The TREE Programme:
Recovery, Empowerment and Experiential Knowledge of Persons with Severe Mental Illness

Lecture given by Suzanne Engelen, written by Wilma Boevink at conference held at the ISPS in Madrid, 2006

In the Netherlands, long term mental health care users in cooperation with Trimbos-institute, developed the TREE-Programme.

TREE stands for working Towards Recovery, Empowerment and Experiential knowledge by and with people with psychiatric disabilities This programme combines the strategies and methods of user initiatives which are thought to account for their success.

These are among others: self-determination, self-help and mutual support, the creation of new roles based on positive labelling of psychiatric experiences, giving meaning to experiences of distress oneself instead of accepting ‘the doctors’ view’.

The TREE-programme aims at enabling people with psychiatric disabilities to manage their own lives and to counter their marginalization in society.
To this end, the programme enables its participants to exchange experiences and offer mutual support. It also encourages them to develop knowledge and to use such knowledge by making it available to others. Last but not least, the programme promotes user led change within mental health care organisations in the direction of recovery-based services.

People with psychiatric disabilities can take part as a member of a self-help group, as a student of one of the courses, a volunteer or as a paid experiential expert. The programme offers the opportunity to:

communicate with others about experiences that are overwhelming;

create some distance from these experiences and reflect upon them (develop your own narrative);

make a we-story out of several I-stories (experiential story);

make the experiential narrative useful for knowledge dissemination to fellow users of psychiatry, mental health care professionals and others;

participate as a (paid) trainer or lecturer in training programmes (thus creating jobs).

Developing narratives and experiential knowledge:
The underlying principle is that an important element in recovering from long-term mental illness is to develop and pass on narratives. To make and to tell a narrative enables us to overcome whatever it is we are overwhelmed with, for instance a psychosis, because it enables us to recover our sense of self .
Through the story telling we grow from being a disorder to becoming a person trying to deal with life. And it enables us to learn to formulate what it is we need to recover.
To develop your own narrative and compare it with the narratives of other users of psychiatry is the beginning of building experiential knowledge. A collective story is made out of several individual narratives. To this end we look for underlying principles, for what we have in common and for what distinguishes us from one another.
And finally the experiential story is transformed and used for knowledge dissemination in training programmes and courses.

In the TREE programme participants develop, transform and disseminate experiential knowledge. They perform these tasks themselves, as volunteers or in paid jobs in the mental health care organisations where the programme is implemented. If necessary they hire others, mental health care professionals perhaps, as prothesis to enable them to perform their tasks.

The programme consists of:

self-help groups and working groups;

one day training, courses and group discussions for fellow users of psychiatry;

training programmes for professionals;

consultancy and coaching in organisations that wish to implement the programme.

The programme is for and with persons with longterm mental illnesses and psychiatric disabilities. They often struggle with multiple and complex problems in several domains of life and most of them have impressive patient careers in psychiatry.

As a consequence they face dependency, lack of self-confidence and self-esteem, loss of control over their lives, loss of meaningful identity and greater social vulnerability.
There are no other criteria to enter the programme than to have (the courage to have) some interest in what the programme is about. The programme is open to all users of long-term mental health care. There are no criteria, no demands, no examination and one can use it as often and as long as one likes.

Some examples:
I want to give you some examples of how the TREE programme works. I will give you some information about how we work from individual experiences to collective knowledge to disseminating this knowledge.

A self-help group or recovery group consists of a maximum of eight members next to two ‘experiential experts’ who help the group get started. All members wrestle with severe mental illness. They meet every two weeks. Their interaction is subject to certain rules, varying from whether smoking is permitted to how to take responsibility for oneself in the group. One specific rule is that every member must treat the others’ personal stories with respect and with confidentiality.

The recovery group’s activities are firmly based on the concepts of recovery and empowerment. When discussing each other’s personal experience, the focus is therefore not on problems and illness, but on strength and possibilities. This does not mean that suffering is denied or ignored. The group seeks ways in which to increase the members’ (potential) strength and opportunities for action. The recovery group develops not as a therapy group, but as a self-help group.

The meetings last two hours and have a fixed structure. Once the agenda is set, the group discusses the minutes of the previous meeting. Then there is a section in which the participants can contribute any points they might have. After a break, the discussion moves on to focus on a theme relating to recovery. The meeting ends by making preparatory arrangements for the next session and making time for a round of final remarks before closure.
The section in which the members are asked if they have anything to contribute forms the basis for the working group’s meetings. It gives members the opportunity to tell the others about their daily lives in the previous weeks. Thus they learn to formulate in their own words and to listen to each other. The group members exchange experiences and give each other advice based on their own experiences about how to deal with obstacles in their recovery process. Thus they learn to see the positive value of their experiences, to see them as a source of knowledge.
This is further stimulated by the fact that the group members get paid for their presence. The rationale behind this is that their investments in the long run will lead to the availability of experiential expertise and thus to a powerful tool to raise the quality of care.
Everybody’s contributions, and the discussions they give rise to, are included in the minutes. Writing down the contributions is an important aspect of the working group’s meetings. Discussing the minutes at the next meeting helps people take a step back from their experiences and pave the way for placing the contributions in a wider thematic context. It allows themes to be identified on the grounds of personal everyday experiences with which several group members can identify.
Once a theme has been identified, it is brought into a next meeting as a point for discussion. Examples of themes are: sources of support, pitfalls and helpful and harmful psychiatric treatment.

In summary, the aim of the programme is that the group members become aware of themselves as individuals taking an active role, both with regard to their mental health and psychiatric care. Next to that the participants learn to view their experiences as a psychiatric patient as a valuable source of knowledge.

Usually it takes at least a year for participants to become aware of the fact that having a mental disorder does not mean being one.
Once they have reached this point, questions like ‘who am I?’, ‘what is it I have to deal with?’, ‘how can I help myself?’, and ‘how can others help me?’ lead to new answers. The next step is to make individual recovery stories out of these answers. To this end the participants start preparing presentations for fellow mental health care users.
The idea behind the presentations is that they tell their recovery stories, or parts of it, to show others what recovery from mental illness can mean. The fact that there is now an audience of ‘outsiders’ makes it necessary to create coherent and comprehensible stories with a beginning and an end.

The minutes from the recovery group’s meetings serve as the basis for these stories. For each member a compilation of text fragments from the minutes can be put together. This results in a list of reported statements or short narratives for each person. The participants can then work their list of excerpts up into their own stories. Next to that, they can use the discussions in the working group to integrate their own experiences with that of others. This integration of several ‘I-stories’ into one ‘we-story’ is not the same as striving for consensus. On the contrary: experiential knowledge describes possible points of view, the overlap and the differences. And finally, to be able to transform a recovery story into a lecture, participants learn in workshops about writing and giving presentations from a more technical point of view.

One-day training course on recovery:
Part of the TREE-programme is a one-day training course on recovery. The programme is very basic and meant for users of long term psychiatric care and their care providers. They can only participate if they come in pairs (user and professional). The aim is to let the participants get familiar with the meaning of the recovery concept and with applying this concept to their own life. All trainers are (paid) experiential experts and users of long term mental health care.

The day starts with an interview round to get to known each other. Participants – whether users or carers – are asked about their life, their past experiences, their dreams, their frustrations. In this first hour of the day the aim is to let everybody have the experience of saying something in the group. Next to that the trainers focus on what users and carers have in common (e.g. hobbies, age, favourite television programme) in order to make the traditional inequality between patients and professionals less tangible.
In the second hour some general information about the recovery concept is presented followed by a personal account on recovery. In the discussion afterwards the trainers implicitly give the users more opportunity to exchange their experiences than the professionals. The former usually hear for the first time in their lives about hopeful recovery experiences from fellow users and they are very eager to talk about it and bring in their own experiences. The latter are manoeuvred in a listening position. They get the chance to witness the sometimes enormous positive changes that their clients undergo when getting into contact with experiential experts and their recovery stories.
After lunch the participants play a game in subgroups which continues the acquaintance of the morning programme. This time client and professional are separated from one another. In the rest of the programme the focus is on the relationship between client and professional, the consequences of the recovery perspective for this relationship and how recovery can be supported by professional caregivers. A personal account is presented again with afterward room for questions and discussion. This time the caregivers are explicitly invited to ask their questions as well.
The final component of the programme is an exercise for the couples in which they are asked to get personal about their relationship towards each other. Both client and professional are asked to write down two experiences with their partner in their history together as caregiver and client (an action, a situation, a quality). One should be about what they appreciated and the other about what they did not appreciate (so much). They are asked to tell in the group what they have written down. For users it is difficult to come up with a negative experience, because they are not used to (have the courage to) be critical customers. For caregivers it is very difficult to come up with non-therapeutic remarks, because they are taught to create a professional distance in their contact with users. Sometimes the programme has been empowering enough for users and safe enough for professionals to end the day with communication of high quality.

Developments of the Programme in the Netherlands:
In the Netherlands the TREE-programme, or parts of it, is becoming more and more popular among people with psychiatric disabilities themselves as well as among care providers. Several mental health care organisations have started to facilitate their users to implement the programme.
A nationwide operating team of experiential experts is now hired frequently to provide for kick off meetings, support fellow users in their recovery and in making recovery narratives, coach persons with psychiatric disabilities to become experiential experts, train fellow users and professionals, give lectures, design new programme parts and guide the implementation of the programme.

Studies on the TREE Programme:
Four implementation sites, throughout the country, with models of the TREE programme are being studied on its effect. Two sites are organisations for sheltered housing. One site is an ACT network organisation and one site consists of two non-clinical, interdisciplinary teams of a large mental health care organisation. On the first two sites a quasi-experimental design is followed. In the first year of the study the TREE programme started in half the locations of the sheltered housing organisations. In the second year the other half follows. On the last two sites a randomized controlled trial design is followed. All respondents with an interest in the TREE programme are followed up to two years.

Outcome indicators are identity, confidence in mental health:, empowerment and connectedness.
A strong evidence for a positive effect of the programme will be found when:

the respondents starting in the first year show more progress than those starting in the second year;

those starting in the second year show as much progress in year two as those starting in the first year showed in year one.

The study started in 2004. Results will be available at the end of 2007 or the beginning of 2008.
Our experiences so far are:
People with Severe Mental Illness (SMI) or longterm mental health care (MHC) users:

have a DSM identity. They think of themselves as being their disorder;

lack sources of hope and what is more: in MHC they can’t find any either.

they are not supported in (starting to work on) their recovery. There is no recovery oriented care in MHC in my country.

they have forgotten about normal social roles and responsibilities.
We notice this when we start a new group and ask them to listen to each other or to call us if he/she cannot be present during a meeting etcetera.

they lack information about nonmedical concepts of psychosis: users of longterm mhc do not know about how to learn to cope with voices for instance.

they are not stimulated in building selfesteem, on the contrary: longterm mental health care is a very stigmatizing part of our health care system (e.g. no respect for 30 years experience as a patient)

When participating in the TREE programmes, they:

Develop colourful identities, e.g. from ‘schizophrenic rehabilitant’ to the leader and ‘father’ of the recovery group

they find the courage to start moving again, to act

they discover their talents

they find hope in stories of others

they develop pride

they develop as gifted & powerful storymakers and presenters.

Thank you for your attention.

Suzanne Engelen

If you would like to contact me about the TREE-Programme, please click on my name to e-mail me:
Suzanne Engelen