness of what is social in that phrase. In too many instances we use the phrase social in a diminished and dismissive manner. But we should be proud that this is not healthcare nursing in a traditional acute sector or even community nursing sense – we need to explore and voice the distinctive dimensions of what social  nursing means.

For me the thing that needs to be most celebrated is the relational dimension within social care nursing– not just the fact that the nurse has time and opportunity to build relationships with the resident, family and others – but that the whole dynamic of person-to person nursing changes BECAUSE of the fact that this is social care nursing.

Add to that the fact that social care nursing is about enabling the person to remain connected, involved, and meaningful in their family and community. It is about enabling the person to better self-manage, to direct their care and support…expressed so well in terms of dementia and palliative and end of life care support. The social care nurse becomes the co-enabler of care, even in moments of extremis and at end of life the individual remains in control.

It is about addressing not just the clinical, physical and psychological needs of the individual in discrete terms but to attend to the whole person in a holistic manner which is rarely possible and seldom achieved within a purely clinical setting or attention.

I am not going too far when I suggest that nursing professionals from other disciplines would learn a lot from the nature of social care nursing and its unique dynamics.

And I could go on – but the social dimension is not about drinking cups of tea and coffee and eating cakes – though not to dismiss that dimension of alongsideness – it is much much more, it is the essence of human relating, alongside and companionship – which correct me if I am wrong were three critical elements for one Florence Nightingale.

My second and final reflection is to share with you that earlier this week I was privileged to visit Queens University in Belfast and to spend time with Dr Anita Mallon and Professor Christine Brown Wilson both from the School of Nursing.

They have spent time working with care home nursing and care staff in general over the last period to develop a phenomenally good resource based on the theme of resilience. I am looking forward to its final publication because it shows authentically the uniqueness of the amazing women and men, we all know who work in care homes not just in Scotland and Northern Ireland but in so many aged care facilities across the world.

I was asked in interview to reflect on the word resilience and what it means for social care nursing given the last couple of years. And I had to confess a personal discomfort with the term.

Resilience in a technical sense is described as

the process of adapting well in the face of adversity, trauma, tragedy, threats, or significant sources of stress—such as family and relationship problems, serious health problems, or workplace and financial stressors.  (American Psychological Association 2012)

And my goodness we have needed resilience in care home and social care nursing over the last wee while

The reason I am not always comfortable with the idea of resilience is that sometimes it can suggest that you respond to challenge by bouncing back to the way you were, that you return to the shape you were, return to the status quo.

But that’s not what we need – we need rather a recovery and a reshaping. We cannot and must not go back to the way care home nursing was treated before the pandemic and absolutely certainly not to the way in which care home nursing is being treated now. The social care nursing sector has been to hell and back during the pandemic – we must now move forward with strength and voice. We need to shout from the rooftops how critical social care nursing is and that we will not be silent.

Moving forward the task of all of us is to reshape and recover the essence of good care home nursing and more widely social care nursing.

That essence, that shape, has been strained and stretched but has rarely been broken – and in that sense it has been and will always be resilient.

It Is an essence for me which puts relationship with all the contradictory dynamics of relationship nursing at the heart of all that is done.

But we need to invest as the International Council of Nurses has said

We need to

Invest respect

Invest trust

Invest time

Invest resource

Invest knowledge

Invest autonomy

 

If we do so as individuals and as a whole health and social care system, we will make ourselves open to hear what is being said and by doing so that which we hear from the authentic voices of social care nurses will lead us on.

We will hear that the ability to foster, continue, embed, and improve human relationships are intrinsic to excellent nurse leadership wherever that is exercised.

I leave you with the words of the inspiration of this day. In a letter to her lifelong friend Mary Clark, who was certainly the person who inspired her to break away from the shackles of the societal conventions of the time, Florence Nightingale wrote in 1844:

“I think one’s feelings waste themselves in words; they ought all to be distilled into actions, and into actions which bring results.”

It is time not to waste any more words … it is time having listened to act.

Donald Macaskill

This week’s blog post is the text which formed part of the address I gave yesterday at the 2022 Care at Home & Housing Support Conference. This event titled ‘Home is best: the critical role of homecare and housing support’ is the first homecare conference that Scottish Care has held in-person in 3 years.

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The last three years have been some of the most trying and challenging that many of us have lived through and that is perhaps even more the case for the care at home and housing support sector and its workforce.

When I started to think of the last three years since we met in conference my reflections were inevitably dominated by the Covid pandemic and how the sector responded – but also more recently about how the sector is facing and enduring some of the most significant workforce and survival concerns any of us have ever experienced

In thinking of all that and what has happened the image that came to mind – is of a sector in the shadows – most of the time ,a shadow existence not of our own making but created by the actions of others – because care at home and housing support has been a sector that has been frequently marginalised and forgotten, bounded by the presumption and ignorance of those who thought they knew what they were talking about but simply failed to ask those who really did know better. It has been the tale of a sector and workforce which was largely ignored and not included. So, it has felt and still feels as if homecare is a sector put into the shadows.

Well, it is very much time to come out of those shadows and into the daylight.

It is certainly time for us to stop talking about the potential of homecare and to start putting our aspirations into practice through determined action and focus and to create a future that must be different. It is long since past time for us all to really live out the practical and realistic hopes we have for the sector and which we have articulated for so long. It is time to come out from the shadows and to start to shape that tomorrow with our own hands because no one else is going to do it for us.

But before you know where you are going – it is often wise to reflect on where you have been and what you have experienced.

And the last two years have been a time of shadows, not ones of our own making but an existence created by the actions and the response of others.

There has been the shadow of frontline workers not being noticed.

In May 2020 I wrote a blog entitled the ‘forgotten frontline’ in which I described the way in which the pandemic response had to that time largely ignored the vital and valuable role of the homecare workforce.

These are the women and men who we saw in our streets as regular as clockwork despite all the fears and challenges of an unknown virus. It is they who got out of bed in the morning and walked out of the secure place of their own home and into a community silent with the absence of normality. It is they who worried about taking the virus home to their families yet still in discipline and professional dedication used their energies to overcome fear, their commitment to the care of others to supplant anxiety, and who rolled up their sleeves and did the job which is no ordinary one but one of compassion and dignity.

These are the truly unsung heroes of the pandemic whose pattern of work was interrupted by rule and regulation, who drove in separate cars so as not to spread the virus by sharing, who walked miles because the buses were not running, who put on their PPE despite time not being allocated for the task, and who knocked the doors of clients and brought life, love, connection and company to the tens of thousands of women and men whose independence and wellbeing is dependent upon the work of homecare.

They were the forgotten frontline. The devastating impact of the virus on residential and nursing homes and the acute loss of life rightly gained public, political and media attention and focus. But we so easily forgot the impact of the virus on the lives of those who were supported in their own homes and on those who cared for and supported them.We certainly forgot them when we started to clap for carers, and we went on forgetting them every time a frontline homecare worker was turned away from a priority queue in a supermarket or denied access because they did not have the right badge – because they were not from the NHS. Memories of such limitation and rejection fade slowly from recall.

Our frontline homecare staff were put into the shadows.

So too were the thousands of women and men who had their packages of care support limited and removed, some with the minimum amount of notice and many without real explanation. Family and friend, neighbour and acquaintance stepped up to the plate as individuals and communities really did care and support in those early pandemic days.

But it is to our shame that as a society we thought it both desirable and a priority to diminish the little contact, remove the essential care and support on which so many individuals depended. They were the out of sight ones whose invisibility became even more pronounced and detached from our perception. They were the users of services which evaporated as the demand to protect the NHS overrode all other strategy or approach. It was they who living with dementia and its confusion received out of the blue phone calls about DNACPR forms, who found it impossible to get primary care services, whose loved ones were exhausted in the task of caring- and who was there? With the regularity of commitment?  frontline homecare staff at least where their contracts had not been cancelled.

I do not think we will ever know the psychological and physical impact on those who receive care at home and housing support, brought about by the removal of care packages, the loss of contact and company, the disappearance of homecare staff in some instances virtually overnight.

But what we do know are the statistics which show the huge increase in the number of deaths in our communities; we know the profound strain and stress, breakdown and fatigue faced by family and unpaid carers; and we know now that there needs to be a serious assessment of the decisions to remove care in a manner which has had such a profound impact on so many.

And so those who used homecare support were put into a place of shadow by a lack of priority, importance, and value.

But the placing of the sector into a place of shadow went on – maybe this was especially seen in the conflicting and confusing guidance which failed to appear for such a long time, that is the guidance we wanted and asked for – not adaptations, not edits – but a guidance that spoke directly to the practical needs of homecare services.

I am recalling times when we had to try to educate decision makers about the reality of a workforce going in and out of folks’ homes, of the need to have clear guidance on mask wearing in houses, of making sure that there was an adequacy of supply of PPE (for a shift maybe involving as many as a dozen separate homes) and the right PPE.

And then came the battles over testing – the arguments about how important it was that we made it easier for frontline homecare staff to be tested – that they should be seen as a priority workforce – and we should never have needed to voice that sentiment – that at times and in places of high community transmission the dangers to them and those they supported were huge.

The ignorance at strategic level about the nature of homecare was stark – and in some instances remains so.

And the shadow kept getting darker – and the vaccination roll out came – the life saver and the turner of the tide – it was right that vaccinations were prioritised for care home and hospital staff, for residents and patients – and for those over a certain age and with vulnerabilities in their own home. But the serious lack of focus on the critical importance of vaccinating homecare staff beyond the first vaccination should be reckoned as an error and a mistake. Access far from being made easy became a struggle and countless hours were wasted by organisations and staff trying and failing to get appointments or having to queue for ages along with the general public – when they should have been a targeted priority much earlier.

And the shadows went on and on well into and beyond our initial first and second waves. The prioritisation of the NHS and especially the obsessive focus on the issue of delayed discharge singularly failed to address the systemic crisis facing a legion of homecare providers.

A ‘lets throw money’ at the problem response devoid of systemic understanding and an awareness of the critical role of homecare as both a preventative and rehabilitative service has only served to exacerbate the decline and departure of so many organisations from the homecare sector in the last few months.

The lack of real fiscal understanding of the realities of the sector has made the shadow even worse. We applauded the increase in frontline salaries for care staff – but why was it handled and managed in such a cack-handed manner? – why did it take months for commissioners and funders to get the mid-year uplift right and even today dozens of providers across Scotland are still unaware of the contract levels they will receive to enable payment to a critical frontline workforce?

The fiscal response of Government to the homecare sector has lacked maturity and depth and has perversely caused destabilisation rather than embedded stability. There is little point in saying to a frontline worker you are now going to get paid £10.50 an hour if the actions taken by local and national government elsewhere – or to be more precise the inaction taken – results in your employer going out of business.

And still the shadows deepen – we have had a disease of more and more care packages being cut or streamlined, pushing people to the point of despair; we have witnessed an obscene increase in the number of 15-minute visits – visits which fragment dignity into time and task slots thus demeaning our humanity and which embed a damaging transactional approach.

Then throughout there has been the shadow of presuming that providers could just switch on provision – all in an attempt to address the Holy Cow of delayed discharge and the threats of the winter just past – but all without any real understanding of the sector – almost as if they thought that there was a standby workforce waiting in the wings to step up to the plate.  Come on!

And all the time the dedicated frontline workforce has become more and more exhausted, stretched beyond breaking point, covering shifts for colleagues swept away by Omicron, trying to keep services going in the face of unparalleled staff absence and sickness.

And all the time the shadow of staff leaving to go to other sectors where they are not judged and regulated, where they receive value and welcome – continues – and no glitzy TV campaign is going to address the fundamental lack of value we have failed to bestow on frontline staff and the homecare organisations who employ them.

And then in recent weeks we have had the shadow of fuel costs spiralling out of control so that staff have told managers that they simply cannot afford to drive to work or cannot afford to drive in their work; and the shadow of the impact of a cost-of-living crisis taking us back to the seventies, and of growing anxiety and fear as we look into the autumn.

Homecare has been and is in the shadows – NOW is the time to come out of them, to stop accepting being done to, to be telt by those who know not of what they speak, and to start stoutly and loudly advocating for what can and must be different, what can and must be changed, what can and will be achieved.

Some of you might be sitting there thinking what’s he worrying about we have the National Care Service just round the corner – when all our ills will be rolled up into solution, when we will have plenty a person to work in homecare, when there will be real financial valuing and fiscal maturity to deliver a world leading social care sector.

Well excuse me despite the political crystal ball gazing and the hype, reality is rooted in the now and we need to act with speed, or we simply won’t have a care sector left by the time of the glorious new dawn. We cannot remain in the shadows much longer or our life blood will grow cold.

The world of care at home and housing support has so much to offer for a new way of being and caring, a more dynamic approach to support and an enlivening of our citizenry.

I think there are several aspects of a sector no longer in the shadows.

The first relates to a re-discovery and a passionate articulation of what it is that we do because I am sick of so many people thinking that homecare is just about ‘home helping’ – a throwback to the eighties in the perceptions even of those who make decisions.

We need to re-discover the social at the heart of the definition of social care. Social care is NOT the same as healthcare and we need to be much stronger at articulating what makes it unique, different and worth investing in for all our communities.

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 support service that enables life to be lived to its fullest.

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

The problem is that what we have ended up for various reasons with what is a maintenance approach to care – maintain people where they are, as they are, make sure we do not need to draw on precious NHS resources – but that is a total failure to see the potential of homecare which enables people to live lives to the full, to be active citizens and to have their voice count and matter.

So Feeley and his review was spot on when he emphasises the importance of a preventative approach to support and care that allows people to be independent for longer.

But preventative approaches which vest autonomy and choice with the citizen do not just happen – they are not accidental occurrences – they must be invested in up-stream and with co-ordinated determination. That is what has been singularly missing, not least in the failure of the self-directed support legislation when it applies to older adults in particular. SDS has become tokenistic choice and a pretence at involvement and empowerment.

Secondly a homecare sector which comes out of the shadows must be one that has the valuing of the workforce at its core – running through all things like a stick of rock.

Valuing comes undeniably with increases in take-home pay; but it is also in having terms and conditions which reflect priority and parity – like sickness benefit and death in service benefits which are fit for purpose and attractive. It also means paying staff for the whole of their time, for travel most critically. It means an end to paying workers through mechanisms which make them feel as if they are clocking in like badly behaved children ticking the school register in the morning. Can you imagine a nurse or a doctor being electronically call monitored? – then why is it okay for social care frontline staff?

But critically it means respect which values professionalism, which allows the worker to flourish and improve, learn, and develop.

And lastly in terms of the workforce we need urgently to move to an autonomous workforce – where the individual can work with the supported person to determine appropriateness of service and delivery, mapping work and time to the needs of the person not the strictures of the system. Let the worker breathe. Trust her – empower her – there is nothing more likely to create change than a person allowed to take control. So let us give a case-load to our staff and start to bestow professional trust on these individuals.

And for all this to happen, we need the homecare sector to come out of the shadows of mistrust, suspicion, contract compliance and into a dynamic new relationship of trust and transparency, shared management, and mutual integrity.

Thirdly, homecare has to put relationship building and formation at its core. It’s all about relationship, relationship, relationship stupid!

Preventative support, an empowered consistent workforce, the ability to detect and monitor changes in the supported person; the addressing of mental health issues, of isolation and grief – are all founded upon the need for relationship. It is impossible to form meaningful care and support relationships which enhance the dignity of the individual who needs services in a task-oriented approach.

So let us call it out and refuse to be complicit in a system that has effectively become the contracting of compassion slots instead of the enabling of dignity moments, that has crowded out conversation through a stress on contract compliance.

Fourthly it is time to build on what we know from the pandemic that has really worked.

I am thinking of the astonishingly positive use of in-home treatments for Covid and more – what has loosely come to be termed ‘Hospital at home’ – but it should not just be hospital but care at home – the home is too important to leave to the NHS alone!

There is a real potential if we work together for solid multi-disciplinary team working around the person with a mix of secondary, primary, and social care – so let us get on with it and turn the home into a sanctuary of independence where care comes to you rather than unnecessary and expensive hospitalisation and withdrawal from community and connectedness. Social care – home care – the clue is in the word – has a massive role to play in that dynamic process. Let us make the home the place of health and the centre of social care

Fifthly and lastly there is massive untapped potential to use technology and digital innovation to reshape the way we deliver homecare. This is already happening – it is not tomorrow’s world but today’s possibility. I do not mean the gizmos and the gadgets of the designer still at school – I mean the tech and gear you and I use every day which litters so many of our homes and with which most people regardless of age have become familiar and comfortable.

George Crooks will doubtless say a lot more. But in all this more than anything else there is the possibility of making care more person-led, more individual-centric, more likely to foster control and nurture autonomy – that is if we use technology to enable choice and individuality rather than to limit, cost save, remove privacy, control and diminish capacity. For that to happen a robust human rights and ethical modelling and set of principles must be in place.

There is so much more that could be said about the potential of homecare – but one thing I am clear of after the pain and absence of the last three years is that it needs to happen now, with people who matter most, those who use services, with those who work, and those who employ – a future out of the shadows created by those who live in the real world not policy heaven or political utopia.

For all this to happen – for homecare to come out of the shadows and fully into the light – we need not just the people in this room but political leadership at national and local level – to work with the sector to achieve the aspirations I believe we all broadly hold in common.

That working together means creating full engagement and involvement with the independent care sector. It means elevating social care as a whole and cutting us from the perceived umbilical cord to the NHS – you will never solve the crisis of the NHS by ignoring the crisis in social care – the symbiotic relationship of the two demands a mutuality of equality and treatment which recognises that.

But it also means being realistic and honest about how much radical reform requires adequacy of resource. An ethical commissioning system which goes beyond a sound bite.

It is time to cast off the shadows both those imposed and self-limiting, to walk out of a past which has failed to put social care at the heart of our communities, to start to create our homes as places of care, wellbeing, connection and independence, to walk away from models which have put systems before people, reaction before prevention, and clinical care before social care.

There is so much potential, but it can only be achieved in the sunlight of a realistic day not the shadows we have been placed in. It is time to start breathing a new air. It is time for a new future.

Today is World Labyrinth Day. I first came across labyrinths when I was at university and participated in a day of reflection as part of UN Peace Day. Since then, I have always been fascinated both by their ancient history and their contemporary usage. Indeed, in many senses labyrinths are having something of a resurgence and renewal none more so than in the world of palliative and end of life care.

For those not familiar with labyrinths the Labyrinth Society describes them thus:

‘Labyrinths are an ancient archetype dating back 4,000 years or more. They are used symbolically, as a walking meditation, choreographed dance, or site of rituals and ceremony, among other things. Labyrinths are tools for personal, psychological, and spiritual transformation. They evoke metaphor, sacred geometry, spiritual pilgrimage, religious practice, mindfulness, environmental art, and community building.’

The ‘labyrinth effect’ is described by John Rhodes as:

‘It appears that walking or otherwise interacting with the labyrinth might enable a set of physical responses (increased calm, quiet, and relaxation; decreased agitation, anxiety, and stress) that allows for the emergence of a set of “state of mind” responses (increased levels of centeredness, clarity, openness, peace, and reflection). In turn, these “state of mind” responses might increase one’s receptivity to flashes of intuition, hunches, nudges from one’s “inner voice,” and other types of insight regarding one’s problems, issues or concerns.’ [1]

And so in gardens and beaches, in forest clearings and community settings, in places of memorial and city gardens and as I noted above in hospices and some care homes you are likely to come across labyrinths in all shapes, sizes, materials and forms.

I was reminded of the labyrinth as a physical and metaphorical form after I had delivered a talk about the role of social care in palliative and end of life care.

Social care whether in care home or in one’s own home is often forgotten about when we consider end of life care yet in truth most of us would if all else was equal chose to die in our own home or in a homely setting. Enabling that to happen has surely to be one of the key priorities of the Scottish Government consultation and engagement exercise to create a new Palliative and End of Life Care Strategy which is currently being consulted upon.

The critical role of care homes and homecare in delivering quality, person-led and dignified end of life care cannot be under-estimated and was affirmed in the Scottish Care report, ‘The Trees that behind in the wind’ published some 6 years ago now.

At the event last week, I shared an insight which a frontline nurse gave me as she tried to describe her role in end-of-life care in a care home. She wrote to me during the pandemic and when I asked her how she saw her role especially in these times she said that she was ‘an in-between worker.’ She went on to say that she was very aware that she was not the person undertaking the journey of dying or coming to terms with the end of life but was the companion along that way for an individual as they took these steps forward. She was the presence in between absence and busyness; between silence and doing; questioning and content; pain and rest. She saw her role as especially valuable to those who were wracked by dementia and whose ability to associate with others or to remember events and occurrences had become so limited, for whom distress was too frequent a companion.

For many people who receive social care in later life and especially those living with advanced dementia wherever they are supported it is these in between moments which can become times of potential comfort and solace, the occasions when we drop our activity into simply being, yet for many that is also a time of real anxiety, aloneness, and fear. Presence is intrinsic to comfort, support essential for solace. In between times are the hardest ones but can also be the most fruitful.

That nurse also spoke to me of the way in which physically she gave comfort, assured presence, answered anxiety by walking with residents. She found a solidity, a sense of direction and purpose in walking and movement even with those who were very frail.

When I was in Canada some time ago, I came across a care home which used a labyrinth as a space for personal and individual reflection but also as a place for a guided exploration of the issues facing a person as they journeyed at the end of life.

I have seen labyrinths used to support the journey of those who are close to death. As we move and walk to its centre it allows us to reflect, to be, to ponder and to simply breathe. The labyrinth allows us to walk to the heart of our being, to prepare for any outcome, to be open to discover who we are  even in the last moments of breath, which in essence is what I think good accompanying end of life care is all about. Unlike mazes labyrinths have no wrong turns and no missteps, but rather all steps are of purpose and value; all experiences can enrich and mould us.

Life is often described in many cultures and philosophies as a journey. We recitnise and celebrate the first faltering steps of our toddler years, we reflect on the journeys of our adulthood and middle age, and then these are replaced by stepping into the unfamiliarity of age and the end of living. A journey can be both physical and psychological.

Whether a labyrinth is marked on a beach or in our own garden, is created in a formal setting or not, or is simply one of the imagination inside our head, on a bit of paper or in the touch of a hand, I think there is strength in finding and creating spaces and places that allow us to detach ourselves from the ordinariness and mundanity of the moment and to reflect, consider and ponder. At times of real challenge, the necessity and value of such spaces becomes all the more significant and heightened.

A journey is always achieved by single steps and as we move closer to death, we engage in that most personal and individual of all journeys. Great palliative and end of life care wherever it is offered enables an individual to undertake their own journey, at their own pace, in their own direction, both inwards and outwards.

Great poets can take us into their own labyrinths where steps bring us closer to understanding and truth in subtle ways. As the seasons change and the air starts to fill with the invitation of lawnmowers, I cannot but reflect on the wisdom of Philip Larkin’s poetry around death and dying, and I leave you with ‘The Mower’ :

The mower stalled, twice; kneeling, I found

A hedgehog jammed up against the blades,

Killed. It had been in the long grass.

 

I had seen it before, and even fed it, once.

Now I had mauled its unobtrusive world

Unmendably. Burial was no help:

 

Next morning I got up and it did not.

The first day after a death, the new absence

Is always the same; we should be careful

 

Of each other, we should be kind

While there is still time.

 

Philip Larkin, “The Mower” from Collected Poems. Copyright © Estate of Philip Larkin.

https://www.poetryfoundation.org/poems/48423/the-mower-56d229a740294

 

Donald Macaskill

 

 

 

[1] Rhodes, John W. “Commonly Reported Effects of Labyrinth Walking.” Labyrinth Pathways, 2nd Edition, July 2008, pp. 31–37.

I have literally been all over the place in the week that has just passed. It started with me joining colleagues in Ireland and hearing from the Irish Minister for Older People and Health about their pandemic experience in care homes and in the community as part of the Five Nations Care Forum. Also, at that Forum the delegates from various national care associations were able to share reports on what was happening in their jurisdictions and to talk about what were the challenges they were experiencing. Then on Wednesday I had the very real privilege of attending ‘Devoted and Disgruntled’ which was an Open Space event which brought together some 60 or so frontline carers, managers and others to share their insights on the present and future realities facing social care in Scotland from the perspective of the frontline worker. It was an inspiring day with great conversation, a sharing of ideas, support on emotional issues and a real and tangible sense of determination that the voice of social care needed to be heard in the din and noise of debate.

Throughout the week therefore issues to do with the frontline workforce have been uppermost in my mind. Chief amongst those has been the sense in which it feels that we are on a burning platform at the moment. As our politicians look into their telescopes to spy the glorious new land on the horizon called the National Care Service those working on the ground feel we are at a point of collapse and disintegration. Never mind the dream you are saying let’s deal with the real world. Nowhere is that disconnect between reality and the challenges being faced today in social care and a desire for future reform and new beginning more starkly visible than in the manifestoes of our political parties.

Just in case like so many in the general population you had failed to notice we have an election on Thursday coming (5^th), I had hoped that given the trauma facing social care not least as a result of latest waves, massive cost of living increases,  experienced staff leaving the sector because of emotional trauma and lack of value, levels of absence and sickness the like of which most of us have never seen, real recruitment and retention issues, huge increases in fuel stopping people going to work, and energy rises which are crippling care homes especially in rural areas  – given all that, that the present realities of social care would be front and central in all the debates we are hearing. But instead, deafening silence or at least whispers – so I have had a look on your behalf at what the parties are saying about social care, and most directly, the crisis that the whole social care system is enduring at this time.

Don’t hold your breath – because they are not saying much at all.  Or should I say they are saying a lot but without real costing, analysis, or grounding. I have put links so you can read them yourself but a brief summary:

The SNP Manifesto not surprisingly goes big on the National Care Service, underlining previous commitments to ensuring people who use services are at the heart of re-design, articulates that local accountability will still happen and that SNP councillors will be closely involved. It recognises the contribution and value of both paid and unpaid carers during the pandemic and the need to ensure enhanced pay and conditions. See SNP Local Elections Manifesto 2022 by HinksBrandwise – Issuu

The Scottish Conservatives argue for a local health and social care service with a sharp critique of what they see as centralisation of services. They talk about creating a Local Care Service, ending out of area placements, ethical commissioning, investment in staff and applying funding to frontline delivery. They also mention the need to re-focus on choice through Self-directed Support.  See Back to Normality (scottishconservatives.com)

The Scottish Greens emphasise supporting social  care staff to make sustainable travel choices, call for frontline carers to receive £15 an hour, that workers are paid for travel between jobs and fair work practices become embedded. They also talk of local delivery and valuing care staff as well as unpaid carers. See Manifesto LE2022 WEB.pdf (greens.scot)

Scottish Labour affirms that good quality care is crucial to our wellbeing (though disappointingly it characterises one of the roles of social care as alleviating pressure on the NHS). An emphasis on people being able to live life to the full potential sits alongside a statement that this will need more than a name change or structural reform.  It states, ‘It is time that we treat health and care like one system.’ The Manifesto calls for a £15 an hour minimum for carers; collective bargaining and regulator registration for workers to be paid for by Government not the worker. It argues for free residential care for the over 65s; an end to care charging; a national unpaid carers strategy, increased public provision and an end to marketisation of care. See  LocalGovManifesto2022.pdf (scottishlabour.org.uk)

A quick read of the manifestoes shows some real commonality and shared emphasis – on fair work, on proper remuneration, on giving choice and maintaining local influence etc. But for those of us who are somewhat long in the tooth in terms of our social care aspirations – have we not heard so much of this before? I am not at all convinced that given local authorities are the primary commissioners of social care that in these diverse manifestoes we are witnessing the level of ambition, practical resolve and real innovation needed to deal with the current crisis never mind crate a vibrant, visionary social care system for the future. And that is said with the deepest of respect for the motivation and commitment of so many in our political parties.

The conversations I have held and heard in the last week across nations and communities tell me a story of people who use and work in social care who are tired of platitudinal promises and lofty aspirations, they want change, and they want it yesterday not in some distant utopian dream-state. We need to radically change the way we prioritise social care and we start that by recognising its massive economic and societal contribution to our communities. I do not get the sense of that value in any of these documents rather it is a set of bland promises without root in reality.  The sheer lack of proper fiscal allocation or any analysis of the true resource gap between what we deliver now and what is needed is deeply problematic. We need to recognise that our structures and systems will not work into the future – we will simply not have enough workers even if they are well paid and rewarded to deliver social care as we know it today.  And we cannot simply depend upon family and informal carers who are already well beyond breaking point. How are we going to ensure dignified, rights-based care for a population where most of them will be older and will  be the users of support services when there is a declining working age (and therefore tax paying) population? How will we ensure real choice and not a monolithic offer which strips the social out of care and delivers a clinical emergency response only? So many big questions which are not getting even starter answers.

At the very least please go out and vote on Thursday – social care should be the dominant issue of the moment, the fact it is not is as much of a concern as the rhetoric of political emptiness we so often hear.

Donald Macaskill