This week’s blog post is a bit different – it is the text of the address I gave yesterday at the Scottish Care Home Conference. This was the first in person event the sector has held since the start of the pandemic. This address  opened the event.

 

I have always been fascinated by memory – the brain’s power to identity, to store and recall information –how it happens both biologically and neurologically. 

 At a simple level our memory is our capacity to recollect, to piece together our experiences and to try to make sense of them. Memory is both what we remember and the power and process of remembering.  

 It is something which we do at an individual and personal level – recalling moments and times which will always be unique to each one of us. But our memories are also collective – because most of us are continually linked and related to others in the telling of our story. 

 As I was preparing for this first in person care home conference since late 2019 I have been thinking a lot about memories, about the events that have happened during the pandemic, but critically also how we must use those memories to strengthen ourselves to move forward to a future of possibility and hope. How we must use these memories to defend against the assaults on the distinctiveness of social care and the uniqueness of the care home and what that does and can offer to Scotland in the future. 

Memory is interesting – as we grow and develop as human beings it is the mechanism – instinctive and subconscious – that protects us especially from the hurts and hardness of our experience- our brain selects out the memories and moments that are too difficult to keep at the forefront of our mind, there are some memories which we need to compartmentalise to stop us from harming ourselves. 

 We have all of us got those type of memories and many people in this room today have too many memories which in order for us to continue to put a foot in front of the other every day – to even get out of bed every morning – we need to manage and control. 

There is nothing wrong with that – we are hard wired after all to protect ourselves and to move towards wholeness.  

But of course, we cannot gather here today and just think about the future – that would be a betrayal of the women and men who we remembered today, it is a betrayal to not remember them, to act, change and do better for the future.  

 Therefore, today I want us to spend some time recollecting and re-membering the past two years not in order to re-visit that pain – but because I know that we cannot move forward without acknowledging the hurt and the need for healing. But also acknowledge the positive memories in the past years. In the rush to normalising existence we can never deny experience. In the desire for the sunshine of tomorrow we can never forget the painful shadow of yesterday.  

This is important because if we simply store away the past and its memories then our future becomes fragile and fault-full, but if we own and accept the past then our memories, good and bad,  can become an energy towards change.  

Just over two years ago I wrote to many of you asking you to lockdown – a step we took before official Government advice. It was a measure we took because it was the right thing to do in the face of a virus which by that stage had already devastated aged care facilities across Europe. It was a measure necessary amidst the relative lack of priority being given by commentator and politician alike to the care and support of older people – as our TV screens warned us to catch our coughs and encouraged us to protect the NHS.

We then faced two years of real heartache and hardness. By today we have had 5078 die in care homes from Covid19 or suspected Covid and countless more who have died without the contact and normal presence of their families and friends.  

 It has been an imprisoning of love kept distant and isolated from touch and contact. It is they who we first and foremost recall and remember today  

Lives known to so many, names on the tongue of family and staff. Faces no longer seen, smiles no longer there.  

They have gone for ever, some well before their time, some undoubtedly left unnecessarily …  

For care home residents, families, staff, managers and providers the memory of the last two years cuts raw into the reality of pain 

There will be other times and days when in detail I and others will speak about the experience of our care homes during the pandemic and of the lessons we learned, and the lessons others will need to learn and acknowledge. And that story will be told however uncomfortable it will be for the listener.  

It will be a story rooted in the memory of a whole system which prioritised one part over and against another.  

It will be the story of real fear, anxiety and tears at the face of the unknown and the virus we had not understood. 

It will tell of the failure to test at the right time, in the right place, and for the right people. 

It will be the story of disproportionate application of infectious disease management practice appropriate for an acute clinical setting but wholly inflexible for someone’s home within a collective and shared environment. 

It will be the story of a felt sense of abandonment by clinical colleagues as envelopes with death certificates were posted through care home letterboxes, of inappropriate use of DNACPRs, as some but not all hid behind closed door and computer screen to consult and diagnose. 

It will be the story of an avalanche of guidance, often published on a Friday, demanding of an already exhausted and depleted leadership – multiplying into nearly 3,000 separate updates. 

It will be the story of scapegoating and blame, of a frenzy to accuse the ‘private’ sector or just care homes in general for perceived failures. 

It is the story of an unworthy and shameful blame game, a hunt for the data of distress, by the Johnny come lately media, commentators and politicians who previously was deaf to the pleas of the sector and its workers but who suddenly found voice and knowledge, which they simply did not possess. 

It will be the shameful story of a Police and Crown Office investigation, Operation Koper, which unequally targeted care homes and demeaned the professionalism of the nursing and frontline staff and over length of time kept them on the tenterhooks of anxiety, leading some to take their own lives. 

It will be the story of spurious alleged support, originating from political motivation with no real sense of partnership or collaboration, but which in effect in some instances led to the diminishing of the professionalism of gifted nurses and managers, when advice and requirement came from the mouths of those with a knowledge so partial and limited it was deeply offensive to the uniqueness of the care home environment, and all at the cost of £22 million and counting without any evidence of benefit or evaluation of competence. 

It will be the story of disproportionate risk aversion which believed it was possible and desirable to isolate an individual with advanced dementia in their own room, which limited the access of family and friends, which prioritised the risk of the virus over and against the psychological, physiological and emotional risks of absence and isolation, of protection and trauma.  

It will be the story of the failure to test intervention and action against a robust human rights assessment for each and every woman and man who was a care home resident. 

Memories abound in this room of so much that has been a mark of our collective failure as a whole system of health and social care to respond as we should have and even today to do what we should be doing in the face of this pandemic.  

We can choose to ignore those memories and to use the excuse of hindsight, the refuge of those who fear owning their failure, or we can be open and honest and together move on, not castigating others for their honest mistakes however well-intentioned, but recognising the limitations of our collective response.  

To re- member is to heal – so let us begin to heal as a community –  

But memory is not just about the pain and raw emotion and the loss we have endured and experienced, none more so than family and friend. It is also about holding before us the moments and times, the women and men who have shown us the better side of our humanity and evidenced real courage and dedication. 

When I think back I cannot but put front and foremost the astonishing professional sacrificial dedication of countless thousands of frontline carers who have worked through this pandemic. It is they who got out of bed every day and despite fearing for their own safety and the safety of their families to whom they would return – who put themselves at risk from this pernicious virus; it is they who in some care homes moved into the care home for days and weeks on end simply to be present and to protect;  it is they who witnessed in some instances the devastating loss of people they not only knew as residents but as friends who they had grown to know and love, but it is also they who were there when others had been denied presence, to comfort and to console; it is they who did multiple shifts to the point of exhaustion because colleagues were absent or isolating, and spent their energies in the service of others; it is they who embodied the truth of what compassion and care is really all about. They have been and are the best of us. Yet today so many of our colleagues are drained and tired, exhausted, and burnt out. 

When I think back, I think of the astonishing real partnership work in some parts of the country between primary care and nursing colleagues who rolled up their sleeves and worked alongside care staff in care homes, learning from, respecting and listening. And especially I would call out with the deepest respect our colleagues in the palliative and end of life care community and so many of our pharmacy colleagues. 

When I think back, I will remember the professionals at NSS and elsewhere who within days organised a PPE response system- based on real partnership working, which made a life-saving difference to so many, not least as so many orders were purloined elsewhere.  

When I think back, I will remember the astonishing work of those who brought the hope of vaccination into our care homes and communities and the volunteers who were part of that effort. 

Memory can give us the energy not simply to piece together the pain but to root us in an earth from which to grow hope and new direction. 

The theme of today’s conference is Care chrysalis – at a very simple level you will know that a chrysalis is one of the stages in the creation of a butterfly – the transformation from egg to caterpillar to chrysalis and, finally, adult butterfly. A chrysalis is a transitional stage – still linked to the past but inexorably moving forward to re-birth and new beginning. 

Care is at a point of chrysalis, care homes are at a point of potential if only it can be recognised and tapped, rather than limited and ignored.  

This is the transitional stage where the memories of the past, the good and the bad, the failures and the successes, can form together to become the energy that creates a better future, and a more compassionate, rights-based, dignity infused care home sector of tomorrow. 

Today there will be much talk of reform and renewal, of the National Care Service and later today of finance and resourcing, but I want to leave you with just a few thoughts of what that future needs to look like; what that chrysalis needs to be. 

Firstly, in creating a National Care Service, I hope we don’t. I hope we will be creating a National Social Care Service.   

In times of emergency response, it is understandable that we have had to be reactive and responsive, but social care has never been in the same way that healthcare – narrowly defined is – an emergency service or response. Social care has many definitions, but I cherish the one we have used at Scottish Care for a few years, namely that, it is : 

‘The enabling of those who require support or care to achieve their full citizenship as independent and autonomous individuals. It involves the fostering of contribution, the achievement of potential and the nurturing of belonging to enable the individual person to flourish.’ 

Any new care support service must be rooted in the enabling of every citizen regardless of age or infirmity to achieve to their full citizenship, to enable their voice to be heard, their wishes addressed, and their hopes achieved. This is never about doing for but enabling everyone to live life to flourish. We cannot, must not allow a creeping clinicalisation or medicalisation of social care to go unchallenged.  

Secondly, that we learn to re- emphasise the ‘home’ within our understanding of care homes more than anything else. 

We have spent years arguing that care homes are first and foremost someone’s home. Bring your own furniture and belongings – make this space your place. Be at home. Be in charge and make the decisions. We need to re-discover that strength.  

Care homes are places for living life to the full, not clinical aseptic wards but locations for loving, living and discovering. They are places alive with conversation and gossip, with laughter and tears, with entertainment and activity. They should not be silent shells echoing with absence or detachment, neat and tidy like a starched ward, but busy, messy, disorganised locations because they reflect life and love in all its contradictory glory. 

One of the last conversations at an event I went to before the pandemic was with a man in his seventies who had felt he needed to hide his sexuality for most of his life, and he was speaking volubly and movingly about how it was in the care home for the first time he found people who had accepted him for who he was, and that he was able to come out as gay in his seventies, that he was able to live at last without the need to wear a mask of pretence. I’ve had the privilege of being with many people through palliative and end of life care in a care home who have discovered their authentic selves, often for the first time.  

That is what a care home is – not a place of brick and mortar, of forms to fill and checklists to live by, but a place of life and loving, of joy even in frailty and decline, of changing and growing, of creativity and self-discovery – until the very last breaths of life. 

Thirdly, in this care chrysalis, we need to see care homes as places of partnership and collective togetherness.  

I long for the day when the professionalism, the expertise around older person care, around advanced dementia and frailty, around delirium and palliative and end of life care, around behaviour management – all of which are valid descriptions of the distinctiveness of care home nursing and care – are appreciated and valued by those outside the sector. I want to see older person’s nursing as a taught speciality.  

To achieve that now and into the future there is a demand for mutual respect and professional integrity. We cannot build a future rooted in the biases and prejudices of the past. Trust has to be re-discovered along with respect and regard because at the moment it feels solely missing. Partnership does not just happen – it must be worked at. 

That also means that we have to recognise what we do not know, to learn to talk and listen to one another across the whole system – but that critically involves the third and independent sector being at the table – not treated like recalcitrant teenagers by mum and dad statutory sector. Delivering truly integrated services and supports cannot happen with those who do the work outside the room of decision-making and influence (not unlike Victorian children being out of sight and out of mind) because of the power defensiveness of the parents.  

And the re-discovery of partnership is equally true of the relationship between staff and managers with family and friends. We need to move on from the hurt created by pandemic response into a relationship where we recognise the unique and distinctive central contribution of all in the wrap around care and support of the resident. This should never be a state of opposition and disagreement, but an encounter and exchange of consensus and collaboration. The work together around Anne’s Law especially if it is human rights focussed gives us all a great opportunity to work together.  

Fourth, in this chrysalis towards the new – we have seriously and finally to stop just using the rhetoric of value and respect but to finally begin to change the system so that we properly reward, compensate and pay our frontline workers. We have to be realistic and serious about adequate resourcing.   

Any society seeking to create a care system for the future which is worthy of itself as a nation cannot do so on the backs of the women and men who deliver frontline care and who work as managers and nurses.  

We need to replace the language of what we can afford with the language of what we must do to deliver a professionalised, well resourced, trained and reflective, autonomous workforce for a new age. 

There is great potential for real multi-disciplinary working across homecare and care homes, across primary and community care and social care – if only we overcome defensiveness and address inequality.  

Let us re-shape social care with care homes as an intrinsic part of the delivery of a holistic model of care support.  

Lastly, I hope our care chrysalis accepts the truth that if we are to create a world leading National Social Care Service which is a real inheritance for the hurt and sacrifice of the last years, that we cannot achieve this vision with an approach to resourcing and funding which belongs in a bargain basement.  

Let us get rid of the language of ‘what we can afford to do’ and start talking about what as a civilised, modern, progressive nation rooted in the values of social justice and human rights needs to do and is determined to do to deliver the highest quality care and support, which gives real choice and autonomy to citizens, and which becomes the envy of all around. 

Too often we have a debate about the cost – but we cannot afford not to be better than we are, not to resource greater than we have done, not to reward higher than we do.  

The chrysalis time is an opportunity for us to create a better future for all who come after us, it is a time when we can take the memories of the past, heal the hurt and give ground to the hope and vision, we are at such a time. 

Let us therefore work together, heal together, restore together – let us journey into the future, rooted in the memory of the past and consolidated by the memory of the dedication of the last two years, and let us create a future built on an open compassionate care which is in summary the best description of the best of us in our care home sector and always has been. 

Thank you. 

 Dr Donald Macaskill 

 

 

 

 

Today is World Purple Day. It is also known as Epilepsy Awareness Day and is celebrated annually on March 26th. In 2008, eight-year-old Cassidy Megan from Canada decided she wanted to help raise awareness for people with epilepsy and to make sure no one affected feels alone. She named her idea after the colour of lavender, the internationally recognised flower for epilepsy, and Purple Day was born! Sadly, only Canada officially recognises the day yet it is growing in popularity across the world. See https://www.purpleday.org/

The purpose of the day is to raise awareness about the brain disorder that is epilepsy. Epilepsy is defined as the tendency to have repeated seizures which start in the brain. It is also an opportunity to increase understanding of the disease and to eliminate the fear and stigma which is often still around it.

In Scotland according to the national body Epilepsy Scotland, children and older people are most at risk of developing this common serious neurological condition but anyone can develop epilepsy at any time, and eight people a day in Scotland do. These are huge numbers and yet I suspect many folks are not aware of this. Indeed approximately 55,000 people in Scotland are living with epilepsy, making it one of the most common chronic neurological disorders. It is therefore more common than people in Scotland who are living with Multiple Sclerosis, Parkinson’s, Cerebral Palsy and HIV combined.

Epilepsy Scotland do a great deal of work not least in campaigning for increased clinical and community support, increased training and expertise and critically the improvement of data collection, so we get a better picture of the extent of epilepsy and its impact in modern day Scotland.

I share a belief together with many in the field that more needs to be done to better support and make others aware of the impacts and extent of epilepsy in older people. I remember the first time I worked in a health and care environment and someone living with epilepsy had a ‘seizure’  – the alarm, uncertainty, and anxiety of those around was deeply regrettable including from myself. I am not convinced a few decades on that we have moved much more forward to an informed and inclusive approach.

Epilepsy Scotland have a hugely helpful website with fact sheets which can answer some very basic questions. Some points to note (amongst many) include:

• No two people experience epilepsy in exactly the same way. For one person, epilepsy can mean complete seizure control on medication. For another, it can mean uncontrolled and frequent seizures despite medication.
• A diagnosis of epilepsy can have life-changing consequences. These can include the loss of a driving licence, reduced independence, and disruption to employment. It can also affect someone’s education and employment prospects, and lead to an increased degree of social isolation and depression.
• A seizure is a sign of temporary disruption to the brain’s electrical activity. If there is excessive electrical activity in the brain it can cause a seizure.
• There are around 60 different types of seizures and epilepsy syndromes, and a person can experience more than one type. Seizures vary depending on where in the brain they are happening. Some people remain aware throughout, while others can lose consciousness.
• Seizures are generally divided into two main types, focal seizures and generalised seizures.
• As many as one in 20 people will have a one-off seizure in their life. However, this does not mean they have epilepsy.

There is a growing volume of research which argues that there is need for a particular focus both in policy, practice, education, and research on the impacts of epilepsy in older age.  One of the most significant pieces of research is that published by Prof A Sen in the Lancet in 2020 Epilepsy and the elderly Lancet revised final.pdf (ucl.ac.uk). It clearly states that as more and more individuals are living longer and into older life the occurrence of epilepsy in the older population is likely to increase. This they rightly argue requires substantial work around the impacts of particular pharma interventions on this population and argue that more work needs to be done on the range of cognitive, psychological and psychosocial comorbidities as well as the impact that epilepsy may have on an older person’s broader social/care network. I would add that there is considerable work needed to be undertaken on the specific inter-relationships with dementia and delirium especially amongst older women.

The lack of robust, national and strategic research on epilepsy ij the older population is yet another illustration of the extent to which on the one hand epilepsy research is under-funded and on the other the lack of priority given to health impacts on older people in general, a latter point I have frequently made in this blog.

We need to get better at supporting older people to live with epilepsy whether it is a condition developed during older age or into older age. That involves those with a particular focus on older people’s care and support becoming much more aware, better informed and more skilled at caring for, supporting and enabling people with epilepsy whether in homecare or care home environments. I strongly believe there needs to be a national dedicated resource and effort made to address the experience of so many older Scots living with epilepsy, and to reduce some of the concerns and alarm, lack of knowledge and stigma which can result in inappropriate behaviour, language, practice and response.

Today as World Purple Day should be used as an opportunity not only to raise awareness but to ensure that action results in order to reduce yet another area of health inequality for older Scots.

As regular readers know I often finish a blog with a poem and it would simply be too easy to repeat my often used Jenny Joseph classic ‘When I am an old woman I am going to wear purple.’ But there is a similar poem which celebrates the passion and unpredictability of older age by the irrepressible Dorothy Parker which I leave you with. It like the choice of lavender by young Cassidy Megan is about turning the tables of expectation, challenging stigma and limitation, and about recognising that life continues until it ends. We owe it to those young and old who live with epilepsy to try to create a country where we don’t just wear purple for a day but change the way we support one another to live our lives to the fullest possible extent.

The Little Old Lady in Lavender Silk

by Dorothy Parker

I was seventy-seven, come August,

I shall shortly be losing my bloom;

I’ve experienced zephyr and raw gust

And (symbolical) flood and simoom.

 

When you come to this time of abatement,

To this passing from Summer to Fall,

It is manners to issue a statement

As to what you got out of it all.

 

So I’ll say, though reflection unnerves me

And pronouncements I dodge as I can,

That I think (if my memory serves me)

There was nothing more fun than a man!

 

In my youth, when the crescent was too wan

To embarrass with beams from above,

By the aid of some local Don Juan

I fell into the habit of love.

 

And I learned how to kiss and be merry- an

Education left better unsung.

 

My neglect of the waters Pierian

Was a scandal, when Grandma was young.

 

Though the shabby unbalanced the splendid,

And the bitter outmeasured the sweet,

I should certainly do as I then did,

Were I given the chance to repeat.

 

For contrition is hollow and wraithful,

And regret is no part of my plan,

And I think (if my memory’s faithful)

There was nothing more fun than a man!

 

From The Little Old Lady In Lavender Silk by Dorothy Parker – Famous poems, famous poets. – All Poetry

 

Donald Macaskill

I’ve written before in this blog about the fact that English was not my first language and that in my early days at school I struggled with language and in part as a result lacked confidence both in the use of English and as a result in some of the subjects I was taught in early primary. I always felt that I wanted to finish every sentence with a verb or adverb just as in Gaelic!

That lack of confidence began to change because of the inspiration of one or two individual teachers not least those who showed me that the world didn’t have to be boundaried by the tightness and restriction of prose, by the starchiness and structure I then felt it imposed, but that there was a dimension of the imagination and a world of possibility which was the realm of poetry. From very early on poetry became my love, energy and inspiration. It has thankfully remained so for most of my life since.

On Monday we will be celebrating World Poetry Day. It is 21 years since it was established by the United Nations Educational, Scientific, and Cultural Organization (UNESCO) in 1999. Two days later- the 23^rd March will be the second anniversary of the Prime Minister’s speech which that evening put the nation into lockdown as we confronted the unknown fear and anxiety of a novel coronavirus for which we had no vaccine and about which we had in relative terms little knowledge.

I remember that evening well, and after all the organisation and calls, all the emails and bits of work I had to do, as I would on quite a few evenings after and still do, I took myself away and sat in a quiet room with a book of poetry. Poetry became for me both an escape, a consolation, a comfort and a challenge. I know I have not been the only one who has discovered or re-discovered a love of poetry during the period of the pandemic, and no doubt as I reflect in a moment of peace on Wednesday the events of the last two years, I will again do so with the words of one or more poets in my head.

I’ve often sat down and wondered why it is that poetry matters so much to me. Undeniably it is in part tied up with the discovery as a primary school child that in poetry that words and language were malleable and playful, that you could use and do with them as you wanted and wished, and that rules could be broken without meaning being lost. Poems were a form that offered freedom and possibility. But there was more. Probably it is poetry’s ability to describe intense emotions which is what rooted the genre in my soul and psyche. I think it is poetry’s ability to paint truth and insight in word and rhythm that for me is the very essence of poetry, and I think that’s why I still believe it has something to still teach me today not only about the pandemic but about how I need to live in the days and years ahead.

It is generally acknowledged that the first poems appeared in ancient Babylon some 4,000 years ago in the “Epic of Gilgamesh” which coincidentally I would later study at university. But in all likelihood probably from the moment someone used sound to structure sense, words to offer dream and meaning, poetry has been in existence both orally and in written form. The genre is so diverse from Shakespearean sonnets to free verse, from haiku to rap, from song lyrics to limericks. Poets have found a way to tell something of the story of their times, of their communities and society. Poetry has stretched our imagining into new visions, has helped to express the depths of pain and loss and has soared the heights of love, desire and passion. There is quite literally a poem for every emotion and feeling, every season and moment under the sun.

One of the reasons it appeals is that for me poetry is inherently rhythmic and musical, it is dynamic and energetic. I need to either hear a poem spoken aloud or hear it inside my head because it has an energy that struggles to free itself from the confines of a page into the air of my imagination. Whether it is an Angela Gorman, or a Benjamin Zephaniah or my all-time favourite Maya Angelou – poetry can become a performance which is an art in its own right; an experience separate from the words you take inside yourself. A good poem takes me on a journey whose destination is unknown but whose companionship is assured and confident.

I know I was lucky. Unlike so many children who have been put off poetry by the way it was taught – I was the opposite – I was inspired because as luck would have it I had teachers who brought poets to school, to inspire, encourage and enliven bored school children. I think every school should have a poet, whether in residence or not! Poetry helps to improve the ability of children to express emotions that might be locked in and imprisoned deep inside them, to find new rhythms and meaning, new insights and freedoms. It certainly did for me.

Poetry allowed me during the pandemic to see the world through different eyes, to see possibility rather than just pain; to find words to express my fear and my deepest sense of loss and sadness. I could never have found the energy which has kept me going were it not for the fact that someone before me, alongside me, has done that job for me and has gifted their insights through their poetry to make life better and richer.

Years ago when I was visiting a care home where someone I knew was a resident I came across Jean who I later discovered was a retired English teacher. She was living with what I would now recognise as advanced dementia. She had lost all memory of family and loved ones, had forgotten basic things and the knowledge of what actions to take in particular circumstances. To all intents and purposes, she required the most basic level of personal care and support. But… Jean continually and assuredly recited poetry to anyone who would listen. And I did. And from those lips tired of speech, having lost recognition of love, came tumbling words in rhythm and beauty, consistent in memory and recall. She was a marvel – when everything else had left her, her comfort were the words of the legion of poets she had gathered into her heart over decades. For me in that moment the sheer power of poetry to own and occupy our hearts was made visible.

On the night of the 23^rd March 2020 I read words of one of my favourites, the Irish poet Derek Mahon, whose work I have shared here before. It was a night of anxiety and the unknown was palpable, and the words of two others came to my mind. The first was a very ancient piece from the medieval mystic Julian of Norwich who wrote in the face of both danger and challenge, ‘And all will be well”, “all manner of things shall be well”; the second the words of Bob Marley. I grew up with the music of Marley ringing in my ears every time I fell asleep such was my late brother’s fascination with him. Indeed, my brother’s gravestone has inscribed on it the words, “Don’t worry about a thing’ Cause every little thing gonna be all right.’

I turned to the poetry of Derek Mahon. Frequently challenging and uncomfortable and as I read it at different points during the pandemic it seemed at times almost cold and then at other moments reassuring – but that is a mark of great poetry it speaks differently at diverse times and in distinct circumstances.

Poetry does not have all the answers it just provides us with the silence to make sense of the sounds and the sounds to make sense of the silence. It takes us further along the road and it is usually a journey worth taking.

Everything is Going to be All Right

“How should I not be glad to contemplate

the clouds clearing beyond the dormer window

and a high tide reflected on the ceiling?

 

There will be dying, there will be dying,

but there is no need to go into that.

 

The poems flow from the hand unbidden

and the hidden source is the watchful heart.

 

The sun rises in spite of everything

and the far cities are beautiful and bright.

 

I lie here in a riot of sunlight

watching the day break and the clouds flying.

 

Everything is going to be all right.”

 

Derek Mahon, from Selected Poems

Poetry Corner – Derek Mahon ‘Everything is Going to be All Right’ – Infinite Harmony

 

Donald Macaskill

Along with many others I signed a letter this last Thursday which was sent to the UK Prime Minister and the United Kingdom Government. Key organisations working with and for older people throughout the UK came together to call on the Prime Minister to take further action to support older people in the Ukraine, and those seeking refuge in other countries, and to ensure that our response to the escalating humanitarian crisis takes account of the specific impacts and challenges older people will face.

As we have witnessed the increasingly distressing images of war from Ukraine many of us have felt helpless as we have heard the stories of children, young people and women, to say nothing of the men staying behind to fight and defend. A voice rarely covered in the stories has been that of older people and those with conditions which limit their ability to flee and escape easily.

The joint letter sets out the action required, highlighting that many older people in Ukraine will be trapped and isolated in their homes, with limited support available from families, friends and neighbours, as they will be unable to make the treacherous journey towards safety due to limited mobility or ill-health. As well as expressing real concerns over food, water, and other supplies, we have also called in the letter for the removal of visa restrictions to ensure that more older people are able to find safety and sanctuary in the UK. This includes a call to:

• Use all possible avenues to ensure that humanitarian access is given to all civilians in Ukraine, including older people.
• Ensure that explicit attention is given to the needs and rights of older people in Ukraine and surrounding countries in preparing and implementing the humanitarian response with other national governments and international organisations.
• Ensure older people in Ukraine or those seeking refuge in neighbouring countries have access to appropriate medical supplies, medication and mobility aids through donations, funding or the sharing of technical expertise.
• Remove the visa requirements on Ukrainians fleeing the war to ensure that older people without relatives in the UK are able to seek refuge here.
• Consider the needs and rights of older Ukrainians who are seeking refuge in the United Kingdom and what support they may need upon arrival.
• Continue to provide support to charities involved in the humanitarian response including HelpAge International and Age International to ensure that they and their partners can provide the crucial support that older people in Ukraine desperately need.

Can I also draw attention to the amazing work of Age International who have set up a dedicated fund to support older people in Ukraine. Please consider giving a donation and you can get more information at https://www.ageinternational.org.uk/donation/ukraine-appeal/#step1

A colleague wrote to me yesterday to highlight that the national flower of Ukraine is the sunflower which has become a sign and symbol of hope amidst the trauma. In a lovely gesture his Edinburgh company Home Instead are giving sunflower seeds to people to plant hope into the hard ground, and also giving a donation on their behalf to  Age International.

I have often said in this blog and elsewhere that the mark of any civilised society is the way in which those without voice are heard, that we witness equality of treatment and response regardless of age, and that we recognise the particular and especial needs of those who are frail, elderly, and old.

Those sentiments are very much in my mind as this weekend we mark several anniversaries of the Covid19 pandemic.

Two years ago the World Health Organisation (WHO) officially declared COVID a pandemic and in that time an estimated 6 million plus people worldwide have died from COVID-19, while nearly 448 million cases have been recorded. The vast majority of those who died were older individuals but more positively it is estimated that almost half a million people aged 60 plus were saved due to vaccines against COVID-19.

Today also marks the two-year anniversary that many care homes went into voluntary lockdown in Scotland in response to the pandemic and evidence from Europe and tomorrow (13^th) two years ago saw the publication of Scottish Government Guidance on managing the coronavirus in care homes and other settings.

A lot of hurt and pain, sadness and regret has happened since. Too many lives have been lost and to many memories have not been shared. Too many people have spent their last days in hospital or care, both from Covid and other conditions, without the presence of those they love beside them. The public inquiries – including the UK one whose terms of reference have been published this past week – will, I hope, give space and opportunity for people to tell their story and share their experience as well as to hear an account of clinical, political and system response during the last two years. But for so many the pandemic even on this two year anniversary is far from over.

In the last week right across the United Kingdom we have seen a rise in cases of Covid, a rise in hospital and ICU admission, a rise in the number of care home staff and residents who are contracting the virus and sadly a rise in the number of care home residents dying from the virus. These are hard times.

On the one hand we want all of us to nurture the restoration of normality not least in terms of care home visiting and access to families recognising the huge damage that has been done by disproportionate exclusions, by limiting the quality of life of residents in such drastic ways, but on the other there is a growing fear about what the virus will do in the next few weeks and months. Will it ‘burn itself out’, will there be diminishing impact, or will there be increasing numbers of cases, more lockdowns, more damaging isolation periods insensitive to the particular needs of residents, families and staff? Will there be a new wave and if so, will it as some argue be less of a threat or will we see a strain developing which escapes the protections we have. This last week we have seen the start of a fourth vaccination round which most would agree is very necessary as increasingly those admitted to hospital are older people whose immunity and protection is depleting following their 3^rd vaccination some months ago.

I do not have black and white and hard answers to most of these questions and suppositions, but as we approach the second anniversary of so much pain, I am very aware that we need collectively to not just learn the lessons of the past but to make sure that those lessons alter our actions into the future.

No more lockdowns in the name of infection, prevention, and control, which are disproportionate, insensitive to the trauma which isolation causes, and blunt in its use as an instrument of protection.

Let us re-define what we mean by an ‘outbreak’ so that living with the virus means that we will not constantly see the cycle of infection leading to perpetual exclusion and isolation.

Let us remove the use of masks to all but a minimum of high-risk situations.

Let us use testing in the short term as a safeguard and be prepared both to increase but also critically to decrease its use.

Let us urgently get Public Health advice which is reflective of reduced risk rather than which continues to increase the risk of individual harm. We need infection prevention control approaches which embed human rights and person-led care and support.

Let us find a collaborative way of working together, families and advocates, residents and staff, managers and providers, clinicians, and public health, so that in community and care home, we take control over from national ‘guidance’ and instruction and enable local decision-making.

Let us get real about what we mean by public assurance and stop victimising care home professionals by using disproportionate scrutiny and fallacious ‘support’; let social care take back the ground of compassion stripped from it by others in the name of oversight and regulatory expertise.

Let us restore the trust in the professionalism and skill, the compassion and care of frontline nurses and staff, rather than denude their integrity even further by spurious politicised interventions.

Let us begin to value the story and life of every resident and let care homes start to be homes again and avoid the creeping clinicalisation of places which have the very real potential of bringing life to fulness.

Let us find our way back to hope and celebration, to community and integrity.

Let us plant a sunflower of hope to shatter the dismay and hurt, and to bring forth healing and togetherness.

As we stand on the edge of the third year of living with Covid let our future be markedly differ from our past. Whether in the Ukraine or in our own communities, let us stand in solidarity with older age, rather than the pretence of care and support whilst in truthful reality we walk by on the other side.

Donald Macaskill