I Am Not Dead, But I Am Not Living: Barriers to Fistula Prevention and Treatment in Kenya

This 84-page report is based on field research conducted by Human Rights Watch in November and December 2009 in Kenyan hospitals in Kisumu, Nairobi, Kisii, and Machakos, as well as in Dadaab in March 2010. The report discusses five areas that require increased attention in order to improve maternal health care and reduce obstetric fistulas: access to family planning information and services; the provision of school-based sexuality education; access to emergency obstetric care including referral and transport systems; overcoming economic barriers to maternal health care services and fistula treatment; and health system accountability.

The researchers interviewed 55 women and girls, 53 of whom had fistula, as well as nine obstetric fistula surgeons, one anaesthetist, three hospital administrators, and nine nurses working in hospital gynaecology and labour wards, five of whom worked in fistula wards. In addition, four secondary and four primary school teachers working on sexuality education in schools were interviewed, as well as government officials, NGOs, professional associations for doctors and nurses, international donors, United Nations representatives, and an elected councillor.

The study found that information on reproductive health, family planning and potential complications, as well as access to services which help ensure a healthy pregnancy and delivery, and for treating obstetric complications such as fistula is lacking. Also, despite some government efforts to introduce sexuality education in upper primary and secondary schools, Kenya has not made it part of the official syllabus and as a result there is no time allocated within school hours to teach it.

The reports states that upwards of three-quarters of the women and girls interviewed described economic constraints as a barrier to accessing maternal health services and fistula repair surgery. Almost all women and girls interviewed said how difficult it was to raise the money needed for surgery. Although the government does offer free repair surgeries during donor-funded fistula repair "camps", they do not cover all associated costs. The government also has a policy of waiving fees for indigent patients, but this does not always work for several reasons: lack of awareness of the policy among patients and some health providers, some facilities' reluctance to publicise the waivers and deliberatly withholding information when requested by patients, and vague implementation guidelines. Moreover, health facilities, especially in rural areas, are perpetually understaffed.

Most of the women Human Rights Watch interviewed did not know how, or to whom, they should complain to or challenge on any of the above barriers. Nor did they have faith that complaints would result in improved treatment. They also reported fear of retaliation by health staff if they complained.

The report includes a number of recommendations for improving access to services and information. This includes developing and implementing a national fistula strategy in accordance with World Health Organisation guidelines. Awareness and education campaigns should also be conducted to inform the public about the causes of fistula, contributing factors and risks, and the availability of treatment. Information about fistula and availability of treatment services should be incorporated into child-mother health and nutrition campaigns.

Information on fistula should also be integrated into the existing Community Strategy (a Ministry of Health initiated approach to improve service delivery at the lowest levels of the health care system that serve mainly rural and poor communities) by strengthening messages on pregnancy and childbirth. Fistula information should also be integrated into the training of community health extension workers and community health workers to educate communities about fistula, and identify and refer girls and women with fistula for treatment.

The report also recommends integrating fistula information, including on facilities where treatment is available, into in-service training of health providers, and into antenatal and postnatal care services. NGOs working on maternal health should also be encouraged to incorporate fistula awareness into their programmes.

Public awareness campaigns should also be conducted to educate patients about their rights; this includes translating into local languages and widely disseminating the Service Charter for Health Service Delivery, the Citizen's Service Charters, and the Patients' Rights Charter.

In terms of education, the report recommends making comprehensive sexuality education part of the school syllabus so that teachers can allocate time to teach it. Training for doctors and nurses on fistula identification is also needed.

The report also includes a number of recommendations around improving financial accessibility of fistula surgery, budgeting for maternal health care, improving access to emergency obstetric care, strengthening the health system, data collection and monitoring, and improving patients rights and complaints mechanisms.