Make a revolution
My vision is that growing older should not cost any of us our lifestyles and what it means to be human
Jackie Marshall-Cyrus, Director of the consulting agency Jackie Marshall-Cyrus & Associates Ltd and creator of the campaign Jackie’s Revolution
Right in the middle of the town where I grew up sat a huge walled garden. On my way walking to school, I saw the tip of tall trees standing behind the wall. Bare branches in winter, tender leaves dancing in the wind in spring, deep green leaves getting ready for a farewell to summer, and crunchy brown leaves to kick on my side of the wall. Twice a day, I passed in front of its massive wooden doors, the green paint flaking away here and there. Sometimes, with a school friend we stopped and peeked through the keyhole. We could spot herbs growing unruly under the shade of the trees, a ray of sun filtering through the branches. It was a mysterious micro-cosmos that made living in the middle of “warehouse land” special. I felt that, contrary to the other anonymous towns that mushroomed around Milan, mine had a secret heart filled with stories of its sumptuous past when the aristocratic families of the city built fabulous countryside mansions. Rumor went that behind the wall there was a lake with a secret passage that run under the town and led to an escape route to the countryside. Maybe in reaction to a friend who always bragged about her family knowing the keeper, I imagined being the heir of one of these ancient families with double surnames, servants, wigs, and horse-drawn carriages, their hooves resounding on the stone in the courtyard. During the long summer afternoons when reading another page was nauseating, I laid on my bed with my hands behind my head and let my fantasy run.
Unexpectedly, one summer afternoon my friend invited me to go with her to the garden. In my short pants, sleeveless shirt, and braids, I stepped behind the green doors for the first time holding my breath. Locked in its silent sleep, the lake sat in the center of the garden, bordered with a stone colonnade that ended up into a dark tunnel. Behind the statue of Neptune covered with moss and holding to its rusty trident in the middle of the lake, the noble villa mirrored upside down on the water’s surface. Hidden from my keyhole view, I discovered dozens of fruit trees under the shade of the ancient trees. The keeper offered us purple plums that hid a tart green interior behind the sweet peel. Throwing the kernels in the tall grass, I realized I would have been contented even with being the farmer’s daughter.
A few years later, my braids gone, the garden was transformed into the city park. In my last year before graduation, every Sunday morning I walked along a dirt road of clear earth that crossed the park. On the other side of the once forbidden garden sat the city’s care home. With wool gloves on, I pushed open its squeaky door and I was welcomed by a damp and heavy air. Under the neon lights, lined along a corridor of light powder blue walls, sat old men and women in their pyjamas with their hair uncombed. I came to know an old lady and I visited her in her bedroom. Invariably, I found her sitting next to her bed with a skirt and apron on, her light gray hair tight in a knot. She had a golden wedding ring on and hands that reminded me of a geographic relief map. I dragged an armchair close to her, she held my hands and, as every Sunday, she told me about the house she left behind. Her kitchen, her bedroom, her little garden. She hoped to go back. Maybe tomorrow or next week. Her apron was a testimony to her intention of picking up a brush as soon as she opened her door. I listened more than I talked and, every time, she wished me good-bye with the same formula “Come and see me again.” I knew this is coming, so I strategically gave her my back as I put my coat on to hide my teary eyes.
Of that last winter at home, I remember the icy mornings waiting for a lift to go to school. The pavement was covered with ice and a thin layer of frost, the tips of my feet and hands tingled painfully, I fetl the uneven surface of the ice under the soles of my shoes. With the tip of my shoe, I played in a little depression in the ice, mindlessly enjoying the slippery feeling. The road was empty and silent and as I turned around I spotted tiny drops of frost revealing an otherwise invisible spider web attached to a fence. Fast forward 35 years, another thread - invisible, strong, and of our own making - connects me with Jackie Marshall-Cyrus. Jackie has a long-standing career in nursing and, stemming from her experience, she created her “Tribe,” a team of experts to help her shape her vision for alternatives to institutionalisation for our generation, and beyond. Just like my morning mist revealed the invisible design below, Jackie and her tribe are revealing, and most of all challenging throught the campaign Jackie’s Revolution, the pattern of adult care we have in front of our eyes and yet, until we are caught in its web, we fail to see.
Can you tell us a bit about your story and your career?
My story begins in the beautiful twin island Republic of Trinidad and Tobago. I was born in a small fishing village on the southern coast called Moruga. Historically, it was the place that Christopher Columbus first landed in 1498 on his third voyage to the region. I was educated at an all-girls college named St. Francois Girls College and a Polytechnic Institute in the capital city of Port of Spain.
At the age of 22, I’d read a spread in the Sunday newspapers during Nurses’ Week and on a whim I sent in an application to train as a nurse at the School of Nursing. Surprisingly, despite hundreds of applicants, I was selected to join a cohort of 60 students and begun my nursing education. Three years later, I graduated as a Registered Nurse in 1987 and worked mainly on surgical units and in the Accident and Emergency Departments. After I completed an Associate Science degree, I worked for the San Fernando City Corporation’s Public Health Department as a Public Health Inspector 1 in 1995. It had always my ambition to pursue a Masters’ degree in Education and driven to provide the best life chances for my three children, I emigrated to the UK in 1999.
My nursing career in the UK began at a small Community Hospital in Middlesex. It was an Intermediate Care Unit that catered to the rehabilitation and discharge planning of adults of 65 years old and over. In 2004 I moved on to a similar setting in Brent and whilst there I completed my BSc in Nursing Older Adults with First Class Honours at Buckinghamshire New University, followed by a Masters’ degree in Education.
I joined the Technology Strategy Board (re-branded Innovate UK) in May 2008 as the Lead Specialist on the Assisted Living Innovation Platform. I left the organisation in 2016 to set up my own consultancy to support industry and other organisations with sector expertise in age-related innovation and independent living.
What sparked your interest in aging?
I view ‘ageing’ as a natural phenomenon to which we are all subject. We don’t speak of, or apply the term ‘ageing’ to newborns, children of school age, teenagers, or people in general until mid-life. It would appear that ‘ageing’ and all its connotations only really begin to manifest at a particular point along the life course. If we are honest about ‘ageing’ we must approach it from an inclusive point of view and not exclude swathes of society, despite the fact they too are experiencing this social, physiological, emotion, psychological, sexual, and environmental process.
My interest is in the disenfranchisement, inequality, discrimination, prejudice, and overall societal devaluing of citizens at home and abroad based solely on their age. The way we treat with, speak of, and displace adults of a certain chronological age in our society continues to confound and frustrate me.
I recognised this very early on in my nursing career. Culturally my view was that the law ascribed the status of adulthood at a particular age. The determination at what age adulthood was ascribed varied in different societies, but the responsibilities that came along with it were clear. In our society it seemed this was the case until you achieved the age of 65.
I found it rather strange that in British society there was this demarcation between the rest of the adult population and citizens aged 65 and beyond. The pain and dehumanisation I witnessed over many years are indescribable. It is not unusual that some people develop the capacity to be less emotionally affected by pain and suffering because you see so much of it, day in day out. You either bottle it up inside, or share it with your immediate family just to be able to cope.
I struggled with the way everything changed for the people I’d nursed and formed relationships with. When you see the light go out in people’s eyes, when you witness people lose the will to live, when people tell you they no longer felt their life had purpose, or they felt abandoned by family and society, it changes you.
There was a turning-point in your career. Can you recall this episode?
It has been said that there are two kinds of pain, the one that hurts and the one that alters. I’d experienced too many of the first during my clinical years nursing older adults. The first incident reflects one of the pains that hurt, the second however was the one that altered everything.
The first incident involved a gentleman on an Intermediate Care Unit I worked on about 15 years ago. I was the Ward Manager at the time, and he’d been admitted for rehab and discharge planning because he’d been categorised as a “falls risk.” I recall sitting in a multi-disciplinary team meeting with him, his daughter, son-in-law, the Consultant, physiotherapist, and occupational therapist. He sat there while we were all discussing how much care he needed and what was best for him. As usual the “safest’ place for him was deemed a care home where he would receive 24 hour supervision. He quietly turned to me with tears in his eyes and said “Sister, please don’t let them send me there. If you do, you condemn me to a life of celibacy.” I felt as though I’d been punched in my gut. I could not continue and asked that the meeting be postponed. After they’d all left, I sat in my office and wept. That gentleman had totally disrupted my worldview when it came to men and women in later adulthood. I realised I’d been seeing the people I served as objects of care. I realised this man was a living, breathing, sexually active human being with all his strengths and fallibilities. Every single adult on my Unit was a living, breathing human being and nothing less. It was then I began to challenge the policy, practice, and societal attitudes toward people in the later stages of adulthood.
The pain that altered involved my daughter who at the time worked as a carer in a care home. She would talk to me about the culture and practices taking place there. Many were appalling, but I would listen and advise her on what she could and could not do to make things better. This one fateful morning she phoned me weeping bitterly from somewhere in the care home. She spoke about how a woman had been found on the floor in the space between her bed and the wall; she had apparently been there all night before she was discovered by the day staff. Her leg was grossly swollen, she was incoherent with pain, and as white as a sheet. The doctor was informed and put off coming to review her for several days, instead recommending analgesia. When she was finally reviewed it was discovered that she had fractured her hip. I think it was the pure agony and helplessness in my daughter’s voice that made me act. I contacted the Director of Innovation Platforms at Innovate UK and asked for a meeting. Out of that incident and meeting The Long-Term Care Revolution National SBRI Challenge was born and I’ve been on this journey since.
When it comes to care, it seems we keep sticking to an outdated way of thinking. What is your take?
I think we have lost our way somewhat. In the words taken from the musical Hamilton, we are “out-gunned, out-manned, and out-planned.” My feeling is that we’ve created something so complex and complicated that we cannot find our way out of it. Governments lack the audacity to unravel the adult health and social care system, despite very public and consistent failings. The NHS and adult social care have become political tools. I would go as far as saying even at the highest level of governance people profit from its failings.
The popular opinion is that our adult health and social care system is broken; I wonder if it was ever really roadworthy. Our system of long-term care has its roots in the Poor Laws Amendment Act of 1834; one year after slavery was abolished in 1833. Our adult health and care system is poorly aligned with the way we live, work and think today. It will take leadership that is rare, powerful, visionary, and underpinned by integrity to really overhaul the system and make it fit to go forward into the 21st century.
‘Care’ is one of those things that’s in the “too difficult” box, so we convince ourselves that if we divert more money, develop more policies, and publish more reports, we will incrementally make improvements. Yet, we’ve been doing this for 182 years. There is a saying that when candles don’t give off enough light, the answer is not to have more candles. The progressive answer is to create a new and more powerful source of light. I think this is very relevant to us today.
To create a new and more modern system may mean we have to deinstitutionalise long-term care provision and promote significant levels of innovation in our communities. It might demand that we deinstitutionalise care professionals to create an entirely new cadre of autonomous independent practitioners. This could pave the way for tens of thousands of practitioners who have left the health service because they were unhappy and unfulfilled. We might need to test new ways of regulating, find different ways of assuring quality and safety. We might need to re-define how we see “our patients.” We might need to collaborate with the ‘unusual suspects’ in terms of innovation (social, technological, and economic). We will need to change our longstanding socio-cultural attitudes and develop the appetite for risk.
Who are the people behind The Tribe and how did you come up with this idea?
I formed this group in January 2020. I’d spent three years agonising over what I could do to catalyse change given my experiences on return to clinical practice. At the time I was incredibly daunted by how apparently unshakeable the system appeared. It seemed such an insurmountable and monumental task, so emotionally and psychologically I suffered for a long time. Then a dear friend suggested that I find a small group of people who felt as I did and would be willing to put their heads above the parapet with me.
So, I set about thinking about the people I knew who fitted the criteria. I then thought about the character traits I wished them to possess. I saw the group as being small and cosy, making it easy for us to gel and work. I identified seven people on the basis of their outspokenness, professional independence, unquestionable integrity, courage, knowledge, openness to new ideas, and vision.
The people in my Tribe are Dr. Mark Redmond, Shirley Ayres, Lorraine Morgan, Dr. Mervyn Eastman, James Mickelwright, Sara McKee and Professor Heather Davison. The word ‘Tribe’ came up in conversation with one of them. It resonated with me because it dispelled the feelings of solitude and fear I felt, into feelings of solidarity and motivation. They are my strength, my challenge, and my inspiration.
What goals do you plan to achieve?
My vision is that growing older should not cost any of us our lifestyles and what it means to be human. My goal is to ensure that our generation and those coming after us have a range of lifestyle choices and/or alternatives to institutionalisation in late adulthood, irrespective of our care needs.
My objective is to catalyse economic, social, and technological innovation to ensure that we have the state-of-the-art with regard to products, services, and systems so that we can live and die as we choose. This is what Jackie’s Revolution is all about.
How is the plan progressing?
We’ve been working tirelessly behind the scenes for over a year now. We’re all very excited about partnering and being a part of the general “ageing” movement. We, however, have chosen to direct our efforts to addressing the hardest and most neglected part of the picture. We’ve gotten to the stage where we are just about ready to launch and have a more visible media presence by May 2021. Our online resources are being finalised and we’ve been in conversation with policymakers regarding what innovation and systems re-engineering might look like.
In a recent interview with the economist Gustavo Sugahara, he pointed out that we have to outgrow the idea that the State is the key driver of innovation. Do you agree?
Personally, I couldn’t agree more with the viewpoint. When I look at the ideas that have changed the way we live, work, and play, they all appear to be underpinned by people’s experiences of life, a desire to make it better, and unfettered imagination. I think the key drivers of innovation should be people and change. I think the State should pay far more heed to the fact that people from all aspects of life have the ability to generate life-changing ideas. You don’t have to be a business owner to be innovative. You don’t need to be a technological company or a sector expert to be innovative. The people who are imaginative enough to have ideas to address the issues that hamper them are also to be found in the man on the street, in neighbourhoods, and communities.
I have found the State tends to dangle investment as the carrot to innovation. I think the approach has skewed our thinking, sabotaged the purpose of innovation, and it is something of a perverse incentive. Funding does not generate great disruptive, game-changing ideas. It seems to be prolific at generating more applications for funding. In too many instances winning the grant is often seen as the prize, as opposed to creating a product, service, or system that adds value to people’s lives.
What might be exciting and high risk is to target the public for their ideas and garage inventions they’ve created to solve their problem, because a problem for one may well be the same for thousands. If we focus on the mental capital and creativity across the length and breadth of our society, who knows what we might uncover? Innovation and game-changing ideas are not monopolised by businesses, research institutes, or large corporations. Innovation is latent in our citizenry.
Do you agree that the other side of the coin when it comes to care is our being open to the idea of being taken care of?
I think we’ve got to accept that regionally, nationally, and locally we do not have the resources (people, money, time) to the notion of “being taken care of.” The research data, reducing budgets, and reports all point this out, yet we refuse to think about it in any other terms.
The concept of “care” and how we perceive it culturally is very difficult to change, mostly because its still the notion which underpins the education of all healthcare professions. We are shaped to believe that we exist to take care of people, and that people want to be taken care of. I think the societal attitude to wanting to “be taken care of” is changing. The paternalism and infantilisation are consistently being rejected by our generation because we are not acculturated to it, have different health beliefs, and do not want be objects of care.
We might wish to consider that we actually might want to take care of ourselves. Most other sectors have found ways of enabling people to manage their own affairs as far as possible, for example in financial services, retail, travel, entertainment, and even house-buying. In the care sector we appear loathe to do that; it undermines the whole basis of our professions. Yet there are examples of self-management to be found in pockets of the care sector, for example, Patient Controlled Analgesia (PCA), and intermittent self-catheterisation.
If you had a magic wand, what would a contemporary idea of a caring facility look like?
If we conceive of care as the provision of something that is necessary for health, welfare, or protection of someone, then I would believe in contemporary terms they should not be premised on institutional principles. They should frame the individual or group as discerning customer(s). They should be sized to deliver an individualised experience that takes cognisance of equality, diversity, and inclusion. They should be creative enough to make the experience memorable and enjoyable. I detest sitting in a waiting room and having a healthcare professional emerge from behind a door to shout my name whilst looking around the entire room to spot the person responding to their shout. As does everyone else in the waiting room. I always feel “Right, so everybody in this room knows my name and I have no idea of theirs!”
If care relates to protective custody or guardianship of someone provided by the State or private business, we are in challenging waters here. What I can say is that any contemporary version of this will require a total disruption to the current models, partnerships, relationships, and objectives. That goes for care models targeting adults and children. Sadly, these models are premised on institutional principles, often remove people rights and privileges, and are fertile ground for abuses of people and power. If I had a magic wand, I would make these facilities disappear as things like asylums, homes for unwed mothers, and orphanages have done.
If we think of care as the human emotion of concern, attention or consideration, we again have to stop deluding ourselves that everyone who enters the workforce possesses compassion and empathy in buckets. Any shift should focus on leadership across the board. If I had a magic wand, I would manifest leaders who are compassionate, empathetic, passionate, imaginative, visionary, selfless, and loving. I find it incredibly ironic and am always shocked by the lack of feeling and concern by managers and providers in the care sector. I believe if we articulate long-term care in contemporary living, human rights in the 21st century, and transformational leadership we will realise that the notion of a “caring facility” are completely at odds with all of these concepts.
