Users and survivors of psychiatry: Consultation

Consultation of users/survivors
A Sanchit Program of CAMH, Pune
USER WORKSHOP III

The third used consultation was held in February to consolidate some of the ideas that had come up in the past meetings as well as to make an action plan regarding the activities that had been planned.

This consultation took place at a site, which has been proposed as a drop-in center for the user group. A few people from Bapu had visited that place before and thought it to be quite appropriate for the group. Thus, the meeting was planned there so that the rest of the user group could also have a look at the place and move ahead in the process. This was another half day meeting. This time, unfortunately there were fewer participants, as a lot of the participants couldn’t be present during the workshop.

The consultation began with a discussion on half way homes and drop-in centers. Everyone was of the belief that halfway homes are very regimented but drop-in centers are not. One can do her/his own thing. The place that has been visualized is one where users can stay for a few days. They might want to be away from their homes for a while but have no other place to go to for shelter. We want to create such spaces where users can come and find respite from their daily lives. The group felt that family members should not be allowed. There are users who don’t want to live with their families because the family space is over controlling. There is a concept of runaway homes where users can come and stay for a while to get away from their families. We want to build a place, which is away from the families and in that sense a secret place, which is also a shelter.

The center should provide a free environment. The center should not impose any expectations or force anyone to achieve some level of functioning in a limited time period. The environment should be such that you feel like opening up and sharing. One of the group members who is willing to take the initiative to run this center said that if someone comes here and says that he wants to sleep for 6 hours here, he would let her/him.

The group would create a space for those who want to do something for themselves and the center would be open for them. A question raised was that if someone comes, would we be able to give the support required? The group felt that we could create the space and also provide the necessary support. The group can find ways to go about that. A platform is needed and that should be provided in this space.
One important aspect is to not keep any time constraints or pressure on the user regarding the change that is expected from her/him. Not to have any controls regarding the change that the drop-in center would facilitate.

This group will just be a support group. A lot of the activities that have been planned for the group are similar to what happens in group therapies. But when you realize and understand that the formation of a group is a process and what it means to each member of the group, then the process is more effective.

There was an issue raised regarding keeping it a secret place. It might not be feasible to do that especially when you need to give an address. What is the group going to do then? Also anyone can find the place once the address is given. Such a place is required but it might not be possible to keep it a secret place.

There was also a discussion on whether the drop-in centre should be open to carers. Some members of the group felt that sometimes parents might also be suffering and they could also access this space and come here and talk. But then some were of the opinion that there are places like SAA, which are open for care givers. This space should be exclusively made available for users. But some of the group members also felt that spaces for carers are also not many and are not available for everyone in all areas. So wherever we have mental health facilities it should be open for both. The main idea is to make a space where people can express themselves. It would be like an extension of the archives activities, which provides a space for emotional sharing as well as sharing of experiences within the mental health system.

The group discussed the locality as it was a little far from the main city and it might not be accessible for all. But then some members of the group said that the connectivity by public transport was available. Also, since it is an industrial area, facilities like food availability in the vicinity of the house is not difficult. Food can be also be gotten easily as the market is close by. Also, the place would be refurbished if we do plan to use it. So a kitchen facility would be made available.

Bhargavi talked about the relationship between users and Bapu Trust. She said that there is a need to establish a contract and spell out the relationship between users and Bapu Trust, which would spell out what the role of the organization would be in that individual’s life. This discussion was carried out in the light of the recent happenings with respect some interactions that of some users as well as their carers have had with Bapu Trust.

The group felt that a register, which establishes the person’s consent of wanting to stay there, is a necessity. This would be a necessity if carers say that the group forced her/him to stay at the center when s/he didn’t want to.

The group felt that maybe it was more feasible for the group to begin in a small way and let it grow accordingly. We could start as just a day care center and then think of expanding and making it into a residential facility. We can start only with a small group. Also, financially it would be more viable to start in a small way.

The group also felt that financial support in the form of fixed deposits could be created to help the sustainability of the space. One important logistical question raised was that would anyone who accesses this facility have to pay for it. Bhargavi conveyed that they wouldn’t especially if they’re accessing this space to be away from the families and in that case it might be difficult for them to pay.

Another issue raised was regarding the funding for the group and how are we going to gather the funds for it. A budget would be required for this. We might have to think of donations or might have to do some fund-raising.

The group felt that especially in the beginning we could adopt the strategy of word of mouth publicity for the center instead of doing mass publicity for the center. The publicity would be mainly through our personal contacts. Later we can think of expanding and going to other organizations like SAA where more people can join the group.

One of the issues discussed regarding the space was that it would require cleaning up and the members of the group would take initiative in this. They would clean and develop the place so that it is conducive to all the activities that are planned at the center. Once the basic infrastructure is in place, and then the group can work at developing it further as per the needs of the group.

Basic necessities like mattresses, water, basic cooking facilities, etc, would be arranged. Often people want a space they can access for a few days and not on a long-term basis. Sometimes you might not even know how long you want the place for. Everybody had the unanimous opinion that whoever stays here stays only with consent otherwise it doesn’t work.

The group felt that we could start the residential facility much later. It could start as just a drop-in center. There are a lot of issues that need to be discussed and understood before starting a residential facility. There could be a lot of problems. The group felt that we could see how the drop-in center progresses and then see what the need for the residential facility is and how we can go about it. Another aspect that the group discussed was security. A security system would have to be in place. We could also think of having pets as security measures. Along with security for persons accessing the place; there should be security for the assets of the group as well.

One suggestion regarding caretakers for the center was to ask retired persons or those who want to do voluntary work to get involved in this work.

A lot of times people can’t express themselves but the initiative has to be from within the self. Recovery is not from others but it happens from within the self. It happens through very small steps and this space should give an opportunity to express. We should just provide an empty wall and then it’s the individual’s decision of what to paint on it. Create a background to take initiative and then let her/him be. This was the background against which various activities that could be done at the center were discussed.

Pottery workshops for users at the center
Library and reading room
Television
Indoor games – cards, carom,
Music
Yoga workshop
A first aid box is essential.
Have performances by everyone based on what each one’s abilities are
Movies
Get together every year
Notice boards
Time for stories or anything which facilitate thinking.
Generate habit of expression for every person and find means where each individual is comfortable in sharing. Have some space, which facilitates such expression.

Everyone was of the opinion that the group itself should decide the rules. One way of learning more about such groups and the functioning would be to read more regarding other similar models. The group also felt that certain non-negotiable rules and guidelines should be made for anyone who wants to stay here. Some of them that were discussed during the meeting were:

No-smoking zones
No alcohol or drugs on the premises.
Another question raised was that there would be both men and women accessing this space. What is our take on men and women staying together? The group felt that during the day its ok but during the night there would be separate rooms. Also not create segregations between men and women. Create core groups for men and women.
This center would give space to everyone to say which services they would want to access or not access.
Each person’s rights would be guarded here and legal protections would be offered.
A lawyer and a doctor would be made available on call. We can also think of having a panel of lawyers and doctors who are sensitive to user issues and understand them. They would be persons whose basic humanity we know and trust.
Someone should be present at all times to take care of the users as well as the place.

One of the dilemmas that the group faced was that when a severely troubled person comes to the center then what should our response be? This was a real question that the group faces. Are we going to offer treatment at the center, which is mainstream? The group felt that the space would be looked at as peer support and not into offering therapeutics. One of the group members also shared that it might not be possible to lay down all the probabilities. He shared an instance where he was staying at a residential facility. There was a person there who didn’t like being touched and someone who didn’t know that touched him. He got a little violent and broke some things. The group learns from such experiences. But we need to let the group take time to learn from such experiences. The group should be permitted some study time.

Another important step in this process is to establish rapport with persons living around the place. It is important for the neighborhood to know what is happening in this place. This is important especially in the context of an emergency. The response from others should be positive. There shouldn’t be any negative response from people living around. That can happen only if we talk to the people living around the area.

The other suggestion that came in was to establish rapport with the police. But the problem with this is that the police have been completely co-opted in the mainstream. It might be difficult to find law and order systems, which would look at this objectively/sympathetically.

If we do have a residential center, then a 24-hour round is a must. If there were some emergency, then we would have to access emergency care. We need to create policies about these situations and also need to study and form an understanding. Also think about a hospital, which we would access when there is an emergency. Its not that an emergency would not happen in other places but we need to prepare ourselves about this.

The group felt that protective and preventive measures would need to be taken at the center. There was a dilemma for the group that what does one do when someone who is suicidal and wants to access this space. Some of the group members were of the opinion that we should not take in persons who are suicidal or at least take adequate precautions like accessing only the ground floor. Also, suicide risk assessment could be done for all persons who want to access this space. But one group member shared that even if someone is suicidal, the environment would be such that the person would not want to commit suicide. Other places create such coercive environments that the person might be forced to commit suicide. So this might not be of too much concern for us though we would need to take precautions.

The group felt that to deal with the issue of who should be let in and whether carers should be allowed to access this place, there should be security for all the time. Families that are willing to be a part of such a space should be involved. Another very crucial way in which families can be part of the process is to have trainings for families or caregivers. A group member who is a carer expressed this point.

One concern that was expressed was that we should concentrate on working with parents of young people suffering from illness, not who have been dealing with it for long time. It is possible that there is more scope to work with this group because persons who have been taking medication for a long-term like 20-25 years, there is a lot of de-skilling that takes place, and they might even have a vegetable like existence. It was observed that children might be forced to be on medication for so many years since even though parents might let go for a while but they always come back to medication making the symptoms worse. There was also the anxiety that groups generally tend to become dominated by parents who are complaining about children. Also, parents are not objective about their children’s progress and attribute everything about their personalities to the illness. There are cultural differences in how parents deal with their children who have psychosocial disabilities.

However, it was also said that it would be difficult to pick and choose carers with whom we want to work. It was suggested that we should speak to the users first about whether they want the trainings to happen with their parents in the first place.

But at the same time the home is the root of the problem. There is need for intervention at that level so it should be our decision of wanting to work with carers. In fact it was shared that we should put together a parents group rather than a users group because they have more problem letting go at any level.

There were equal number of opinions, which supported the idea of working with carers yet there was a resistance to the idea as well. It was also agreed that mental health issues are not so innocent, the politics within the family is like international politics. We should be aware of this when working with families. The group also felt that even if we do decide to work with carers the training should be at a different venue and not at the drop-in centre.

Regarding the perspective of the trainings, it was said that the training should not aim at changing the carers because it is not possible change in anyone. But the focus should be on counseling on attitudes. New perspectives on mental health and mental disabilities should be shared with them because most of the time there is ignorance about the issue itself. However we have to very patient with the process. One participant said that it will take at least five user generations to bring about the change that we are thinking of right now.

The discussion moved on to talking about the various topics of trainings for carers.

It was felt that with a concrete idea like the drop-in centre, we could consolidate a group, which works around that. However it was felt that though there was a need within the user group for the space of a drop-in centre, and there would be volunteers who would work to maintain the place, Bapu would still have to be the anchor, even in terms of taking care of the finances, etc. but though the drop-in centre is a concrete idea Bapu does not have any programme like that. There need for an organizational role, which Bapu must fulfill, if it is dependent only on one or two persons the idea will not progress. Hence while all these matters resolve we should be prepared to wait for a year for the drop-in centre to become completely functional.

It was reiterated that the drop-in centre will be created out of a small initiative and the work would actually be of developing a user community, which will be peer support for people who have undergone psychiatric treatment.