The pain of separation: are we creating an abnormal normality?

When I was at school my English teacher brought many poets to come and read to us. I probably didn’t appreciate then just how lucky I was. I do now. I can remember many and have forgotten more. But one I will never forget because he spoke in the timbre of my own first tongue with a rhythm I related to and a language I felt inside me was Norman MacCaig.

He wrote:

Aunt Julia spoke Gaelic
very loud and very fast.
I could not answer her —
I could not understand her.

She wore men’s boots
when she wore any.
— I can see her strong foot,
stained with peat,
paddling with the treadle of the spinningwheel
while her right hand drew yarn
marvellously out of the air.

Hers was the only house
where I’ve lain at night
in the absolute darkness
of a box bed, listening to
crickets being friendly.

She was buckets
and water flouncing into them.
She was winds pouring wetly
round house-ends.
She was brown eggs, black skirts
and a keeper of threepennybits
in a teapot.

Aunt Julia spoke Gaelic
very loud and very fast.
By the time I had learned
a little, she lay
silenced in the absolute black
of a sandy grave
at Luskentyre. But I hear her still, welcoming me
with a seagull’s voice
across a hundred yards
of peatscrapes and lazybeds
and getting angry, getting angry
with so many questions unanswered.

Norman MacCaig’s ‘Aunt Julia’ is now one of the poems taught in Scottish schools as part of the exam curriculum. I’ve always loved it. Aunt Julia lived on Scalpay on a croft not unlike that of my own family on Skye. She only spoke Gaelic and no English. Again, something that resonates with me as I only learnt to speak English ‘properly’ after I was five. She reminds me of my Aunt Effie in black boots and black skirt, whose apron painted a canvas of egg stain, peat and flour. Even though they could not share a language MacCaig adored his aunt, as I did mine. In words of poignant regret, it was only after her death that MacCaig learnt enough Gaelic to have been able to communicate with her. Now she is absent, his questions lie unvoiced and unheard. There is a separation that nothing can bridge. So many questions unanswered and he is angry.

To be absent from the hands that caressed you every day of your life; to be invisible to the face that woke your dawn with a smile; to be silent to the lilt of voice that spoke as music in your ears; to be distant from the touch that cradled your pain and held your laughter … that is separation.

To be separate from those we love and those whose bone has become the very marrow of our being is an ache which can never be put into words or remedied with any solace. If one has power over it happening, it can only be a conscious and deliberate action if it is for the protection of that very love whose absence creates ache and tear.

This week I want to write about separation.

Getting the balance right between keeping people safe from a pernicious virus and enabling individuals to be restored to the fullness of relatedness was never going to be an easy task. I have been reflecting on whether or not we have got this balance right in the last week partly because of a mounting unease within me and partly because of the tear-inducing correspondence I have been receiving, I have read so many Guidance documents and suggestions from across the world about how it is possible and what steps have been taken to restore a balanced safe normal to older people’s residential care including this week taking part in an international conversation.

I have written before that I think the early measures taken to exclude visitors and shut down our care homes were entirely legitimate and proportionate because the threat of the virus to life was self-evident. It was not an easy thing to do but restricting people’s human rights was acceptable and the right thing to do at the time. As we began to understand the danger of asymptomatic transmission, as a nation we have escalated testing of staff to the level it is now, and we have used PPE, especially masks, to the level we now do. As a result, and because of the wider actions of others in lockdown we have significantly diminished the impact of the virus though as witnessed in the last few days the virus is still present and can tragically still take life in care homes and community.

Last Thursday was the 25th week since the start of lockdown. In the last few weeks we have introduced visiting outdoors and then extended it, started visits indoors and on Thursday there was an announcement about the return of visiting professionals and the greater use of communal space.

But 25 weeks on it is still the case that thousands have not been able to meet up because of the restriction on numbers and the capacity of care homes to staff and supervise visits, because of the Scottish weather and more recently because of local lockdowns and decisions to close care homes to visitors.

There is now a growing anger in the wider care home community about the proportionality of many of the restrictions which in the initial Guidance seemed appropriate. People are weary of being separated and they are struggling to see the justification for what they perceive to be a disproportionate removal of the rights of those in care homes. I have reflected elsewhere about how we have failed to adequately hear the voice of residents and are increasingly, I am afraid, diminishing the human rights of citizens with capacity who happen to reside in a care home by failing to allow them to take decision and action in an autonomous way.

If some form of separation is necessary for protection then the way in which we do it simply has to change.

We have to get better at including and involving families not just to help them understand what Guidance says but to take control and co-write that Guidance so that they are more in control of decisions. Family members are not visitors into the lives of their loved ones they have the right to do be present (with consent) and no-one should diminish that right over such a long period of time without the most profound justification. Clinical paternalism, public health risk aversion or political caution have their place but we must also find a space for the exercising of the rights of residents with capacity to knowingly take control of their decisions and the risks they wish to take providing others are protected. We are witnessing on a daily basis that people are switching off their lives having decided that there is no point in living in this twilight existence of separation and absence. The distressing effects on the mental health and wellbeing of residents and family members alike is  a scandalous trauma.

We have to become more proportionate in the rules and requirements we make. I have yet to see any clinical or scientific reason why a family member wearing appropriate PPE cannot sit alongside their loved ones and hold their hand or stroke their face or feed them their meal. We have to encourage protected touch rather than strip physicality away from encounter.

We have to banish the distance of togetherness by removing the 2-metre distance requirement when people wear appropriate PPE. If a professional carer can be close then why can family not do the same?

We have to get to a stage where we prioritise the new faster tests that are being developed for family members seeing them as critical and essential key workers in the lives of their loved ones.

We have to extend the time that family can be together and get to the stage where there is more control for individuals.

We have to restore privacy to individuals so that they can meet and be together without supervision or oversight. Care homes are not prisons nor are care staff wardens for the behaviour of others.

We have to allow people to go out in the community and not expect them to isolate themselves for fourteen days when they come back to their own home. Which one of us would go out to the shops or for a meal and then imprison ourselves for fourteen days?

There is, I believe, much more that we can and must do. It is clear that we will be living with the pain of separation for some time. We can lessen that pain by ensuring that the times of togetherness are as normal and as natural as they can be. At the moment I fear we have simply created an abnormal new normal.

Donald Macaskill

 

 

The silence of absence:  reflections for National Grief Awareness Day.

In life if we are lucky we are sometimes fortunate in meeting people whose words and insights resonate with our own. For me one such individual was the Irish poet and philosopher John O’Donohue who I had the good fortune to hear and meet on a number of occasions. His words both in prose and poetry speak to me with an insightfulness on the subjects which matter most in my life and with a wisdom which few have equalled since. In particular O’Donohue in his writings on grief and dying seems to reach deep into the truth of the universe. In ‘For Grief’ he writes:

“When you lose someone you love,
Your life becomes strange,
The ground beneath you becomes fragile,
Your thoughts make your eyes unsure;
And some dead echo drags your voice down
Where words have no confidence
Your heart has grown heavy with loss;
And though this loss has wounded others too,
No one knows what has been taken from you
When the silence of absence deepens.

Flickers of guilt kindle regret
For all that was left unsaid or undone.”

Tomorrow is National Grief Awareness Day. It is also the day when I will remember the 10th anniversary of the death of someone very special in my life and to those I love. It is a day when I will reflect on my own memory and silence. A day when rushing into my heart will be all those words unsaid to all those absent from my living but not my loving. So, I hope you will forgive me if I reflect today on grief in these strange times because it has been much on my mind this week and it is something which is troubling me more and more. This is the case because virtually every day this past week I have received two or three heart-rending emails from family members of people who are living in care homes under continued restriction. We grieve not only for those who have died but sometimes for those who are living.

Over the years as I have grown to know more about dementia both professionally and personally I have understood the aching truth that even before the death of a loved one we start the walk of grief, that we acclimatise ourselves to the increasing fragments of connection as the disease turns our beloved into a shadow of themselves. It is not that we ‘lose’ the person and give up on them. They are still there, locked inside the shell of flesh which imprisons their smile and happiness. We still want to be present to re-connect, to mirror memory and to soothe distress. We never give up on the yearning and hope for that spark of the old and familiar. People have described these feelings as a waking death – witnessing our loved one slowly slip away from the grasp of your togetherness. And in such times we prepare for the parting; for the time without, for the emptiness and the ‘silence of absence’.

The peculiar sadness of these days is that because of the ravages of Covid there are countless hundreds who are not able to be close with those they love, who are shut out on the other side of doors and windows, waving at their loved ones, shouting across two metres unable to be heard and to be understood. This is heart-breaking to endure and hard to witness and watch. The sheer agony and pain I have read and heard in the weeks that have passed has changed all of us and yet I despair at the casual behaviour of others routinely returning to ‘business as usual’ without recognising the silent pain happening in our midst.

It is not that people, from clinicians to carers, from politicians to policy makers, are not sensitive to the hurt. We are all trying to feel our away through this unknown to get the balance right between protecting people and keeping them safe and restoring the relationships which are intrinsic to who we are as human beings. Personally I am convinced we must find better ways in which we can increase that togetherness, where families are not allocated slots of time to enable their love to be shown; where through the use of testing and PPE we allow people to be held, to hug and to feel love through their touch one with the other. Our detached observance of our mutual love cannot remain as the new model of our being with one another. For so many the aloneness of grief is being felt now as lives slip slowly through their fingers, as loved ones change in sight of but beyond family comfort. This is a grief made real.

But as I think about our National Day of Grief tomorrow I am also mindful not just of the pain in our care homes but the real sense of emptiness being felt by many thousands across Scotland at the present time. Yet so few are talking about this hurt – it is almost as if it is too painful for our society to talk openly about what and who we have lost.

Yet again in the past week I have heard and spoken to those doing amazing work to support others through their bereavement – this time the remarkable Macmillan supported bereavement project and work at Glasgow Royal Infirmary. Bereavement support and services have always been delivered in a patchwork manner across Scotland with some astonishing work being undertaken by a range of organisations. As a society we have through Covid experienced real change and trauma and I think that urgently we need to prioritise the funding and mainstreaming of bereavement support so that it is embedded as a strategic priority for and part of who we are as a community. Sadly, not everyone can do the work of grief on their own, some of us need support to put together again the broken pieces of our heart. We need to get better as communities in ensuring that such support is there for individuals. Becoming more confident about talking about death and dying might just be one of the legacies of the pandemic age we are living in, but such articulacy must also be accompanied by a societal willingness from political leadership down to local communities to resource and prioritise the provision of bereavement care and support.

O’Donohue speaks of the way in which with time, care and compassion, after being held by others we come to live with our grief:

“Gradually, you will learn acquaintance
With the invisible form of your departed;
And when the work of grief is done,
The wound of loss will heal
And you will have learned
To wean your eyes
From that gap in the air
And be able to enter the hearth
In your soul where your loved one
Has awaited your return
All the time.” 

I hope on National Grief Awareness Day more and more of us will be able to wean our eyes ‘from the gap in the air’, but we also need collectively to remember, support and be present for those whose pain is raw and real and whose tears are still wet. We need to own the anger and hurt before we can change and move on. Grief is something we work at and do – it is as hard a labour as we will ever encounter but ignoring the pain will just serve to deepen the emptiness. Part of that work in the coming weeks as we move into winter planning is I am convinced the need to work collectively to reconnect people in care homes and communities, to rebuild the bonds between young and old, son and daughter, lover and beloved.

I leave you with words which remind me of all those whose lives will never be the same again:

 

Nobody ever told me.

Nobody ever told me

it would be this hard;

that I’d wake up in the morning

and think that you were there

lying beside me in our bed;

that I’d walk down the street

and recognise your shadow

following me in the sun;

that I’d listen to the radio

and hear your voice

inviting me to sing;

that I’d sit in the park

and watch you go by

in a group of strangers.

 

Nobody ever told me

it would be this hard;

that I’d wonder why I should

get up in the morning;

that I’d think making plans

was a children’s playground game;

that I’d rage with anger, red and raw,

at your leaving;

that I’d wonder was it me

who did something

that made you go away.

 

Nobody ever told me

it would be this hard.

 

Why can’t someone tell me instead

how I can stop crying

and dam the tears from soaking my pillow?

How I can start again when all I want to do

is rest in our lost togetherness?

How I can ‘move on’ when I only want to settle

in the place of our memories?

 

And please someone tell me

when will this time come,

the time they all talk of

in easy careless cliche,

the time which they say

will heal all things

and help me to live again?

 

 

August nursing blog – ‘To vaccinate is to care – our new moto?’

‘To vaccinate is to care’ – Our new moto?

There is nothing like a global pandemic to make you rethink what is important to protect ourselves and others. In recent months we have witnessed the efforts of all front-line healthcare staff to promote infection control through the strict measures laid out within infection control guidance, by ensuring PPE is in place, alongside social distancing and hand hygiene practices to reduce the spread of infection amidst an ever changing landscape.

Earlier this month the expansion of the flu programme was announce in Scotland and within this was that all social care staff providing direct care would have the opportunity to receive a free flu vaccine. This has been welcomed by all providers as it offers a further safeguard at a time when infection control has been the highest priority in preventing loss of lives. This has come as excellent news to staff as the disparity over this protection from flu between NHS and independent care sector staff was one that had been fiercely contested. It therefore seems fitting that this has been agreed in this particular year when we must ensure everything is being offered to staff to ensure their health and well-being.

We know that the uptake in previous years has been variable across the NHS workforce despite having this access to vaccination and arguably the most preventative way to reduce cases. The availability to social care staff was patchy and often resulted in a cost to the employer or the staff member. This will undoubtably improve in light of the current pandemic, both through the uptake of the vaccine and the infection control measures currently in place. As we start to move into remobilisation and recovery plans across the NHS and community, it is important that we do everything possible to reduce the burden on the NHS and social care this winter, especially in light of a potential second wave of Covid-19. Our hospitals will have reduced beds and staffing due to the post Covid measures put in place, therefore preventing unnecessary admissions is key.

NHS boards will choose their own delivery option and this year it is hoped that care home nurses will self-vaccinate their own staff, which would hopefully allow a better uptake. This year’s national campaign will be fully inclusive of the care sector to promote the value of the work staff do with  adults who require care and support and the importance of getting vaccinated, as well as to demonstrate how we recognise the importance of  the health and well-being of staff alongside the protection of residents.

We have also ensured that flu campaign signage will be visible within each of our care homes across Scotland to ensure a strong message about  the need to be vaccinated and that this is being promoted and offered to our staff and residents alike. In addition to this we will record the uptake of the vaccine by staff as part of our daily safety management tool.

As we approach the winter months in a year where the loss of lives within our most vulnerable groups has been staggering the focus to ensure every safeguard is in place is paramount.

Within health and social care, the safeguarding of our patients and residents has always been at the forefront of all staff endeavours but perhaps they have neglected themselves in the process. Staff may perceive themselves to be invincible, healthier than they actually are and therefore not at risk

I go to the gym and take daily vitamins so don’t need the flu vac’.

We recognised that during the pandemic many frontline staff have experienced significant burnout which ultimately has a detrimental effect on staff well-being and immunity, therefore, potentially putting them at a greater risk of being susceptible to the flu .In addition to this many health and social staff are approaching the higher risk age groups and may already have a long-term condition (LTC). Even in healthy adults, the risks associated with the transmission of the flu virus have the potential to be life threatening. We know that clinically the vaccine does not provide full protection, but it could save your life.

Presenteeism has been cited as a common cause for the spread of the flu virus with staff going to work when having some mild symptoms but not sick, but actually harbouring the virus, therefore potentially spreading this within their workplace.

This obviously presents significant risk to patients, residents and staff alike. We also have people who have been diagnosed and survived Covid-19 which has resulted in the need for specialised rehabilitation and recovery care plans for some and has weakened and progressed the ability to recover for others. Some people may have been asymptomatic therefore it is unlikely to fully know the extent of those who had Covid19 which raises the potential that some people may have a weakened response or will be more susceptible to this year’s flu virus.

Over recent years there have been several pushes to have the vaccination of frontline staff made mandatory but this presents many moral, religious and ethical questions. Respecting staff choice is important as some staff are simply not able to take the vaccine, although the risk of adverse reactions is low they can exist, and vaccination should always require consent for that reason alone. Some countries such as the USA have chosen to make this mandatory in a number of states to ensure the decline of the incidence of flu and subsequently reduce the numbers who die from this. The arguments for this approach are ones which are still currently being explored in the UK.

There is no question that prevention is better than cure, especially in this year when the risk of a second wave of Covid-19 continues to be a real potential threat. Perhaps then the standpoint should be not whether we agree or disagree with enforcing a mandatory approach for all healthcare workers, but that we adopt a mutual benefit response to reduce loss of lives at a time when  residents, staff and families may still be in a recovery phase from the pandemic. What is ultimately important is ensuring we create awareness, provide factual information, dispel the myths and provide easy accessibility to the vaccine and ensure we properly record the uptake to assist in the future vaccination programmes.

With this year’s flu expansion programme, I am confident that social care staff with fully embrace this opportunity and that the uptake by staff will be high across both NHS and the independent care sector.

This really is everyone’s business and the reduction of the age to receive a vaccine this year for the people of Scotland highlights that we all want to prevent further loss of lives. Our flu campaign will launch in the coming weeks and I hope everyone gets behind this and does everything to play their part.

 

The technology of touch: potential and limitation in the digital care age.

I am unashamedly an enthusiast for technology and gadgets. I may not have the latest phone or gizmo, but it is likely if you do I will look on with more than a modicum of jealousy.  As part of this fascination I have always been intrigued about the role of technology and digital in our care and support services.

This interest led me two years ago to write a report exploring the role of human rights in the developing fields of Artificial Intelligence, the Internet of Things and Big Data. Now before you scroll away, my central premise and interest in doing so was to explore the extent to which we can keep the human and especially rights at the heart of our use of technology in health and social care.

I have had quite a few conversations in the last week around technology, in part because along with colleagues, I am preparing for the Scottish Care Care Tech3 event next Friday. This virtual event will bring together those who have been using technology and digital in the delivery of care services and will include designers and developers as well as frontline staff and users. The equivalent event last year saw the launch of a Human Rights Charter for Technology and Digital and this year my colleague Dr Tara French will be sharing the Scottish Care Tech Vision rooted in the human rights and autonomy of individuals.

For me technology at its best is explicitly an art or a craft (indeed that’s what the word tekne means in its Greek root). Its potential is immense in that it can deepen and enrich human encounter and experience, can foster connection and enhance relationships. However, too often, I feel, we get so caught up in the mechanics and the technicalities of new technology, that we lose sight of the art, the creativity and the humanity. Equally we can get so obsessed with using technology as a cost-saver and as an efficient alternative to the human that we endanger the willingness of citizens to adopt and trust.

The Covid pandemic has seen the most amazing advances in the use of technology not least in the health and care sectors. The pace and speed of intervention and design has been breath-taking. The launch in the last week of an app to help care home providers share critical data and information on a national level has been astonishing, moving as it has from wire-design to delivery within weeks.  We have witnessed a massive increase in the use of video and tele-consultations between GPs and their patients not least through the Near Me technology supported by Scottish Government. Remote diagnostic tools have been developed and many more practical and helpful innovations including the use of virtual reality have enabled technology to come off the paper and change lives, indeed, probably to save lives.

Perhaps most importantly, on a very human level the experience of many of the residents in our care homes has been that through the use of tablets and other video devices they have been able to keep in touch and remain connected with their family members during the forced lockdown when physical contact has not been possible.

But it is as a result of my many conversations with families and residents and those who used health and care services during the pandemic that I feel that my own enthusiasm and evangelism about technology needs to be more balanced.

Now I am not suggesting that we are in danger of some dystopian nightmare where automaton have taken over and that as a result we need to develop a fear of the technological future. Covid19 whilst it has highlighted the real progressive power of tech and digital has also served to underline the critical importance of embedding a human rights and ethical framework in its use in health and social care.

Technology within a care context should primarily be about enabling the betterment of interaction and facilitating the intensity of relationship. It should always be about improving outcomes for the person rather than simply making life easier for the professional. A GP who uses Near Me to consult with someone in a care home is positively providing an immediacy of response and especially during a pandemic reducing the risk of virus transmission. However, few would deny that the subtleties of body language, the dynamic of inter-personal relationship, the signs and signals of encounter can be equally achieved through a virtual encounter compared to a face to face meeting. Video consultations are fundamentally important, but we have to acknowledge their limitations. We have to appreciate that there are those with visual and hearing impairments, those with advanced dementia and other neurological conditions ( i.e. the majority of care home residents) who struggle to engage with such tools and who are dis-empowered by any sole dependency upon them, to say nothing for the effects on their personal privacy and autonomy. We have equally to acknowledge the reality of digital poverty which if not adequately recognised will serve to exacerbate and compound the very real health inequalities which have scarred Scotland.

I know from practice that one of the most important things I learnt was to give space to ‘doorknob’ conversations. These were the conversations which happened as someone got to the door, placed their hand on the handle, and turned around and said to me ”Oh there is something else I meant to say…”  And you just knew that this interaction was the primary reason they had come to see you but just could not get up the courage to talk about face to face.  Not much chance for the occasional, by-the-way alongsideness of such conversations in a video consultation. So too those of us involved in talking to others about hard and emotional subjects recognise that it is not just what someone says that communicates their truth and feelings but also the way they say it, the timbre of their voice and the silence between the sounds of their words.

But there has been one conversation more than any other during the last few months which has helped to balance my digital enthusiasm. It was with the daughter of a care home resident who had provided a tablet for her mum to speak to her and keep in touch. After weeks of growing frustration with both the device and her mother’s inability to comprehend what was happening and to use it –she said to me – “I want to hold her and hug her, I want to touch her not give her a digital kiss.”

As I researched the report I mentioned earlier I spoke to many around the world from California to Tokyo, Edinburgh to Oxford, about what the future of technology and care might look like. At the end of six months of Covid I believe we are closer to that future than we could ever have imagined at the start of the year. But for all the immense progress in the last six months I am left with the conviction that my concerns in that original report over data privacy, citizen disenchantment and the intrinsic value of human presence are now more valid than ever they were before.

We need to work together to create a Digital Plus world where we celebrate and appreciate the contribution of technology and digital to change our lives and improve our health alongside  the critical importance of enhancing human interaction and developing models which are right for the individual rather than appropriate for the system. We need to assure those who are anxious about how their data will be held and accessed and be confident in ethical principles and the human rights of privacy and personal control. We need to address the fear that human touch and contact will be marginalised by electronic encounter and exchange.

In a world of robotics and care bots, in a realm of accelerated data and machine learning, we dare not lose the human at the heart of the machine. Technology can enhance connection but can never replace touch; a machine can foster memory but can never give the feeling of a hug, held close, warm and affirming full of a depth of meaning beyond calculation.

So I will continue to be enthusiastic about the potential of technology but I will balance that with the lessons of Covid which more than anything else have taught me that when it matters most we want to be present, to feel we are heard, to recognise the rhythm of another’s concern, and to be held. If we get the balance right then we will really experience the touch of technology.

 

Dr Donald Macaskill

Life interrupted: preparing to do better. A blog from our CEO

I have been thinking a lot this week about the weather.

The weather has always fascinated me, which is probably just as well for someone born in Scotland and with my surname (that latter observation will be lost on anyone born after 1980!) My love of all things meteorological was renewed when in Skye two weekends ago I saw the weather continually change in the distance with the regularity of a dance, one minute bringing torrential rain and the next blazing sunshine. Skye is a place where  Crowded House’s ‘Four Seasons in One Day’ should be the theme tune of existence. With a wide vista and far horizon, it is indeed possible to ignore weather forecasts and simply look out of the window and know what you need to wear – at least for the next hour.

This last week for many of us has been a reminder of the unpredictability of the weather with torrential thunderstorms and searing heat bringing with it destruction and devastation alongside sleepless nights and irksome hot working days.

One weather phenomenon I fell in awe of was something I witnessed years ago when on another island – the storm. Living in Holm, Orkney for a year gave me the experience of feeling the intensity of the ‘calm before the storm’, that stilling of life and sound before the flick of a celestial switch brought roaring power and breath-taking energy raging down upon you.

There is a sense for me that the recent past, these present days and what the future might hold feels a bit like experiencing an Orcadian storm.  

The last few months have been a time of unreality. It is hard to remember what life was like in pre-Covid times. Indeed, when I see on television a programme filmed before March my instant reaction is to recoil at the lack of social distancing and question the absence of masks and PPE! Our worlds of perception have changed markedly.

Life as we know it has been interrupted, whether you are a young person aspiring to a career dependent up certain grades or someone wanting to go on holiday to France or Spain; whether you are simply wanting to be with your mates in a pub, go to the football, travel to visit family, have that operation and procedure you have been waiting for, life has been put on hold. The rhythms of our ordinary living have been interrupted and removed by coronavirus. We yearn for a return to ordinariness and yet we are told by our leaders that we should not be feeling and doing things as if life was ‘normal.’

But the last few months have for countless thousands also been a period of real pain, loss and hurt.

It feels as if now we are in a hinterland, in a waiting time. The focus of so much of my time in the week that has just passed has been spent on preparing. Preparation for a resurgence of Covid, for the impact of the winter flu, for the unknowability and the uncertainties of our Brexit exit. Preparation to ensure that the social care and health systems are able to withstand the barrage of another assault, a different battle and a new challenge.

But as with a sense of calm before the unknown we have time to reflect and think, to recollect and to change. So, what should we be doing in this hinterland time? I think we have to in this liminal space between our past and unpredictable future prepare to do better and to be better.

There are aspirations I have for restoring a better way of interrupting life and normality so that we can come through future challenges in a way which is closer to who we want to be both as individuals and as a society.

So, in this hinterland of life interrupted let us prepare to do better.

Let us prepare to listen to those who are experiencing the agony of aloneness and mental health fatigue and breakdown. We have to attend better to the issues that  mean that people are struggling in their mental health with the interruption of the normal – we are all creatures of habit to a greater or lesser extent and the habits of our humanity have been thrown out of kilter. There are countless who have suffered in isolation and who today are anxious over the prospects of their future, potentially being unemployed or unable to achieve their dreams and aspirations.

Let us prepare to do better in supporting those who have lost loved ones during the pandemic and who might do so in the future. We have to do better at talking about death and dying, to stop ourselves becoming numb to the statistics of death and start finding a vocabulary that enables us to speak and to share grief with one another. In England hundreds have died from this virus in the past week yet their deaths are diminished by political silence and absence from media comment. We have to do better at working at the solace of comforting one another.

Let us prepare to do better in our care homes by really listening to what residents and families want in these changed times. We have to start to really include and involve people whose lives have been turned upside down by the pandemic. Emergency response may have justified non-inclusive action and decision-making, but in these times and moving forward we have to find better ways at making sure the autonomy and individual rights of those who reside in care homes and their families are considered just as important as the views of ‘experts’, professionals and staff.

Let us prepare for the future by making sure that we really learn the devastating truth of deterioration and decline in the health and wellbeing of care home residents by better managing measures taken to protect but which have stopped people living a life which is theirs by imprisoning them from contact and relationship, from movement and activity in their care homes. We need to do better at protecting and advancing holistic care and support including making sure in the future health professionals are physically present in care homes.

Let us do better and prepare to change a system of community social care commissioning which treats individual citizens as packages of commoditised care and let us start to re-discover the essence of relational support. There is a wave of unmet need and family carer breakdown in our communities about to overwhelm us.

Let us prepare to ensure the physical realities of ventilators and stand-by hospitals, of PPE and medical supplies are in place but let us also remember we need to continually do something about the health and wellbeing of an exhausted and sometimes demoralised staff. In particular let us face up to the reality that many working in leadership and management in social care are at breaking point with exhaustion not least from the continual demands from an insensitive system over which they have no control. We need to appreciate that we are at risk of haemorrhaging managers from the care system because of a lack of professional respect and understanding or simply because they are spent and knackered by the weeks and months that have passed.

I could go on, but I am convinced in this time and space we have to not just learn lessons but to start working on doing better.

And perhaps the biggest challenge is one we all face and one which I think only now we are beginning to truly appreciate – and that is that we are all of us needing support in order to live this life less ordinary. We need support to learn to live with a lack of the familiar and routine; whether that be working from home, coping with different models of learning for our children; not being able to be as autonomous as we once were, or simply how to ‘be’ healthy in a world of social distance and physical detachment. In a sensual physical world, we have to learn to give assurance and affection without touch and presence. We all of us have to live in our mid-Covid hinterland between past lives and future uncertainty.

In the fragmented space of our normality, in that hinterland between ordinary days and unknown future, we have to work together to create a response which roots us in our shared humanity and our collective need to be compassionate and to care. As we yearn for the familiar and the ordinary, we have to support each other to find our ways through the fractures of feelings which for many are raw and painful, confused and conflicted.

On the other side of the storm the world is forever changed. There is a freshness of air and a breath which invigorates. As we gather up the driftwood of our past we find a new purpose and direction for our present. I hope that will mean for many of us the finding of beauty in the ordinary and meaning in the mundane. We will be able to look out and see the clouds and the sun gathering on the horizon and feel at ease with who we have become as individuals, as a care system and as a community, and we will find the clothes we wear are dignity, care and compassion. It is a future we have to prepare for just like the Scottish weather.

Donald Macaskill

The invisibility of loneliness: an opportunity to change – a blog from our CEO.

Like many others working in social care I receive invitations to attend events and conferences. This week I have received notification of no less than three conferences in the next two months looking at the issue of loneliness and isolation both during the pandemic and before/beyond it. Loneliness seems to be an issue of real concern at the present time.

I don’t suppose any of us would have imagined in March that as a society we were going to be starting a process of months of social isolation and social distancing, being physically apart from those who matter to us and distant from those we know and love. For many of us that has been very hard indeed but the slow return to connection and relationship has been one of the few positives over the last few weeks of summer. But this sadly is not the case for everyone.

In a world and at a time when relationship and connection seem to be all the more important there are those in our communities who are dis-connected and alone.

At the height of the pandemic I received a call from someone who before Covid19 led an active life contributing to a diverse range of organisations and groups. To do so they required the support of a carer because of their own life-long disabilities. With the start of the pandemic all that disappeared as their social care package was reduced and then frozen. Virtually overnight they became disconnected, deeply impacting on their sense of self and identity. For this individual isolation meant a loss of more than simply being able to be out and about, it stripped them of their confidence and self-esteem. Incidentally like so many this person’s package of care and support has still not been renewed. They have been told that they seemed to have ‘managed’ without paid care!

Coronavirus and the imposed lockdown has deeply impacted thousands of individuals and created for them a sense of loneliness and isolation. In June an ONS Opinion and Lifestyle Survey found that about 1 in 4 people aged 55-69 and almost 3 in 10 people aged 70+ felt lonely in the preceding week. There have also been a range of academic papers and studies highlighting the degree to which people of all ages have felt lonely and isolated during the lockdown.

It is clear even at this early stage that this has and is having a profound impact on mental health and wellbeing. What might surprise some is that those most impacted by loneliness have been those in younger and middle years. Sadly, for those working in social care this may not be a shock – mainly because we have known that older people have experienced loneliness and isolation for many years!

In a world which presupposes relationship as being intrinsic to well-being years of research have shown us that loneliness is the day to day, week by week, month by month experience of older people in Scotland. One survey by the National Campaign to End Loneliness undertaken a couple of years ago found that of the older population of the city of Glasgow, it is estimated that 10% can go days or weeks without having any contact with anyone. It stated that loneliness and its impact can have such negative health determinants that it is the equivalent of smoking fifteen cigarettes a day.

With over 1.4 million people in the United Kingdom reported as being lonely, the issue has been known for years. During Covid19 an estimated 6.1 million people were living on their own, of whom around 2.2 million people are over 75. For millions Covid19 lockdown was a time of real loneliness and deep isolation.

As we come out of strict lockdown and as we prepare for winter and the challenges which it will bring in our management of Coronavirus I think it is urgent that we address now issues of loneliness and the hugely negative impacts that isolation can have on the health and wellbeing of people. It is clear that this has been the case in our care homes. However, the impact of isolation and loneliness in our wider community has not received the focus and attention that it urgently requires. Without any sense of hyperbole loneliness can kill.

Now lest I get accused of over-simplification. I recognise that for many being on your own is not intrinsically negative and admittedly much of the recent debate has ignored the benefits of solitude. There is a world of difference between social isolation and forced loneliness over which you have no control and which you do not desire, and the reality for many which is a decision to be single and alone. There has been an automatic presumption of the negativity of aloneness in much of the consideration of these issues. So, what we need rather is a serious debate about what loneliness is and what interventions are needed, which will be beneficial for both the individual citizen and society as large. That is a debate we urgently need to have in these mid-Covid times.

I hope as we consider the impact of loneliness we also reflect on what social care can bring to that debate. Social care in essence is not about engaging in a set of transactions and functional tasks rather it has at its heart the enabling of individual citizenship and the fostering of relationship. In decades gone by the person who used to be known as the ‘home help’ was an individual who not only carried out daily tasks but much more importantly spent time with and gave time to those they cared for. They were the eyes and ears of protection and prevention, they were the carrier of community insight and gossip, they were the ear to listen to and the person to unburden upon.  When we stripped out this element of care in the reforms of homecare in the 1990s we lost not just individual characters, but we lost a sense of connectedness and cohesion. Care is about a relatedness which reduces isolation and fosters connection by creating community.

Moving into the autumn and winter I hope as we restore packages of support and care in our communities, as family members return to work and ‘paid carers’ take over, I hope we use this time to address the challenges of loneliness. Now is the time to change our view of what homecare is all about. Now is the time to restore time, relationship and connection.

For years people like me have criticised the way in which as a society in Scotland we have apportioned and commissioned social care for our older citizens. Before the pandemic Scottish Care estimated that at least a third of Scottish councils commissioned 15-minute visits for the provision of personal care. Despite all the political rhetoric to the contrary we still have thousands of people experiencing the indignity of the degrading practice of flying visits. For many individuals receiving support at home, 15-minute personal care visits barely allow for tasks to be completed, let alone to develop a positive relationship between the individual and their carer. Never mind the battery care-hen pressures they place on the worker by electronic call monitoring and checks.

We must surely use the opportunities presented by Covid19 to invest more in the care of our older citizens in the community. Whatever happens with a second wave or with outbreaks and lockdowns we have to do better by those who require care and support in our communities. One way of addressing loneliness is to stop treating people as a problem to be solved but rather to empower them to be in control of their packages of care. That is what we have already in legislation (the Self-directed Support Act) but the system and vested interest and mantra has prevented real control and power being given to those who require care. Let us end 15-minute visits, let us pay for people to spend time with our older citizens, to be present rather than to be clock-watchers for the next call.

A society where loneliness becomes a political policy priority, but not where the same political system is prepared to allocate resource to address the issue is less than it should be; a community where contact is reduced by the arithmetic of affordability does not in any sense value those who it should care for; and a place where older age is considered to be beyond contribution – such a society needs to rediscover the essence of a love and regard for others, which would be a true pandemic legacy.

Loneliness is not just the absence of others rather it is that emptiness created by absence which reaches inside a person and holds them. It is the sense of physical and emotional abandonment and complete aloneness; the sense that no one is there for you, no one is listening to you, and no one is truly hearing you. That tragically is what too many feel today. A social care system worthy of its name should seek to support and uphold not just by care but by being ‘social.’

Donald Macaskill

@DrDMacaskill

 

 

Home: a place of shielding and freedom: our CEO’s weekly blog.

I’m writing these words from the Isle of Skye where I arrived yesterday to visit family for the weekend. Every time I come to Skye I have a sense of coming home.

As the child of two Skye parents my life-story is punctuated by journeys ‘home’ to Skye; not least the activity of packing and going on the seemingly never-ending journey north from Glasgow. Decades ago, it did indeed feel like an intrepid adventure taking as it did an inordinate 12 hours for one large family to travel by buses and taxi and arrive at the place which for generations my family had called theirs. I possess memories of ridiculously hot summers spent with grandparents who seemed to me already ancient beyond years; I resurrected my Gaelic by listening in on the latest gossip; I gained insight into the strong cultural dialects of church and tradition, of music and poetry; I have memories of the rituals of crofting as my eldest son father took his part in shearing sheep, repairing byres and erecting fences.

As I grew up I recognised that deep within me was an inner truth that I sensed a wholeness of self only when I was in that space of open glens and brooding mountains, breathing in a beauty so raw it’s reality caught your breath, witnessing the vibrant power of nature in daytime storm and evening calmness. I also sensed a need to be away, to be distant, to be free and far. I now know that this was a sense of ‘home’ which despite all efforts I did not have away from this space.

To return home restores and renews, it re-invigorates, and it gives balance. I know acutely that this is not true for all and I am not blind to the brokenness of my own story. Home is not always a place of happiness but can be a harbour of hurt and a painful prison. But I also know from years of conversations with those who have never found a space to be themselves, and to feel secure and safe, that there remains a yearning and a desire to find that space which we often call ‘home.’

In this last week I have been reflecting with many others about the value of home.

I am especially mindful today of those who have spent months shielding themselves from Covid and who are being ‘allowed out.’ That is the phrase used by someone who wrote to me this past week. Fiona is receiving treatment for cancer and has been unable to go and see her father in a care home not just because the care home has been closed but because she has been shielding herself in her own home. She reflected in her letter the way in which she feels safe and secure, protected from harm and the unknown of this virus behind her windows and doors. She reflected that she was concerned about how she would cope with being away from that place of protection; a place where in her own words she has ‘cocooned herself from harm’.

Our home is a place of memory and belonging. It is not just a construction of brick and mortar, of stone and wood, though the physicality is part of what makes a place special. Home is a place and space which enables us to be authentically who we are as a person. It should be a place that we feel protected, able to be who we are without mask or pretence, able to be at ease inside our own skin.

But I also recognise that the best homes are places which enable you to have a sense of confidence and freedom to go out into the world to be changed and to grow, to fail and to flourish, and in both to be able to return with the confidence of acceptance, welcome and warmth.

So, I am thinking of those who are making that journey out today for the first time from the place of shielding to encounter and engagement with others. It is one which will no doubt be faltering at first but which I hope the rest of society will support not least by adhering to the safe practices which will keep us all safe from this virus.

But I am also thinking today about what home has felt like for those who have been caring for a loved one in their own homes. Many of them lost the packages of support which they had before the pandemic and these are only slowly getting back. Others chose to cancel care packages because they feared that workers would bring in the virus and these have still in most instances not been renewed. I am very aware from conversations this week that family and ‘informal’ carers across Scotland are exhausted and at the stage of really needing immediate support. The task of caring for a loved one is draining and depleting even of the energies of loving. Yet day centres remain closed and many sources of traditional respite are shut off to carers, including many care homes. There are older Scots at home who today are anxious about getting access to their GPs, unsure about when the podiatrist or community physiotherapist will next see them, who know that their own health has been affected by lockdown whether as an individual or as a carer or as someone who has been technically shielding.

Lastly when I reflect about ‘home’ today I am thinking of all those who I have spoken to and been in communication with in the last week about the place which their mother or father, wife or husband, grandparent has called home – their care home.

Yet another week has passed, and we still have not had an announcement about what date residents will be able to be visited inside their care home. I have said before and I fully acknowledge the need to carefully balance the risk of the virus getting into our care homes with the desire and urgent imperative to restore the rights of family and residents to be re-united. I am not naïve to the hardness of these decisions, but I am increasingly concerned that our scientists and others are not aware of the damage and effects of separation.  There are thousands who have not seen a family member for 21 weeks. Their care home is their home, a place of security and safety, a place which they have been protected in despite the ravages of this disease. There is a growing sense of anger and frustration that as the rest of society prioritises children going back to school and as snooker halls and bingo, funfairs and casinos are given dates for opening, we still do not have a date to restore life to our care homes, to allow indoor visiting, to inch closer to making our care homes back into real ‘homes.’

Home is a space and place,  a feeling and sense of being at ease and secure, of being able to become who you are and be what you dream of. Home is a place of memory and dreaming, of creating and growing. But home does not just happen – it is a work of heart and soul, of sinew and sacrifice.

Today we need to work with even greater energy to ensure that family homes are spaces where the old and ill, those shielded and in need of extra protection, feel they have the level of support and care, guidance and assurance that they need. Today we have to renew our efforts to ensure that our care homes do not become antiseptic units of infection management devoid of presence and humanity but are restored to being places of encounter and life. We need to get family back to start re-creating home not least for those whose time is in days and weeks, not months and years.

Home is the labour of those who feel the need to root their loving and compassion into a place and space, to create a cradle of belonging for family and friend, stranger and guest . When I close my senses there is only one place which webs me together. In that I am lucky. For at least a couple of days I am ‘home’ but with the conviction that we must restore and affirm that sense of home to and for all.

“In the distance day was dawning,
Comes to me the early morning,
Something tells me that I’m going home

The brand new sun shining bright
From the darkness fields of light
Something tells me that I’m going home

Going home
When the summer’s coming in
And the moonlight on the river
Shows me where I’ve been

Soft the rain is gently falling
Lightly cross the city morning
I get the feeling that I’m going home

Across the moorlands, past the mountains,
O’er the rivers, beside the new streams,
Something tells me that I’m going home

Going home
When the summer’s coming in
And the moonlight on the river
Shows me where I’ve been

As the train is rolling nearer
Ah, the feeling just to be there,
Something tells me that I’m going home

Now the skylines reach my eyes
The ridge stands out in highland skies
I just can’t believe I’m going home.”

(Lyrics of ‘Going Home’ by Runrig)

 

Donald Macaskill 

 

New nursing blog for July from our Transforming Workforce Lead

Nursing a career for life, past, present and future.

Nursing has always been viewed as a job for life, a vocation that spans over 40 years that gives you the ability to grow, to diversify and offers the opportunities to have a flexible worthwhile career, where there is real potential to make a difference. This can be on an individual, national or international level. The possibilities are endless.

Back in the day when I was a student nurse, nursing was all about matrons and procedure manuals. Often feeling like an extra pair of hands, following doctors around, and rarely questioning anything that was said. Thankfully nursing has moved on from the medicalised model, not only nurses but student nurses are now empowered and leaders in their own right. It’s hard to believe that back then we had no access to internet or social media, all which without question has today catapulted nurse education and the profession as a whole.

As a student nurse you work alongside many nurses within a variety of different specialisms and you soon determine those who are role models. Despite having trained in the 1980s I can still remember those nurses who inspired me and as importantly those who did not. This often helps reaffirm the areas you wish to work after completion of your training.

The natural progression for the majority of student nurses is to go straight to a post within the NHS, however it is imperative that we expand the opportunities for newly qualified nurses to come straight into the social care sector. The sector offers a real potential to grow and develop your professional autonomy, clinical development and management.

Recent months have saw an influx of student nurses into the independent sector who previously wouldn’t have been placed within a care home, with this exposure being viewed by many as positive and insightful. I am delighted to say this has resulted in some third-year students due to take up their first staff nurse post within the independent sector. Despite these numbers being low in comparison to NHS placements there will be a concerted effort to extend student placements within care homes as we commence the new pre-registration nurse training.

Nursing without question made me who I am today. I grew up quickly, had never witnessed death or dying or what it truly felt like to be needed, respected and the pride you feel when people share their vulnerability and inner most fears. I do hope that every nursing student still experience these feelings, as I believe this is the foundation to being a professional nurse.

Being prepared to make the transition is something that many students worry about especially in today’s climate when everything appears to be under the microscopic. Preceptorship has never been more important and needs to be robust to ensure newly qualified staff have adequate clinical supervision, especially in the first 6 months after qualifying.

For many staff qualifying is a reality check and unfortunately staff continue to leave post registration within the first few years of qualifying. Recent figures in 2018 suggested almost half of all nurse who leave are under 40 years old.

As nurses we often hear the phrase ‘I couldn’t do your job’, the fact is it is probably true. I don’t believe anyone can be a nurse , it’s not a job that anyone can do if it’s not intrinsically part of you, in your heart to care, the desire to make change happen, ensuring improvement and keeping people safe. Unfortunately these qualities alone are not enough to cope with some pressures that are currently placed on staff. This is also apparent in the numbers of students who do not complete their training. According to figures released last year by the Nursing Standard, the attrition rate was around 24 per cent.

Looking back and I can’t believe where the years have gone. I never imagined when I completed my training the different roles I would’ve undertaken and that many of those I trained and work alongside continue to be in nursing today, as clinicians, nurse educators and senior managers, although I must mention approaching retirement fast.

Sadly, despite the satisfaction nursing offers it has unfortunately gone through many years of being an undervalued profession despite pre-registered nurses now trained to graduate and master’s level. We were seeing a reduction of nurses ahead, due to upcoming retirements, an increase in nurses choosing to take early retirement, and the exiting of EU nurses post Brexit. In addition we also had a workforce that was struggling with high level of staff absence due to mental health related absences,  often cited as a result of short staffing, and too many priority areas being placed on staff .This had undoubtably placed massive pressures on the existing workforce.

This makes an urgency to impress on staff the importance of being empowered and how promoting leadership with the sector will ensure better job satisfaction and peer support. I often come across articles where newly qualified staff express how overwhelmed they feel and question whether they can deal with the daily pressures. Nurses work at the coal face of a fast-paced health and social care system that can often feel dysfunctional, which is exhausting. It can often feel like you are on a rollercoaster as one thing is resolved something else comes behind to continue the pressure.

My response would be that nursing has always been challenging and this will never change and the reason its challenging is because it’s a job that really matters and is reliant on the right people to influence change, which can improve outcomes for people we care for, all the reasons for becoming  a nurse in the first place. Being part of a great team and peer support is crucial to ensuring you develop the coping mechanisms to grow strong.

In 2017, the 2030 vision was published. The aim of this document was about showcasing the work nurses do, to raise the profile, define competences and ability to develop in an evolving health and social care world. In this the ‘Year of the Nurse’ we have certainly highlighted the role of nurses, their ability to rise to challenges, be solution focused and be skilled to undertake a level of practice required to ensure patient safety during a time of the greatest uncertainty, and risk to their own personal health.

In recent months we have witnessed the dedication of nurses who responded to join the emergency register as well and the redeployment of nurses alongside other healthcare professional, none less than the high numbers of student nurses who came forward to be part of this dynamic professional workforce. In addition, we saw an increase in the nurse register as a result, however we must continue to see this now and into the future. As we approach the highest levels of staff retirements within the next 5 years it is imperative that we recruit and retain staff more than ever to be able to provide a sustainable health and social care workforce.

We have increased student placements and funding for students to assist in getting more people into the profession and post covid19 most universities have reached their admission targets with many over prescribed. However we must be mindful of the changes to the curriculum, and the extension of online training may result in higher dropout rates over the next few years, alongside the uncertainties that have been presented with this pandemic to staff welfare.

Staff burnout was already at an all-time high therefore it is paramount that staff receive appropriate support to ensure they are fit to practice, and part of this is to ensure their physical and mental wellbeing. Nurses often view stress as normal therefore if we genuinely care about our staff, we must look to ensure we hold onto them and avoid the risks of putting additional pressures on those staff who are left on the ground.

We must reflect that for many staff who made the decision to leave that this was not necessarily because they really wanted to let their registration lapse, but that they felt defeated or that they were no longer doing a job in the way that they wanted to , were not valued or understood and most importantly not listened to. It’s important to note that this is rarely a reflection on ability but more likely to be due to professional frustration. Nurses need to know this is not the end and in nursing we all can face difficult situations that can push us to the edge. I challenge any nurse to say they haven’t had a period in their career that they didn’t want to throw in the towel.

In a career that could and should be for life, we need to change thinking to be inclusive of all aspects and sectors and ensure there is a real determination to work together to prevent boundaries and assist staff wishing to work across these sectors. There is a real benefit to working in collaboration having shared national approaches and systems across NHS and the independent sector, not as a joint entity but as a respectful partnership which is mutually supportive.

Recent months have without question pushed the transforming nursing roles agenda by identifying the current roles being undertaken by nurses and how these can evolve to improve practice, data collection and ultimately job satisfaction to improve staff recruitment and retention.

Each sector offers the potential for each individual nurse to work to the top of their license and the social care sector ensures gerontology nursing is given the credibility it has not always been given in the past. The access to future funded post registration educational programmes within the sector will ensure this.

This specialism is going to evolve rapidly in light of the increasing ageing population and the fragility of our older people. This will require significant knowledge and skills to care for people who have debilitating long term conditions and therefore the workforce development will require significant focus and centralised investment. Rehabilitation and recovery will play a significant part moving forward post covid19, ensuring those people requiring 24 hour care are not excluded from the right care at the right time by the right person.

Every role needs to have scope to grow and the more exposure to the independent sector by student nurses, NHS boards and higher education institutes the more we will work inclusively which will without question ensure student nurses will have a more rounded experience and career trajectory, and we will hopefully see more newly qualified nurses coming straight to social care nursing, or considering this as a prospect at some point in their career. Personally, I believe rotational peripatetic posts and taking up posts across all sectors throughout your career can significantly enhance knowledge and skills and empower staff to think more strategically.

This is the ideal time for many who may have left to return. As previously highlighted nurses leave for many reasons and perhaps this is something that the NMC as the registering body should consider recording as a means of anticipating the potential to offer an alternative to coming off the register as often this is due to a negative set of circumstances and can often be a reactive response. Within the independent sector we may have staff who decided to let their registration lapse and work as in a care role rather than a nurse and may now wish to return to practice.

There are two new return to practice programmes being offered in Scotland later this year and at the beginning of 2021 which will support staff to return to the practice by taking into account their experience and placing them ideally within future staff nurse roles, assisting the issues we currently have in unfilled vacancies. This is something I encourage providers within the sector to consider supporting the current recruitment processes.

There is no question the future has some uncertainty, but we have the real potential to have a workforce which will be skilled and fit to cope with the challenges ahead and beyond. Staff have always shown significant resilience, but this has been none more evident than over the last few months, with those student nurses who took up the paid placements being testimony to this.

It is every single nurse’s responsibility to do everything in their power to encourage, support, mentor and make others understand the importance of being a nurse and recognise what the new workforce must look like.

In this the year of the nurse the profession has without question been tested , despite our staff having given their all ,within a political climate that has been less than supportive and at times downright derogatory to our nurses we will end this year stronger .

This is our year to be strong, be a collective and demonstrate what a privilege it is to be a nurse and the crucial role we play and will continue to play as the backbone of our health and social care sector.

Jacqui Neil

Transforming Workforce Lead

Dying of a broken heart: the pain of care home deaths. A personal reflection.

I interrupted one of my many Zoom meetings this week to go outside briefly and stand with others as the hearse carrying the remains of a neighbour left his home for the last time accompanied by the small family group able to attend his funeral. I was saying goodbye to a man of quiet dignity and constant smile who had left his home for the last time just before the pandemic as his dementia worsened to the extent that he needed to enter a care home.

As I stood there clapping with others in memory and thanks I could not get out of my mind the words his now widow had spoken to me a few days earlier. I had met her and as I expressed my condolences she told me of how she had been unable to see him for four months until his last few hours. She had nothing but praise for the care home staff but she was deeply upset about restrictions that prevented them from being in contact as they had for virtually every day of their married lives. I parted with her words ringing in my ears. “Donald you have to sort it. His death certificate said he died of his dementia, but I wanted them to write in it that he died of a broken heart, but they wouldn’t. He died of a broken heart. I just know it.”

As the weeks have gone on fewer and fewer people thankfully have died from Covid19 in our care homes and this past week we have seen the lowest level since the start of the pandemic. But sadly, in the rhythm of time there are still people dying in our care homes as there always has been and always will be. Care homes as I have said elsewhere are increasingly hospices in the heart of our communities; places of living in fullness and love until the end; places which give solace, comfort and care as folks come to the end of their days. So, there is nothing new about death and dying in our care homes. Indeed, over the years the ability to get to know residents as individuals, especially those wracked with dementia and its horrific hold, have made care homes places capable of giving people as personal and as appropriate an end as possible.

During Covid19 the natural humanity of caring has been interrupted. Part of the rhythm of a death which is expected is the necessary and essential presence of family and friends, to give assurance, offer comfort and to simply be present. Being with the dying is our greatest gift to a human life; surrounding a life with love and memory, holding one another in our first steps of grieving are intrinsic to good bereavement. The times I have been privileged to be with someone as they have died will forever be etched in my soul, without diminishing the aching sadness and emptiness that those moments brought. I have learned more about life in the presence of death than from any textbook or any teacher.

“He died of a broken heart.” Living is not just the intaking of breath into the frame of a physical body of flesh and bone; living is not just the occupying of space and earth; living is not just being there. Living is about relatedness,  knowing that you are part of a story, being assured that you matter, that your voice is heard and your personhood upheld. What is the point of simply continuing to be here when all that is of worth and meaning, of value and heart, is absent and held back from you. The number of our days are as nothing without a quality within those days.

So it is that I do indeed believe that there are many others just like my neighbour who have died and are dying in our care homes not because of the vicious virulence of a virus but because of the measures put in place to protect and save their lives.  I am definitely not saying that actions taken to protect are misplaced or wrong, certainly not in the earliest days of this virus. But now we have entered the 20th week of lockdown in our care homes and with regretfully no immediate move to visiting indoors, I have to with all honesty and I hope with integrity and sincerity, question whether we are now doing more harm than anything else.

I cannot imagine what it is like to have been in love with someone for decades, to have so become inter-twinned with another, that your steps are as one, your memories wrapped up in an alongsideness so intimate that there is nothing to separate them – and then to be separated, kept distant, only able to touch through glass, or speak through a machine. I cannot conceive the agony that it has been and still is for so many hundreds of not being able to touch and hold and be with those you love. I dare not imagine what it is like not to be with those I love.

There are loads of attempts to find a vaccine for this virus. But what I want – in the sad awareness that this virus will be around for many many years to come and that a vaccine may not work for all – is that we put equal effort into finding ways in which we can  better balance protection and presence; that we can devise ways in which families can be with their loved ones so that the scar of separation is removed from our care homes.

I have seen it before, and I know deep inside myself the truth that my neighbour spoke. It is possible to die of a broken heart; to turn your face to the wall because the voice that gives you confidence is not heard; the hand that strokes you in assurance is not felt; the smile that lightens your soul is not present. There is no science for such an assertion only the evidence of experience and the truth of knowing.

In the weeks and months ahead, we have to get better systems of Infection prevention and control for our care homes which are appropriate to their nature as a home first and foremost and not simply adopt measures and approaches from an acute hospital setting. In the coming weeks we have to give very serious consideration as testing techniques develop to appointing at least one relative for each resident to enable the continuation of contact and human presence throughout any future outbreak. Over the next few weeks we have to really start to hear and listen to the voices of those who have autonomy and rights. We have to stop doing to and for and start listening to the voice of resident and family.

We cannot mend a heart which is broken; we cannot bring back a life which is lost or fill the emptiness of the days which hundreds have experienced, but moving forward we all, I believe, need to commit to responding better and doing differently in the future of this pandemic.

There are few poems about loss and dying more beautiful than Maya Angelou’s ‘When Great Trees Fall.’ I end this piece with the last stanza of her poem because it reminds us that when anyone dies they leave not just a memory but a call to action based on their living. The hundreds who have died in care homes in the last few months, my neighbour amongst them, need action not memorials, they deserve change so that no more hearts may break, and to that I for one will commit.

‘And when great souls die,


after a period peace blooms,


slowly and always


irregularly. Spaces fill


with a kind of


soothing electric vibration.


Our senses, restored, never


to be the same, whisper to us.


They existed. They existed.


We can be. Be and be


better. For they existed.’

 

Donald Macaskill 

The essence of hope: the dangers of Covid19 optimism.

 

Hope is not optimism,

which expects things

to turn out well,

but something rooted

in the conviction

that there is good

worth working for.

 

– Seamus Heaney

 

Hope is one of these intangible commodities. If we lack or lose it we diminish our abilities both individually and collectively to achieve and to continue. It is an emotion which has been very present in a lot of the conversations and exchanges which I have had this week.

Hope was there when with others I attended the NHS Mobilisation meeting chaired by the Cabinet Secretary. It was a hope that through deliberate and focussed action we could begin to restore NHS and social care services to where they had previously been, learning lessons from the pandemic response and ensuring that we are as prepared as possible for the coming winter. It is a hope not based on day-dreaming but solid hard work which through a cautious ending of lockdown and opening up of society means that we will meet the current and future challenges of Covid19 with as much preparedness as possible.

Hope was there when I spoke to a manager who had to deal with the family of a co-worker who had died as a result of Covid19. It was there when I spoke to the family themselves. It was a hope that tomorrow would be better, that they would slowly be able to put back together the shattered pieces of their lives and find a new way of living without the strong presence of their loved one. It was a hope which they desperately needed to pull them through into their future  because right now they are drowning in the emptiness of loss and the pain of grieving.

Hope was there when I read a beautiful pain full letter from a mother unable to hug and hold her adult daughter because she lives in a residential home and is subject to the current restrictions on visiting, including the wearing of PPE and social distancing. The mother’s poignancy was the hope that the time would come soon when they could be properly together as once they had been in an intimacy of touch and belonging.

Hope was there when with so many others I was moved by the hundreds of stories which flooded Twitter and Facebook on Wednesday during Care Home Day as folks took time to share stories of amazing compassion and care; as they reminded us all that care homes are places of life and vibrancy, places where individuals are enabled to life to their fullest and when the time comes to end their days surrounded by dignity and solace. There was a real sense on Wednesday of a hope that sometime soon we will return to something like normal and that sounds of laughter and song, of banter and memory will fill the silence that has enveloped so many care homes. But in doing so without forgetting the pain and sadness of the last few months and with a desire to hold in fragile memory those who have been lost.

Hope is an essential requirement to enable all of us to find the energy to deal with challenge, whether professional or personal. I recognise that there are countless thousands who need to believe that there is hope. I know that too many have lost their jobs and their sense of self and personal worth as a result of this pandemic. I know that too many have been deeply scarred by the effects of lockdown on their mental health and wellbeing. I know that there are countless families who will never be the same because they have lost someone to the virus. I know too that there are thousands who fear for the future because they run a business or work for an organisation and are uncertain about how or when they can get back to ‘business as usual.’

So, hope is an essential commodity to enable life to flourish and for purpose to have direction.  

But and it is a big but – that hope has to be grounded in some degree of reality. Hope has to be rooted in truth and grounded in carefulness. As the poet Heaney says it is a hope that has to be worked for. So, it was with a sense of real despair I heard yesterday some of the words of Boris Johnson, the Prime Minister. I am deeply concerned that by suggesting that ‘It will all be over by Christmas’ that he is in danger of echoing the mistakes of those of a previous generation who thought that resolution and restoration would result with a quick victory over an enemy in 1914 and that all would be well by Christmas.

Covid19 will not be over by Christmas. We will live with it for many years to come. We will have to live with its pernicious ability to destroy lives and shatter love. But with discovery and ingenuity we will discover how to control and lessen its harm and how to heal those whom it hurts. But we are not there.

A false hope is a dangerous illusion because it prevents caution and fosters reckless action. Anyone who has lived through the hell of these last few months in the care home sector, who is still not able to freely see and be with loved ones, will know the huge sacrifices that have been made by so many. We risk throwing all that away, we risk the escalation of danger, should we be deluded into thinking that things are about to be sorted and solved. Hope has to be rooted in sense rather than expediency, lives matter more than anything and we cannot use them as the vehicle for populism. Hope has to be worked for.

So, I end the week with hope. It is a hope grounded in the knowledge that by safe and slow steps we are edging forward as communities and as a nation. It is a hope that we will support one another through the days ahead in a way that affirms our humanity, recognises the pain of others and upholds those who are most in need of support. It is a hope that by collective support and cautious planning rather than naïve rhetoric we will meet the challenges of the autumn and winter ahead.

For one thing I am sure of is that Covid19 has changed us all in ways which are unimaginable.

“The world is indeed full of peril, and in it there are many dark places; but still there is much that is fair, and though in all lands love is now mingled with grief, it grows perhaps the greater.” 

― J.R.R. Tolkien, The Fellowship of the Ring