Since October 2005, Hospice Africa Uganda (HAU) has been in partnership with USAID/Uganda to expand

access to and scope of quality palliative care to PHA and their immediate families. HAU has adopted three

approaches, namely, (i) direct service delivery and (ii) indirect expansion through training and supporting

AIDS care and support organisations, including public and private agencies to integrate pain management,

symptom control and end of life care into their services and (iii) advocacy in palliative care, to scale up

access to palliative care. Over the last two years of partnership with USAID/Uganda, HAU has grown as an

accredited leader and the only institution in Uganda with technical expertise to provide and build capacity for

pain and symptom management services. HAU has grown into a beacon service modeling affordable and

culturally acceptable palliative care and a ‘centre of education' to enable increased access to

comprehensive palliative care and education in Uganda. (HAU provides and supports palliative care

interventions in accordance with WHO definition, 2002).

The Hospice Cooperative Agreement with USAID ends in September 2008. However, although access to

ART continues to improve with increased resources, the need for palliative care services remains real.

Under the current HAU program, the symptom burden of PHAs is significant, with a high incidence of pain

and multiple symptoms experienced throughout the course of the disease, from the point of diagnosis to

end of life care and bereavement support. The HAU experience demonstrates palliative care can improve

the quality of life throughout the continuum of illness. In addition to managing the symptom burden, HAU

also undertakes preventive care focusing on condom education and distribution especially targeting

discordant couples and delivery of family planning services. Other elements of preventive care delivered by

HAU include prevention of malaria by improving access to insecticide treated bed nets, counseling for

disclosure of status, and HIV testing of family members whose status is unknown. To strengthen its quality

of care delivery, HAU participated in the development of a tool to measure the effectiveness and quality of

palliative care in Africa, the African Palliative Outcome Scale (APOS). The APOS quality of care audit

revealed that palliative care is highly effective in pain and symptom control. The HAU experience

establishes the importance of providing palliation from the point of diagnosis, and moves away from the

traditional view of palliative care as a specialist area introduced at the end of the patient's life.

Since 2005 HAU has seen over 1,950 patients with HIV/AIDS or HIV/Cancer, of whom 1000 were admitted

onto program as they required specialist palliative care for pain and symptom management or end of life

care. The care provided has been a mix of home visits, out-patient care, outreach and hospital

consultations. In an effort to ensure comprehensive care, HAU has strengthened linkages with other AIDS

care and support organizations, to provide shared and complementary care and avoid duplication of

services. For instance HAU refers PHAs to HIV support organizations for social support interventions such

as income generating activities while the same providers also refer to HAU the PHA that need pain and

symptom control. Currently 2/3rd's of HIV patients receive shared care. These initiatives need to be

sustained beyond the current HAU program.

One of the main factors inhibiting palliative care service development and expansion in Uganda is not only

the lack of trained palliative care personnel, in both basic and specialist palliative care, but also lack of

career progression for health workers considering specialization in palliative care. Since 2005, HAU training

units has successfully carried out palliative care education program. In sum 865 health and allied health

professionals and 391 community members were trained, totaling 1256. The capacity of 23 training

institutions was strengthened to teach modules on palliative care, and palliative care was also incorporated

into 5 national health professional curricula and four training institutions.

The new partner (TBD) will support the direct provision of specialist palliative care/consultations using

modern methods of pain and symptom control and end of life care to an estimated 2000 PHAs, at times and

places convenient for the PHA and their carers', in a culturally and socially sensitive way. Home based care

and community care will form the backbone of these direct care services during the critical stages of illness.

The partner (TBD) through networks and formal collaborations with other public and private service

providers such as Mulago Hospital, TASO, and Meeting Point will co-manage patients so as to maximize

synergies, reduce duplication of care, and enable PHA's to access broad spectrum of services.

The new partner (TBD), through outreaches, will also train at least 20 HIV/AIDS care and support

organizations in Uganda in ‘practical hands-on' palliative care skills. This will further enhance the capacity of

these organizations to scale up palliative care within their organizations. Children's palliative care needs,

which are very different in many ways to adults, will be addressed through the partner (TBD) offering Child

focused palliative care service program and trainings in Children's palliative care. The partner TBD will

continue to deliver preventive care which include but is not limited to: prevention for positives, delivery of the

basic care package and support disclosure and testing of family members.

Partner (TBD) will build capacity of at least 800 multi-disciplinary care providers and community workers

through training/education to incorporate pain and symptom control, spiritual care, and end of life care and

bereavement into their existing programs. The partner (TBD) will lead the process to institutionalize

Palliative Care within Ugandan health systems by advocating the establishment of departments for palliative

medicine at Makerere and Mbarara Medical Schools, and the formation of regional palliative care training

units for specialist palliative care.

The TBD will advocate the inclusion of pain management and symptom control as integral elements of

essential care in Ugandan palliative care policies. This will also necessitate the increase in the numbers of

morphine prescribers by accrediting short specialist "Morphine Prescribes' courses for Clinical Officers and

Nurses, so as to maximize the number of health personnel accredited in prescribing morphine, with the aim

of increasing the coverage of prescribers nationwide. It is expected that increased coverage will lead to

greater access to palliative care services.

The partner TBD will also advocate the iimplementation of palliative care policies at the national and local

levels, and the establishment of palliative care services at regional level. This will entail the partner (TBD)

working closely with MOH/PCAU/APCA and other palliative care providers for joint advocacy and in the

setting of standards, technical assistance and development of appropriate resources such as referral

guidance and IEC for palliative care.

Since October 2005, Hospice Africa Uganda (HAU) has been in partnership with USAID/Uganda to expand

access to and scope of quality palliative care to PHA and their immediate families. HAU has adopted three

approaches, namely, (i) direct service delivery and (ii) indirect expansion through training and supporting

AIDS care and support organisations, including public and private agencies to integrate pain management,

symptom control and end of life care into their services, and (iii) advocacy in palliative care to scale up

access to palliative care. Over the last two years of partnership with USAID/Uganda, HAU has grown as an

accredited leader and the only institution in Uganda with technical expertise to provide and build capacity for

pain and symptom management services. HAU has grown into a beacon service modeling affordable and

culturally acceptable palliative care and a ‘centre of education' to enable increased access to

comprehensive palliative care and education in Uganda.

The Hospice Cooperative Agreement ends in September 2008. However, as access to ART continues to

improve with increased resources, the need for HAU services becomes more real. Under the current HAU

program, the symptom burden of PHA on ART remains significant, with a high incidence of pain and

multiple symptoms. Some of the symptoms result from side effects of ARVs, and in many cases, they are so

distressing that they cause patients to stop their medications which jeopardizes their health. Almost half of

the PHA under HAU care requires oral morphine for severe pain. In consideration of this reality,

USAID/Uganda plans to initiate a follow on program to sustain the services initiated by HAU and to further

expand access in tandem with the growth in the number of PHA initiating ART.

The follow on program (TBD) will work with MOH and other HIV/AIDS service organizations in Uganda to

ensure that PHA receiving palliative care are assessed for ART and are appropriately supported and where

necessary referred to specialized ART institutions. A good number of PHA currently receiving ART present

with acute pain such as peripheral neuropathy that is unresponsive to weaker analgesics. The follow-on

program will be required to solicit and receive MOH accreditation to dispense oral morphine as treatment for

severe pain. Treating such symptoms has proved to restore comfort among PHA, allowed them to live more

normally and assisted with adherence to anti-retroviral therapy. The new program will be required to

strengthen volunteer networks through which it will be able to reach families in order to effectively address

issues of stigma, disclosure, and testing and support treatment adherence, not only for HIV/AIDS but also

for other critical illnesses such as TB. The program will be expected to facilitate formation of mutual support

groups such as community based day care centers for individuals receiving ART, which will enhance mutual

care, sharing of ART experiences at community level.

Currently approximately 60% of PHA served by HAU receive shared care, through sourcing various

services from multiple PEPFAR supported providers. For instance, HAU refers PHA to ART providers for

initiation of ART while the same providers also refer to HAU the PHA that need pain and symptom control

as well as psycho-social support to enhance adherence to ART and prophylactic care, such as,

cotrimoxazole and fluconazole. HAU also networks with organizations that formally provide services that are

not provided at HAU such as social support interventions (food assistance, income generating activities,

and support for orphans). These initiatives need to be sustained beyond the current HAU program.

Therefore the new partner will be required to further develop close linkages with existing health care units

and other support NGOs, in order to provide joint care, complement each others work, maximize synergies,

and reduce duplication of care, as well as enable PHA to access broad spectrum of services such as ART,

nutritional support, and OVC support.

The new partner (TBD) will support the strengthening of the direct provision of specialist palliative care

consultations using modern methods of pain and symptom control and end of life care to an estimated 2000

PHAs, at times and places convenient for the PHA and their caregivers, and in a culturally and socially

sensitive manner. Home based care and ART adherence support will form the backbone of care services

and especially for PHAs during the critical stages of illness.

Since October 2005, Hospice Africa Uganda (HAU) has been in partnership with USAID/Uganda to expand

access to and scope of quality palliative care to PHA and their immediate families. HAU has adopted three

approaches, namely, (i) direct service delivery and (ii) indirect expansion through training and supporting

AIDS care and support organisations, including public and private agencies to integrate pain management,

symptom control and end of life care into their services to scale up access to palliative care and (iii)

advocacy in palliative care. Over the last two years of partnership with USAID/Uganda, HAU has grown as

an accredited leader and the only institution in Uganda with technical expertise to provide and build capacity

for pain and symptom management services. HAU has grown into a beacon service modeling affordable

and culturally acceptable palliative care and a ‘centre of education' to enable increased access to

comprehensive palliative care education in Uganda. The Hospice Cooperative Agreement with HAU ends in

September 2008.

Between October 2005 and July 2007, HAU has seen almost 1950 patients with HIV/AIDS or HIV and

Cancer, of whom approximately 1000 were admitted onto the palliative care program. 950 were assessed,

found not to not to require specialist palliative care and referred for appropriate care to other HIV care and

support centres. Approximately one-quarter of the HAU HIV patients needed support and/or facilitation for

clinical investigations for opportunistic infections (OI) such as malaria, sexually transmitted infections,

HIV/AIDS and its related cancers. Patients were supported and facilitated with investigations in a number of

ways. Mobile needy patients were facilitated with transport and/or investigation costs to source laboratory

services at selected providers. For bed-ridden patients, clinical samples such as blood were taken by the

staff, and sent to the laboratories. For each investigation, HAU assessed the importance of the

investigations for palliative management and enhancement of quality of life. If a patient was too sick to

travel for investigations, and they really need treatment, sometimes empirical treatment (treatment of t likely

illness without investigations) was given at home by the clinical team.

In keeping with HAU's goal of not duplicating services, HAU does not have laboratories on site but used

selected local laboratory services and/or referred patients to treatment providers with laboratory facilities.

The laboratory services provided were those directly linked to services offered by HAU. Examinations for

conditions for which HAU refers patients to other HIV care providers were not covered, for instance

investigations for ART eligibility are provided free by collaborative HIV treatment centers, such as JCRC

and IDI.

In FY 2008, USAID plans to continue to build on HAU work to increase access to and utilization of PC

services by PHAs and their families, with a partner yet to be determined (TBD). The partner (TBD) will

support the direct provision of specialist palliative care consultations using modern methods of pain and

symptom control and end of life care to an estimated 2000 PHAs, of which approx a third may require

support with investigations - at times and places convenient for the PHA and their carers', in a culturally and

socially sensitive way. Home based care and community care will form the backbone of care services,

especially for PHAs during the critical stages of illness. Optimizing quality of life for PHAs will necessitate

the partner (TBD) to support or facilitate patients with investigations. To achieve this, the partner (TBD) will

ensure that a PHA referral system is in place to link between partner (TBD) and ART providers for

diagnosis, investigations and initiation of ARV therapies where appropriate

Partner (TBD) will also ensure correct diagnosis and care management by facilitating needy patients to

access relevant laboratory and diagnostic services. The services sought will be those directly linked to

services offered by partner (TBD) or needed for referrals and care, but will not cover examinations offered

by the HIV organizations to whom the patients have been referred. For example, the partner (TBD) will not

pay for CD4 count if this is provided by the ART provider.

HAU is one of the few specialist organizations within Uganda providing and supporting PC interventions (in

accordance with WHO definition, 2002) which focus on palliation- pain and symptom management,

adherence to treatments, prophylactic care and treatment of opportunistic infections, HIV prevention,

psycho-social and spiritual support, to the patient and to the family to optimize the quality of life and to

ensure peace and dignity at the end of life. Central to HAU philosophy is the delivery of services at times

and places convenient for the patient and their carers' in a culturally and socially sensitive way. Care

provided by HAU is typically intensive and is achieved through engaging in delivery of care services from

home visits, outpatient clinics, day care centers (site & community), hospital consultations, outreaches and

roadside clinics. The latter have proved to be viable strategies for accessing palliative care services to

individuals who are unable to reach static sites. Home based and community care remain the backbone of

HAU services, especially for PLHAs during the critical stages of illness.

In keeping with our goal of not duplicating services, HAU does not have laboratories on site but will use

selected and approved local laboratory services and/or refer patients to treatment providers with laboratory

facilities. The laboratory services sought are those directly linked to services offered by HAU, hence

examinations for conditions for which HAU refers patients to other providers will not be covered. Patients

will be supported and/or facilitated with investigations in a number of ways. Mobile needy patients will be

facilitated with transport and/or investigation costs to source laboratory services at selected providers

(public, private not for profit, private for profit sector). For bed-ridden patients, HAU clinical staff are trained

in rapid tests (such as malaria) and in taking clinical samples such as blood, malaria slides which will be

taken to the testing laboratories. An assessment of necessity of the investigations against the

inconvenience to the patient is always taken. Patients will also be assessed for the importance of

investigations in their palliative management and enhancement of quality of life. If a patient is too sick to

travel for investigations, and they really need treatment, sometimes empirical treatment (treatment of most

likely illness without investigations) can be given at home by the clinical team.

PLHA will be referred to ART providers for diagnosis, investigations and initiation of ARV therapies where

appropriate. Patients will be supported with access to investigations and treatment of malaria, HIV/AIDS

and related cancer diagnosis and sexually transmitted infections. A component of this activity will be to

strengthen the linkages between HAU and organizations that provide services that are not provided at HAU,

to maximize efficiency and improve access to holistic care. In FY07 HAU targets to provide care to 1,500

PLHA. HAU will provide support/facilitate investigations to an estimated 250 individuals, and train at least 12

clinical/education staff in clinical diagnosis and use of rapid test kits.

These activities will aim to address the key legislative issues of gender, and stigma and discrimination

Activity Narrative: Since October 2005, Hospice Africa Uganda (HAU) has been in partnership with USAID/Uganda to expand