Brigid Serengo

I am Bridgid Serengo, I am a nurse by profession. I have been in palliative care for quite some time, but before that I had been a nurse practitioner. I am a nurse midwife, I’ve trained as a public health nurse and also as a nurse educator and administrator. For many years I was a teacher at the Kenya Medical Training College, training nurses and midwives. I also worked at the Ministry of Health and at the Nursing Council Office.

Nursing Council is a statutory body that is responsible for education, training and practice in this country. I worked for that organisation many years back and while I was there, one of my responsibilities was to do examinations, both theory and practice. When I was going out in the community and institutions to examine the nurses, I realised that nursing care services were really deteriorating because of lack of resources. A good example is making a patient’s bed. There is a certain way of making that bed to keep the patient comfortable. The patient has to sleep between two clean sheets, have a nice pillow and pillowcase. I found linen was lacking and when it came to doing practical assessments, the student nurse would really go out of their way to find linen so that she makes the bed for the assessment. At the end of the assessment, things go back to normal. The patient lies on a bare mackintosh, insufficient linen, drugs are insufficient, patients are many, lying on the floor. So I asked myself, what am I examining really? I really felt that as a training officer I was not meeting my own obligations and I was not getting satisfaction from my job. My theory was not matching the practice. I felt like I was cheating the students and the patients.

I started looking for something that would be more fulfilling. I took a course at the Amani Institute, ‘Care of the Dying’ and it was such an eye opener. They explained how we can care for these patients and their families and it truly touched me because I was aware that such patients are neglected in the wards, no one wants to touch them because they feel there is nothing more that can be done. After that course it was very coincidental that I found a post advertised in the newspaper for a project manager to establish a centre for care of the dying. When I read that advert, it looked as if it was made for me. I applied and got the job to establish palliative care services in the country. That was in 1989.

When I came to the hospice I was the first professional, they took me for further training in Zimbabwe in the care of the very sick and dying patients. Zimbabwe had an outpatient hospice and the intention was to create something similar for Kenya. The palliative care facility was officially established in February 1990 to provide services as outpatient, home care and training so that we could share our expertise with other health care providers.

I’ve also continued with my studies in palliative care, for example I got a degree in the care of this group of patients and I am also in the last leg of the MA programme with Oxford Brookes University. Some people ask me why I do this work and why I stayed so long. To be honest, I have no regrets. I’ve stayed because of the difference I see my work makes in the lives of these very sick people. They come to us, sick, miserable, some of them have spent all they have trying to get a cure which has not been forthcoming. Through the care we provide, we make a big difference. We control their pain, we minimise if not take away completely the distressing symptoms they might have. You really find their lives have been turned around.

When you see someone is miserable, they have been abandoned, sometimes by the family and you give encouragement. You tell them you cannot give up on them, you are still alive, we’ll try our best so you continue living with dignity and self respect as a human being. We may not take away the cancer, the AID status or whatever chronic illness they might have, but we will walk the journey with you for as long as you live.

The challenges are that majority of our people are very poor. They come to us and cannot afford even the cost of the subsidized care that we offer. We try to fundraise through various means, writing proposals so we can get sufficient resources and God has really been generous.

For all the years we have been here, we have met our obligations. There is no patient that comes here and is turned away, especially in regard to medicines. We cannot afford chemotherapy or radiotherapy, we don’t provide anti-retrovirals but whatever other medicines that one needs to be comfortable, that is our pledge. Whether or not they pay, it is up to us to provide that medicine.

Medical care in Kenya is very expensive, not only for us as a hospice but the entire community. Being sick is a very costly business.

When you palliate, you are providing support and care in a situation where a patient has an incurable disease. You cannot tell a heart patient that is incurable that that is the end of their life. You might not be able to reverse the damage done to the heart but this person still needs a lot of care and support so they can live with dignity and respect despite their condition.

People don't ask patients if they are in pain. It’s as simple as: Tell me about your pain. What makes it worse, what makes it better? Is it there all the time? Does it come and go? What do you do? Which medicine works? Let the person talk about their pain and believe them.

In the community and in the medical field, there is this fear of pain medication. It’s because of this concern we have that people will get addicted-there is nothing like being addicted when you are living in chronic pain. It is the misuse that is bad, but there is no medicine that is bad. You do not take the world of a drug addict to be the same as the world of a patient. If the patient needs pain medication, give it and give it regularly because we know the cancer is not going to go away. If the patient tells you when they take the morphine and the pain goes and you know this medicine is needed every six hours, then allow the patient to take it so. Why would anyone want a patient to stay 10 hours and then you give them just a small amount? Let the patient forget the pain so they can go on with living instead of focusing on pain. Let him focus on how the children will go to school or what they will eat for supper.