A few weeks ago, I gave a talk at a conference on social care and technology. Well in truth I recorded the talk because I was unable to attend in person because I had Covid. It was entitled ‘Moving from person-centred to person-led: How can technology play a part in building a more inclusive experience of care support?’

In light both of thinking about that talk and in reflecting on the pandemic experience of social care in Scotland, I want in this blog to broadly seek to map the journey to date in terms of personalisation and the distance we still have to travel to what I would argue should be the aim of all social care support, namely a person-led approach in practice which enables personal autonomy and which is seen in practice as much as in values, policy and political rhetoric.

The concept of ‘person-centredness’ is not new in fact it is in some sense, I would suggest, quite dated. It found its strength and real dynamic in the disability civil rights movements in the United States and Canada in the 1960s and 70s, but its origins go even further back. Faced with thousands of returning workers and the huge upheaval caused to commerce and manufacturing by the Second World War, many American industries in the 1950s began to think about their future direction of travel and how they could better glean the experience and skills of their workforce in charting that future. They developed a range of models which helped to put the worker in the driving seat of some of the largest US companies – at least in theory if not in practice. Importantly what developed were a set of models and approaches to planning and to enabling worker voice to be heard which were the most inclusive, creative and dynamic that had probably been seen in that environment.

From that industrial context, in the 1960s and 70s we began to see the use of some of these models, and their thorough re-adaptation by the inclusion movement as part of the disability civil rights campaign. Faced with the much campaigned for closure of long-stay institutions and asylums in the United States and Canada, advocates began to develop tools and models which would enable the people most involved by the closures, the people with learning disabilities, to be the centre of planning and re-design for their future lives. If inclusion was to mean anything it was not just to be the changing of an address and the staff who supported the individual, it was to be the re-orientation of a whole life as well as the manner of that care support. It was to be about putting the person at the centre of their lives.

The inclusion movement developed models such as PATH and MAP amongst others with an emphasis on literally putting the person at the centre of whole scale planning sessions, which were creative, dynamic, graphic, colourful and not dependent on pre-determined solutions and outcomes. The emphasis was on achieving what the person wanted, of dreaming big and charting the steps to implementation in collaborative and mutually agreed ways.

You can read a lot about the story of person-centred planning and personalisation both in the United States and in our own country where these philosophies became influential in social care delivery in the 1980s and 1990s. They deeply influenced the then emergent independent living movement and are at the root of our later social care legislation. I can commend Personalisation and Human Rights.

The radical new dynamic of inclusion and re-prioritisation which person centred planning tools evidenced can be best seen in a model like PATH and its associated principles, which in summary stated that:

• The control is with the focus person and their advocates
• Universal needs are as important as medical needs
• The focus in on an individual’s gifts and aspirations, not individual needs and deficiencies
• There is a future orientation
• There is a commitment to address conflict openly and honestly
• There is a commitment to reach a consensus for action
• There is a willingness to come up with non – traditional solutions.
• This is about inclusive process not pro forma
• Such planning will not produce standardised and predictable outcomes.

Anyone involved in Scotland’s own closure of large-scale institutions over the last few decades will know well the benefit of such planning which put the person at the centre. It was a process that demanded much of professionals and the need for them to re-conceive their own role in the dynamic of commissioning, contracting, delivery and evaluation of care support.

It is therefore maybe not surprising that the emphasis on ‘personalisation’ and person-centred planning was at the heart of the developing social care legislation which resulted in the Social Care (Self-directed Support) (Scotland) Act 2013. It is there that we see an emphasis on principles of informed choice, participation, collaboration and personal control. It is there, in some of the most progressive and dynamic legislation of its type we have ever seen, that we had the potential of a real and radical control by the individual citizen. This control was not just around their planning of support, but the managing of that support, the budget for that support, and the evaluation of care support.

The potential of self-directed support was immense. The Independent Review of Adult Social Care (IRASC) and other equivalent reports and audits have shown why this legislation has in large part not been the success we all desired in its implementation. Feeley highlighted that person centred working was critical – but he also showed the way in which there were massive implementation gaps – vested interest, power dynamics imbalanced, retention of control, failure to grant true autonomy and give real choice.

Elsewhere, not least in health environments, the emphasis on person or patient centredness has become almost a given, even without the robustness of the principles which are evident in the term’s origin.

So where are we now in social care in Scotland? I have long argued that social care support must as a system and model embed and foster the autonomy, control and direction of the person being supported, rather than as it is now, overly directed and influenced by commissioner, contractor or provider.

But I think we have now reached a stage where we should recognise that the logical consequence of both policy and practice is that we need to move away from person-centredness to models and approaches which are truly and fully person-led. The individual person needs to be fully autonomous within the care and support relationship dynamic. They need to not only become the budget -holder (though it would be great if everyone even had that choice!) but they need to become the director and owner, not an actor and passive recipient of their lives; they need to truly have control, to really become the initiator, originator and creator of their care support.

Social care has become a transactional dynamic where the system has been elevated above the person, where the rhetoric and policy speak of person-centredness is given a nod, but the reality is the individual citizen has become wholly passive in too many contexts and has diminished autonomy.

I would suggest what we have witnessed in the pandemic in terms of a governmental, public health, clinical and social care response has further perpetuated this stripping away of autonomy and individualism from the person. We have made decisions and interventions which have addressed the need of the collective and group (as we used to in the worst examples of institutionalised care) and have failed with the challenging requirements of truly person-centred, person-led, autonomous intervention. In this sense I feel we have failed the individual’s distinctive, personal human rights of control, choice, autonomy, and self-decision.  Perhaps none more so than in our care home response. We have addressed the needs of a collective community on too many occasions at the cost of individual resident control, voice and choice.

I am not the only one who has been suggesting that there is not only a distinction between person-centred and person led support but that we need to move as a whole sector to truly putting the individual in the lead rather than just at the centre of receiving care and support. Jenni Mack in an excellent blog articulated this well by talking about her care support:

‘How is this different to person centred? Well, person centred would be reading care plans and seeing that Mr A used to have toast with marmalade every morning without fail prior to moving into your care and assuming that this will be his preference now. Person centred care would show that you showed an interest in him and provided (what you thought was) his preference. The one error in this was that you didn’t ASK him. Perhaps his late wife made this breakfast for him in the past and he ate it without a grumble so as not to hurt her feelings and he would actually love some cornflakes. Perhaps he DID love this breakfast but now his taste buds have changed and he finds the marmalade bitter. Perhaps he just fancies a change. So the moral of this is, communication. TALK to people, and NEVER make assumptions, even if you believe you know them well. Perhaps Mr A will continue to eat toast with marmalade for the rest of his days, but maybe just maybe he’ll branch out to new tastes and really enjoy them. We are never too old to try something new!’

Person-led care support is what, I would contend, not only the individual but the entire system requires. So let us stop talking about person-centred care and support and instead really put the individual in the lead, not least in the creation of a new National Social Care Service. Person-led care support denotes a transfer in the power relationship from the system to the individual, from the model and process to the citizen and person.

Indeed, you could argue some of the chuntering from the usual suspects against some of the IRASC ideas –is that there has been concern of a loss of control, autonomy, and power, including finance and political influence not  from the person in receipt of support but from other stakeholders.

The world has changed – people want control – and not just a passive say but full voice and control of health and care decisions – that’s after all what they have in all other areas. We need to catch up – social care is ready for that journey – it is entrepreneurial and dynamic.

The age of person-led care support should be replacing the chat about person-centredness. Autonomy is not easy for those providing support or those receiving care, but it is the necessary requirement of a social care system come of age.

The uncomfortableness of the autonomy and power dynamic is one we need to own and accept if we are really going to radically transform social care in Scotland. That place of discomfort is where we need to be if we are to enable autonomy, dignity and rights to be at the heart of the care support dynamic.

The American poet David Romtvedt writing of a very different context expresses both the discomfort of autonomy but also its treasure.

Autonomy

Now at three, my daughter answers every question

beginning with “Would you . . . ?” by saying, “No.”

And every gesture I make toward her she considers

an act of aggression. She is fierce in defense

of her integrity while reminding me many times

each day that “I love you, Dad.” And I understand.

I love her, too, and would stand aside as, like a flower,

she blooms. When I was ten, my father made me sit

outside in full view of the neighbors and play German polkas

on the piano accordion. It was hot, and both my body

and the large black musical instrument became slick

with sweat. I tried to play quietly, fantastically

hoping no one would hear, and my father screamed,

“Louder, play louder!” I felt I could not bear

my embarrassment and impotence, my father’s complete

power over me. Yet I did bear it. I bore it as I had to.

Such a small thing: to play the accordion for one’s father.

But it was not small. Those moments of childhood return,

and my stomach is a dense knot of hatred and shame.

My sad father, wanting happiness and ease, shaking

with exhaustion when he came home from his labor,

called me to bring the accordion outside and play

while he rested, and I bitterly did so, and he knew.

But he could not change it, could save neither

himself nor me. So you see how it is that I am elated

when my daughter says no again, her voice a single petal

that I must not try to catch as it tumbles to the ground.

Autonomy | By David Romtvedt | Issue 241 | The Sun Magazine

Donald Macaskill

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thank you. 

 Dr Donald Macaskill 

 

 

 

 

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

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

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

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

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

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

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

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

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

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

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

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

The Little Old Lady in Lavender Silk

by Dorothy Parker

I was seventy-seven, come August,

I shall shortly be losing my bloom;

I’ve experienced zephyr and raw gust

And (symbolical) flood and simoom.

 

When you come to this time of abatement,

To this passing from Summer to Fall,

It is manners to issue a statement

As to what you got out of it all.

 

So I’ll say, though reflection unnerves me

And pronouncements I dodge as I can,

That I think (if my memory serves me)

There was nothing more fun than a man!

 

In my youth, when the crescent was too wan

To embarrass with beams from above,

By the aid of some local Don Juan

I fell into the habit of love.

 

And I learned how to kiss and be merry- an

Education left better unsung.

 

My neglect of the waters Pierian

Was a scandal, when Grandma was young.

 

Though the shabby unbalanced the splendid,

And the bitter outmeasured the sweet,

I should certainly do as I then did,

Were I given the chance to repeat.

 

For contrition is hollow and wraithful,

And regret is no part of my plan,

And I think (if my memory’s faithful)

There was nothing more fun than a man!

 

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

 

Donald Macaskill

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

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

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

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

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

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

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

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

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

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

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

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

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

Everything is Going to be All Right

“How should I not be glad to contemplate

the clouds clearing beyond the dormer window

and a high tide reflected on the ceiling?

 

There will be dying, there will be dying,

but there is no need to go into that.

 

The poems flow from the hand unbidden

and the hidden source is the watchful heart.

 

The sun rises in spite of everything

and the far cities are beautiful and bright.

 

I lie here in a riot of sunlight

watching the day break and the clouds flying.

 

Everything is going to be all right.”

 

Derek Mahon, from Selected Poems

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

 

Donald Macaskill

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Donald Macaskill

Tuesday sees the celebration of International Women’s Day, 8 March, 2022. This is an annual event which raises the profile of the experience of women and girls around the globe. The theme for 2022 is “Gender equality today for a sustainable tomorrow.”  Regular readers of this blog will know that I have written often about the strong female influences in my personal and professional life, so I want to spend a bit of time this week reflecting on some connected thoughts from those insights.

1.

It was as far back as 2017 that I appeared before the Scottish Parliament’s Economy, Jobs and Fair Work Committee and gave evidence relating to the Gender Pay Gap in Scotland. A few months later the Committee issued its thorough report ‘No Small Change’  which identified that gender segregation was a real phenomenon within the care sector in Scotland. Indeed, Scottish Care in its evidence to the Committee argued that there existed systemic gender discrimination in the way in which we treated the predominantly female social care workforce in Scotland. Sadly, some four or five years later despite all the rhetoric about reform and reconceptualising care services we are still faced with clear gender discrimination in the way in which we prioritise social care and its largely female workforce. I am more and more convinced that we will not address the dis-ease afflicting social care provision unless we call out the gender discrimination which is so characteristic of the way in which social care in general and its workforce in specific are treated sector. At the risk of personal repetition, I said five years ago that were this a workforce which was 86% male and not 86& female then we would not have had the travails of unequal pay nor the ludicrous terms and conditions which are deemed acceptable by contracts from local authorities. Indeed that latter point was forcefully and cogently articulated in the Fair Work in Scotland’s Social Care Sector Report in 2019. It stated:

‘The evidence suggests that the undervaluing of care work is, to a significant extent, linked to the predominance of women workers in the sector. 11 The view of the Social Care Working Group was that part of the failure to value social care comprehensively is due to its status as women’s work. Women face systematic labour market disadvantage, including occupational segregation, workplace discrimination and lack of flexible working. Institutionalised undervaluation is common in highly feminised jobs and occupations, contributing to the gender pay gap (of 15% in Scotland). Social care work is also less visible than other work, taking place in service user’s homes rather than workplaces, with implications for skills recognition and for collective organising.’ (page 14)

Calling out gender discrimination in social care requires us to continually underline the reality that gender segregation is a fact which requires attention. Part of the reason we fail to value social care as a whole is that it is still seen by and large as ‘woman’s work.’

2.

At the heart this gender segregation challenges our understanding of what care itself is and the value that we put on the art of care. In the last few years, we have seen the offensive articulation of a belief that care is ‘low skilled’ and I cannot help but believe that such an assessment is in part because of both the fact it is undertaken predominantly by women but also that care itself is deemed to be of lesser value and import to society than a technical set of skills or attributes. Such pervasive gender stereotyping must be challenged not just for what it says about the workforce but just as importantly for what it conveys about social care.

It will come as no surprise that for me social care and our ability to prioritise it and value is both the bedrock and heart of our society and should be valued because it evidences a priority which captures the essence of who we are as a society and as communities. But clearly despite the fact that social care is a massive economic contributor to the overall economy wider society still perceives it in negative terms, in language of cost, burden and deficit. Take for instance the much heralded launched of the Scottish Government’s National Strategy for Economic Transformation report ‘Delivering Economic Prosperity’ in the last week. Except for mentions of support for the Living Wage in Adult Social Care and a passing reference to technology in care, social care doesn’t merit a mention.  I am utterly dismayed that despite the travails of the last two years and the heightened awareness of the intrinsic and fundamental importance of social care that this document fails to prioritise social care and its workforce, businesses, and employers. Instead of a nation considering that part and parcel of economic prosperity is a prioritisation of a social care system and supports that potentially becomes the engine of that prosperity there is a complete failure to think radically and creatively with people at the heart. Gender bias and the pay gap are mentioned as is the need for radical childcare, but the contribution, entrepreneurship and creative potential of the largest female workforce (outside of the health sector) is ignored.

3.

But the systemic gender discrimination we witness isn’t just to be found in the way we treat our social care workforce, or fail to recognise its economic value and ingenuity, it has also been sadly the experience of our response to the global threat which has bene the pandemic.

As the United Nations in various reports in 2020 and 2021 has underlined the pandemic has highlighted the way in which as modern societies, we are so reliant upon women both in the frontline of care and health services but also at home.

But as the United Nations Women report on Covid19 states:

‘In times of crisis, when resources are strained and institutional capacity is limited, women and girls face disproportionate impacts with far reaching consequences that are only further amplified in contexts of fragility, conflict, and emergencies…

Despite these numbers [in health and care], women are often not reflected in national or global decision-making on the response to COVID-19. Further, women are still paid much less than their male counterparts and hold fewer leadership positions in the health sector. Masks and other protective equipment designed and sized for men leave women at greater risk of exposure. The needs of women frontline workers must be prioritized: This means ensuring that health care workers and caregivers have access to women-friendly personal protective equipment and menstrual hygiene products and are afforded flexible working arrangements to balance the burden of care.’

4.

Lastly any consideration of International Women’s Day and a reflection on social care has to also face the challenges posed by the unequal treatment of women in terms of their health and social care. It is not just the social care workforce which is predominantly female and the victim of gender discrimination it is also sadly the fact that the majority of those supported and cared for are also themselves women. It is estimated that in the United Kingdom that 61% of people with dementia are women and 39% are men. Accepting that this is in part because women live longer than men it is not that difficult to evidence discrimination behind the data. There is relatively little research focus on the specific genderised characteristics of the disease that may impact upon women. Indeed an earlier report by the Alzheimer’s Society rightly stated that women and dementia are the ‘marginalised majority.’ The fact that dementia is the major cause of death of women across the United Kingdom is a reality that few consider or talk about. I cannot be the only person who having marvelled at the unified scientific community which brought about such astonishing breakthroughs in the discovery of the Covid19 vaccine, has pondered what would happen if equal focus and priority was given to finding treatments and interventions for dementia. Is it too simple a leap to suggest that both age and gender discrimination has a contribution to such relative lack of fiscal priority?

International Women’s Day is an opportunity for us all to focus on the contribution and creativity of women in our communities; it should also be a call to address the systemic discrimination that treats women and girls less favourably and equally, whether in social care, economic opportunity or in disease management and research.

Donald Macaskill

I’ve often remarked in this blog that in the strange patterning of days some words seem to become prominent in the conversations of the moment. Perhaps the word of the past week and for such strange times is ‘freedom’.

Freedom, that most elusive of desires, an emotion and state unable to be grasped and held, always open to escape, always unsettling, rarely achieved. It carries with it connotations of being empowered, having the right to act, to speak, or think as one wants. We celebrate freedom of choice, the liberty to be autonomous, the right and privilege to not be shackled or imprisoned by another or indeed by ourselves. In literature and art we try to depict the freedom of birds that fly, of oceans that stretch out, of rivers that determine direction. Freedom so hard to describe but so precious when absent.

Our newspapers across the political and tabloid/broadsheet spectrum were trumpeting headlines this last week declaring ‘Freedom Day’ a day when restrictions will be removed or largely limited. All of this following the announcement by the First Minister that on March 21st, the mandatory wearing of face masks in all public places, including pubs, restaurants, and shops along with the one metre physical distancing rule and the legal requirement for businesses to keep customer contact details will be removed. She declared this “is possible only because widespread vaccination coverage and better treatments have reduced the direct harms of the virus.”

Whether or not the slow restoration of former practice can be defined as freedom is a moot point. Indeed, along with the removal of restrictions comes the advocacy for caution and concern, a call to take public and personal responsibility. This is to be manifested in individuals choosing voluntarily to wear masks in crowded or public places, to be ‘sensitive’ to those who may have particular risks and vulnerabilities, and to act responsibly should one become ill.  A call to good neighbourliness and social responsibility is to take the place of mandating, legislation and requirement.

For many fellow citizens the reverting to former practice will indeed feel like a sense of freedom, but for not a few the next few weeks and months remain uncertain and fearful and feel like the lessening or loss of freedom. The disability advocate Dr Sally Witcher (@SalWitcher) writing on Twitter this past week asks:

“ Why should we have [to] be at the mercy of other people’s selflessness & willingness to protect/look after us? We’re not objects of charity. We’re equal active citizens. We fought for years for equality & human rights as relying on people to do the right thing just doesn’t work.

Of course we all want to go back to ‘normal’. None more than me after 2 years indoors. That’s what I call a massive restriction! Compared to that wearing a mask, etc is no restriction at all. And if businesses installed air filtration there have to be business benefits.

So-called ‘restrictions’ are protections that enable everyone’s freedom, not freedom for some at the cost of loss of it for others. They keep everyone safe from long Covid, new variants, and still unknown long term clinical consequences of even mild illness.”

It certainly, does not feel like freedom for so many people who have needed the maximum degree of self-protection from this still pernicious and dangerous virus.

What will happen to social care staff in care homes and homecare remains at the time of writing at best uncertain. Take care homes as an example. We are still awaiting guidance from clinicians and Public Health Scotland as to what, if any mitigations and measures will be required into the future. It is likely there will be a degree of testing for staff and potentially visitors. But how this will be undertaken, by whom, and how it will be paid for given the UK Government’s statements to remove free access to tests (including in care homes) in the last week, seems uncertain.  What will be required about masks if anything?

But what is even more pressing is the need for clarity on the current restrictions being placed on care homes. We are still caught in the endless cycle of care home residents having to isolate should an outbreak be declared in a care home and many unable to engage in normal activity and relationships. Such periods of isolation can literally go on for weeks because no sooner does one period of 14 days end then another often seems to start creating a new ‘outbreak’ and often as a response to very few cases. As many of us have been arguing with and trying to convince clinical leaders – and to date unsuccessfully – such extended periods of isolation (even with a named visitor in place) are unacceptable, disproportionate, unnecessary, and hugely damaging.

When is freedom going to come for them and what will it look like? In a week which has seen a significant increase in the number of Covid cases affecting care home residents this virus shows no signs of going away. So what does living with the virus mean for these individuals – a perpetual state of isolation and confinement? What quality of life is that? Anecdotally many managers and staff are saying to me that the level of decline and deterioration of residents forced into such isolation is wholly unacceptable and is they are convinced a set of actions which shortens life and certainly precipitates significant cognitive decline. This is simply not justifiable on any grounds, epidemiological, clinical or moral, nor is it, in my opinion, at all proportionate or legitimate in a legal sense. We have declared freedom for the wider public and yet still have no open door to a better future for those who have suffered the most.

Sounds of freedom outside and the rush to throw off masks and restrictions for so many in our care homes ring hollow and empty in both rhetoric and reality.

But of course, freedom took and has taken on a wholly different level of meaning in the last few days as we have seen the horrific scenes from the Ukraine and the results of a despotic dictator wreak havoc across a modern, inclusive and open society. The fragility of civilisation has never been so vivid as I have watched fathers break down in tears leaving their children behind as they are conscripted into a fight against the enemy of their people; as I watched people cowering to shelter from attacks in underground stations; as bombs were seen to rip open the homes of the innocent and land on kindergartens; as tens of thousands started a journey as refugees seeking a border of peace and escape. As Europe is plunged into a darkness we have not seen for generations, we are all of us yearning for a return to peace. Freedom seems so far away for so many in the blood and tears of the Ukraine this morning.

All of us wherever we are and whoever we are seek that common gift of freedom knowing only too well that sometimes it comes at a very real price. So today with so many I will spend time thinking of the women, men and children of the Ukraine before all else because it is only in solidarity with those who are suffering that true freedom for ourself comes.

I leave you with the words of a poem:

freedom

the elusive one;

once caught always lost,

once lost always found,

where is she to be searched for?

when does she discover you?

 

they look for her in their books

and search for her in their stratagems;

by policy papers and wordy manifestos

they fail to imprison her laughter.

 

they seek her in empty corridors

echoing with the sounds of powerless dictators,

dined to bloating on their own importance

fed to obesity by a diet of propaganda.

 

they seek her in the warmth of missiles

and search for her amongst a bed of nuclear pillows

pulling back the blanket of macho security

to reveal the nakedness of fear.

 

they seek her in the words of hatred

where prejudice becomes the scapegoat’s friend

and bullying the national sport

of nations too ashamed of difference.

 

they seek her in your heart

where she lies dormant

emptied of enthusiasm,

lazy through lack of exercise

exhausted by inactivity.

 

freedom

the elusive one;

when will they learn

she is not a place but a sound

not a word but a whisper

not a weapon but a heart

not a prize but a gift.

 

When will they learn?

when freedom imprisons hate

and freezes out fear.

 

Donald Macaskill

Behind every policy and legislation there is often a passion and a movement; behind every change there is frequently a vision and an aspiration. The world of social care and social work in Scotland is no less than any other sector. We have plenty of aspiration and hope, expectation and possibility.

The creators of the seminal and ground-breaking Social Work Scotland (1968) Act were inspired by the realities of deprivation, harm and failure evidenced in the 1950s and 60s across a Scotland impoverished by the trauma of war and the failed priorities of consecutive Westminster administrations.

The disability civil rights movements of the 1960s through to the 1980s declared that all people regardless of disability had equal rights to belong, to be included, to be heard and to be valued. They inspired and influenced policies such as ‘The Same As You?’ (2000) which led many of us to be involved in the closure of our long stay hospitals. And with an adequately resourced Change Fund it enabled a process of people with disabilities beginning to be included in their communities not shut away from belonging; it gave voice to people so that they could articulate their story and their hope; it rooted in practice and policy a change in orientation which recognised that it was mainstream society that disabled individual contribution rather than the labels and conditions by which we imprisoned individuals in asylums.

The desire to have control and choice, to be able to take charge of your own social care support and care, to be freed from the presumption that the Nanny State knows best and delivers best, to be able to become the director of your own decisions, all  under the umbrella of the independent living movement was that which provided the energy and spark which brought about perhaps one of the most dramatic changes in social care legislation and policy in the form of the Social Care (Self-directed Support) Act in 2013. Being present at the Ministerial launch I recall the passion and hope, aspiration and creative possibilities of designing a better tomorrow from the recognition that things were broken.

So too the creation of what became known as a health and social care ‘integration’ policy enshrined in the somewhat dry and limiting Public Bodies (Joint Working) legislation in 2014 – was centred around the aspiration that there would be one continuous pathway from first point of contact with social work all the way through support and care whether in hospital, community or care home, all the way to the end of an individual’s life. The dream and vision was that a person should not have to tell their story to multiple people, should not have to undergo multiple assessments which detailed and described the same thing because data was not transferred, professionals did not communicate and systems did not speak. Integration was primarily and always motivated by a vision of the person, the citizen, at the centre having control and agency.

Then most recently we have had the huge amount of commitment and shared vision and desire which made the Independent Review of Adult Social Care – also known as the Feeley Report – into a document whose words came off the page and painted a picture of possibility for the future of social care delivery in Scotland. It is a document which attempted to live up to the vision of a new beginning rooted in the at times painful experience of the pandemic and before. It was a vision of human rights and choice, of person-led agency and support, of contracts and commissioning of services which were equitable and fair, of reward and recognition of care as a career of potential – and so much more. It was less concerned with the structure more interested in the soul, less about the model more focussed on the energy.

The landscape of social work and social care in Scotland is indeed rich in movements of change and in voices of challenge. There is enough in text and legislation to motivate and inspire. The problem has always been implementation – the challenge and the failures have always been our ability to drain the vision from the text, to limit the possibility which progressive legislation offers. The sin has been to be tempted to make the system and the model, the vested interests of power and traditional practice, the familiarity of the known and the predictable – into the gods of the moment.

Our ‘implementation gap’ as Feeley termed it, has been the pit down which many an initiative, so much creativity, and so many hopes and aspirations have fallen. It is a deep hole but not an accidental one and it can be filled in!

This last week in so many conversations I have heard voices of fear and anxiety being raised about what the future of social care supports and social work might look like in Scotland. I share those very genuine fears and concerns but knowing and naming them, calling them out and recognising the risks, is part of the way in which we can avoid failing to live up to the aspirations which so many have articulated and so many hold.

The most obvious fear and this is well represented in much of the feedback and analysis in the consultation to the National Care Service is that we become so obsessed with the structures and systems, with the models and processes, with the titles and power-bases of a creating a massive new system that we lose sight of the vision and the energy which is necessary to ground real change into felt reality.

The First Minister has on a number of occasions articulated her desire to bring from the hurt of the pandemic a change which will be worthy of that pain – the creation of a National Care Service. A noble aspiration but one which has risks of falling into that implementation hole well before the summit of promise is reached.

One of those risks, I believe, is that the energy that directs success has to be fed by a proper awareness of what social care is and is not. Social care is not health care – we certainly do not want a shadow of the National Health System – and any attempt to achieve that would be a crippling failure and a massive denial of the hopes of those who use, work and deliver social care services and supports. We have all of us to be aware of and defensive against the creeping medicalisation and clinicalisation of social care and social work delivery. Such is an anathema to individual choice, citizen control, personal agency and an approach which is about enabling participation not fostering dependency, nurturing citizenship not limiting contribution. Social care can never be the maidservant of a National Health Service. What we want are the principles of choice and individual control, of independence and real engagement and involvement, of participation and personal control to be at the heart of what grows out of the next few years.

The danger is that legislation can either strangle aspiration or even if well formed can falter at the point of implementation. Integration became a bun fight between two goliaths – the NHS and local authorities – with Health and Social Care Partnerships the emasculated body in the middle and with Chief Officers engaged in a constant referee match between vested fiscal interests and power dynamics. As someone who examined why integration did not work – a lot of the time – the system failed the people by failing to make hard decisions when they were needed and failing to bring order to chaos when it occurred. Instead of the dream of integration with the person at the centre of a continuous pathway of consistent support and care – we have shamefully disappointed the dream.

Even if we get the legislation right – as we certainly did in the Self-directed Support Act – again the gap of implementation where fiscal limits and austerity, where power bases in senior management at local level, led to an inevitable suffocating of promise and a marginalising of creativity. Even today I hear the ridiculous scenario where people talk about SDS on the one hand and social care assessment and provision on the other – there is and should only be one way of accessing social care and that is through self-directed support. There is no excuse – and for my area of interest especially for older people – of citizens being denied the choice, budgetary control, individual say over which provider you want – in any place in Scotland today. Yet the reality is that in so many places choice is based on what age you are, who you know, what party colour the local authority political leadership is, and how much of a battle the local HSCP has managed to wage against the Big Two. We have shamefully disappointed the dream.

The next few weeks and months will be critical for the formation of the National Care Service and the much wider hopes and dreams of the Feeley Review. The concerns and fears I am hearing are that we will focus so much on structure and process that we lose the passion and purpose. We will be so concerned on achieving the model that we will lose sight of the necessity to really involve and include, engage and engender the energy of the people who need to make that journey with us. There is a real fear that the necessary leadership with real world knowledge rather than acquired  awareness to achieve this change is simply not there either politically or operationally. Such leadership demands inclusivity and involvement, not partisanship and a failure to engage. There are too many whispers and behind the door conversations. Indeed, this is perhaps especially the case in the bringing together of health and social care – especially the providers of the latter – a reality that in the last calendar year has barely happened at all. Meaningful change is never achieved by siloed management.

There has always been an energy and movement in social care across Scotland. It is one at its best that has mirrored our humanity and hospitable concern for the other, to include and involve all, to be open to the challenge of the new and the creativity of the different. It is a social care world which has rooted equality and fairness, human rights and dignity at the heart of all that is delivered. It is also one which has authentically talked the talk and been real rather than fictional whether that be about fiscal reality or delivery challenge.

We are about to start a whole series of political debates on the creation of a National Care Service – in these I hope our leaders will listen, not to the rhetoric of political echo chambers, but to the people who use social care supports, the workers who deliver them, and the providers and employers who are the organisations by whose agency most social care support is enabled.

When all is said and done change is born out of a vision of betterment and of new possibility, of a new and better way of being and belonging, of caring and compassion. The current Poet Laureate Simon Armitage in his poem ‘A Vision’ warns of the possibilities of our visions landing in the landfill site of disappointment. But the way we prevent the architectural dreams of a changed world becoming the missed opportunity of our future, is to work hard; to involve all; to listen deeply; to learn openly and to create together rather than apart. The future of social care deserves no less.

 

A Vision

by Simon Armitage

The future was a beautiful place, once.

Remember the full-blown balsa-wood town

on public display in the Civic Hall.

The ring-bound sketches, artists’ impressions,

 

blueprints of smoked glass and tubular steel,

board-game suburbs, modes of transportation

like fairground rides or executive toys.

Cities like dreams, cantilevered by light.

 

And people like us at the bottle-bank

next to the cycle-path, or dog-walking

over tended strips of fuzzy-felt grass,

or model drivers, motoring home in

 

electric cars, or after the late show –

strolling the boulevard. They were the plans,

all underwritten in the neat left-hand

of architects – a true, legible script.

 

I pulled that future out of the north wind

at the landfill site, stamped with today’s date,

riding the air with other such futures,

all unlived in and now fully extinct.

 

From:  Tyrannosaurus Rex Versus The Corduroy Kid

Copyright ©:  Simon Armitage

A Vision poem – Simon Armitage poems | Best Poems (best-poems.net)

 

Donald Macaskill

 

 

 

 

At the current time the UK Government is undertaking a consultation on major proposals to change the provisions of the UK Human Rights Act – a piece of legislation which covers Scotland. The proposed changes are being presented as insignificant, but the reality is the complete opposite, and they should be a matter of concern to anyone concerned with the protection of rights in Scotland.

In his preface to the changes the current Justice Secretary, Dominic Rabb, asserts in passing that there are no plans to depart from the European Convention of Human Rights (ECHR) but he then states:

‘…our system must strike the proper balance of rights and responsibilities, individual liberty and the public interest, rigorous judicial interpretation, and respect for the authority of elected law-makers…

We make far-reaching proposals for reform, with a particular focus on those quintessentially UK rights, such as freedom of speech and the right to trial by jury.’

All sounding innocent enough and a blatant appeal to a perspective where the essential ‘values’ can be enshrined in a defence of freedom of speech even if the understanding of what that freedom is is frequently absent.

Throughout the narrative of the consultation plays to the crowd and a sceptic if not hostile audience and attempts to dress significant change in the clothes of acceptability.

It states later an aim to:

‘… overhaul the Human Rights Act passed by the then Labour government in 1998 and restore common sense to the application of human rights in the UK.

…The Bill of Rights will protect essential rights, like the right to a fair trial and the right to life, which are a fundamental part of a modern democratic society. But we will reverse the mission creep that has meant human rights law being used for more and more purposes, and often with little regard for the rights of wider society.

I will leave it to commentators far more qualified in the law to describe the detail of the proposals and why they are so concerning. Indeed, in that regard I would strongly recommend you look at the work of the British Institute of Human Rights and their campaign to defend the Act.

I want to, however, reflect on why in 1998 the Human Rights Act was one of the first pieces of the new Labour Government.

Anyone around in the 1980s and 1990s, as I was, would be well aware that if you believed for whatever reason that your human rights were being diminished or broken, abused or removed that the recourse you had open to you was to take a case all the way to Europe. From the women who fought for protection during pregnancy and won statutory support of their employment to the young people who fought to outlaw corporal punishment in our schools – Europe was the seat and source of protection and legal justice. It was a destination both distant and costly – a justice hard won over many long delays and years.

The creation of the Human Rights Act was under the banner ‘Bringing Rights Home.’ That phrase said it all – its essential core purpose was not to change or add to the human rights which were the fruit of the sacrifice of our forebears and which found voice in the UN Convention or the European Convention. No, the gift of the Human Rights Act was to bring those rights close to each of us. The Act made it possible for every citizen who felt the need for protection of their rights to have recourse not to a distant European court but to local courts. It sought to bring justice to your doorstep.

The Human Rights Act was about making human rights meaningful and relevant to every citizen. If you felt aggrieved, you had the potential to fight your case in your own community.

But even more important the Human Rights Act was about changing the way we talked about and used human rights. It was about taking these principles out of the courtroom and making them the conversation of community and relationship. The HRA was about making human rights mean something for the education you receive, the care you were given, the decisions made by your government – it was all about making human to go to relevant and real.

Over the years contrary to what some newspapers and some parts of the media might wish to portray human rights cases were to do with defending people with disabilities or making sure of equal treatment regardless of gender in terms of pensions – much less than prisoners, or foreign terrorists – they were about the issues of living together in modern community.

Now in truth there have been times when they have not achieved what they might have. There have been moments when we have paid lip service to our human rights laws- perhaps most poignantly during the pandemic. That is not the fault of the law but of those who have failed to live up to the higher aspiration and morality that human rights laws hold before ys.

The politicised attempt to diminish our human rights affects everyone for whom access to justice impacts on the care they receive or the life they would live. It impacts on decisions about treatment and medicine, around health and housing, about justice and the environment.

I hope we can all find the voice to keep human rights close to home. We dare not allow others with proposals ostensibly limited to allow the eviction of our human rights from our homes. It’s time to make sure we keep human rights at the centre of our homes. The Human Rights Act is the closest thing I know that makes sense of and roots the promise of the famous words of Eleanor Roosevelt from 1958:

‘Where, after all, do universal human rights begin? In small places, close to home—so close and so small that they cannot be seen on any maps of the world. Yet they are the world of the individual person; the neighborhood he lives in; the school or college he attends; the factory, farm, or office where he works. Such are the places where every man, woman, and child seeks equal justice, equal opportunity, equal dignity without discrimination. Unless these rights have meaning there, they have little meaning anywhere.’

Donald Macaskill

See also https://www.bihr.org.uk/blog/why-the-human-rights-act-matters-to-me-donald

At times during this pandemic a word, phrase or concept just seems to appear from nowhere to occupy a position of dominance in debate and discourse. This last week everywhere I looked I have seen the word ‘trust’ or heard it mentioned on radio or television, in meeting or exchange.

Trust is a fundamental characteristic of our being with one another in so many dimensions of our living. It is a word rich in meaning and possibility. The dictionary describes it as a ‘firm belief in the reliability, truth, or ability of someone or something.’ It denotes a sense of confidence, belief, and faith. All of these are concepts which are inter-related and inter-changeable. In my blog this week I want to consider the various dimensions of trust as they have struck me this past week and how fundamental a moral ethic of trust is especially during pandemic times.

Political trust.

In the job I do at Scottish Care representing a wide range of members with diverse perspectives I have always sought to refrain from direct comment on the merits or otherwise of any political party either in Scotland or in the United Kingdom but have hopefully been consistent in a critique of policies, behaviours and practices which have acted against the best interests of the care sector and those who receive care and support especially older individuals. Let’s face it there is not exactly a shortage of areas of social care failure across the UK on which there has been the requirement for critique!

When there is a time of crisis and challenge like all individual citizens, I have looked to political leadership to make decisions and act in a manner which upholds the best interests of the whole population, especially those who might not be able to advocate for themselves. Confidence and trust in political leadership during the pandemic has been essential, and whilst there have been areas where it has been necessary to be critical and to highlight shortcomings, what has remained as a strong expectation is that sense of trusting political decision-makers – however hard the decisions might have been – as having the best motives, intentions and aims. As we continue to take measures which reduce restrictions and mitigations to protect public health the extent to which we trust our political leadership has become if anything even more important, especially as the spirit of consensus and mutual agreement has diminished.

The events of the past few weeks at Westminster, the language of scurrilous accusation and demeaning diatribe, the occurrences of behaviours inconsistent with a required morality and social ethic, have diminished all those involved and have brought so much that we value in our political system into the most profound disrepute and deepest disrespect. We cannot move forward as a society to face the challenges of the future with a deteriorating political trust. We must be able to have confidence that the interests of the population are advanced ahead of the partisan self-interest of a few. Just as we trust that the bank notes in our pocket will be redeemed for their true value, we require a trust in political leadership which lives up to the highest values of public service and ethical practice.

Pandemic trust.

We have spent a lot of time in the last 23 months becoming amateur experts in epidemiology and the science of infection and pandemics. There has been no shortage of scientific commentary and some of it has been conflicting and contradictory. Some have been unable to deal with the fluctuating stances of scientific opinion believing that science provides clarity in definitive black and white colours. If anything, the pandemic experience has taught us that ‘trusting the science’ or ‘being led by the science’ is not a simple act of reading then implementation bur rather is one of analysis and interpretation. Trusting the science has been critical at various stages of the pandemic and there have been diverse responses to the same data because the nature of analysis is that there will always be degrees of interpretation and subjective opinion. But regardless of nuance and divergence, I do believe that as a whole we have both at an individual and collective level elevated the role of scientific analysis to a position of critical importance. But this has not come easily and the challenges of the next few months and weeks as we come out of Omicron will test the degree of trust perhaps beyond breaking point.

For those of us who are not able to scientifically verify the truth of statements and assertions made by ‘experts’ we have to ‘trust’, to be confident in the motivation and skill, the assertion and articulation of those who have been appointed to give advice and influence decision-making. That is not always a comfortable experience and perhaps gets to the heart of the nature of trust. Trust is always relational, it is the human letting go of self-defence, it involves the risk of encounter and exchange which might threaten and reassure in equal measure. Think of any meaningful human relationship you have ever had and at some point you enter into a landscape of trust and belief, when you lay down what you ‘know’ and can ‘verify’ and have to develop the hope and positivity which confidence in another over whom you have no control, begins to develop and grow. The cost of loving another is trusting beyond knowledge and living in hope and assurance.

Partnership trust.

Trust also has to do not only with individual person to person relationships but with the encounters we have with organisations and individuals who we work alongside and relate to. In the workplace trust is fundamental to the achieving of shared outcomes and aims. But as anyone who has ever worked on any shared ventures knows only too well, the reality of trust is something which has to be worked at and strived for – it does not just happen. Telling someone to trust you and to agree with your position or stance has to be grounded in the reasonableness of their prior-knowledge of you and the conviction that you have their best interests at heart.

The worlds of social care and health have not always ‘trusted’ one another – not that they have enmity or disregard for one another – but rather their mutual knowledge and awareness of the other has been limited or at times absent. Integration of health and social care services was meant to change all that. We were all meant to be developing systems and processes which had the person receiving care and support at the centre, and indeed in the lead as the director of their lives. We have fallen well short of that aspiration as the ground-breaking Independent Review of Adult Social Care Report indicated when it was published a year ago on Thursday last. The Feeley Report as it became known was received with the warmest and most extensive of welcomes by disparate parties – partly because through its author Derek Feeley – bonds of trust had been developed that suggested that its words were authentically the aspirations and hopes, dreams and vision of those who use social care supports and that it offered the promise of a reformed social care system for adults in Scotland.

This past week has also seen the publication of the responses to the Scottish Government’s consultation on the envisaged National Care Service which was a key part of the Feeley Report. There are many of them but having read quite a few they also share a sense that the time is right for change and that this is a once in a generation opportunity to achieve that. But there is also a sense that we must not in our focus on processes and structures, on systems and models, lose the vision and energy of the Feeley Review. This is where the trust comes in – those of us who for years have campaigned for a change to the delivery of adult social care which creates care support models sensitive to the people who use them, appreciative and valuing of the frontline workforce, realistic in the required resource and costs involved, and yet dynamic in inclusive flexibility – we have put our trust in our political leadership to bring these dreams to birth. We are trusting our political leadership to overcome partisanship, both at local and national level, and do what needs to be done to deliver a sustainable social care system that works for all citizens and treats all with equality, fairness and dignity.

Trust – whether political, for a period like a pandemic, or as the energy of partnership in change and reform – is the most essential of ethical values and commodities. Its marks are the ability to include and involve all, to hear the voices that disturb and unsettle, to soothe the concerned and fearful, to be consistent in compassion and courage. We all of us deserve to live as citizens in a land of trust.

This last week I was honoured to hear a reflection by the distinguished American social care leader Stuart Kaplan. In it he said that in a world of such uncertainty we can all have to be true and sure to our word. ‘Trust is our essential currency.’

And in relationships built on trust we can find hope and restoration, renewal and reform. The contemporary American poet Thomas R Smith puts it well:

Trust

It’s like so many other things in life

to which you must say no or yes.

So you take your car to the new mechanic.

Sometimes the best thing to do is trust.

 

The package left with the disreputable-looking

clerk, the check gulped by the night deposit,

the envelope passed by dozens of strangers—

all show up at their intended destinations.

 

The theft that could have happened doesn’t.

Wind finally gets where it was going

through the snowy trees, and the river, even

when frozen, arrives at the right place.

 

And sometimes you sense how faithfully your life

is delivered, even though you can’t read the address.

 

Poem copyright © 2003 by Thomas R. Smith from Trust by Thomas R. Smith | Poetry Foundation

Donald Macaskill