Introduction

Uganda is an East African country with a population of 30 million. It has a population growth of 3.5% per year and it is projected that the population will double by 2020. The people are predominately Christian, warm, joyful, polite and welcoming people. It is a resource poor country which has made much progress in recent years; education 75%, infant mortality now down to 80 per 1000 births, maternal deaths still very high 505 per 100,000, good immunization programme for childhood illness, Hiv/Aids reduction from 20% to 6.5%. Rural people lack access to health care. Almost 60% of Ugandans never see a Health worker. Less than 1% of HIV/Aids patients can access ART (anti retro viral therapy). Less than 5%of cancer patients can access chemotherapy and radiotherapy. The challenges are there but are being tackled.

Why an hospice?

In Jinja district and Busoga region as whole cancer patients are often referred to Jinja regional referral hospital for diagnostic purposes and palliative care. Management of cancer patients in Jinja hospital is through an integrated approach whereby the palliative care unit is run as an outpatient department and internal consultations for palliative care on the wards are carried out. Patients with palliative care needs are discharged through the palliative care unit to ensure follow up, etc.

Some of the challenges experienced by the Jinja hospital have been; late presentation to the palliative care unit when symptoms may be hard to manage, even for those who present early there is further delay in diagnosis due to lack of diagnostic facilities at the hospital. Biopsy specimens sent to Mulago pathology department for confirmation of diagnosis and often results return late when patients have lost hope. Loss of patients to follow up both before and after diagnosis, few palliative care specialists who are not even full time, burn-out of the few staff, lack of medicines, poor documentation of cancer patients and even funding to support follow up activities all leave palliative care management wanting in the region.

There is therefore a need to enhance the collaboration, networking and support for the management of cancers in Busoga region. This can be achieved through strengthening delivery of services for cancer and pain to chronic illnesses e.g. HIV/AIDS by establishing an independent fully operational palliative care unit (Hospice) in the region. That is why Hospice Jinja was established

Hospice Jinja

Founded by Rev Daniel Situka, Hospice Jinja has been established that over 70% of HIV/Aids and cancer patients and their careers want the patients to die at home. Therefore the appropriate model of palliative care should be a home based model. This has worked well since 1993 in Kampala, Mbarara and Hoima. This model has been in place in Jinja since its inception in August 2005. The population of Jinja is 450,000 and the service covers a 20 kilometre radius of Busoga region which has a population of 4.5 million.  The present staff consists of three nurses, one with a palliative care qualification, one social worker, and two staff in management/administration.  They are all volunteers. Our input as primary care doctors with a wide experience in palliative care is to support, encourage and empower them as the service will be nurse led.

Our Mission

We are a home base organization committed to render medical, spiritual and humanitarian services through programs that provide, offer, educate, enhance and promote palliative care in Busoga Jinja District, Uganda. Our services cater for HIV/AIDS, cancer and other terminal patients within 20 square miles in Jinja District.

The mission is to offer affordable humanitarian hospice/palliative care services to those in need of them. This is though both outreaches and day care programmes that enhance, educate and promote palliative care in general. The organization is committed to providing palliative care to all those that are terminally ill and those that are infected and are directly affected by such chronic illnesses e.g. HIV/AIDS and cancer.  Hospice Jinja is also committed to fostering end life education, information exchange and dialogue with the main objective of breaking down communication barriers. The organization is committed to enhancing and accessing such information that eases the burden of pain, dying and death.

Objectives

1. To provide a palliative and end-of-life care service to patients with life-threatening illnesses and their families in Jinja District & Busoga region.
2. To enhance palliative care education for health and allied professionals within Busoga region through sensitization workshops, seminars and collaboration.
3. To promote and engage in a cross-cultural exchange of information on end-of-life care issues.
4. To have a close collaboration with other palliative and hospice care organs in Uganda and worldwide in the effort of caring for the terminally ill persons.

Goals

• Provides a daily outpatient clinic
• Hospital visits.
• Home-care service – patients seen in their own homes.
• Offer community end of life care education and bereavement services
•   Provides spitrual support and counseling

Testimony

Let me take you to meet a lady we visited with the Jinja Hospice team. Perpetua lives in a rural setting with her family. You can see her young grandson outside the 'kitchen'. She has been ill for some time and had a miserable experience of uncontrolled pain and expensive visits to hospital with little benefit. With the support of the Hospice team; who can assess and prescribe free drugs including oral morphine; her pain is under control and she is happy to be at home.

She wanted to pray for us as she felt God had sent us to help her and give her family support.

Here she is reading some verses from her bible and giving thanks for all the help she has received. It is good to be reminded of our core values and purpose in palliative care and to consider the many many people who are not able to access the help that they need.

I hope you visit one of the other site

Palliative Care in Jinja/ Uganda

              Over half the districts in Uganda have now access to morphine. Doctors and palliative care trained nurses prescribe it. It is cheap the price of a loaf of bread can keep a patient pain free for 2 weeks. Morphine is available in powder form provided free by the government. The powder is then made up to varying liquid strengths in the regional pharmacies. All the other drugs used in a palliative care setting  such as anticonvulsants, antibiotics, diuretics etc have to be bought. Our patient profile consists of HIV/Aids and Cancer patients.  507 patients, their careers and their families have been cared for in their first year of service. The majority of the cancer and HIV/Aids patients that we see have advanced disease. Palliative radiotherapy and chemotherapy is unaffordable, unavailable or inappropriate. The accepted principles of a modern palliative care service are in place with a holistic approach to pain and other symptoms. There is also support for the families during the illness and in bereavement.

Our child patient with Burkett’s Lymphoma	Doreen, a 17 year-old with terminal cancer who received care through Hospice Jinja.

Challenges.

1. Patients and their families are poor, poorly nourished and often living in one room mud huts with no sanitation water, poorly nourished and often living in one room mud huts with no sanitation water and electricity. Lack of transport is a huge problem as is cost of blood test i.e. cost of CD4 test is 5,000 schillings ($3). Most patients cannot afford the 5,000 shillings contribution for the hospice service.
2. Rejection, stigmatization of the Aids patient is prevalent. The society is very patriarchal, gender inequality, subordination needs change where the dominant male position is one if the roots of social injustice.
3. The service main expenses are mediations, petrol for jeep and staff salaries.  A proposed budget is in place for 07. The estimated cost of the service is 4 million schillings ($2300) monthly approx. Our administration will readily supply a detailed breakdown of the monthly costs. Any money we get every cent is put to immediate use. Your continued interest and support is very much appreciated by all.

Meet our volunteer from Northern Ireland

We are Honors graduates of National University of Ireland M.B. B.Ch B.A.O.  1968. We worked in Canada during the seventies in Family Medicine. We had a large thriving practice in Kitchener Waterloo, Ontario. We returned to Ireland in 1977 where worked again in Family Medicine until  our retirement last year.
We were involved in the development of a hospice in our hometown and we have been actively involved in all facets of palliative care for the past 15 years. We have a grown up family of eight children. We live on a farm close to Shannon International Airport, Co Clare Ireland. Our hobbies are outdoor pursuits, horse racing, walking, and jogging. We are in our early sixties and have been blessed with excellent health. We are on our second visit to Jinja. The hospice office which started from a very low base, no electricity, no toilet, no staff lunches is now running smoothly. The palliative care service is very good and is providing wonderful end of life care to patients with advanced cancer and HIV/AIDS. . 
Sincerely,
Frank Hassett MB BCh BAO & Patricia Hassett MB BCh BAO

Who benefits

Hospice Jinja is committed to rendering medical, spiritual and humanitarian services through programs that enhance, educate and promote palliative care in the Busoga region. The Organization fosters end of life education, information exchange and dialogue with the main objective of braking down communication barriers, while enhancing and accessing such information that eases the burden of the effects of pain, dying and death. Our service caters to HIV/AIDS and cancer terminal patients within the 20 square miles of the Jinja District. About 205,000 people benefits from our services.

The program focuses on attitude change towards terminal illnesses and their victims and mitigates the consequential effects of such illnesses through end of life education, control of pain, and direct delivery of the palliative care services to the individuals and the community.

How can you get involved

• We need partners in care, financial staff support, and prayer partner
• We need Monthly financial support
• We need a vehicle for the staff commute
• We need two motorcycles
• We need medical supplies/equipment
• We need office equipment
• We are in need of volunteers that would commit time to come and help

From left to right:  Dr. Mioce, Chairman; Dr. Bnon, Vice Chairman; Representative from Ministry of Health; and a volunteer

Contact us at:  hospiceJinja@yahoo.co.uk

Hospice Jinja Uganda Number changes, Another code has been added to the digits of the land line by Uganda Telecoms. Now all the land line numbers have been added a digit (4) so our line is not changed except when calling add the code number.

The number is then 256 - 434 -122924

Thanks

Rev. Daniel Situka