Jackie’s “Why?”

He reigns supreme on my Facebook, LinkedIn, YouTube, and TED feeds. Don’t get me wrong, I love listening to the man. He’s got appeal and I’m always moved by his passion. Dammit, the guy has emotional intelligence in spades. I think by now, fan or not, most of you would have seen, heard, or quoted Simon Sinek on his “Know Your Why”. So, what’s with Simon? I’ll get to it in a second.

I founded Jackie’s Revolution in September 2020 with the invaluable help of seven friends. JR, as we affectionately call it, is a campaign to disrupt the existing long-term care model of institutionalisation. The goal is to demonstrate that community-centric, affordable, sustainable lifestyle with care services eco-systems as an alternative to institutional care are entirely possible. Fundamentally, allowing people to live out their lives and die in their own homes, or wherever they want to. We are about re-inventing the system of long-term care for our generation and those coming after us.

Recently someone posed the Simon question to me, “Why Jackie’s Revolution?”. Why have you spent the last 15 years so relentlessly trying to change the way we look after people in advanced stages of their lives? Why are you risking your nursing registration to call out this “social problem” as you call it? Why do you merely eke out a living to be on this “mission”, when you could be doing far more lucrative work with your level of expertise? Why are you putting yourself at point blank range of those who have vested interests in maintaining the status quo?

Because I cannot breathe. Because my 38 years of clinical nursing practice and management experience have led me to one indefatigable philosophy; it is that growing older should not cost anyone what it means to be human. Because someone must lift the cloak of concealment. Because it is not what people or families deserve. Because most people do not want this way of life in the future for themselves.

I’m leading Jackie’s Revolution because I am suffering inside. In quiet moments, on long drives, sitting in airports, or in GP waiting rooms, or while cooking, I am consumed with a profound sense of guilt, grief, and injustice that I must quell. I cannot unsee the man who covered all the mirrors in his room with plain A4 sheets of paper because he could not bear to see what he “had come to”. I cannot unsee the men and women entering the system with a single suitcase to live in essentially four walls until their lives come to an end.

I still see men and women awakened at 4:45am every morning to be washed so they can spend long days with nothing to do, nothing to live for, and no one to love. I cannot silence the voice of the gentleman begging me not to “allow them” to put him into a care home because it would condemn him to a life of celibacy. I still see men and women duped into entering institutions under the guise of family going on holiday, never to return. I hear their shrieks of sorrow and despair. I see them dwindle into objects of care. I see people willing themselves to die.

I am burdened by a care system and a care model we did not create; one which we have very little, if any, control over. A care model which inherently devalues too many of us as employees and customers; one in which we experience shared suffering, distress, and sense of powerlessness. I know I am not alone in my pain. I know we inherited this system, but I also know we can change it.

Working in the sector does not mean we should turn a blind eye to its failings. It does not mean it should stay the same. It doesn’t mean the actions of others to engender change amounts to a personal attack on the people who struggle day and night to honour our citizens. It’s a change we should all want to be part of if we search our hearts and if we let our consciences be our guide.

The writing is on the wall. The long-standing cycle of recruitment, retention, and training is not working. Social care is facing the worst workforce disaster in living memory as tens of thousands leave. A study in the The Lancet revealed that COVID-19 had a disproportionate impact on the mortality of care home residents in England compared to older residents of private homes. The institutional care model did not stand up to the pandemic and highlighted a few of the longstanding problems in the sector, but we all know the entrenched problems existed decades before. A study in the British Medical Journal (BMJ) carried out by Collateral Global stated that “Neglect, thirst, and hunger were – and possibly still are- the biggest killers” of older adults in institutional care.

The system appears insurmountable, unassailable, and sadly, essential to those with the capacity and capability to address it. Creating a paradigm shift feels almost impossible. It is none of these things.

For 23 years I have been witness to the hopelessness, helplessness, and emotional trauma of too many daughters, sons, husbands, wives, and significant others who have no other choice, no resources, no access, no power, and no recourse but to surrender their loved one to the institutional care system. The system often presents as gentle, caring and safe, but in reality is unrelenting in its pursuit of profit and toxic cultures are pervasive. I know that despite our best intentions we work in a model of care that denies too many people hope, aspirations, dreams, opportunity, identities, sexuality, dignity, choice, and a voice. This applies to both staff and ‘residents’ alike.

Creating a system change in long-term care is an age-related challenge of monumental proportions, yet organisations with the remit to invest, drive innovation, and take risks, consistently choose to ignore it. The mantra “remain independent in their own homes for longer” rings out everywhere in the innovation domain. Is it a stretch too far to aim for “independent in their own homes regardless of need”? So even at the highest level there is a lack of recognition, insight, ambition, and apathy.

What do I think are the biggest challenges to change? Top of the list is civic malaise. Institutionalisation in our society, indeed in many modern societies, is ‘normal’. It is in fact a social problem. There is an anti-ageism movement out there that is gaining momentum, however the focus is generally on narratives, imagery, employment opportunities, sexuality and sexual freedoms, and social value. We are yet to realise institutionalisation of older adults is the epitome of ageism.

Second are the vast sums of money being invested in superficial repetitive ‘innovative’ projects which funders know will not bring about system changes. That my friends is the subject of another blog.

Third is denial. We are the next generation of older adults. Palms are rubbing in anticipation of vast profits beyond the £20 billion per annum at which the sector is currently valued. They are building 160 and 180 bed homes for us despite the inexorable problems existing now. We are headed toward a future in which we too will become commodities yet, we are letting an opportunity to invent a different future for ourselves slip through our fingers because we delude ourselves that we will never be old.

Someone must say we are living in the 21st century and an 18th century model no longer serves us. Someone must say people need choice in how and where they live out their lives. Someone must say the State needs to stop outsourcing its responsibility to its citizens in later life. Someone must say as a society, industry, and leaders, we need to get off the hamster wheel and stop playing Whac- a- Mole. I am compelled to say them in the full knowledge I will be deemed a heretic. I will be castigated for “devaluing carers” by those who cannot see the bigger picture or are unfamiliar with systems-thinking. I face the risk of being vilified on social media platforms by my colleagues with institutionalised mindsets, and by senior executives who have vested interests or do not understand the changing dynamics of ageing.

The truth of it is I am still working out the “How?”, but I am resolute in my “Why?”. I do not have the answers, but I have purpose. There is no ‘answer’. There are better ways, more humane ways, more sustainable ways, more empowering ways, more human-rights driven ways, more affordable ways, more consumer-centric ways. I can only use my skills, abilities, talents, and knowledge in seeking out these ways. However, without those you possess it will be an inordinately harder and longer journey. I make infinitesimal steps forward every day with the unstinting support of many friends and colleagues who give their time and expertise freely toward realising my vision. Right now, it is more than enough.

If you would like to hear more about Jackie’s Revolution, or find out what you can do to help, or if you would like to work with us, please do contact myself at [email protected] or Lorraine Morgan at [email protected].

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