Team PATA

Newsletters

August 2006. Vol. 1 Issue 6.

Contents:

• PATA 2006 conference update – only three months to go!
• Fresh news on your PATA website
• Dr Leon Levin’s Paediatric Discussion Group linked to PATA
• Still time to submit motivations!
• Hamburg team sweeps to fame in Toronto – a success for public & private partnerships
• PATA Forum – where you get heard
• Paris Childhood AIDS Conference feedback
• Mid year updates – Uitenhage and TASO Uganda
• Announcing Songea team changes

Countdown to the PATA 2006 conference

The PATA 2006 conference is taking place in Nairobi from Monday November 27th to Friday December 1st, with support from the PATA team from Kenyatta National Hospital and the Kenyan Paediatric Association.

The conference will focus on strengthening and amplifying treatment outcomes through evaluating and improving current clinical practice, assisting families and communities through social entrepreneurship and amplifying health care capacity and treatment outcomes. The PATA conference is a participative action-oriented programme for treatment teams, comprised of a doctor, nurse, counsellor, and pharmacist.

Invitations for the PATA 2006 conference in Nairobi have now been sent out to the conveners of invited teams. Due to budgetary constraints and the desire to involve a diverse group of African teams, unfortunately we could not invite all treatment teams at this point. If your team is interested in attending but did not receive an invitation, please let us know and we will keep in touch if a spot opens up.

Please do not hesitate to contact us at info@teampata.org if you want to learn more about the conference or have any further queries.

Update on your PATA website

The PATA website is going from strength to strength with the number of visitors steadily increasing in recent months. Since our online forum went live last month, 35 people have registered to join in on the conversations, discussions and exchange of expertise.

Please feel free to go have a look at some of the discussions which have started up. The forum is your space, so make your voice heard or read what others have to say.

Current topics include:

• Does the name of clinics and programmes contribute to stigma faced by people living with HIV/AIDS?
• Is there an ideal age of disclosure to children?
• What are the best ways of helping people to break silence?

We look forward to your contribution, so log onto www.teampata.org and participate! This month sees the introduction of a library section to the PATA site, with direct access to case studies and real stories from clinics. If you have information that you feel can be shared for everyone’s benefit, do please let us know. Of course we also welcome any ideas or comments with regards to the PATA site, just send an email to info@teampata.org.

Dr Leon Levin’s Paediatric Discussion Group linked to PATA

One of South Africa’s premier paediatricians, Dr Leon Levin, has recently agreed to make his Paediatric Discussion Group (PDG) accessible to PATA associate clinics by offering subscription via the website.

This is very exciting news, as the PDG is a very important resource to health care teams involved in providing ARVs. The PDG, sponsored by the South African HIV Clinicians Society, was started up by Dr Levin and currently has a mailing list of more than 600 reaching all over Africa.

The PDG creates a forum through which specific issues in paediatric health care are discussed by using specific case studies. Dr Levin would usually send out a case descrption to the mailing list, together with some related questions.

Anyone can then offer answers or replies to the questions and these responses are circulated to all PDG members. Dr Levin also gets expert opinions from leading figures in the field to respond to the case study. Each case is then wrapped up with a final explication. To date there have been 42 such case studies discussed on the PDG.

Please visit the Library on the PATA website to learn how you can access the PDG resource – it’s a wealth of extremely useful information, tailor-made for paediatric health workers.

Still time to submit motivations!

We would like to thank all of you that have responded to the last newsletter by sending motivations for computers and toys.

We are currently looking at the motivations and budgets and we will get back to you very soon. If you have not yet been able to respond, please do send us a short email outlining whether your clinic is in need of funding for a computer or toys, or if you would like to be involved as a pilot site for the banda play areas. With just a short outline we can then take things further and assist you where necessary through the process.

PATA would also like to use this opportunity to thank Jason Strelitz, a volunteer with One to One Children’s Fund in London, who helped to prepare a submission to the Dell Foundation which resulted in the recent generous donation of computers by Dell (see previous news report online). Jason really came to the party after One to One’s David Altschuler got him involved and did a fantastic job for us. Thanks, Jason!

Hamburg team sweeps to fame in Toronto – a success for public & private partnerships

Eunice Nombulelo Mangwane, Dr Carol Baker from Hamburg in the Eastern Cape province of South Africa have been “swept to fame” at the Toronto AIDS conference.

The team was brought over by an organisation called Make Art Stop AIDS (part of the UCLA AIDS Institute) to present their Keiskamma altar piece, a monumental artwork created by 130 different women from the region served by their clinic. The artwork was created as a community project both to commemorate those who have died from the disease and celebrate their lives.

The UCLA AIDS Institute is run by David Gere, brother of famous Hollywood actor, Richard. Richard Gere was present to do the handover of the artwork at the Cathedral Church of St. James in Toronto.

Eunice Mangwane, a community AIDS counsellor, “charmed all of Toronto in her traditional Xhosa dress and sang her heart out”, says Dr Baker, director of the Keiskamma Trust. “We all felt quite overwhelmed, but also proud and happy and touched. Our altar piece, telling the story of AIDS in our community and honouring grandmothers and their grandchildren in the epidemic is on display in the Cathedral. We have been part of one of the most inspiring events.”

“Last night the Mendelsohn choir sang a few words of a Xhosa song as part of a multi-faith service and Eunice joined in and we are all beside ourselves. I personally invited Manto Tshabalala-Msimang but she did not appear. We are grateful beyond words for what has happened to our work.” Reported on the UCLA News website, Dr Baker said that the altar represented “a turning point in our community's relationship with HIV and AIDS. Miraculously, this work of art — which has no single creator — embodies not just our fears and our losses but the slow restoration of hope in our community.

According to the same report, Richard Gere remarked how the artwork makes one feel “what an entire community of South Africans is going through, how every last person is emotionally and personally affected by HIV.”

The 16th International AIDS Conference in Toronto, Canada, was attended by over 24,000 researchers, health care workers, activists and celebrities from 132 countries. If you were at the conference in Toronto, we would love to hear from you! Please send us an email at info@teampata.org and share your experiences. Link to AIDS 2006 conference website: http://www.aids2006.org

Check out the PATA Forum today

We know you all have hectic schedules, so thanks very much to those who made time to register on the PATA Forum on your website.

This website was created to allow you, the specialists, to exchange ideas. As workers in the field of paediatric HIV/AIDS, you are in a unique position to be an active part of the accumulation of knowledge and expertise of this critical field.

We are all pioneers of a kind facing the great challenge of this pandemic. TeamPATA hopes that the Forum will become a source of support, a place to find colleagues, share stories and confer on your decision making processes.

Exchanging your experiences is vital at this time as the ARV programmes mature and best practice clearly essential to continued effective treatment. Duplication of effort is unnecessary and far too costly. The Forum is the place to cross check your knowledge and empower each other.

There are many features in the Forum to facilitate communication in a space unhindered by geography or time constraints. The message board is viewable to all and allows you to post pressing queries, new discussion Topics and your findings. An email service is also available with which you can contact other members directly. In the Profile settings you can select options which will ensure that you are notified when Topics you have posted are replied to or when you have received new mail.

The Forum is an open community united towards the shared goal of effective care delivery to children living with HIV/AIDS in your clinics. Everyone can make a meaningful contribution and you can be sure of good reciprocity in this common ground. Someone out there is listening and interested in what you are doing.

Send this newsletter on to other practitioners you feel may benefit from this service. Let us build the knowledge we need to face this together.

Please contact us at info@teampata.org if you have any queries or if you need additional features added to the Forum. Simply click here and register now.

Paris Childhood AIDS Conference feedback

Paul Roux recently attended this French conference titled ‘Rolling back AIDS in developing countries’ and reports that it was very successul, but did not accommodate research reports much, nor on outcomes of interventions.

“This,” he says, “was probably because of the wide range of participants and the breadth of topics discussed.”

International conferences like this one allows attendees access to the latest research and updates from experts in the field.

“Stéphane Blanche of the Hôpital Necker in Paris and François Dabis of Bordeaux gave excellent ‘state of the art’ talks on ARV therapy in children,” Roux reports. “But to me, the most exciting presentation was by Sebastian Wanless of the Bristol-Myers-Squibb ‘Secure the Future’ programme. This was a tour de force on the topic of public-private partnerships and how BMS-STF has managed to bring excellent care to many resource-constrained communities throughout Southern Africa. This is a maginificent example of social entrepreneurship.”

Roux was brought to the conference by Sidaction, along with Glenda Grey (Johannesburg), Chewe Luo (New York), Pierre Kariyo (Burundi) and Leon Levin (Johannesburg) – all of whom you might recall from the 2005 PATA conference.

With such a big conference, there are always plenty of networking opportunities and Roux says that David Altschuler also came over from England and that they had plenty of time to do a lot of spadework towards this year’s PATA conference in December.

Mid year updates – Uitenhage and TASO Uganda

Uitenhage

PATA’s intrepid roving reporter Kate Kerber spoke to Dolly Oliphant about her clinic’s progress so far this year, and the continued challenges faced.

PATA: How did you start out in Uitenhage?
Dolly Oliphant: I was transferred from Dora Nginza Hospital (mid-2005) to Uitenhage Provincial Hospital, about 20 km from Port Elizabeth, to salvage the HIV/AIDS programme. Uitenhage is one of the sites in the Eastern Cape province of South Africa providing ARV treatment to both adults and children. Coming from a well-organised paediatric clinic, I was in the middle of never-never land.

PATA: What was wrong in Uitenhage?
DO: I was devastated as the clinic was in chaos. The paediatric clinic was run from an inpatient ward with no clear lines of responsibility or accountability. There were no clear records as to who was on what treatment and no clear record of appointment dates. We were in total darkness and didn’t know who was alive or had passed on amongst the children on treatment. Caregivers were often hostile to us being ‘new faces’ with a different way of doing things. To make a long story very short, we now have a well run paediatric clinic running separately from the adult clinic. We now have 90 children on ARVs and our defaulter rate is zero.

PATA: How did you manage to turn things around so successfully?
DO: We now know who our clients are. We have a good relationship with ‘our children’ and their caregivers. Our clinic is now home away from home, or even better than the homes of the most unfortunate ones. The communities here are poor and there is a high rate of unemployment, especially in the outlying areas that we serve. As luck would have it, we have been adopted by One to One Children’s Fund. We have a beautiful clinic in pastel colours. We have been provided with most of the equipment we need to run the clinic. We have audiovisual equipment which helps with reinforcing adherence. A local businessman is providing the children’s clinic with sandwiches every day.

PATA: What challenges do you still face?
DO: As is the case in many clinics throughout Africa, human resources is a huge problem. We now have our own social worker and dietician. Their contribution to our team is invaluable. A doctor has been appointed since April to run the paediatric clinic full time. We have four lay health counsellors, two of them have been seconded to our clinic by a local NGO - we are grateful for this as their stipend is paid. One to One has also appointed two registered nurses via the Small Project Foundation to assist us at the clinic. One of these nurses will be dealing directly with outreach programmes in support of the ARV clinic. We are still missing a psychologist both for client and staff debriefing, but we are confident in our progress so far.

PATA: How do you manage feedback amongst staff?
DO: We have daily review meetings in the morning with the nursing staff to deal with the previous day’s issues and challenges. Multidisciplinary team meetings are held monthly and according to need. We have what we call monthly HATT (HIV/AIDS Task Team) meetings with our feeder clinics and other relevant stakeholders and NGOs where we share ideas.

PATA: Are you confident for the rest of the year?
DO: I am convinced that we are definitely on the way to being a magnet clinic. The demand for our service is increasing and we are gratified for this turn of events.

TASO team in Mbale and Msaka, Uganda

PATA’s Kate Kerber spoke to Dr Daniel Bogere from TASO in Uganda.

PATA: What has changed about your clinic since PATA 2005
DB: In terms of physical space, a well-equipped, spacious play center is currently being erected in Mbale and this facility will be ready in two months’ time. Patient flow has been improved by making the front desk officer (in charge of receiving all clients) a full time staff member. Online registration for new clients is in progress and our appointment system, whereby clients attend scheduled appointments to ensure quality service, is being strengthened. The triage system in both counselling and in medical departments is also being strengthened. Clear referral networks are now in place and clients are being appropriately referred to public service health units or hospitals.

PATA: What about your staff situation
DB: The staff environment is improving. Recruitment has begun for more staff, to handle the increased workload experienced by current staff. Use of ancillary staff is progressing through in-service training.

PATA: All things considered, where do you stand?
DB: Overall access of treatment has greatly improved as seen by the large number of clients being registered. Our results are good, because services are taken into the community for the clients who cannot travel longer distances to access treatment. Stigma has reduced and disclosure has increased. Above all, quality of life has improved for our patients.

PATA: How have you tried to develop your clinic into a ‘magnet service’?
DB: We have introduced toys and various creative communication materials. Child focused counselling is being prioritized in that the current counsellors are undergoing internal training on the basics of child counselling. Peer support groups are being strengthened. We are focused on improving communication within the team and with clients, using refresher courses to help us. Clients are being empowered to sustain themselves economically through the provision of soft loans and equipment from the project department.

PATA: What challenges remain for you this year?
DB: Staff turnover is a constant issue, as is transportation for clients. We are working on both, by securing new transport, and working out how to improve on the welfare of staff and retaining staff to upgrade skills.

PATA: What would you like to see PATA do more of or become involved in?
DB: Disclosure to children and adolescent issues in relation to ART, including prevention with a positive spin.

Special announcement: Songea team changes

Congratulations go out to Dr John Budotela of Songea, Tanzania, on his new position as Assistant Director for District, Regional, and Referral Hospitals in the Ministry of Health Headquarters in Dar es Salaam. He looks forward to a continued relationship with PATA and paediatric AIDS clinics in his new capacity.

Do you have a question you’d like to ask any of our featured health care workers? Please contact us on info@teampata.org

Remember: The PATA Newsletter belongs to each and every one of you. We would like it to become a place where you can feel at home, where you can learn from your colleagues elsewhere on the continent and pass on some of your own knowledge to those who might need it. Please send us any news from your clinic or country – of successes achieved and of challenges that you still face. Anyone can contribute, simply send us an email. We are here to assist you however we can.

Paediatric AIDS care workers and researchers contributing to this edition: Paul Roux (South Africa), Dolly Oliphant (South Africa), Dr Daniel Bogere (Uganda),
Dr Carol Baker (South Africa).

Extra source: The UCLA News website http://newsroom.ucla.edu

Disclaimer

© PATA 2006. All Rights Reserved. Published online from South Africa.