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.

从几个角度来看，有生活经验的人（PWLE）参与心理健康领域一直存在很大争议¹ 。讨论最多的领域之一是他们对决策过程的参与² 。这些过程发生在个人层面，PWLE 需要参与有关治疗和护理的决策；在社会层面，PWLE 必须成为社会的全面贡献者，享有所有相关权利³ ；在政策层面，PWLE 需要参与制定和采用对其生活有影响的政策和法规。

在个人层面，一些国家立法和道德准则描述了由专业人士、专家委员会或法院做出强制治疗决定时需要遵循的情况和程序⁴ 。这些情况和程序应该而且经常是非常明确地解决的。

然而，为了同意精神科治疗，PWLE 首先需要了解他/她的诊断以及治疗将如何帮助减轻他/她的症状并增强功能。此外，PWLE 需要知道所建议的药物的潜在副作用是什么，替代和/或补充可用的治疗方法是什么，例如心理治疗，以及治疗的预期持续时间是多长。

这是重要信息，其提供需要相关专业人员的时间和可用性。虽然专业人员分配给个别患者的时间很大程度上取决于护理组织，但可用性主要反映了专业人员的个人技能，其中同理心是至关重要的一项。同理心是一种可以学习的技能，可以通过反复练习来发展。它帮助专业人士成为更好的医生和更好的人⁵ 。当存在同理心时，很有可能建立治疗关系⁶并且患者会坚持治疗。

如果事情进展不顺利并且 PWLE 感觉医生不在他/她身边并为他/她服务，会发生什么？答案很简单：PWLE 很可能不会同意治疗。在这种情况下，每个人都会遭受损失：PWLE 没有机会改善他/她的医疗状况并提高他/她的生活质量，医生也失去了发挥其专业作用的机会，这两种情况都会导致沮丧。

大学需要在医生培训课程中投入更多注意力并分配更多时间来培养同理心和沟通技巧。使用患者决策辅助工具可能有用，但基于同理心的人际互动似乎更可取且更有效。人工智能是一个伟大的发现，可能会有所帮助，但在同理心方面存在局限性。人与人之间的互动应该受到重视，并且仍然是人类的重要资产。

在社会层面，应鼓励PWLE行使其权利，以便根据自己的愿望和能力获得教育、工作和参与社会。过去五十年来，特别是在西欧，在包容性教育、就业融合和社会代表性方面取得了重要进展。相反，在东欧，很少有 PWLE 站出来谈论他们的经历以及享受所有权利的必要性。污名化仍然存在且严重⁷ 。

人们的态度已经开始改变，但对主要基于机构且缺乏社区设施的系统的依赖并不能让人们理解 PWLE 可以在自己的环境中管理他们的疾病。由于住院人数减少，COVID-19 大流行有利于人们态度的改变。许多 PWLE 有机会认识到他们能够在自己的环境中康复，许多服务提供者也发现，只要有心理健康服务和社交网络的一些支持，大多数 PWLE 都可以在社区接受治疗。

近二十年来，旨在保护PWLE权益的用户组织开始更加活跃。他们使 PWLE 在面对护理系统以及政策和决策过程时不会感到无助和无力，而是感到自己是其中的一部分，并且有能力改变它们。需要为这些组织提供更有力的支持，因为它们在确保 PWLE 的人权受到尊重方面发挥着至关重要的作用，并且在需要关注的情况下能够听到他们的声音。他们可以而且应该成为反对不考虑 PWLE 权利和意见的举措的看门人。

在政策层面，仍有许多方面可以改进，以克服 PWLE 的象征性参与⁸ 。例如，PWLE 通常并不真正参与立法或政策文件的制定，而只是要求认可或批准已经制定的提案。当然，参与制定过程需要知识和培训。这方面应从两方面做出努力：一方面，政府和专业人员应提供培训；另一方面，政府和专业人员应提供培训。另一方面，想要参与其中的 PWLE 应该要求培训并利用它。与 PWLE 的定期反馈和咨询应成为政策制定的一部分，以确保提出的解决方案切实可行且相关，从而使“共同创造”的概念真正成为现实。

同样的机制也适用于研究领域，即使这需要丰富的知识，但并不是很多 PWLE 都具备⁹ 。研究人员应该更多地与 PWLE 接触并倾听他们的需求，以便他们的研究工作结果更有可能通过改进当前的干预措施、减少其不良反应并开发支持更高质量的新治疗方法来缩小治疗差距。的生活。从事旨在开发新干预措施的研究的专家与能够从其工作中受益的人会面的情况仍然非常罕见。只有通过直接经验，专家才能认识到 PWLE 的输入可能有多么有益。

总之，实施 PWLE 座右铭“没有我们，就没有我们的事”需要所有参与提供护理和制定政策的人员付出巨大努力：精神科护理专业人员、一般医疗专业人员、政策和决策者、社区、非政府组织和有心理健康问题经历的人。