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.