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.
Dr Donald Macaskill