People and their care. A change that can wait no longer.

On 1 April 2020, a diverse group of professionals, associations of elderly people and people with functional diversity, users and family members related to long-term care and experts from different fields, took a firm stance through the Declaration "Faced with the COVID-19 crisis: the opportunity for a better world". A public manifesto in favour of a necessary change in the long-term care model in Spain that was widely disseminated and gathered more than a thousand signatures.

At that time, we could not have imagined the consequences of this new viral threat for the most vulnerable people, especially those living in residential homes. Just one fact: Spain is at the top of the European ranking for deaths during the pandemic and even higher in the percentage of deaths in old people's homes.

In this paper, we called for an urgent review of our long-term care model in order to provide diverse, comprehensive and ecosystemic responses adapted to people's needs and preferences.  Our intention was not only to avoid situations similar to those we have experienced in the future, but also to generate reflection on the direction that should guide this transformation, placing people at the centre of care at all times, protecting their rights and supporting lives worth living.

In the last two years, a great deal of reflection and documented proposals have been generated from all areas concerned by this complex issue: elderly people and affected relatives, professionals from various disciplines, associations and institutions that have taken a stand in defence of the rights of people, victims of unjustifiable and excessive suffering. 

Residential homes have been in the spotlight because, together with the high number of deaths and the suffering experienced, the historical rejection of these resources by a large part of the public has once again come to the surface. This does not mean failing to recognise the immeasurable effort and dedication of the thousands of professionals and families who have put their health and their lives at risk to guarantee dignified care for the people they accompany.

In this context of crisis, the action of international organisations such as the WHO and the EU has not been long in coming. In the latter case, the aspiration to promote this transformation of long-term care has been accompanied by clear and explicit recommendations from the EU body, as well as significant funding allocations (Next Generation) aimed at making possible a change of model that calls for a shift in two directions.

On the one hand, a decisive development of home-based services, coordinated at the community level, integrating flexible and diverse support - in addition to the classic social and health services - in order to guarantee what people want, which is nothing more than to be able to remain in our environment and socially connected. 
On the other hand, to face a process of deinstitutionalisation, which is required by art. 19 of the Convention on the Rights of Persons with Disabilities (UN, 2007). A proposal that aims to transform the current residential places into domestic, homely environments, modulated in small groups of people in a situation of serious dependency and, of course, progressively providing more individual rooms, an essential element to guarantee the privacy of those who live there. 
The Secretary of State for Social Rights has worked with a clear commitment along these lines, following European recommendations and making available the desired economic funds to help tackle this complex, long and uncertain path, but clearly aimed at improving people's well-being.

Seeking to reach a national agreement on minimum criteria for the accreditation and quality of care centres and services for dependent adult care has been a brave and necessary approach. The process followed in recent months, which has been highly complex due to the diversity of views and interests, has involved the participation of different agents and spheres and has been characterised by listening. 

• The current draft agreement, with its lights and shadows, represents a qualitative leap forward compared to the model that still prevails in the sector. However, it seems that so far the essential consensus has not been achieved that would allow us to move forward from different realities towards the same purpose. 
• This current deadlock worries us enormously and, once again, from our professional and civic commitment, we wish to share our alarm. Because not reaching an agreement would mean giving up an opportunity, perhaps the only one, that the pandemic, by making visible the shortcomings already known to many, has made possible.  

This is why, through this letter, we would like to call for reflection, commitment to people and a clear vision. We need to face a serious, honest process of transformation, without interference or political interests unrelated to this issue. There are those who consider the proposals to be insufficient, but we must bear in mind that we are starting from a very backward starting point, from a highly unsatisfactory and inadequate model and from enormous difficulties in moving forward. In any case, what is unacceptable is to admit, as has been heard in recent days from some voices, that the current model does not really need to change. Have we already forgotten the deaths and the shortcomings that have become visible? Are we obviating the existing scientific evidence on the limitations of the macro-centres to offer good care? Are we prepared to continue ignoring the necessary progress in professional skills and in their corresponding remuneration and improvement of living and working conditions? And above all, where is the dignity, well-being, health and autonomy of citizens living in care homes?

There is no room for incongruence between declaratory speeches about the need to transform the current model of care and subsequent decisions guided by other interests. We are facing a change that obviously requires sufficient funding, but without forgetting that this must necessarily be linked to the control of the quality provided, the guarantee of the rights of people in need of care, promoting professional development, decent work and allowing the real participation of families in the centres.

We demand, therefore, that policy makers promote and lead this necessary cultural change, reaching the necessary consensus to develop a long-term care system comparable to that of our European counterparts.

It is time for real commitment, knowledge-based decisions, a clear vision and to truly put people at the centre of political priorities. Because people deserve it. Because care must be understood as a social and ethical issue. And therefore of the utmost political interest and responsibility.

Signatories:

• Mayte Sancho Castiello. Gerontological psychologist.
• Teresa Martínez Rodríguez. PhD in Health Sciences, Gerontological Psychologist. Department of Social Rights and Welfare of the Principality of Asturias.
• Pura Díaz-Vega. Gerontological psychologist.
•  Dolors Comas d'Argemir. Anthropologist. Emeritus Professor of the URV.
•  Adelina Comas Herrera. Economist. London School of economics
•  Gerardo Amunarriz Pérez. Dr. in Economics.  General Manager of Matía Fundazioa.
•  Fernando Fantova Azcoaga. Dr in Sociology.  Social consultant
•  Pilar Regato Pajares. Primary health care doctor. Responsible for the SEMFYC group for the elderly.
•  María Izal Fernández de Troconiz. PhD in Psychology. Professor UAM.
• Ignacio Montorio Cerrato. Dr in Psychology. Professor. UAM
• Joseba Zalakain Hernández . Journalist. Director of SIIS. 
• Victoria Zunzunegui Pastor. PhD in Epidemiology. Honorary Professor at the University of Montreal.

Original source: Desde mi ventana / Acpgerontología