The healing touch

In Pakistan, employers hire people will mental ilness for ‘Allah wastay’, as an act to earn sawab.

Nestled at the end of a quiet lane off Karachi’s Gizri Boulevard is the Recovery House, a rehabilitation centre for people with psychological illnesses. With a tasteful, bricked exterior and a spacious sculpted lawn, it looks just like the other buildings in this residential neighbourhood.

There are no signboards to mark it as being any different, and inside, the atmosphere is like that of any other home. And that’s just how Shaheen Ahmed, founder and president of the Caravan of Life Pakistan Trust, wants it. Pioneers in psychological rehabilitation, Shaheen and her  co-workers are out to change the way mental health issues are treated in Pakistan. I met Ms Shaheen and the Recovery House’s consultant psychiatrist Dr Uzma Ambareen to learn exactly what was different about their approach.

What made you get into the mental health field?

SA: Growing up in Pakistan in the sixties, I had siblings who suffered from severe mental illnesses, and at that time we didn’t know if it was an illness or simply a behaviour pattern.  We only learned what was wrong when we took my sister to the UK, where she was finally diagnosed. By this time, nearly a decade had passed, and I felt that if we had learned earlier, then perhaps we could have done something about it in time. When we returned to Pakistan in 1967, I started to explore the facilities here. We travelled across Pakistan, visiting facilities and meeting mental health professionals. Nothing came out of it. The only solutions they offered were medication and Electroconvulsive Therapy (ECT), which is a horrific procedure. At this point I had moved to the US, and when I used to visit Pakistan, I approached these professionals to say: “What can I do for you in terms of helping arrange training and knowledge exchange from the US? How can we make this work?” Unfortunately, we failed at every attempt. It was very discouraging and heartbreaking, but it seemed everyone in Pakistan thought the services they were offering were sufficient. That’s when it really came into perspective for me that the lives of mentally ill people are viewed as being of lesser value than healthy people. The impression was that ‘this is all the care these people deserve,’ and that was tragic.

So how did you go from that realisation to setting up this facility?

SA: I joined mental health boards in the US, volunteered in community centres, attended conferences to see how their system worked. Then I started to see which of these practices could be applied in Pakistan and made contacts with mental health professionals in the US, trying to convince them to help train Pakistani mental health professionals. The medical model of treatment existed in Pakistan already, but the next step in treatment in the US was psychiatric rehabilitation, so that was the knowledge I wanted to bring back. We’ve been actively working in Pakistan for 8-10 years, but I think this is still just the beginning. Our goal here is to teach the tools needed for psychiatric rehabilitation (PR).

While they may have the best practices in place in the US, there are also barriers to treatment that don’t exist here. I openly told medical professionals in the US that we could take their practices and do a better job of rehab here in Pakistan. You could say that I was just trying to pique their interest, but I actually believe this. We have a very strong social and family support system here that they lack. The US legal system and the culture of individuality can actually hamper treatment. For example, an adult can simply refuse treatment, saying s/he doesn’t need it. Ironically, refusing to acknowledge the problem is also a symptom of the illness. Also, in the US I’ve found that employers are unwilling to hire people with mental illness, because they are afraid of legal liability. Here, we’ve found that many employers, when approached, will do it ‘Allah wastay’, as an act to earn sawab. That’s important, because there’s no point bringing a patient down the road to recovery if they can’t later be gainfully employed. That’s a very important part of leading a whole, normal life.

Tell me about psychiatric rehabilitation, how does this differ from more traditional forms of treatment?

Dr Uzma:  The difference is that the usual methods focus on symptom reduction and simply bringing the illness under control, but not on taking the patient forward to having as normal a life as possible. That includes developing their social skills, and reintegrating them into family and community life. This is where psychiatric rehabilitation comes in. It’s the next step after the medication ends. Unfortunately, that usually doesn’t happen here, or if it does, then it’s in a very disjointed way.

SA: We are giving birth to the concept of PR in Pakistan, by training and teaching people. For example, we made a five year commitment to Karwan-e-Hayat to train their people in PR while paying the fees ourselves. We have online classes and held by experts from the US who also visit a few times a year. Thus far, 22 people have been certified in the field and others have done non-certificate courses. It’s a slow process, but eventually we hope to move from training to a consultative role.

Most mental health patients complain that the only solution doctors offer is medication. I’ve rarely heard anyone focus on rehabilitation. Why is that?

Dr Uzma: It’s because of lack of time and expertise. PR requires a trained team. We have psychiatrists and psychologists in Pakistan, but we don’t have psychiatric nurses or social workers, occupational therapists or case managers. These jobs require specialised training, which simply isn’t available — those who go abroad for training don’t usually return. We provide that training, but unfortunately I don’t think that most professionals in Pakistan even know that yet, or see the need for it.

Medicine is not necessarily the first step in a lot of cases. Most of the time people will delay seeking treatment and had they not done that they could have been treated with therapy. In cases of bipolar disorder, for example, since it’s an actual illness, some medication is inevitable. But with other syndromes, like depression, counseling and lifestyle management can solve the issue. Even Obsessive compulsive disorder (OCD) is now considered to be a chemical disorder. A certain part of the brain is overactive in OCD and when we medicate the activity level decreases, showing a clear response.

What role does this facility, the Recovery House, play in all this? What happens here?

SA: This is a direct service facility. It’s a 10-bed facility, with a day treatment programme as well. That’s a comprehensive, integrated programme with one on one counselling sessions, yoga, art therapy, computer classes, games and skill building. All of these are proven, evidence-based practices. At the moment, we have 12 day clients and four residential clients who have been successfully discharged. One patient came to us with acute mental illness, and went all the way from stable to rehabilitated. We even helped him get a job by contacting an employer whom we briefed on his condition. He still comes in once a week for counseling and, if there is an episode, our case manager goes and speaks to the employer to smooth things over. But our end goal is to have him stand on his own feet without our active help.

What’s the biggest misconception re: mental health in Pakistan and the biggest barriers to treatment?

Dr Uzma: That it’s all in the mind, all in the patient’s control, that they are just doing ‘drama’. I can tell you that even in my profession, there are people who believe this, so what can you expect from the non-medical public? I have patients come to me saying their doctors told them they were fine and had no need for medication. Very few GPs have an awareness; the rest are dismissive.

I’ve been practicing 14 years, and yes there is a lot of stigma but that doesn’t mean families throw out or disown the patient. Whether they will actually take the patient for treatment is something else. They will go to mullahs, pirs etc first. Then sometimes they will hide the treatment. They don’t usually exile them to mental wards. That only happens when there is no hope for treatment or money, or if there is no one who can take responsibility.

Shaheen: The biggest problem is also getting the client to admit they need help. Admitting that you have an illness is the first step on the road to recovery. There are people who will never gain that insight, but that doesn’t mean they can’t be treated. A misconception is that people with mental illness cannot live life, and that’s not true. But at the same time, it’s not like a fever that will pass with the right medication.  It’s more like diabetes: an illness or a condition that will never fully go away. As with diabetes, you will have to observe certain protocols throughout your life, but you don’t stop living. So patients have to be taught about their illness, the way it works, its symptoms and how to live with it. We tell them: “Don’t put your life on hold. You still need to live life, wake up in the morning and brush your teeth.” Will it work for everyone? No. Will it work for a great many people? Yes. Should the effort be made? Absolutely. The tragedy is how easily people give up. If they have a family member diagnosed with terminal cancer, they will seek a second opinion and then a third. They will go abroad and try everything they can. Hope never dies in those cases. But in the case of mentally ill people, many times that hope never even starts.

Published in The Express Tribune, Sunday Magazine, March 4^th, 2012.