Rights, Responsibilities and Resources–Peer Support in Mental Health Services

Editor’s Note: In this article, which first appeared on Mad in Italy, Susanna Brunelli reflects on the Peer Support Expert (ESP) role after attending the international congress of the WAPR (World Association for Psychosocial Rehabilitation) in Turin.

I am happy to be here, because this is exactly what I wanted to do as an ESP (Peer Support Expert): to participate in meetings of this kind.

It was a spontaneous consequence, since 2019, to have the desire to make myself available with my experiential knowledge, after having lived, for a relatively short but intense-as-hell moment of my life, as a service user. Now I can declare myself an ex-service user. My story can be found on social media, but now I would like to focus on this intervention.

I have been thinking a lot about the topic of rights, responsibilities and resources in European mental health services, particularly in Italy, with a focus on community orientation, innovative experiences and user involvement. There are certainly more opportunities than before, but, in my opinion, there are also several obstacles to overcome.

Embarking on a recovery journey is essential to putting yourself at the service of others. The first prerequisite is to feel good about yourself, activating a process of awareness that allows you to acquire and strengthen your self-esteem, break down stigma and open up to dialogue, even with a critical spirit.

It is essential to remain faithful to one’s personal history and experience, focusing on what one wants to do and how to proceed after having transformed a period of crisis into an opportunity. This implies an assumption of responsibility and respect for oneself, in order to support others in their recovery process, which differs from other roles because it is based on life experiences, one of the basic principles of ESP.

It is essential to develop a critical spirit towards what one has seen and heard in services, and towards one’s own perception experienced during the period of existential crisis. It is appropriate to take a well-defined position and make observations that must be expressed without fear, if one wishes to establish an honest dialogue, both with the operators of the services and with the users.

One’s inner state is reflected in the surrounding environment and the type of clear and decisive thinking can prevent the formation of subordination dynamics. After having matured a certain security and autonomy, the ESP can integrate and contribute effectively in any community context, thanks to the acquisition of the ability to move with dexterity and specificity, taking advantage of what has worked or has not worked, as guidelines to share.

Although the presence of the ESP, who decides to carry out his activity within the services, can make a difference, there is a considerable risk: he could often find himself under observation by the same operators of the mental health services that he has been, or still is, a user of. Therefore, it is essential that he is not involved in activities that could jeopardize his emotional stability, especially if he is not sufficiently rooted and trained. There are roles that could prove unsuitable and lead to the difficulty of dealing with them, due to stress or emotional burden.

Experts by experience should represent an added value, rather than an additional burden for service operators, if not functional to the context.

It should be recognized, however, that “everyone,” including professionals, is susceptible to emotional deficits, especially under stress and at risk of burnout. Feeling supported, valued, and not judged can transform challenges into opportunities and foster personal growth.

I wonder why many people don’t believe in the figure of the expert user; is it perhaps because this figure is associated with the idea of ​​​​a fragile person, or because there is a fear of being deprived of one’s role? Or perhaps they fear having to leave their comfort zone? What prejudices are hidden behind operators who show an apparent availability? A fundamental objective, in my opinion, in the context of involving users of mental health services, is to take care of relationships and promote the concept of autonomy and independence.

The introduction of an ESP is something that shakes up the balances and fields of action; at first it can be destabilizing, but if the formula is based on significant evidence and on the positivity of the interventions, I think everyone could lower their defenses. I think that the work of the ESP should be evaluated based on the results and verifiable experiences of people who use peer support. Perhaps this is exactly what is missing.

There is still much to do, even if there is more and more talk about this figure, who aspires to become professional. I believe that we should leave aside the ideology that has developed around this opportunity and focus first on the roots; the fruits will be seen only if the seed has been planted in fertile soil.

The greatest success we should aspire to is that people who access services no longer need care.

I like to think that the person can spread his wings and learn to fly. Out!

I don’t know what you think, but I asked myself what my intent and my mission are, so I chose to share my story and my experience, to get involved in associations and in the defense of users’ rights, and I try to give useful information, also through social media. I listen to people who turn to me and, if necessary, I accompany them in the recovery phase, without the pretense of saving anyone, since true “salvation” is a personal journey.

(In addition to making interventions of this type for those who have the courage to invite me.)

Just as I was writing this text, a 40-year-old woman wrote to me, still in distress, and has been for many years. We have a long-distance dialogue, because she lives in another city, but we have met in person; she is currently in a rehabilitation facility. I had the idea of ​​involving her and asking her what, in her opinion, an ESP should do. I report what she wrote to me without any changes:

“What should an ESP do? I think about what you are doing with me and I think this is what should be done… You are the only person who has empathy and understands. You listen and try to give hope, you try to show that there is a way out… Every time I hear from you, you give me confidence… You put yourself in my shoes because you have experienced the same thing…”

Not out of self-referentiality, but because I want to give a concrete sign (obviously I am very pleased). Another woman, 26 years old and with whom I have a constant dialogue even in person since she is from my city, writes to me:

“What should the ESP do?… Actively listen, guide step by step, be compassionate and dress in humanity, so much humanity. This is what Susanna did with me, and thanks to her my life took a turn for a real change.”

A father of a boy, a relative, and his wife, who turned to me while doing an Internet search, says: 

“Susanna was fundamental to the path of rebirth of our family. In the initial stages of our bad experience, she provided us, with competence and patience, precious information not available elsewhere. In her we found a safe and prepared guide who firmly showed us the way. Without her we don’t know how it would have ended. Thank you for everything.”

These testimonies give me hope and the strength to continue to proceed with passion and determination in what I am doing and carrying forward in these years. Those who choose to collaborate with the services should be clear about what their specificity is and inspire the people who turn to these structures to find their way again after a period of emotional difficulty.

I reflect on the risk that an ESP runs by remaining in the services for a long time. This permanence could slow down the possibility of implementing a real change and lead to remaining attached to one’s diagnosis, especially if it is still in the care of the services. This could promote a concept of ‘illness’ from which one cannot escape, risking stopping at the idea of ​​having to accept living with it forever. This could convey a sort of resignation to users in the recovery phase, but also nourishes the illusion of being able to help them. However, this situation could satisfy a personal need, creating a different form of dependence masked by the idea of ​​offering valid support. I don’t know if I managed to make myself understood; these are pitfalls that should be considered.

Personally, I find it difficult not to maintain a critical thought towards a system that has deeply affected my life. I have faced difficult moments and, although I can reinterpret those experiences, I cannot fully identify with them. This reflects my personal point of view and, for this reason, I do not aspire to work within the services.

There are aspects that I have experienced directly and that sincerely do not allow me to establish a total alliance with the world of psychiatry. In addition to my personal experience, I have learned through the stories that have been told to me of bad practices in psychiatry: stories of coercion, of blackmail related to Mandatory Health Treatments (TSO), of obligations in taking therapies and the side effects of drugs, instilling of support administrators (ADS) who do not respect the will of the person… These are strong experiences that occur within many services.

My role as ESP, therefore, leads me towards external contexts and towards self-recognition! I like to talk about “conscious recognition”: first you have to learn to recognize yourself in order to be recognized by others. It is my intention to convey to users still in the recovery phase the idea that you can freely choose your own treatment path, that first of all there are rights that must be respected, that your resources must be valued, that you can free yourself from conditioning and that it is necessary to give meaning to your discomfort, because what happens to us always has a meaning. Furthermore, I believe that life is a game worth playing, but it must always be the person directly involved who decides who to seek help from and who learns to convey what his or her real needs are.

Those who do not find a game worth playing will fall into paralysis of will, apathy, lack of desire to do anything and may remain in a depressive state. Drugs will be of little use if you are unable to find your purpose in life, because each of us has one; use your talents, because each of us has them; be grateful for life, because each of us should find reasons to be so, even in times of difficulty; do the best you can with what you have; and if you cannot change the situation, then you should “live to the best of your ability,” seeking personalized solutions.

Getting out of the fear of what can happen and also giving space to unpredictability, tolerating uncertainty, without wanting to keep everything under control: this is the greatest criticality. Everyone wants to keep everything under control: family members, operators, doctors, friends, acquaintances, society… This way, we risk chronic frustration, to accommodate the expectations of what others want, but which does not correspond to our own “feelings”, with the consequence of a long-term stay in the services.

Users, former users and peer support experts should, in my opinion, be more cohesive with each other, taking inspiration from the Recovery movement and the defense of rights, as can happen, for example, in the American context (https://www.menteinpace.it/) or in other international contexts. I have the impression that Italian ESPs try more to “behave well” to gain approval and be accepted by service operators, rather than creating a critical mass to promote change in the system, clearly distinguishing themselves for what only they can do, with their specificity, whatever activity they carry out as experts by experience and in the most appropriate context for each one.

Furthermore, it is important to raise awareness of the importance of this figure, which should work on a level of independence and openness also towards international contexts. I like to use the term “Independent Collaborators”. It is essential that the relationship with the people involved is oriented towards an evolutionary process, without hiding behind facades of false progressivism.

Furthermore, it is important to ask how professionals perceive users (or former users): what thoughts, conscious or unconscious, do they have towards them? And what emotions do peers develop towards professionals and mental health services? What can hinder the acceptance of the figure of the expert user? What can influence the relationships between users and professionals? These can include awe, aversion, anger, low trust, but also submission, devotion and excessive availability.

Being surrounded by professionals who still think about what is right or wrong regarding the idea they have of the user who was or is still followed by the services is a pitfall. It would be worth understanding what mutual expectations emerge from these relationships.

My intention is to bring out significant aspects that, in my opinion, need to be put under a magnifying glass, even through self-criticism. Consequently, even if ideas and points of view are different, it is important to create food for thought, heal conflicts and lower the threshold of resistance. I would like to promote a dialogue focused on responsibilities and opportunities, rather than blame. Only in this way will we be able to make sense of the inclusion in the community context of this precious reality, which is still struggling to emerge in Italy. This would represent a real paradigm shift and innovation.

Another fundamental aspect, in my opinion, is training and its role in prevention and equipping people. I am not simply referring to the acquisition of information that translates into a certificate of participation, but rather to a path of personal growth that aims to provide the necessary tools to manage one’s emotions, deepen self-knowledge, explore one’s mental and biological mechanisms, recognize the conditioning and limiting beliefs that can hinder one’s evolutionary process and improve interpersonal communication. Be curious and open to continuous and quality training and updating.

I hope that the definition of roles and responsibilities can improve the experiences of users and their families, also thanks to the intervention of peer support experts, helping to create the conditions so that they can freely express their potential and, if they wish, help others on their path.

All this is linked to a social condition that requires “dedicated time” and human resources.