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Knowledge leading to action: the urgency of dementia. A blog for World Alzheimer’s Day

September for some time now has been World Alzheimer’s Month and, on this Tuesday, 21st it will be World Alzheimer’s Day. This year, across the world individuals and organisations will be asked to reflect on the theme ‘Know dementia, know Alzheimer’s.’

It is an opportunity to consider the power and nature of knowledge. As part of this organisations and individuals are being encouraged to find out more, to get to ‘know’ more about the signs and symptoms of dementia so people can get the right diagnosis and support as quickly as possible.

Knowledge and dementia are an interesting association. Knowledge is both personal and emotional, intellectual and factual. It is also something which can inspire, create passion, and foster change.

As I sat down to write this blog, I could not help but think as I have for some years now at this time about my own mother who died from dementia some years ago. Before she was diagnosed, I thought I knew about dementia. In some senses I did, and I suspect I thought I probably knew more than others. As a young student on placement, I met many older patients in what was then termed a ‘psycho-geriatric’ ward including a man who had undertaken a career of neurological research but had himself developed dementia. So, I knew a lot about the technical aspects of the disease as I worked in different places and occupied different roles. But in reality my knowledge was a partial shadow of the truth.

Then my mum was diagnosed, and the lessons of love offered a different, hard, and painful knowledge. It was the knowledge of tear and fear shared by my family as we witnessed mum and granny decline inexorably in front of us. Having worked until her early 80s her decline seemed so rapid and yet so inexorably slow. This was a woman whose solution to all of life’s traumas and ills was the making of a cup of tea, a ‘strupak’. Then came that moment when she had forgotten the steps of her healing ritual and stood frightened in an empty moment without remembrance. She had forgotten how to make a cup of tea. The stripping of inner knowledge is one of the obscenities of this disease. Knowing changed, love remained, but relationships pained and fractured. There was a new world of knowledge, one which was not about the past or action, but one which was about discovering with faltering step and searching fingertips the landscape of a new world.

Knowledge and dementia are indeed strange sisters.

But there is another dimension to knowledge. There is not just the knowledge of fact and intellect, and even that of emotion and heart. There is also a knowledge that changes you and puts you on a new and different path, a knowledge where you cannot no longer be the person you were before it’s awareness, can no longer accept old familiar ways.

Knowing what I do about this disease both in my head and heart I cannot accept the casual discussions and debates, the easy political presumptions, media stereotyping and societal ageism that I have heard and witnessed for so long and which have been so manifest in the last few weeks.

The future of social care is centre stage in both Scotland and the other nations of these islands. The lazy debate which has been held has wholly failed to appreciate the nature of social care and the reality that it is more than a series of services and supports but a whole eco-system that enables people to fully live their lives as citizens regardless of condition, age or infirmity.

But perhaps where that public and political debate has fallen most short has been in its exploration of dementia.

The knowledge that needs to be shouted from every street this World Alzheimer’s Day is that dementia is a health condition first and foremost. So why? why? why? are we allowing its treatment to be seen solely through the prism of a social care solution? Paradoxically maybe those of us who have over the years resisted the pathologising of dementia and what happened when I was young which meant people were to be hospitalised, perhaps our emphasis on the need to see dementia as more than just a neurological disease, perhaps we bear some culpability. But the pendulum has swung far too far to the extent that dementia is in the eyes of many seen as a disease which can ‘solely’ be supported by social care interventions and supports. This is naive ignorance. It is a denial of the clinical reality that dementia is a disease first and foremost and one that requires significant clinical and health service intervention alongside social care support and re-enablement.

Where this simplistic dualism is seen most acutely is in how society resources and finances dementia care – or to be more accurate does not finance it.

It is wholly iniquitous that if diagnosed with dementia one has to sell one’s home to receive residential nursing home support. Now credit where it is due, the Scottish Government have committed to extending free personal and nursing care to better reflect the true cost of care and have recognised the gap between the true cost and the reality of underfunded rates in our care homes – though we await the realisation of the commitment. But that does not go far enough. How is it in any sense fair that someone who is in the advanced stages of dementia is not given the option of 24/7 nursing and social care in their own home? Why if someone chooses to or needs to live in congregated living like a care home is it assumed that their accommodation costs would be the same as at home? Come on this is the crude arithmetic of discrimination.

Henry Simmons the CEO of Alzheimer Scotland in a newspaper article this past week rightly argued the policy on enhancing free personal and nursing care still left people with advanced dementia facing huge costs because of the high level of health interventions and care that they need.  I was fully supportive of Alzheimer Scotland ‘Fair Dementia Care’ campaign when it was launched and remain so. As Simmons said to The Herald.

“In Scotland, we’re looking at five years to see the development of the new National Care Service, and three years for the rest of the UK before the full amount of new funding will find its way to social care.

“Notwithstanding the fact that people with dementia do not have time to wait for these improvements, there is also one fundamental and massive inequality that neither of these proposals go far enough to resolving – or even mentioning – and that is the fact that people with advanced dementia… are still going to have to pay substantial amounts for their care costs.

“Take a person living with advanced dementia. Their illness – a direct result of an untreatable brain disease – has progressed to the point where they may require assistance to walk, bathe, toilet and communicate.

“For this person, these are unequivocally health care needs.

“Why do we still feel that it is acceptable that we ask this person to pay for their care?

“We are talking about people who have worked their whole life, contributed through tax and National Insurance to help build the quality of life than many of us seek to enjoy.

“Why is dementia so different to other terminal conditions? It’s unequal, it’s unfair, and it needs to stop.”

 

People who have lived with dementia and those they love have known for years about the grotesque inequality of the funding of care and support, of clinical intervention and health support for the condition. It is a knowledge that should shame those who make political decisions and exercise fiscal oversight.

Knowledge must always lead to action, or it withers the heart. Knowledge of the inequity of support and care for those living with dementia should challenge us all to create a system which treats all with equality regardless of condition, age or illness. I yearn for the maturity and the dignity of such a day to come. I suspect – sorry mum – that such a day will not be brought about by cups of tea alone but my calling out the inequality at the heart of dementia care for what it truly is – an abuse of the human rights and dignity of tens of thousands of our fellow Scots.

Donald Macaskill

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Every Story’s Ending: a vision for a human right of palliative care.

I’ve mentioned before in this blog that the openings of books and stories always seem to remain with me. Whether it’s a simple ‘Once upon a time’, or ‘The clock struck thirteen’, ‘It was the best of times and worst of times’ or the more recent ‘Mr. and Mrs. Dursley of number four, Privet Drive, were proud to say that they were perfectly normal, thank you very much.’ – the opening of a book can stay with you long after you have put the book down- but of course that very much depends on how good the book is in the first place.

What I struggle with is in all honesty remembering any final lines. There is of course, ‘They all lived happily ever after’ but despite attempts to talk up the endings most are forgotten – unless the ending is a poor one – that we do remember.

This past week I was pleased to attend the launch of ‘Every Story’s Ending’ which is in my view probably the singular most important work on palliative and end of life care to come out of Scotland in many years. The report comes from the Scottish Partnership for Palliative Care and is the output of hundreds of conversations, insights and reflections on the essence of palliative care and why it is so important for a society. It has about it the spirit of those conversations in its narrative, honesty and depth. It is a fairly long report but please read it because it will return the effort twelve-fold. The report has loads of practical recommendations which are rooted in sense and experience.

We put so much energy into planning birth and entry into life but so little in thinking or planning around our death and departure. But the way we end our story is as critically important as what comes before not only for ourselves but for those we leave behind.

In considering the report for me inevitably what it says about social care is especially important. That section starts with a wonderful quote from Annie Gunner Logan which describes well the distinctiveness of social care and why it has to be considered as central and intrinsic to all attempts to foster and improve wellbeing and health.

“What we [social care] do is get alongside people when they have very significant challenges in their lives and struggle to participate in society as full citizens, and we support them, wherever possible, to make their own decisions and move their life forward as best they can. Where the world makes it very difficult for people to do that because of their age, impairment or whatever, we do what we can to help by ensuring that they are comfortable, are cared for and can have at least some kind of independence and peace of mind in their individual circumstances.”

Annie Gunner Logan Director of the Coalition of Care and Support Providers in Scotland (Health and Support Committee Inquiry into Social Care)

That is a description which shows the potential of social care to enable the individual and wider community to achieve the fulness of life and purpose that they want and desire. Sadly, in the debates I have seen and heard in the media this past week as England and the UK Parliament has considered social care funding there has been a palpable lack of real understanding of what social care is and its potential. It has been very much about the NHS and looking at social care through an NHS clinical and acute sector lens. This has sadly missed the whole point. The debate has been about cost and deficit, need and limitation rather than potential, autonomy, control, and choice. Good social care allows an individual to achieve to their fullest potential and perhaps that is especially the case where social care supports the flourishing of the person at end of life and through effective palliative care and support.

The report highlights many of the challenges facing social care if it is to enable people who want to die at home or in a homely setting to achieve their wishes without unnecessary and unscheduled admission to hospital in the last months and year of life including the need to reform commissioning, increase financial investment and better train and support the workforce. The recommendations are self-evidentially implementable.

But this past week has also seen other work not least a commitment in the Programme for Government to the creation of a new Palliative and End of Life Care Strategy and also further work in the development of a new Human Rights Act for Scotland.

We are with all these changes and initiatives at a point of real potential and opportunity. For those of us who have worked in palliative and end of life care for many years there has been a desire to create systems and models, supports and structures, relationships and freedoms, which enable people to end their life in a way which upholds their choice and dignity, supports them and their families and friends, and ensures that we become the best nation in which to end one’s life such is the quality of palliative and end of life care support.

I have written elsewhere about how this can all be encapsulated if we have the dream and ambition within our social care and human rights legislation to declare clearly that citizens in Scotland should have a ‘human right to palliative and end of life and bereavement support.’ Scotland has the legislative, policy and practical opportunity to become the first nation to enshrine such a right within our society and community. It is an opportunity which should not be lost.

Death and dying is part of everyone’s story but the way we support and care for that ending is something which is unwritten. We face the challenge to make sure that everybody’s ending tells the story of a society that enshrines the rights of choice, dignity, respect and humanity. And if it does that will be a final sentence worthy of remembrance.

The End 

Not every man knows what he shall sing at the end,

Watching the pier as the ship sails away, or what it will seem like

When he’s held by the sea’s roar, motionless, there at the end,

Or what he shall hope for once it is clear that he’ll never go back.

 

When the time has passed to prune the rose or caress the cat,

When the sunset torching the lawn and the full moon icing it down

No longer appear, not every man knows what he’ll discover instead.

When the weight of the past leans against nothing, and the sky

 

Is no more than remembered light, and the stories of cirrus

And cumulus come to a close, and all the birds are suspended in flight,

Not every man knows what is waiting for him, or what he shall sing

When the ship he is on slips into darkness, there at the end.

 

“The End,” © 1990 by Mark Strand from The Continuous Life by Mark Strand.

 

Donald Macaskill

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More than a visitor: a reflection for World Suicide Prevention Day

Next Friday (10th October) is World Suicide Prevention Day. I have written before in this blog about the challenges of mental health for older people in society. Those challenges are even more acute when it comes to considering the prevention of suicide amongst the older population.

This year’s theme is ‘Creating Hope Through Action’ and aims to empower people with the confidence to engage with the complexity of ‘hope’. There are dozens of organisations including well known ones like the Samaritans who campaign on World Suicide Prevention Day under the National Suicide Prevention Alliance (NSPA).

Together, they ask the governments in the UK and Ireland to make suicide prevention a priority and help raise awareness about how we can each support each other better.

On the day itself we are being asked to share the things that we do which helps us feel hopeful when we are going through a difficult time. For example:

  • Reaching out for a coffee with our best friend
  • Taking a walk in the fields and letting the wind blow everything away
  • Go for a run along the seafront

Suicide affects many people in Scotland. In 2020, 805 suicides were registered in Scotland (575 males and 230 females). These numbers comprise deaths coded to ‘intentional self-harm’ and to ‘events of undetermined intent’. See

https://www.scotpho.org.uk/health-wellbeing-and-disease/suicide/data/scottish-trends/

Throughout my life I have worked with people affected by suicide and mental health challenges and whilst it is always dangerous to make any statement in this area because of the risk of it becoming trite, I think there is one thing more than anything else I have learned and that is that communication and talking are so vitally important. It is one of the reasons why I get so angry that for too many of our older citizens, whether they use social care supports or not, as a society we have steadily reduced the opportunities and chance to chat and talk, to listen and to be available. If social care is about anything it is about the dimension of care which is social and relational rather than simply about task and function.

Now I am the first to admit that conversation and communication is not easy especially if someone is distressed, anxious and upset. There are times when we worry about saying or doing the wrong thing but in most of those instances doing nothing can be just as bad.

Since its creation Public Health Scotland has produced some fantastic short animations to help individuals address the challenges of communicating on hard issues including listening, questioning and responding. You can access these through the NES website

There are a whole host of reasons why someone might be at risk of suicide including family breakdown, insecurity of life including employment, alcohol and substance misuse and so on, but over the years we have often ignored factors relating to age as key influencers.

During the pandemic many older individuals felt a sense of powerless, they endured isolation and exclusion, a sharp loss of contact and routine, and some developed a sense of worthlessness because of the way society was perceived as valuing older age. There were some older adults who felt that they were a burden to family and friends and many experienced bereavement without the usual supports of ritual and family for their grieving.

Increasingly professionals are aware of these heightened risks and some resources have been developed to support us all to be aware of the risks of suicide in older age not least as a result of the pandemic. I would personally commend the NHS Education Scotland work in this space.

Talking and listening, supporting and being present are all so critical perhaps especially at times of memory and community celebration. World Suicide Prevention Day allows us to focus on the importance of this work as professionals and as individuals and I hope we can all take some time on that day to reflect what we do as individuals and organisations and what more we might be able to do.

There are also times and spaces where silence interrupts the talk, and it is easier and better simply to sit and to be with another. It is in those spaces that I find, along with others, that poetry offers a unique insight into the emotions that many of us struggle with.

Some of you might know the poetry of the activist and mental health campaigner P.Bodi  who for me provides short but deep insight into the struggle of living and loving. In her work ‘Inherit the Dawn’ P.Bodi writes poems for hope. They are poems written for anyone who has ever struggled with their mental health, and for those who are in need of compassion, empathy, and gentle reminders to keep going.

“I will do as the flowers do

Inherit the dawn.

Tell me of the morning

And the gentler days beyond.”

It is this necessity of grasping hope which is the at the heart of the work of many poets who have written about a depth of despair that has cut them to the core, perhaps no more eloquently than Mary Oliver who has across her career written and spoken openly about issues of mental health and challenge.

I leave you with her poem, ‘When death comes.’

“When death comes

like the hungry bear in autumn;

when death comes and takes all the bright coins from his purse

 

to buy me, and snaps the purse shut;

when death comes

like the measle-pox

 

when death comes

like an iceberg between the shoulder blades,

 

I want to step through the door full of curiosity, wondering:

what is it going to be like, that cottage of darkness?

 

And therefore I look upon everything

as a brotherhood and a sisterhood,

and I look upon time as no more than an idea,

and I consider eternity as another possibility,

 

and I think of each life as a flower, as common

as a field daisy, and as singular,

 

and each name a comfortable music in the mouth,

tending, as all music does, toward silence,

 

and each body a lion of courage, and something

precious to the earth.

 

When it’s over, I want to say all my life

I was a bride married to amazement.

I was the bridegroom, taking the world into my arms.

 

When it’s over, I don’t want to wonder

if I have made of my life something particular, and real.

 

I don’t want to find myself sighing and frightened,

or full of argument.

 

I don’t want to end up simply having visited this world “

Donald Macaskill

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The turning of the seasons: the changing nature of coronavirus response.

The 1st of September is officially the start of autumn and yet where I am sitting now it feels as if we are amid a summer of sunshine – and allegedly the sun and warmth are set to continue for at least another week. As the adage goes now the schools are back the good weather starts. The turning of the seasons has always been of interest to me, not least that move from summer to autumn then onwards to winter.

It has been a strange summer. We have gradually seen Covid restrictions ease in most of society with heightened anticipation and dependent on where you are for some people a full thrust into reverse gear back to past actions. For the majority some degree of ‘normality’ has been possible but for many not least in our care sector restrictions have remained and a sense of the normal has still been out of reach.

I have taken some time off over the last few weeks and in most instances have been seeing family which has meant that I have been to almost the southernmost part of England and far north in Scotland. As I have travelled and talked to people, I have noted a real divergence in attitudes and behaviours during this Covid summer. This is in part because of the diverse messaging from governments and politicians and dependent upon the extent to which Covid has impacted on local communities and people. The lack of consistency in public health messaging from politicians and scientists has been singularly unhelpful and at the very least the failure to mandate mask wearing in public places in parts of the UK will doubtless be the object of hindsight regret.

The diversity of response and behaviour was much on my mind as this week I travelled to Edinburgh for the first time in 18 months. Even a partial return to my old work routine was a strange revisiting of behaviour. I was struck by the level of anxiety that consumed me in a journey which I used to make three or four times a week. I was aware of my physical reaction every time someone who did not wear a mask got on the train, every time someone started to cough beside me or when I saw someone behave in a manner which I would probably have ignored two years ago. That’s to say nothing of the crowded busyness of tourist filled Edinburgh.

When I got back to the cocoon of my own space, I reflected on why I had been so anxious and concerned and in truth it was the same for many of the moments over the last 18 months when conditions changed, lockdowns ended, and restrictions were relaxed. For many folk it has been hard to change the routines of self-protection and preservation.

It was in the context of such thoughts this past week that I have read and watched as both scientist and politician have consistently increased the tenor of warning and that discussions on further restrictions have started to appear.

Anxiety is becoming commonplace as people witness the growing number of cases and the rise in the number of people being admitted to hospital. Scotland has just yesterday recorded over 6,800 positive cases and one of the highest test positivity levels. Against all this we are told that though people are becoming infected the impact is not as severe because of vaccination. But this week we have also read that the immunity granted by vaccination is depleting at some pace, down to 67% for those of us who are Astra-Zeneca double dozed after several months. Hospital cases are rising and at times I fear people are immune to that soundbite, forgetting that a case in hospital is not just someone feeling slightly unwell, but someone admitted with serious illness. And then the data on death and mortality which is thankfully very low compared to earlier in the pandemic – but I do have concern that our reaction to the daily number of deaths is displaced from the compassionate stance we had when we were losing more people every day. For each person there is a life, family and connection shattered and lost.

Looking at the data for care homes we see there are in the past week 97 staff who have tested Covid positive compared to 56 the week before. In the week to 22nd August there were 42 new Covid cases amongst residents, 8 more than the previous week. The number of outbreaks in care homes has also risen sharply in the past week to 47 which is the same number as in mid-February. All the data shows that the majority of both the recent resident and staff cases have been double vaccinated.

We seem to be in a place where the seasons are turning and anxiety rising, where the warmth of the summer sits uneasily with the coming chill, where warnings are rising and concern increasing.

And while all this is going on in the last week, I have held countless conversations which have been dominated with a sense of deepening crisis and fear for the sustainability and stability of the social care sector.

We are amid what feels to me like one of the worst workforce crisis the care at home and care home sector has faced for many years. There are more and more care providers who are struggling to recruit staff because there is so much competition from other sectors such as hospitality. The absence of incentivised reward and adequate remuneration which truly values the skilled work of care is not helping at a time of acute job competition. Added to this we have seen a dramatic drop in the ability of social care providers to recruit from outwith the United Kingdom. Now lest someone immediately says we should be using our own population – I would say do the sums! – we are a nation that needs the creativity, innovation, and insight of those who come to this country and become our community. We have an ageing workforce with a population which is older in greater percentage than any other part of the UK. We need to urgently address the exhaustion and tiredness of our care sector staff and to provide support in very practical terms as we move into autumn and winter.

I do not know what the future will bring but I am more than aware that we need to work with the fear and anxiety which is palpable around us in many quarters. A false positivity will not help address the reticence of people when faced with the fear of debilitating illness and the rising numbers of Long Covid. Covid19 is with us for some considerable time to come and glib phrases like ‘we need to live with it’ will not give the re-assurance needed to those who are fearful and cautious, most especially in our care sector.

Throughout all this the ability to listen, to empathise and to work collectively in authentic partnership must be at the heart of how we move forward both as a care sector and as a wider community.

The brilliant Maya Angelou has long been a personal favourite and many of her poems are poems of ‘transition’ – they occupy the liminal spaces of life between love and hardness, emptiness, and joy. One such is her poem ‘Late October’ which describes life as a cycle and uses the seasons of the year as a metaphor for life describing the ‘special insight that lovers have into endings and beginning.’

Life as we have known her has disappeared into the summer mists, from our future comes the hope of a new way of relating one to the other, it is a hope we build by addressing the fear and anxiety of the moment, it is a hope we nurture by walking with those who fear rather than abandoning them. I know not what the weeks will bring and hope that the pandemic will come under control once more, but the price of ‘freedom’ can never be at the cost of the harmony, hope and peace of others.

“Only lovers
see the fall
a signal end to endings
a gruffish gesture alerting
those who will not be alarmed
that we begin to stop
in order to begin
again.”

 

Donald Macaskill

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Virtual reality – should we care?

Last Tuesday I was invited on to Radio Scotland to talk about the benefits of ‘Virtual Reality’ for older people in Scotland especially in our care homes. As regular readers of this blog might know I am someone who has long held an interest in all things technology and digital, not least artificial intelligence and robotics.  Both during and after this week’s programme I began to reflect on the extent to which we have not fully tapped into the potential of VR for both older people living in care homes but maybe especially for those in our communities. This will be an issue which we will be considering in a lot more depth during the Scottish Care hosted virtual Care Tech 4 event which will be held this coming Thursday and Friday. It promises to be a great couple of days which folks can drop in and out of with a range of up-to-date demonstrations, presentations and exhibits as well as fascinating panel discussions. For more details see https://scottishcare.org/care-tech-4/

But for now, as my title asks should we care about virtual reality?

A lot has been said and written about VR over the years not least about its role in gaming technology, of which Scotland is one of the major centres of innovation, development and invention. There has been less written about the benefits and drawbacks of VR for the care and support of citizens regardless of their age. Indeed, there have, I believe, been around 5,000 academic articles in the last three years alone about VR but few of these have been about the use of VR in our care and support sectors.

We can make some general conclusions from the research that has been done to date along with anecdotal evidence in Scotland which in broad terms suggests that VR is of real benefit, in some instances of very significant benefit. One of the reasons research suggests that VR is an asset is because of the immersive interaction capabilities which VR enables and allows.

In my experience I think we can broadly suggest there are the following positive benefits of using VR in care homes and in someone’s own home:

Firstly, there are clear health benefits to be gained in terms of exercise, increased physical mobility and movement. So, the recently developed innovation from an Edinburgh entrepreneur working with local care homes has helped individuals to remain mobile and to exercise. See https://www.edinburghlive.co.uk/news/edinburgh-news/edinburgh-entrepreneur-uses-virtual-reality-21228219and https://www.digitechtive.co.uk/care-home-vr

Readers might also be interested in the work of the Norwegian group Motitech which enables people to exercise whilst re-visiting parts of the country which they might be familiar with and evidences real positive outcomes re increased muscle strength, balancer and breathing.

More research needs to be undertaken in this area because studies have tended to focus on rehabilitation and physical function including gait, balance, falls prevention and pain management. They have also tended to focus on settings such as care homes where there is support in their use but the real potential future benefit for physical health will undoubtedly be in the community and ensuring people can remain as independent for as long as possible.

VR in any of its formats is not a panacea but studies are detailing increasingly significant benefits especially if used as part of a wider programme os health and wellbeing, rehabilitation and exercise. See https://www.jmir.org/2020/6/e17331/

Secondly, there is growing evidence to suggest that the use of VR can improve psychological health and well-being. The use of VR in the support and care of many people with dementia has led to a reduction in agitation, improvements in behaviour which challenges, and a reduction in the use of psychotropic interventions.

Thirdly, the use of VR as a memory tool has heralded real benefits. Used well it can bring people back to experiences and encounters, to places and events, which have been significant in their past and which can help in terms of cognitive recall and stress alleviation.

Fourthly, VR has great strengths as an educational tool, enabling its immersive approach to support any individual regardless of their age, to gain new understanding and knowledge. Contrary to popular opinion and stereotype many older people both in care homes and in their own homes, thrive on new experience, learning and insights.

Lastly, they enable people to interact and be in touch with people they know or those who they might want to get to know. Whilst pad technology has been dominant in maintaining contact especially during the pandemic there is a real potential in the use of VR.

Now there are clearly challenges but these are capable of being addressed and overcome. Wearing a headset for too long can cause confusion or headaches; there is an importance of being aware of factors which might impact balance and hearing. There needs to be an emphasis on adequate support and maximising accessibility for individuals with reduced cognitive abilities.

But perhaps the biggest challenge for the use of an VR is cost. Whilst basic headsets are now retailing for below £30 some devices can stretch into the 1000s. More pragmatically excellent headsets can be purchased as part of support packages for the low £100s. Nevertheless, there is a clear fiscal cost both in equipment and in the support needed for people to sue them to their maximum benefit. Therefore, when we are designing and developing services and supports, we should now as a matter of priority be considering the cost benefits of using VR alongside a whole suite of other technologies.

Doubtless the above and many issues will be explored during CareTech4 and throughout Scottish Care’s work on technology and digital.

Technology and VR especially is here to say – it is too important a tool to be left to gaming alone – we really need as a whole community to start caring about VR.

Donald Macaskill

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The bridge of care:  from present reality to future hope.

I crossed one of my favourite bridges yesterday – one which has a long resonance within my experience. After what can only be described as a stormy crossing this morning I am writing from Skye and my family’s croft in Dunvegan. I’ve said before in this blog that Skye has a special place deep inside me no matter how far I am from its physicality, so it is good to be up even for a couple of days. The Skye Bridge is well known – synonymous with a struggle of a community determined not to have to pay exorbitant bridge tolls and who carried out a successful campaign in the late 1990s, one which belied both court and parliament.

Bridges have long fascinated me – probably since my late uncle showed me his signature on a bridge over the river Hamara in Glendale, Skye because he had been involved in building it. As a child at the time, it seemed to me to be huge but in truth it was but a few feet in length. But the idea of something which brought you from one side to another, something which you could build to provide safety and passage, fascinated me from that moment on.

On Monday last the Scottish Government published their consultation on a National Care Service. I will no doubt make further comment on its contents and proposals in another blog or space but for the moment its words and ideas are cogitating inside my head! But what has fascinated me this past week isn’t so much the vision of the future but the ‘how’ – how do we get from where we are now in terms of social care support delivery in Scotland to the vision or prospect which is held before us in both the consultation and in other proposals which are beginning to emerge in civic society. I think reflecting on that ‘how’ is important because it will either help to achieve the vision or hinder it.

I spoke to the AGM of Scottish Care members a couple of days ago and I heard there and reflected upon the concern of many that the next few weeks, months, and years will be ones of real importance. Getting from where we are to where we want to be involves planning and preparation, focus and concentration. I know that all too well. Climbing a Skye mountain is a challenge in itself – obtaining and developing a vision for how you see the future of social care is an equally arduous task – but as with any climb it is both the preparation for the climb which is essential and also the descent that often causes the most harm and poses the greatest risk. Having a vision is all very well but moving towards that future vision is where risk and harm can really happen.

That is where I feel the image of the bridge comes in. A bridge is not an incidental or accidental combination of brick and mortar, steel and structure, but the fashioning of materials for a purpose which entails design, calculation, and precision. Too often we rush to get to the other side without thinking about the importance of the route we travel or what we use to get us there.

There is such a critical importance that all of us involved in social care plan our next steps with care and mutuality, be we people who use support or frontline workers, managers or owners of care services, trade unionists or politicians.

We need to think of how we support and nourish our workforce who are tired and drained so that they stick with it and continue to dedicate themselves to the art of caring. We need to stop the blame game for care providers and work together to create a future worthy of our communities of compassion. We need to bestow trust upon professionals delivering our care home services rather than hauling them before investigations and oversight, scrutiny, and inspection. We have to chase away the falsity of infection prevention practices which negate human living by treating a care home like an acute infection unit. We need to work with every sinew to build confidence and remove fear so that we can urgently return to the normality of care home living. We need to allow people to take risks, including the risk of acting in ways which may harm themselves if it is their choice with capacity.

We need to think about mutuality not as an airy concept but as a practical, day to day reality where the professionalism of one group is valued, appreciated, and affirmed by another. We need the false dualities of care and health to become entwined in a regard which puts the person at the centre and treats them not as cared for or patient, but as citizen and director of their living health and wellbeing. We cannot wait for a reform to commissioning but must end now the obscenity of 15-minute visits and the penalising of frontline staff. And so on and so on…

One of my favourite poets is the American Emily Dickinson. She led a secluded and quiet life, and her poetry was unconventional both when it was written in the 19th century and for some still now. She is considered by many as one of the greatest female poets. One of her commonest motifs and images was that of the bridge. Her most famous bridge poem is this one:

Faith—is the Pierless Bridge 

Faith—is the Pierless Bridge

Supporting what We see
Unto the Scene that We do not—
Too slender for the eye

It bears the Soul as bold
As it were rocked in Steel
With Arms of Steel at either side—

It joins—behind the Veil

To what, could We presume
The Bridge would cease to be
To Our far, vacillating Feet
A first Necessity.

Dickinson’s poem is not primarily about religious faith though uses the metaphors of faith traditions. It imagines a sceptical explorer crossing a bridge (possibly the Niagara Falls Bridge). It is a bridge without piers – a suspension bridge – it extends from what we see to what we do not see. It connects what we know to the unknown. It is not a wobbly wooden planked bridge but as one commentator has said is personified as a mother gently rocking her child (the soul) with arms of steel.

The way we cross the bridge, the way we move into the future will determine what is on the other side as much as what we have left behind. So too I suspect it will be with the creation of a new way of doing and being social care. In our creation of a new model or new systems we have to characterise our behaviour as one of care, bestowing autonomy and choice, nurturing humanity and dignity, and fulfilling rights and equality. We can walk with care and compassion, treading a bridge which brings renewal, or we can ignore the reality of the present. To achieve all this, we must have critical and urgent regard to the crisis of the present time and social care in Scotland has I believe rarely been in such a state of multiple crises.

The making of the future is built upon the changing of the present. You cannot build a bridge you expect to walk over by pulling up and destroying the planks on which you walk.

Donald Macaskill

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It is time for the frail to weather well:  a call for positivity in ageing.

Three weeks ago, I wrote a blog on the nature of vulnerability – both challenging the misuse of the word and also suggesting the need to develop a more positive view of vulnerability. With a degree of synchronicity and similitude, I have been having comparative conversations with clinicians and colleagues in the last few weeks over the concept of frailty.

Frailty has been a key concern for the care sector for many years. Over that time there has been considerable discussion about its definition, what it means both physiologically and psychologically and how relevant it was as a descriptor in the support and care of individuals.  I was therefore delighted to read a piece in the last few weeks by the respected clinician David Oliver which confirmed both my own unease with the term and why it is important that we reconsider our views of frailty.

In that paper Oliver reminds us of the uncomfortable debate in spring 2020 in the midst of the first Covid wave, on the use of the Clinical Frailty Scale (CFS) as a tool ‘to triage, target, and potentially ration scarce intensive and high dependency care.’ With many others I was critical at the time of the use of such a tool as a proxy for individual and person-led clinical decisions and the dangers of age discrimination which might result.

It is important in any debate on frailty to recognise that it has positive dimensions to its usage. As Oliver states:

‘in over 75s registered with NHS practices, severe frailty as defined by an electronic frailty index is associated with far higher risk of hospital admission, death, or care home admission in the following 12 months. People with frailty have less functional reserve and are far more likely (with or without covid-19) to present with immobility, falls, confusion, or generalised failure to thrive, or to get stranded in hospital or experience acute loss of function. Those in care homes, or who have dementia or are receiving home care or post-acute rehabilitation, will often be frailer and older.’

As a general term, therefore, there are clear benefits in being able to use models which can be early predictors of the benefits of additional support and intervention. As a preventative assessment measure such frailty tools are invaluable in achieving both better outcomes for the individual person and in reducing the economic health costs for the rest of society brought about by unnecessary hospital admission.

But the term is not neutral and can be used sometimes with inconsistency and contradiction. Indeed frailty is a term and concept which as researchers like Archibald et al have shown is not widely understood by the general population and is negatively viewed as a descriptor by older people themselves. They argue in their research that the use of the term may actually serve to harm key public health messaging.

A critical dimension of the care and support of older people is to enable individuals to maximise independence either in their own home, in the community or in a care home. Most associations on frailty relate to a loss of independence predominantly due to challenges with mobility and a loss of control over one’s environment. Frailty clearly both at the popular level and clinically carries with it negative connotations.

There are a couple of points in this extensive debate which I want briefly to make in this blog.

The first is that at times there can be too great a stress upon frailty seen as physiological decline without a resultant emphasis upon psychological, emotional and environmental changes and challenges, and

Secondly, I wonder if it is time to collectively replace the concept of frailty with a more positive modelling based on how we should be enabled and assessed as ‘ageing well’?

Turning to the first issue. There is now a wide professional acceptance that frailty is not solely about physical decline, either of mobility or other functions. There is an appreciation that we need to have and adopt a holistic understanding of frailty. An individual’s circumstances and the constraints on their independence are a product of many factors, including their physical environment, their psychological well-being, the extent and degree of their relationships and social connection. Frailty therefore cannot simply be a score on a chart to take account of changes in someone’s physical health.

But when I speak to practitioners and to those older persons who access health and care services, such a holistic understanding of frailty seems frustratingly absent and missing. They complain about the dominant emphasis and focus on their physical health and a limited or absent appreciation of their psychological, social and relational well-being.

From my own experience I can remember my great aunt who was an astonishing woman still writing articles and letters when she was 94. She had a fall which resulted in a hip fracture and underwent very successful surgery. Her rehabilitation focussed on her physical return to health. The stress was upon addressing her frailty. But over a short period, she declined sharply, and it wasn’t the physiological decline – as I said surgery went well and she responded astonishingly well – but it was the impact psychologically that it had upon her and her confidence which those around her recognised as the major factor in her change. Yet nobody attended to that because all they could see was the physical decline and frailty and not the change in the person.

The person who has had a hip fracture at home because of isolation and loneliness and lack of social care support and ends up going into an acute hospital for a replacement – their intensive rehabilitation back in the community isn’t – should not be – simply about enabling them to get back on their feet, to mobilise, to be able to ‘look after themselves again’. If that is all we’re doing, we’re only attending to the physiological functional dis-ease. We’re not attending to that connectedness of the person who needs to be able to maintain relationship with neighbours and with their community, and nor are we attending to their mental health needs because that certainly, in my experience of frailty and falls, is what we often forget because we’re so focused on the physiological. We know about but often fail to respond to the sheer mental distress, trauma and psychological fatigue which occurs when somebody has a major fracture whether it happens in their 60s or in their 90s.

I think we are some considerable distance from a situation where there is a robust multi-disciplinary team awareness across health and social care of the multiple factors that contribute to the decline and change in the health story of an older individual.

Another really important recent study from Coker et al makes the same point of a gap between awareness of the need for a holistic understanding of frailty and what actually happens in practice. Summarising their research study, they state:

‘There was a shared narrative among participants that frailty is an umbrella term that encompasses interacting physical, mental health and psychological, social, environmental, and economic factors. However, various specialities emphasised the role of specific facets of the frailty umbrella. The assessment and management of frailty was said to require a holistic approach facilitated by interdisciplinary working. Participants voiced a need for interdisciplinary training on frailty, and frailty tools that facilitate peer-learning, a shared understanding of frailty, and consistent assessment of frailty within and across specialities.’

I could not agree more about the necessity to move beyond biomedical descriptions of frailty and to support older people in a more holistic manner utilising the professional skills of all social care and health care staff.

The second issue I raised above was the suggestion that perhaps we need to move beyond frailty descriptors and to develop a more positive modelling based on how we should be enabled and assessed as ‘ageing well’

The language we use in life and in our descriptions of how we value living are critical and there can be no doubt that concepts of frailty are negative, limiting and associated with decline and deterioration. Whilst ageing does indeed for all result in change and alteration and for some that includes elements of physical or psychological change, it does not always need to be perceived in a negative and diminishing manner. Why do we see such change as negative? Is it because our societal ideal is still a concept of humanity rooted in a cult of physical prowess, our vision of humanity one of the ‘whole and able’, and that inevitably ageing, and the change that accompanies it, is seen through a negative lens?

I think the continual impugning of negative association with frailty is preventing us from being positive about ageing. If frailty impacts almost inevitably for those who age then why should we see it as decline and deficit rather than as natural and normal, to be lived through rather than avoided?

As more and more of us live for longer and longer periods of time and increasingly with healthier older age, we really need to grow up in our attitudes about age and the extent to which we either on the one hand dismiss the benefits of older age or elevate them to a false authority. Neither is entirely accurate nor helpful.

Instead, we should, I would contend, be seeking to adopt a positive view of ageing and a model of care and support, both healthcare and social care support, which is oriented not on a negative paradigm such as frailty but on the positivity of ageing. This is after all the World Health Organisation’s Decade of Positive Ageing!

Frailty is the consequence of ageing for many of us and it will happen both physically and psychologically at different stages for different people. We have to own it and see it as one of the glorious realities of us all getting old which for many of our forebears was not a possibility.

Yet in descriptions of frailty and ageing the norm is on too many occasions a limited clinical view. This is the description of ageing I came across recently – it described it as  ‘characterised by a complex and intraindividual process associated with nine major cellular and molecular hallmarks, namely, genomic instability, telomere attrition, epigenetic alterations, a loss of proteostasis, deregulated nutrient sensing, mitochondrial dysfunction, cellular senescence, stem cell exhaustion.’ Dictionaries available online!

To age has to be seen as the flourishing of our lives, despite the challenge of the passing years. So, it is time both to broaden our vision of ageing well and to re-consider whether frailty as a concept should be replaced by ageing. Or perhaps weathering?

The late Whithorn born poet Alastair Reid sums the changes brought about by ageing in a manner that for me captures its essence – I would rather weather with the time of age than decline on a clinical frailty scale any day!

Weathering.

I am old enough now for a tree
once planted, knee high, to have grown to be
twenty times me,

and to have seen babies marry, and heroes grow deaf –
but that’s enough meaning-of-life.
It’s living through time we ought to be connoisseurs of.

From wearing a face all this time, I am made aware
of the maps faces are, of the inside wear and tear.
I take to faces that have come far.

In my father’s carved face, the bright eye
He sometimes would look out of, seeing a long way
through all the tree-rings of his history.

I am awed by how things weather: an oak mantel
in the house in Spain, fingered to a sheen,
the marks of hands leaned into the lintel,

the tokens in the drawer I sometimes touch –
a crystal lived-in on a trip, the watch
my father’s wrist wore to a thin gold sandwich.

It is an equilibrium
which breasts the cresting seasons but still stays calm
and keeps warm. It deserves a good name.

Weathering. Patina, gloss and whorl.
The trunk of the almond tree, gnarled but still fruitful.
Weathering is what I would like to do well.

Alastair Reid

from Weathering: Poems and Translations (New York: E.P. Dutton, 1978; Copyright © 1978 by Alastair Reid. All rights reserved)

https://www.scottishpoetrylibrary.org.uk/poem/weathering/

Donald Macaskill

 

This blog will next appear on the 14th August.

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More than a service: the essence of social care

Two colleagues, Dr Tara French and Imogen Caird, have this past week published what I consider to be one of the best papers on social care reform in Scotland that I have read for a very long time. ‘Time for Change: Conceptualising a National Care Framework’ is not long but packs a punch of impact and insight and is well worth a read.

One of their central arguments is that rather than so much debate and focus being placed upon a National Care Service what we should be considering, debating and engaging others on is the concept of a National Care Framework. Now lest that seem like a semantic argument they express their point thus:

“The connotation of language has huge implications for how people understand or conceptualise proposed change. The use of the word ‘service’ implies a relationship and role of providing and receiving, perpetuating transaction between people providing and people accessing support. In defining and describing the conceptualisation of a future of social care, there is a need to carefully select language that emphasises the mutual, relational and outcomes-focused mindset to set a precedent for how people may interact with such a concept. As has been reinforced in many policies related to health and social care over the years, there is a need to shift away from transactional models of care and support towards collaborative, relational approaches which are developed in true partnership with the people they are designed to support. From a rights-based perspective, people have a right to be informed about the options and choices they can make with regards to decisions about their own health, social care and wellbeing. “

As well as highlighting the dangers of a casual association with the National ‘Health’ Service Trench and Caird rightly articulate in their paper that we must recognise that the NHS and any potential National Care Service have to be fundamentally different from one another because in essence they are completely unalike. Failure to recognise the distinctiveness of social care as opposed to healthcare lies at the root of many wasted interventions and failed initiatives.

Social care is more than a service – it encapsulates the essence of a person-to-person support and care relationship. When we are thinking of social care, we need to reflect on the core principles and characteristics which have long been recognised and accepted. As Scotland begins in the next few weeks to consider what we want for the future it might be worth spending a brief time reflecting on those principles and characteristics.

In 2014 my own organisation Scottish Care was one of the many signatories to a Statement on the Principles and Values of Self-directed Support. Now I know in some quarters self-directed support has received a negative press and in others is seen as an option rather than as the only route in which social care should be being received in Scotland today. Nevertheless, its underpinning principles which are enshrined in Scottish legislation are, I would suggest, an excellent description of the essence of what social care is and should always be. They describe a relationship rather than a service. Social care support is about creating independence not fostering a dependency on others or upon services. Fostering independence and the strength, and sometimes the courage, that comes with it requires the building of relationships of trust, honesty, authenticity and reciprocity. It demands an exchange which empowers the supported person rather than validates the needs of the care-giver or commissioner of that care support.

The principles of Self-directed Support both as a legislative set of rights and a descriptor of the process of social care delivery underpin such a relational dynamic at the heart of social care support. They are about collaboration, dignity, informed choice, involvement, participation, innovation, responsibility and risk enablement. Any future model or framework of social care in Scotland has to speak to these principles or it has nothing to say of value.

An individual’s right to dignity in the support and care they receive does not just happen by casual circumstance but through deliberate action, planning and support.

The person needs to be able to know what they do not know, to be given information about their rights, about their options and what is available to them, in a way that they understand, at a time that suits best, and with the assistance that they may require. In no small measure the mess of social care delivery in Scotland and the failure of the Self-directed Support Act to date has been as a result of failed information, poor communication and an echoing absence of a commitment to public and national information. To know, to be informed, is to be empowered and we have as a whole community failed to empower those who require to exercise their rights to social care support. We have been silent too long about the individual rights of people in Scotland to access care support, to take control and exercise personal choice.

There is still too much within traditional social care delivery which retains power and control at the point of professional commissioners and providers of that care support. True collaboration and co-production enable people to be involved in a real and meaningful way, not as a tick-box exercise but as a dynamic that alters the relationship between the person receiving support and care and those paying for it and providing it. We have a long way to go in so many parts of Scotland before we achieve such a dynamic.

I hear of too many instances where a professional assumes that they know best, that they know the outcomes an individual wants to achieve for their life. The real radical strength of the SDS Act was its replacement of a system which assessed what you needed with a process that was about helping you to achieve what you required and wanted in order for you to be able to play your full part as a member and citizen of your local community and country. We have failed in large measure to achieve this and to really trust people to know best, to enable and own their own risk taking, and to have control over the activities and supports that would enrich their lives.

All the above-mentioned principles are the lifeblood of any social care framework and should be at the beating heart of any envisaged National Care Service. We have for too long concentrated on the model and not the meaning, focussed on the mechanics and not the rhythm, centred our concern on the sustainability of the system rather than the flourishing of the individual who receives support and care. Until that changes and until a system of governance and professional influence allows it to change then we will never deliver person-led, rights-based, citizen-controlled social care in Scotland.

I was reminded of the essence of care and support this last week when on Care Home Day (last Wednesday) someone sent me Lee McCurley’s poem called ‘Caregiver’

“I am the caregiver, the watcher, the guide
I walk down the hall with you by my side
a smile, a laugh, a hug or embrace
I watch the worry fall away from your face
I am the caregiver, the watcher, the guide
I walk down the hall with you by my side
I am your compass, your shinning north star
I try to remind you of just who you are
I am the caregiver, the watcher, the guide
I walk down the hall with you by my side
Pictures and letters, music of old
keep your mind warm and away from the cold
I am the caregiver, the watcher, the guide
I walk down the hall with you by my side
the routine of night shows no wear and tear
the light of the morning so soon will be here.”

That is a reflective and, in many ways, insightful piece but the relationship of care and support is not a one-way street but a contra flow of compassion; it is not constant giving but a frequent sharing; it is not always doing for but receiving more.

I have lost count of the folks who over the years have said to me that they care and offer support because it makes them who they are; they cannot imagine doing something else. Now that is not to excuse the pitiful neglect and abandonment of social care workers in regard to their reward and remuneration, their terms and conditions, but it is to acknowledge without embarrassment and apology that to care and support another is ‘more than a job’ it is the essence of our humanity. That is why it needs to be esteemed and valued as the essence of our economy. That is why as we frame the future of social care in Scotland the empowering, relational dynamic of care support needs to replace a transactional, functionalist model which is based on financial value rather than human benefit. Social care support is more than a service it is a way to life.

Donald Macaskill

 

 

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Care Home Day 21 – A blog from our Joint National Partners for Integration Lead

Respair: The Return of Hope

“The work of restoration cannot begin until a problem is fully faced” -Dan B Allender

After what can only be described as an uncertain and difficult 16 months – where family life became intertwined with working life, where working life was lived through a computer screen and workdays lasted long past when they should have finished. There does seem to be a small chink of light at the end of the tunnel.

The Partners for Integration (PfI) team, like everyone else, has worked hard during this time with resilience and tenacity, going above and beyond what is expected of them. But they also at times felt isolated and anxious, having sleepless nights and wondering if there will ever be a time when things will get back to “normal”.

However, after these long hard months, we must look for some of the positives. There is no point in being inward-looking, we need to acknowledge that this has been hard and traumatic for many people in many ways, but if we don’t acknowledge that, how can we begin to learn and move forward?  Recognition of where we have been is important. Some reflection of the learning is vital but most importantly coming together, being courageous and warmly supporting one another to bravely take those important steps to recovery as one.

Along with many people, the PfI team have had to change and adapt how they have worked. Looking for how they could continue to represent and support the sector from the confines of their own houses. They have achieved this by providing support in a variety of ways to those who needed it across Scotland.  There have been many shared and difficult emotions – some many of us will never forget, yet we have realised how important our relationships are. They are relationships that will carry us through to recovery from this difficult time.

New collaborative relationships have been established; old relationships strengthened. Teams are working closer together with a greater understanding of everyone’s role in that team and we have many quotes from providers and peers that have shone a very positive light on the vital role of the team during this time. Relationships have been developed across Scotland which will last way beyond the pandemic, and we hope will take a different supportive pathway going forward as we look to what the future will bring.

The new different relationships will be what we embrace going forward. They are relationships based on respect and value. The answer was always within the virtual room, and we have grown to discover, realise knowledge and cherish the ability to share across the miles. This must be what we hold onto going forward, this has to be what we build on to create a positive and flourishing future for the sector. No one says it will be easy, but like the phoenix, it’s time to rise!!!

“You’re off to great places, today is your day, your mountain is waiting so get on your way!!” – Dr Seuss

Janice Cameron

Joint National Lead for Partners for Integration

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Care Home Day 21 – A blog from our Membership Support Manager

Membership Support Care Home Day 21 Blog

In volunteering to write a blog for this important day in the Scottish Care calendar – Care Home Day ’21 –  I feel a little underqualified to share my thoughts with you. In part because I am relatively new to social care, or because I only started in the role of Membership Support Manager in February of this year, so what do I know? Granted, I have been with the organization for nearly 2 years in other roles here at Scottish Care, but do I really have enough to say that is important or relevant or valuable that shares how I feel about all of you and the work you do? How you should be celebrated not just on Care Home Day, but every single day of the year, for the work and the service you provide to loved ones everywhere?

One thing I have realized during my time with Scottish Care, that it is not the individual role any of us play that counts; it is all of us as part of the sum, part of the whole, that has kept things going these last 12 months.  By ourselves, we can all do our little bit, but together we can, and we have created a movement. We have created an environment where no one is left behind and everyone is taken care of, no matter their level of need, all are loved and cared for – but often times this has been to the detriment of those who do the caring – YOU the amazing care workers, our incredible members.

It is so easy to say how much we admire you, how you inspire us and how we know the value you bring to the people you take care of. Because it is true. I can only speak to my experience working with all of you and I am in awe. I speak to you every day – learning about your struggles, your challenges, the issues you must deal with daily, especially in this last year when things have been so very hard. I sit in meetings and hear the passion, the spirit, the frustrations, the sadness even – and I truly cannot believe you get up and do this day in, day out, 24/7, 365 days a year.  I try to be creative, solution-oriented, and supportive for you and I always promise if I cannot help you, I will find someone at Scottish Care who can. Because it takes all of us to get to where we need to be – as a sector, as care home providers, as individual care workers, together we are stronger.

I truly believe it is this can-do attitude that personifies social care and all of you who have been working tirelessly in care homes this past year. You care SO much for the residents and their day-to-day experiences. You speak passionately to regulatory bodies, local authorities, HSCP’s, Scottish Government, to anyone who will listen – that this is about the care home being the resident’s HOME, somewhere they need to live with dignity and with love. You advocate for them in ways far above and beyond what some may feel is your role. Why?  Because you CARE – CARE as in CARE home, CARE as in CARE worker, CARE as in CARE home day and CARE as in CARE FORWARD. The skill, talent and dedication you bring to work every day, even those days when you feel you just can’t do it– this is what we must shout to the world! YOU have the power, you have the GIFT, you need to be recognized again and again and again for who you are and what you do – with LOVE, with RESPECT and with DIGNITY for those you care for. Thank you seems so little for all you have done but truly, thank you sincerely for all that you do, for all that you have undertaken this past year and let us hope that this next year will be all about YOU and that you can and should be CARED for too!

Stefanie Callaghan

Membership Support Manager