Bhavani Esapathi FRSA argues that as we emerge from the first wave of the Covid-19 crisis, we need to prepare and understand what long-term care looks like from both a governance perspective and a subjective patient experience. This is no ordinary task; it involves a huge displacement of resources led by a socialised care model and the reconfiguring our flawed systems of governance that currently prioritises almost everything else over the health of individuals.
As every individual who has ever had to gather support for living with a chronic disease will tell you that, even before the current pandemic, our health and social care systems were ill-equipped to provide an all encompassing model of care to our communities. Of course, there are many countries that do have excellent healthcare systems that are not accessible to all. The UK is one of 32 countries that have some form of universal healthcare system but even those in this select group are not prepared responding effectively as they could to chronic diseases management.
Irrespective of where you live, as an Indian, as a Brit, as an American and so on (some of us more so than others) there is no universal healthcare model out there that is designed to support an individual let alone groups of people through sustained medical assistance. This becomes more important than ever given the long-term impacts that Covid-19 will have on many of those who contract it.
Wait, don’t we have universal healthcare? What is the NHS then? There is a lot of confusion between free healthcare and universal healthcare. The term ‘socialised healthcare’ is often used within US politics to describe a system that is government funded and subsidised through taxation to provide for health care of its citizens. The NHS is known as universal healthcare where at the point of access; healthcare is ‘free’ however it is paid for through taxation, national insurance and the heavily debated Immigration Health Surcharge.
The NHS created after the second world war, directly challenged the illusion of health set against the backdrop of rich versus poor such as the poor deserving of illnesses. Unlike now, the NHS was meant to treat everyone in need rather than their ability to pay or legal status and that included immigrants and visitors in need of treatment. However, the Health and Social Care Act of 2012 changed all that; partly as a result of the progressive rise in long-term conditions, the existing medical model of the NHS was unable to respond to the demographics of our times. So, while we do have ‘universal’ healthcare, it is not designed to adequately support those with chronic conditions and neither is it accessible to all those in need even though it may appear on the outset that it does. We will be taking a closer look at what it means to support long-term chronic care alongside analysing numerous communities intentionally & systematically excluded from accessing NHS care.
This is one of the hardest messages to communicate to the general public when it comes to healthcare; the idea that someone needs consistent care to continue living as ‘normal’ remains an oxymoron to most people. The assumption is that if you need care 24/7, there must be something so terribly wrong that means you cannot ever hope to get back to your normal life. A binary/medical model of care feeds this sense that says either you are sick or healthy is costing us millions. We seem unable to believe there are people out there who are young and motivated, and want to be productive members of the society while also needing constant medical attention.
Call it what you will, an integrated healthcare system, a Guided Care Model or Edward Wagner’s Chronic Care Model, what we need a system of care that fully support those in need at every point of need. And that is what we are lacking. The 1918 flu saw many governments embracing the idea of socialised healthcare; in the UK this ultimately resulted in the creation of the NHS. How are we going to improve the lives of our communities after the recent pandemic of Covid-19?
We also know that in many nations, there are deep health inequalities within our system. Whether we acknowledge it or not, the inadequate extension of care to the poorer or marginalised sections of our society is a long-term problem. We can learn a lot from how disability was viewed through history; for example, in 1400s England it was believed that people who had a disability were being punished by God. More recently, the pandemic revealed the gross discrepancy between different sections of our society and disproportionate ways it affects some of our disadvantaged communities.
In the UK, we know that BAME groups are disproportionately affected by the virusand that the number of migrant and poorer sections of the Indian population have struggled to survive lockdown, let alone the virus itself. We are also seeing inequalities in access to healthcare, with immigrants dying because they were too afraid of going to a hospital in fear of getting trapped in the system of hostile environment. This is having a wider, more subtle – and I would argue divisive and dangerous – impact.
The long-term challenge
As Covid-19 becomes a longer-term challenge, it is not just a minority of people who are clinically extremely vulnerable. A lot has already been discovered about the long-term effects of contracting Covid-19, from chronic fatigue, dizziness and confusion to heart problems, lung damage, blood clotting and other neurological symptoms. There are likely many more symptoms we have not anticipated, including persistent symptoms emerging from the Covid Symptom Study in collaboration with King’s College London researchers. None of this is shocking news to the scientific community, many of whom have been warning of post-viral infection syndromes for over a decade now, or the millions with auto-immune diseases.
We are starting to gather evidence about the long-term effects of how Covid-19 transforms our bodies. For example, prolonged or sustained ventilator use brings with it an entire host of side effects that most of the population has never experienced. Even after we have overcome the immediate impact of the pandemic, we will need to rebuild our communities, our social services and ultimately our bodies to make sure that citizens experiencing these impacts are equitably supported.
NHS England has already acknowledged this issue and has launched ‘Your Covid Recovery’ to support patients with their long-term symptoms. It is certainly a step in the right direction however, by adding an extra step of having to qualify for help risks repeating the same mistakes that led to marginalised communities not able to seek care during the pandemic.
How will this new service ensure to be more inclusive than NHS has been for some communities the past few months? Who gets to decide which patients qualify for the service? How will this service be different to the many existing chronic disease management services, which bring with them the very same shortcomings that we have learnt disproportionately affects BAME communities? These are just some of the key questions that we need to address head-on before we can move forward. In doing so we must to think about long-term needs and equitable solutions as we emerge from crisis.
It is possible that Covid-19 might change our behaviour and lead to a radical new way of managing our health and social care. For example, the 1918 flu pandemic saw the rise of socialised healthcare beginning, from Russia, to the UK and almost reaching US. Although responses fell short, the pandemic was the first time we understood that diseases do not care for borders, countries or even human beings.
And now again we need to look after our bodies en masse, and avoid overwhelming the healthcare sector in the future. Millions of procedures are currently on hold to accommodate for Covid-19 patients, and there are 15 million patients with chronic diseases who have been waiting for the pandemic to pass. We can add 700,000 new patients waiting for care every month that passes us by. To restart the NHS to pre-Covid-19 functionality would mean deprioritising critical care patients and running at 125% capacity for an entire year.
This is simply not realistic, and highlights the need for fundamental change if we are to create a more responsive and resilient system.
A new framework that supports all
All of this means fundamentally transforming our inherited historical misconceptions about who gets care and how the access to care is managed. It means identifying and structurally dismantling exclusion embedded within the NHS.
Many of the worlds’ healthcare structures still function on a medical model of care or disease-based model of medicine where the focal point is the disease notthe patient. Patient-centred care has long been advocated by medical professionals as a more effective mode of treatment, but in our technological and market-driven world, there is little space to put the patient at the centre of medicine. In our enthusiasm to measure delivery systems against an efficiency parameter, it becomes almost inevitable that we embrace a model that is not human-centric.
As hard as we may want to convince ourselves that our brains are powered like robots and that we can outperform the next person, we are immensely complex beings that do not fully understand ourselves. Producing positive results in caring for our complex systems cannot be achieved through a factory system based on efficiency but one of effectiveness. For example, chronic diseases and autoimmune diseases are complex and do not have such simple responses; these conditions cannot be cured and there is no one straightforward path.
Greater support for long-term conditions
Every patient – even in the case of similar diagnosis – experience their disease uniquely. The only way to treat such conditions is to prioritise effectiveness for the patient, not efficiency, even if it means going from seeing 30 patients in a day to 10.
The progressive rise in autoimmune diagnoses created the need to reexamine our flawed priorities in medicine. However, even now very little attention is allocated to treating the comorbidities that arise from such diagnoses. Even less is given to supporting patients through the array of persistent, debilitating symptoms one has to live with for the rest of time such as a throbbing headache that is not bad enough to make you pass out, just to drive you mad for the rest of your life.
According to the NHS there are approximately 23.5 million Americans and 4 million people in the UK for whom this is just life. In the UK there has also been an estimated rise in autoimmune diseases of 9% each year over the last three decades; this has been ignored and may, in the near future, be compounded by a rise in chronic diseases from Covid-19. Though the scale of the long-term health impact of the pandemic remains to be seen, we need to be prepared for a world population where a lot more of the population are affected by chronic conditions.
If we are to recover as a community and as a nation – simply as human beings – we need to figure out a way to respond to these challenges. This means including those coping with chronic, debilitating symptoms and improving access to services across minority groups including ethnicity, but also socio-economic, gender and even health.
Some necessary ways forward include improving equality of access to health and social care, making access to care a human right, not a legal one and ending the hostile environment. In combination, these would help to avoid migrants dying of fear from going to the hospital for Covid-19 and restore hospitals as spaces of care and wellbeing rather than intimidation and gatekeeping. If we are to effectively put citizens at the centre of our model of health and social care, three principles would support this:
- Move from disease model to patient-centric healthcare;
- Create a healthcare driven society, shaping services to act on behalf of patients’ and community care and seeking to support every member of the community to play a contributing role and to be accommodated by services; and
- Consider health as a spectrum not a hierarchy. A world where each of us is able to live in and contribute, is one which accepts people living lives a world of different from us.
Since earlier this year, there has been a presumptive news cycle out there telling us that once we either stop or get over the peak of the virus, we would be okay. Whether or not, there is a second wave of Covid-19 in the UK remains to be seen. However, the ripples left behind the first wave are still felt by many and, as we have seen, the numbers only go onto prove the unpreparedness of our existing healthcare systems.
Irrespective of our desire for change, the pandemic has forced us to confront our inherent biases and how they reflect within our systems of care. We can continue to endlessly patch up the remaining bits of this infrastructure that is predestined to fall apart at a future unprecedented moment in time. Or we can finally acknowledge our biases and come together to design a renewed healthcare infrastructure based on an inclusive systems of care: one that does not distinguish people by their nationality, religion, gender, economic-class or any other standards. Pandemics do not see these differences so why should the healthcare models that respond to them?
Bhavani Esapathi is an award winning maker, writer and social-tech activist working on issues surrounding immigration, healthcare and representation of marginalised communities. Her initiative The Invisible Labs has grown into a global community for those living with chronic diseases. She is currently looking to speak with those who have lived experiences of dealing with immigration and healthcare for her latest project called The Nowhere Project. Drop her a note @bhaesa.