Improving mechanisms of involvement of people with lived experience in decision-making processes

The involvement of people with lived experience (PWLE) in the mental health field has been and still is very debated from several points of view¹. One of the most discussed areas refers to their involvement in decision-making processes². These processes occur at the individual level, where PWLE need to be involved in decisions concerning treatment and care; at the social level, where PWLE have to be integrated as full contributors to the society enjoying all the relevant rights³; and at the policy level, where PWLE need to be involved in the development and adoption of policies and regulations that have an impact on their life.

At the individual level, several national legislations and ethical codes describe the situations and the procedures that need to be followed when the decision to proceed with compulsory treatment is taken by a professional, by an expert commission, or by a court of law⁴. These situations and procedures should be and often are very clearly settled.

However, in order to give his/her consent to psychiatric treatment, a PWLE first of all needs to understand his/her diagnosis and how the treatment will help decrease his/her symptoms and increase functionality. Moreover, a PWLE needs to know what are the potential side effects of the proposed medication(s), what are the alternative and/or complementary available treatments, such as psychotherapy, and what is the expected length of the treatment.

This is essential information whose provision requires time and availability from the relevant professional. While the time that a professional allocates to an individual patient largely depends upon organization of care, the availability mainly reflects the professional's personal skills, among which empathy is the crucial one. Empathy is a learnable skill, which one may develop by practicing repeatedly. It helps professionals become better doctors and better persons⁵. When empathy is present, there is a good chance that a therapeutic relationship will be established⁶ and the patient will adhere to treatment.

What happens if things are not going this way and a PWLE feels that the doctor is not there with and for him/her? The answer is quite simple: the PWLE will, most likely, not consent to treatment. In this situation everybody loses: the PWLE does not get the opportunity to improve his/her medical situation and increase his/her quality of life, and the doctor loses the opportunity to exercise his/her professional role, both situations leading to frustration.

Universities need to devote more attention and allocate more time to developing empathy and communication skills within doctors’ training curricula. The use of patient decision aids may be useful, but human interaction based on empathy appears to be preferable and more efficient. Artificial intelligence is a great discovery and may be of help, but has limitations regarding empathy. Human interaction should be valued and remains an essential asset of the mankind.

At the social level, PWLE should be encouraged to exercise their rights in order to get education, job and participation in the society according to their desires and capabilities. Important steps have been made in the last fifty years, especially in the Western part of Europe, with regards to inclusive education, job integration and social representation. On the contrary, in the Eastern part of Europe, there is a low number of PWLE who come out and speak about their experiences and the need for enjoying all their rights. Stigmatization is still present and powerful⁷.

Attitudes of people have started to change, but the reliance on a system mostly based on institutions and lacking community facilities does not offer people the possibility to understand that PWLE can manage their illness within their own environment. The COVID-19 pandemic favored the change of attitudes, due to a reduction in hospital admissions. Many PWLE have had the opportunity to realize that they are able to recover in their environment, and many service providers have seen that most PWLE can be treated in the community, provided that some support from mental health services and the social network is available.

The user organizations aiming to protect the rights and interests of the PWLE have started to be more active in the last two decades. They are enabling PWLE, rather than feeling helpless and powerless in the face of the care system and of policy and decision-making processes, to feel that they are part of them and have the power to change them. There is a need for getting stronger support for such organizations, as they have an essential role in ensuring that the human rights of PWLE are respected, and their voice is heard in situations requiring attention. They can and should be the gatekeepers against initiatives that do not take into account the PWLE rights and opinions.

At the policy level, there are still many aspects that could be improved in order to overcome the tokenistic involvement of PWLE⁸. For example, PWLE are often not really involved in the elaboration of legislation or policy documents, but rather just asked to endorse or approve proposals that have been already elaborated. Of course, participation in the elaboration process requires knowledge and training. Efforts in this respect should be made on both sides: on the one hand, training should be provided by governments and professionals; on the other, PWLE who want to be involved should request training and take advantage of it. Regular feedback and consultation with PWLE should be part of policy development, to ensure that the proposed solutions are practical and relevant, so that the “co-creation” concept becomes indeed a reality.

The same mechanism applies to the research area, even if this requires a wealth of knowledge that not many PWLE have⁹. Researchers should get more in contact with PWLE and listen what their needs are, so that the outcome of their research work is more likely to decrease the treatment gap by improving current interventions, reducing their adverse effects, and developing new treatments which support a better quality of life. It is still very rare that experts who do research aimed to develop new interventions meet with people who could have a benefit out of their work. Only by direct experience will experts realize how beneficial PWLE's input may be.

In conclusion, implementing the PWLE motto “Nothing about us without us” requires a significant effort that needs to be done by all those involved in providing care and elaborating policies: professionals working in psychiatric care, medical professionals generally, policy and decision makers, communities, non-governmental organizations, and people with lived experience of a mental health problem.