PROJECT UPDATE
The Lighthouse- an introduction M Boxshall L) The Lighthouse The Lighthouse exists to provide a continuum of quality care and counselling, to improve the quality of life of personsinfected and affected by HIV/AIDS in Lilongwe, Malawi's capital. Our services include Home Based Care, Voluntary Counselling and Testing. specializedHIV / AIDS clinical care, and palliative care for the terminally ill. Our sen'ices began as independentinitiatives, set up on a voluntan' basis by staff at Lilongwe Central Hospital, in responseto the need they saw for HIV/AIDS care and support, both in hospital patients and in their own communities. The Lighthouse Trust was set up to support these initiatives, and to bring them together as an integrated service in a single building, the Lighthouse Centre. The Lighthouse works as a department of Lilongwe Central Hospital, and its services'aredesignedto compliment those offered by the hospital. However, the Lighthouse is responsible for its own financing, and manages its own resources. The Lighthouse is the first specialist centre in Malawi for the care and support of people living with HIV and AIDS. The aims of the Lighthouse are: o To improve the quality of life for people living with HIV/AIDS, their families. and others living with the burden of chronic illness o To reduce the fear and stigma associatedwith HIV/AIDS o To prevent new HIV infections o To equip health care providers with the skills to provide care and support to people living with HIV/AIDS and other chronic illness. 2) The Lighthouse Services 2.1 Home Based Care PLWAs in Lilongwe are likely to become chronically sick with opportunistic infections that take advantageof their weakened immune system. Chronic illness will often leave these people with few resourcesand, sometimes, little support. Hospitals in Malawi are overcrowded and understaffed, and are unable to provide quality care for AIDS patients in the later stagesof the disease,even when the patient's current infection may be readily treatable. Care of chronic illness and palliative care ale new philosophies to many health care providers in Malawi, and there is a need to equip health care workers with new skills to face these challenges. Communities must be empoweredand suppofied to provide care closer to the community, through home-based care. New models of medical support to HBC providers are neededto ensure that HBC patients receive quality medical care. The HIViAIDS epidemic has the potential to mobilise compassionate care within communities and can lead to effective community actionto addresswider issues. Lighthouse HBC works through existing community based organizations to provide medical support to chronically sick clients in their homes. At any one time we have more than 100 patients receiving weekly medical review by our nurses,and Malawi Medical Jomal
many more receiving care and suppofi from our volunteers. Our two HBC nurseshave each taken responsibility for specific parts of the city of Lilongwe, and each has a regular rota of visits to community groups. These visits provide an opportunity for informal teaching and support for the volunteers. The nursethen accompaniesindividual volunteers to see patients with specific problems, working hand in hand with the volunteer to provide on-the-job training. For patients requiring more intensive clinical input the HBC nurses and volunteers have good referral links to local health centres,to staff of the LCH Medical Depafiment and, of course, to the Lighthouse Clinic. Clinic staff are available for daily case review meetings, and weekly visits to those HBC clients most in need of more advancedmedical care. We plan to expand our HBC services in the next six months, recruiting two more nurses and recruiting and training volunteersin underservedareasof Lilongwe. We are working with the National AIDS commission to develop the optimum structures and managementsystemsfor Community Home Based Care in Malawi's urban environments, and in particular we hope to examine the role of community based care supportersto facilitate the nurseswork. 3.2 Clinical care The Lighthouse clinic was startedto provide care to clients identified through researchinto smear negative TB,90%o of whom were HIV +ve. It has grown to become the first specialist clinic for HIV / AIDS in Malawi. Lighthouse clinic is a free, open accessclinic to people living with HIV and provides medical back-up for patientsreferred by community HBC volunteers and nurses.The main servicesprovided are: o Registration and regular follow up of HIV positive clients o Diagnosis and treatment of opportunistic infections o Initiation and maintenanceof prophylactic medication o Initiation and maintenanceof antiretroviral therapy o Initiation and maintenanceof pain control medication o Referral to other services,especially at LCH, if needed The demandfor these serviceshas steadily increasedfrom 20-40 patients/monthin September2000, to 270 patientsin May 2001 and nearly 600 patients in April 20O2. The Lighthouse Centre has doubled the number of our consulting rooms to four, and also provides aday careward where patients can rest and recover, and receive intravenous fluids and medicines. We are now seeing up to 60 clients per day. Working together in the new Centre, the Clinic provides immediate back up to the HBC teams, with specialist clinicians available to support the HBC nurses. The Lighthouse has identified two main challengesthat face the clinic over the next year. The first will be to develop an effective and responsive system to ensure long term adherenceto AntiRetroviral Therapy for HIV. We are working together with the National AIDS Commission and the National TB Program to develop robust record keeping, effective patient education, and rapid follow-up of defaulters.Secondly,we are working to build understandingof palliative care in Malawi. The clinic will take the lead in procuring and establishing the use of oral morphine solution to provide effective pain control for clinic and home basedcare clients. We hope to expandthis to support more effective pain control in our partner organizations,and eventually to take on a training role in palliative care. 39
PROJECTUPDAIE .?
The Lighthouse Clinic places emphasison prevention as well as care. It encouragespatients to attend with their pafiners. is proactive in helping clients to formulate strategiesto prevent further transmissionof HIY and ensuresthat condoms are always freely available. The Clinic is complimented by counselling services, and many of our clients come to the clinic through drop-in VCI or-chooseto use our VCT servicesafter possible causesof their illness are discussedwith them in the clinical setting.
In 2002, we are focusing on building the strength of the organizalion, developing systemsand proceduresthat can provide our foundation. These will be essentialto maintain our standardsa-s we grow. We will establish ways of monitoring and evaluating our performance,and set ourselvesfirm targets.We will look for donor partners who will share our goals and work with us to secure our future. Above all, we must never forget that we are working to care for our clients, and that their needs must come first in all we do.
3.3 Counselling and HIV testing A counselling service at LCH began in 1998, initially led and funded by UNAIDS, who recruited the "Core Counselling Team" (CCT) from members of PLWA support groups. When funding for the CCT ended in 2001, and Lighthouse was able to step in to allow them to continue the valuable servicesthat had been stafied. Two full-time counsellors were employed to staff the Lighthouse counselling unit, and to manage and work together with the CCT in LCH. Two additional professional counselling staff were recruited though our pafiners in the PToTESTproject of the National TB Program, and established VCT servicesat Bottom Hospital, next to the city TB registry. The Lighthouse now takes responsibility for supervising a network of counselling services. Lighthouse VCT services are available at; o The Lighthouse Centre (four new counselling rooms, sup porting drop in clients and those referred from the Lighthouse clinic, HBC, and LCH) o Bottom Hospital (one room supporting the TB registry and wards) o Area 25 atdArea 18 health centres(open 3 days per week and 2 days per week respectively,providing more accessible VCT to these communities) o LCH wards (confidential counselling and testing for clients too ill to easily reach drop in centres) Wherever practical, Lighthouse VCT services use Rapid Test Kits for HIV testing. Currently, rapid testing is available at Lighthouse and at Bottom Hospital, but we intend to extend the service to the wards at LCH, and eventually to our outreachcentres. Kits are provided through by CDC, through MACRO. Our partners in PToTESThave piloted the use of rapid test kits by non-laboratory staff, enabling testing to be provided as an integrat part of the counselling process.We feel that this is the ideal situation from the client perspective,and intend to support and develop this procedure. We will work closely with laboratory services at Lilongwe Central Hospital to establish quality control proceduresto monitor and evaluate the reliability of results generated. 4) The Future of the Lighthouse The staff of the Lighthouse have mapped out a strategy for the next two years.We aim to build the Lighthouse into a centre of excellencefor the care of HIV / AIDS in Malawi, to be a model for other similar organizations around the country. We will develop in partnership with the Ministry of Health and Population, working together to build capacity and mobilise funds rather than competing for scareresources.We plan to act as an implementing partner for many of the National AIDS Commission's long term care and support strategies,establishing efficient and effective proceduresfor integrated AIDS care. We expect to grow rapidly over the next two years, expanding our servicesto meet increasing demand.
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40
Malawi Medical Joumal
The Lighthouse- an introduction M Boxshall L) The Lighthouse The Lighthouse exists to provide a continuum of quality care and counselling, to improve the quality of life of personsinfected and affected by HIV/AIDS in Lilongwe, Malawi's capital. Our services include Home Based Care, Voluntary Counselling and Testing. specializedHIV / AIDS clinical care, and palliative care for the terminally ill. Our sen'ices began as independentinitiatives, set up on a voluntan' basis by staff at Lilongwe Central Hospital, in responseto the need they saw for HIV/AIDS care and support, both in hospital patients and in their own communities. The Lighthouse Trust was set up to support these initiatives, and to bring them together as an integrated service in a single building, the Lighthouse Centre. The Lighthouse works as a department of Lilongwe Central Hospital, and its services'aredesignedto compliment those offered by the hospital. However, the Lighthouse is responsible for its own financing, and manages its own resources. The Lighthouse is the first specialist centre in Malawi for the care and support of people living with HIV and AIDS. The aims of the Lighthouse are: o To improve the quality of life for people living with HIV/AIDS, their families. and others living with the burden of chronic illness o To reduce the fear and stigma associatedwith HIV/AIDS o To prevent new HIV infections o To equip health care providers with the skills to provide care and support to people living with HIV/AIDS and other chronic illness. 2) The Lighthouse Services 2.1 Home Based Care PLWAs in Lilongwe are likely to become chronically sick with opportunistic infections that take advantageof their weakened immune system. Chronic illness will often leave these people with few resourcesand, sometimes, little support. Hospitals in Malawi are overcrowded and understaffed, and are unable to provide quality care for AIDS patients in the later stagesof the disease,even when the patient's current infection may be readily treatable. Care of chronic illness and palliative care ale new philosophies to many health care providers in Malawi, and there is a need to equip health care workers with new skills to face these challenges. Communities must be empoweredand suppofied to provide care closer to the community, through home-based care. New models of medical support to HBC providers are neededto ensure that HBC patients receive quality medical care. The HIViAIDS epidemic has the potential to mobilise compassionate care within communities and can lead to effective community actionto addresswider issues. Lighthouse HBC works through existing community based organizations to provide medical support to chronically sick clients in their homes. At any one time we have more than 100 patients receiving weekly medical review by our nurses,and Malawi Medical Jomal
many more receiving care and suppofi from our volunteers. Our two HBC nurseshave each taken responsibility for specific parts of the city of Lilongwe, and each has a regular rota of visits to community groups. These visits provide an opportunity for informal teaching and support for the volunteers. The nursethen accompaniesindividual volunteers to see patients with specific problems, working hand in hand with the volunteer to provide on-the-job training. For patients requiring more intensive clinical input the HBC nurses and volunteers have good referral links to local health centres,to staff of the LCH Medical Depafiment and, of course, to the Lighthouse Clinic. Clinic staff are available for daily case review meetings, and weekly visits to those HBC clients most in need of more advancedmedical care. We plan to expand our HBC services in the next six months, recruiting two more nurses and recruiting and training volunteersin underservedareasof Lilongwe. We are working with the National AIDS commission to develop the optimum structures and managementsystemsfor Community Home Based Care in Malawi's urban environments, and in particular we hope to examine the role of community based care supportersto facilitate the nurseswork. 3.2 Clinical care The Lighthouse clinic was startedto provide care to clients identified through researchinto smear negative TB,90%o of whom were HIV +ve. It has grown to become the first specialist clinic for HIV / AIDS in Malawi. Lighthouse clinic is a free, open accessclinic to people living with HIV and provides medical back-up for patientsreferred by community HBC volunteers and nurses.The main servicesprovided are: o Registration and regular follow up of HIV positive clients o Diagnosis and treatment of opportunistic infections o Initiation and maintenanceof prophylactic medication o Initiation and maintenanceof antiretroviral therapy o Initiation and maintenanceof pain control medication o Referral to other services,especially at LCH, if needed The demandfor these serviceshas steadily increasedfrom 20-40 patients/monthin September2000, to 270 patientsin May 2001 and nearly 600 patients in April 20O2. The Lighthouse Centre has doubled the number of our consulting rooms to four, and also provides aday careward where patients can rest and recover, and receive intravenous fluids and medicines. We are now seeing up to 60 clients per day. Working together in the new Centre, the Clinic provides immediate back up to the HBC teams, with specialist clinicians available to support the HBC nurses. The Lighthouse has identified two main challengesthat face the clinic over the next year. The first will be to develop an effective and responsive system to ensure long term adherenceto AntiRetroviral Therapy for HIV. We are working together with the National AIDS Commission and the National TB Program to develop robust record keeping, effective patient education, and rapid follow-up of defaulters.Secondly,we are working to build understandingof palliative care in Malawi. The clinic will take the lead in procuring and establishing the use of oral morphine solution to provide effective pain control for clinic and home basedcare clients. We hope to expandthis to support more effective pain control in our partner organizations,and eventually to take on a training role in palliative care. 39
PROJECTUPDAIE .?
The Lighthouse Clinic places emphasison prevention as well as care. It encouragespatients to attend with their pafiners. is proactive in helping clients to formulate strategiesto prevent further transmissionof HIY and ensuresthat condoms are always freely available. The Clinic is complimented by counselling services, and many of our clients come to the clinic through drop-in VCI or-chooseto use our VCT servicesafter possible causesof their illness are discussedwith them in the clinical setting.
In 2002, we are focusing on building the strength of the organizalion, developing systemsand proceduresthat can provide our foundation. These will be essentialto maintain our standardsa-s we grow. We will establish ways of monitoring and evaluating our performance,and set ourselvesfirm targets.We will look for donor partners who will share our goals and work with us to secure our future. Above all, we must never forget that we are working to care for our clients, and that their needs must come first in all we do.
3.3 Counselling and HIV testing A counselling service at LCH began in 1998, initially led and funded by UNAIDS, who recruited the "Core Counselling Team" (CCT) from members of PLWA support groups. When funding for the CCT ended in 2001, and Lighthouse was able to step in to allow them to continue the valuable servicesthat had been stafied. Two full-time counsellors were employed to staff the Lighthouse counselling unit, and to manage and work together with the CCT in LCH. Two additional professional counselling staff were recruited though our pafiners in the PToTESTproject of the National TB Program, and established VCT servicesat Bottom Hospital, next to the city TB registry. The Lighthouse now takes responsibility for supervising a network of counselling services. Lighthouse VCT services are available at; o The Lighthouse Centre (four new counselling rooms, sup porting drop in clients and those referred from the Lighthouse clinic, HBC, and LCH) o Bottom Hospital (one room supporting the TB registry and wards) o Area 25 atdArea 18 health centres(open 3 days per week and 2 days per week respectively,providing more accessible VCT to these communities) o LCH wards (confidential counselling and testing for clients too ill to easily reach drop in centres) Wherever practical, Lighthouse VCT services use Rapid Test Kits for HIV testing. Currently, rapid testing is available at Lighthouse and at Bottom Hospital, but we intend to extend the service to the wards at LCH, and eventually to our outreachcentres. Kits are provided through by CDC, through MACRO. Our partners in PToTESThave piloted the use of rapid test kits by non-laboratory staff, enabling testing to be provided as an integrat part of the counselling process.We feel that this is the ideal situation from the client perspective,and intend to support and develop this procedure. We will work closely with laboratory services at Lilongwe Central Hospital to establish quality control proceduresto monitor and evaluate the reliability of results generated. 4) The Future of the Lighthouse The staff of the Lighthouse have mapped out a strategy for the next two years.We aim to build the Lighthouse into a centre of excellencefor the care of HIV / AIDS in Malawi, to be a model for other similar organizations around the country. We will develop in partnership with the Ministry of Health and Population, working together to build capacity and mobilise funds rather than competing for scareresources.We plan to act as an implementing partner for many of the National AIDS Commission's long term care and support strategies,establishing efficient and effective proceduresfor integrated AIDS care. We expect to grow rapidly over the next two years, expanding our servicesto meet increasing demand.
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40
Malawi Medical Joumal
