Contribution to the European Health Management Association conference 2021
Thank you for inviting me to speak today and be part of this panel. I am part of a group experts on long-term care that have been keeping track of the impact of the pandemic on people who use and provide long-term care, all over the world. We have been documenting and sharing this through the LTCcovid.org initiative.
It would be difficult to overstate the impact that the pandemic has had on people who rely on care and support from others, those who use what we call “long-term care” or “social care”, and on those who work, paid and unpaid, to provide care.
If we look back to the beginning of the pandemic, it became clear, early on, that very few countries had pandemic plans that included measures to minimize the risks to people who rely on care from others due to health conditions like dementia and other causes of disability.
In fact, in many countries, the pandemic plans identified nursing homes as a convenient place to discharge people who were still infectious with COVID-19, with a surprising lack of understanding of how difficult it is to stop the spread of infections within a nursing home, and of the fact that most people living in care homes are very old, frail and have multiple co-morbidities that put them at increased risk of dying if infected from COVID-19.
In March 2020 the official COVID death counts in most countries did not include the vast numbers of people who were dying in care homes. At that point, tests in most European countries were scarce and only used for people who were in hospitals. There were numerous examples of people living in nursing homes being denied hospitalisations based on their place of residence, not their individual health status and potential to benefit from treatment. Too many people who died with COVID in care homes could not be given a good death.
Care homes in most European countries, at that point, were struggling to access testing, Personal Protection Equipment, were given inappropriate and rapidly changing guidance, were losing their already scarce health-trained staff to the health sector. In the first wave in Europe, half of all COVID deaths were happening in care homes.
Things got a bit better, by September 2020 European care homes had better guidance, much better access to regular testing and PPE, many were also able to access emergency funds. Surveillance systems to monitor infections and deaths in care homes were being developed and data was reported regularly in many countries and by the European Centre for Disease Prevention and Control.
We also saw great innovations to respond to the crisis, including the use of telemedicine to facilitate access to clinical support in care homes. During the second waves in many countries the share of all deaths who were care home residents became lower, between 30 and 40%. Our initial analysis, that comes with a lot of caveats, suggests that in Europe thousands of deaths of care home residents may have been avoided as a result of these improvements in the second wave.
But the impact has been enormous, by the time of first vaccinations of care home residents in Europe, around January 2021, in some European countries 1 in 20 care home residents had died from COVID (or with COVID).
The vaccines have finally broken the stubborn link between infections in the community and deaths in care homes. I would like to highlight what an incredible achievement this has been. However, many people living in care homes still face huge restrictions in their freedoms, and many people working in the sector are still struggling with burnout and trauma. We still have very little information on how the families who rely on care in the community coped and how much they were impacted. They were even less visible than those in care homes, even more difficult to count, particularly those who mostly rely on family care.
Currently we see that long-term care providers all over the world are struggling to have the staff they need to function. Many of their staff are suffering from burnout and trauma, many are finding that the health system offers better pay and better opportunities for career progression, as well as better recognition. And there are shortages of workers in many other sectors that pay better and offer less stressful jobs.
So what can we learn from all this?
First of all, having care systems fit for an ageing population is not a problem for the future, it is an urgent problem now. In many countries, people with long-term care health conditions such as dementia are having to bear enormous financial costs for care that is increasingly precarious and sometimes even unsafe. They are outside the health system and often do not qualify for social support. They have to navigate a fragmented, uncoordinated complex system to meet their basic needs.
Fully including people with long-term care needs in universal health coverage would not cost much more than a few more percentage points of Gross Domestic Product, it would not bankrupt any country, it is a political choice that can be made, and a few countries in Europe have made it already. It seems that other countries are trapped in a cycle where low funding leads to low expectations and low political attention.
A strong, well-funded and well-staffed long-term care system, well-coordinated with primary care, acute care, public health and social protection, is an essential part of what is needed to make sure that we can all aspire to live well and age well, contribute to society and ensure that no one is left behind, even in a pandemic.
Thank you very much.