Team PATA

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2007 Newsletter, Vol II Issue 5

Working together to improve and extend care for children and families affected by HIV/AIDS.

In this issue:

1. Registration for PATA 2007 Forum (Annual PATA conference)
2. Meet our host team: Baylor Swaziland
3. Expert Patient Update: Introducing some of our expert patients
4. Mentor focus: Shaffiq Essajee
5. Guidelines for being a child-friendly clinician
6. Interim PATA 2006 Evaluation and Update on Progress Reports
7. PATA welcomes French translator on board
8. Hamburg clinic featured in new documentary film

1. Registration for PATA 2007 Forum (Annual PATA conference)

PATA 2007 is taking place in Swaziland from Tuesday November 27th to Saturday December 1st. The Forum will focus on strengthening and amplifying treatment outcomes through evaluating and improving current clinical practice - with a special focus this year on adolescents and TB, assisting families and communities through social entrepreneurship and amplifying health care capacity and treatment outcomes (which we call the 'PATA Effect').

Please email Melanie Evans at melanie@teampata.org to request an application form.

Travel and Accommodation

Accommodation, meals and conference costs will be covered by PATA. However we do ask each team to make its own travel arrangements to and from Swaziland. If you are unable to secure funding for this, please let us know as we have a small travel budget available.

PATA is organizing overland transport for teams from Johannesburg to Swaziland. If your team is able to arrange travel to Johannesburg, then PATA will be able to assist you in getting to Swaziland.

Forum Applications

We would like to invite all PATA teams to apply to attend the forum. As there are a limited number of places available at the Forum please let us know as soon as possible whether your team will be able to participate in PATA 2007. Send your email to melanie@teampata.org with the names of your team participants and the source of your travel funding - or whether you need and wish to apply for travel funding.

We hope to see you there!

2. Meet our Host Team for PATA 2007:

Baylor Swaziland

We spoke to Nomvuyo Shongwe and the team at the Baylor clinic to give us an insider's view of Swaziland, so that those of you lucky enough to attend this year's forum will know what to expect when you get there.

PATA: Tell us a bit about your beautiful country

Nomvuyo Shongwe: The kingdom of Swaziland is a landlocked country, with a population of just over one million. The economy is based on agriculture, mining, food processing and the manufacture of clothing and light consumer goods. Health services are delivered through six hospitals, six public health units, five health centres and over 140 clinics throughout the country. These health facilities are either government-owned, church, or private institutions.

PATA: What should visitors look forward to seeing when they visit Swaziland for this year PATA Forum?

NS: Our culture and traditions are unique and very much alive including the spectacular reed dance performed by thousands of maidens in their charming traditional dress, the sacred Incwala Ceremony each December, in which the King actively participates and the thrill of the energetic Sibhaca Dancers.

While it is easy to explore Swaziland by yourself in a motor car, you can also take guided tours or try horse riding, mountain biking and walking trails. Throughout the country you will find talented men and women at work creating the fine handcraft items that are so popular with our visitors.

PATA: What is the HIV-situation in Swaziland?

NS: Swaziland is one of the countries most severely affected by HIV. The first AIDS case in Swaziland was reported in 1987 - to date more than one in three adults are infected. The epidemic has been fuelled by poverty, unemployment, a large migrant population, conservative religious and traditional beliefs against condom use, and concurrent multiple sexual partners.

About 75-80% of the people with tuberculosis are co-infected with HIV. According to the 2006 sentinel surveillance report, HIV prevalence among pregnant women is 39.2%. In Swaziland, approximately 40,000 deliveries are registered every year. Approximately 16,000 children are born to HIV-infected mothers annually.

PATA: Why is Swaziland the ideal place to host PATA 2007?

NS: Firstly, Swaziland is peaceful, making it easy to accommodate a forum like this. The administrative efficiency of the Ministry of Health makes it easy to access the policy makers and relevant partners to make a Forum like PATA 2007 happen without a hitch.

PATA: Tell us more about the Baylor clinic.

NS: Baylor started operating in February 2006. On day one we saw 20 patients! We were excited given the fact that the clinic provides exclusively HIV/AIDS care and management - therefore we thought the public would feel stigmatized. Our clinic is situated five minutes away from the referral hospital (Mbabane Government Hospital). It is a national referral paediatric HIV/AIDS clinic with outreach services in 15 health facilities. Currently we see an average of 90 patients per day and up to 175 patients on busy days. We have had about 4,800 patients encounters since inception and a total 3,008 active patients. Of these, 1,552 are children younger than 14 years and 1,456 are older than 14.

Comprehensive clinical services are provided with psychosocial support to patients through counselling and support groups. There is one support group just for adolescents, one for parents and caregivers and three for mothers and their partners at PMTCT sites.

PATA: What are the biggest challenges for your clinic?

NS: We need a conducive, well equipped in-patient environment (our clinic is an out-patient facility, admissions are referred to various regional hospitals). We need laboratory equipment and laboratory staff with salary packages. A CD4 machine is at the top of equipment list. The national reference lab is overwhelmed by CD4 specimens from all over the country it breaks down now and again. We also need transport for outreach services.

PATA: What exciting projects would you like to share with other PATA Clinics?

NS: We would like to share our outreach projects, PMTCT-plus roll-out and paediatric HIV/AIDS care and management at community level.

PMTCT-plus and paediatric services are currently rolled out on three sites. The project started in February and in four months more than 500 patients have been enrolled. These are mothers, their partners and children. The service provision is anchored on continuum of care, whereby a pregnant HIV positive mother is enrolled, followed up through delivery and post natal, with clinical and psychosocial support all the way. Through the family approach the mother is then able to bring in her partner and other children for HIV testing, who if tested positive are enrolled in the project. The same is done with infants and children if diagnosed with HIV in MCH clinics - the child's family is taken on board.

PATA: What progress has your clinic made towards reaching goals for this year?

NS: We have made progress in establishing and implementing patient management systems including follow up of patients, initiating ARV eligible patients on ARVs and increasing adherence percentages of patients on ARVs.

3. Meet our Expert Patients

PATA's Expert Patient Programme is well under-way with 72 expert patients being employed in 17 different clinics in countries across Africa. Most of the expert patients started working at the beginning of July. This month we introduce you to two expert patients working in Kenya.

Akinyi is 27 years old and started attending a clinic in Kenya in October 2006 when her child became a patient there. She previously worked as a volunteer nutritionist at a parish mother and child clinic where she was involved in weighing the babies, giving food rations to mothers and in advising mothers on better nutrition and cleanliness.

"HIV has affected my life because I am always sick and I do not have money for drugs," she says. "It [the Expert Patient Programme] is good because it helps the patients to have hope and to give back to society."

As a PATA Expert Patient, she is employed to assist in community health centre activities which include organizing patients for clinic days and assisting in community mobilization. The aspect of her job which she enjoys the most is being able to sensitize the community to HIV.

"Every little bit helps," she says, "If we are going to go forward in the fight against HIV, it has to be a joint effort."

Ciru is 29 years old and works at the same clinic as Akinyi. Ciru became involved in the Expert Patient Programme through her work as a volunteer in a comprehensive care clinic. As an Expert Patient, it is Ciru's responsibility to see that patients are made to feel comfortable at the clinic, and that they know where to go next in the clinic and how to book their appointments for follow-up. Ciru gets satisfaction from knowing that she is able to make a difference to people who need help.

"Some patients are treated and then later they are lost to follow up," she says. "A little courtesy to the patients goes a long way to help with the adherence to treatment."

HIV has taught her that we are all affected in some way, and with a little more help, we can reduce the stigma associated with HIV. Ciru recommends that we should give the very best service possible to patients. "This will help to change the attitude both where we work and out in the community as well."

PATA would like to thank Angela Kiragu for facilitating the interviews, and to wish Akinyi and Ciru and all our expert patients the best of luck with their exciting new jobs.

We would love to hear about the experiences of Expert Patients at other clinics. Please email your stories to melanie@teampata.org.

4. Mentor focus: Shaffiq Essajee

We asked PATA mentor Shaffiq Essajee, based in East Africa, to tell us more about himself and his work.

I have been a paediatric HIV clinician since 1995. I treated some of the first children to receive HAART in New York and saw them make incredible progress in health and well being. I also watched the rate of new paediatric infections drop to unprecedented levels with the use of ARVs to prevent mother to child infection.

At the time none of this seemed possible at home in Kenya, but the past few years have seen a dramatic change in the landscape. More children than ever are accessing treatment and organizations like PATA have created a Forum for clinicians caring for children to share ideas and form a community.

I have been fortunate enough to have been involved with PATA since 2005 when I joined the PATA steering committee after our first conference in Cape Town.

The growing focus on AIDS in children is long overdue but also very exciting. For the first time, there is real funding available to treat children, new paediatric formulations such as fixed dose combinations to facilitate scale-up and increasing access to infant diagnosis in many countries. But we still face major challenges especially the lack of trained professionals.

Expert Patients are a real solution to this human resource problem. People with HIV are often highly motivated and can fill a range of roles in the clinical setting from clinical assistants to community health workers. In the Kisumu, Kenya FACES program for example, PATA is funding 12 expert patients who will be serving as clerical staff, nursing aides and child life advocates. They will be extensively trained and become fully integrated members of the clinical team, attending weekly continuing education sessions.

The FACES program is one of our pioneer sites and we hope that their experience will provide valuable learning for all PATA sites!

5. Guidelines for being a child-friendly clinician

Shaffiq Essajee has put together some tips on how to be a child-friendly clinician. Each of the next 4 editions of the newsletter will include some of these tips to inspire you towards becoming more child-friendly within your clinic. A poster format of Shaffiq's suggestions will be launched to participating teams at PATA 2007 in Swaziland.

6. Interim PATA 2006 Evaluation and Update on Progress Reports

32 teams attended the PATA conference in November 2006. Six months after the conference, teams were emailed an evaluation form via the PATA newsletter. Seventeen teams responded to this email and their evaluations have been combined to produce a detailed interim report that will be sent out in the next newsletter.

Many thanks to the following teams for their frank and insightful contributions:

FACES, Kakamega, Kilgoris Transmara, Coast Provincial & Maragua District Hospital (Kenya); Partners in Health, Kigali (Rwanda); CAP/HealAfrica (DRC); JCRC & TASO (Uganda); Songea CTC (Tanzania); Oshikuku (Namibia); Yaounde (Cameroon); Keiskamma Health, Uitenhage & Dora Nginza (South Africa); Baylor Swaziland; and Lesotho.

In response to the difficulty that some of our teams have in receiving and sending emails, a hard copy of the evaluation form will be posted with the forum certificates to be faxed back. Teams that might not have submitted evaluations but would still like to do so, are encouraged to contact Melanie as we value all of your feedback and ideas.

PATA is very grateful for all the teams? recommendations for topics you would like covered to see at the next forum. The list generated from teams will be very helpful in providing direction to Stephen Rollnick and Paul Roux and their team of paediatric HIV experts in formulating the programme for PATA Forum 2007. Teams and individuals who would like to email additional comments/suggestions are encouraged to contact melanie@teampata.org.

7. PATA welcomes French translator on board

We are proud to announce that, from this month, Virgile Mahoro will join the PATA team as French/English translator. Virgile, who attended PATA 2005 (Cape Town) has worked closely with Sara Stulac in Rwanda.

He will assist Melanie Evans with communicating with all our Francophone teams and will be translating each month's newsletter into French. If you would like to subscribe to the French version of the newsletter, please email Melanie.

8. Hamburg clinic makes it onto the big screen

The Hamburg Clinic in the Eastern Cape Province of South Africa was recently the focus of a new documentary screened at the Encounters Documentary Film Festival in Cape Town and Johannesburg.

Directed by Miki Redelinghuys, the 90 minute film documents how everyone in the village, from grandmothers to the hospice to the doctor, fights for the human dignity of the greater community.

An altarpiece created by the community (which was also recently exhibited at the Grahamstown National Arts Festival) plays a central role in the documentary as it depicts many wonderful characters: the gogo Eunice who is such an essential figure in the hospice that she forgets to look after herself, the musician/prophet that runs designs into the sand, the doctor constantly checking that her patients have taken their medicine, and the lost boy searching to find his place in the world.

Sounds like a must-see!

Contributors to this edition: Nomvuyo Shongwe and the team at the Baylor Clinic, Angela Kiragu, Virgile Mahoro, Akinyi, Ciru, Melanie Evans & Shaffiq Essajee.

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2007 © PATA

© Published online from South Africa.