- PROJECT STATUS & DATABASE
- PEER TO PEER PROJECT
- ROMANIA EXCHANGE
- PENTA TRAINING
- ROMANIA IDU HIV INCREASE
- ROMANIA PAEDIATRIC MEETING
- COMMUNITY PROJECTS
During the period 2012-2014 this Viiv Paediatric Innovation Seed Funded Programme has focussed on creating and sustaining a cohesive network for HIV paediatric care and research across the JUSTRI South East Europe (SEE) region, which includes; Albania, Bosnia, Bulgaria, Croatia, Greece, Hungary, Macedonia, Montenegro, Romania, Serbia, Slovenia and Turkey. JUSTRI has worked closely with UK colleagues from the Children’s HIV Association (CHIVA) and European colleagues through the PENTA paediatric network to develop and execute the various parts of the project. For all of the countries of the region, excepting Romania, there are few diagnosed HIV infected children resulting in limited expertise in this area of health care professionals as well as practical problems such as poor access to paediatric formulations. This project has been designed to support and develop the capacity and engagement of the few doctors and other healthcare workers who shoulder this heavy burden of care as well as involving some of the patients they look after. In the second year of the project we extended support to selected countries from the Middle East and North Africa (MENA) region.
The following are elements within this project:
1. Training & Resources
a. JUSTRI Paediatrics SEE & MENA Regional meeting September 6th-7th 2013
Held at the European HIV Academy, Bucharest, Romania, in conjunction with CHIVA, this meeting brought together many of those caring for children in the region for a training which provided an opportunity to share experience and to develop on-going collaboration in both care and research. The training focussed on addressing some difficult subjects such as palliative care and pain management in children.
b. Tr@inforPedHIV PENTA course
Support was provided in 2012 for five regional paediatricians (4 Romanian, 1 Turkish) to participate in this course in Rome; one Serbian and one Hungarian signed up for the 2013 course and two further Romanian paediatricians will attend the 2014 course. Their experience was overwhelmingly positive and these doctors are now better skilled to care for their HIV positive children.
c. Statistical training has been provided to support young researchers to attend either the Royal Free Hospital (RFH) London Statistical course or that provided through the European AIDS Clinical Society, both internationally recognised trainings.
d. Virology training to support paediatric services has been established through JUSTRI and bi-lateral laboratory exchanges have taken place with Romania, Macedonia and Serbia. This project was developed in conjunction with consultant virologists, Dr Dan Webster, in London and Dr Dan Otelea in Bucharest. This has led to the setting up a regional laboratory networking group who will meet to plan future activities during the Romanian National HIV meeting in Sibiu in May 2014. This group will work on sharing expertise, information, resources, supporting joint research initiatives, optimizing costs etc. across all laboratories that provide HIV and viral hepatitis support for children in the region. Further links are being developed with laboratories in North Africa
e. A Skills Exchange programme for paediatricians and associated health care professionals such as nurses and pharmacists from SEE/MENA has been established with the UK and 12 exchanges have taken place with 10 more planned this year.
f. A Virtual Clinic support service is in place for directed paediatric clinical support for the regions provided by Professor Caroline Foster, St Mary’s Hospital, London UK and has been used by a number of centres for complex case reviews.
g. JUSTRI Women is an on-going project which aims to support and develop targeted women’s services in the region. Miss Alison Wright, Consultant Obstetrician & Gynaecologist is leading on this and has arranged trainings in in Bucharest and Cluj and at the JUSTRI Surgical meeting held in Târgu Mureș in June 2013 which brought together 50 surgeons from the region to discuss all aspects of surgery, including paediatrics.
h. NUSRETRI has been founded as a group within the organisation to focus on the training and needs of nurses and has carried out four trainings for 20-30 nurses covering all aspects of HIV and paediatric care, further meetings are planned to help fulfil the potential of nurses to best deliver quality care in their local settings.
i. ‘How To’ guides to establish and run an HIV Women’s Clinic or a Viral Hepatitis Clinic have been produced and further guides on ‘Could this be HIV?’ and HIV Sexual Health are being developed, all of which have aspects related specifically to the paediatric or transition populations.
j. JUSTRISLIDE at www.justrislide.com is a free searchable, downloadable library of over 3500 slide presentations with over 100 paediatric presentations which is constantly being added to.
2. Adherence and Support
a. JUSTRI has partnered with Senz Positiv, to develop and support an adherence project which provides peer-to-peer adherence training and support of children and adolescents in Bucharest, Romania. This is now being replicated in other centres with a significant burden of paediatric cases with additional work to provide paediatric service providers in smaller centres with guidance on how to undertake this work
b. A project to develop Mother-Child adherence work in selected centres in the region is being undertaken by Debbie Levitt, senior counsellor at the Royal Free Hospital, London. She already conducts such training programmes in various African countries and India and is adapting the work to the settings in SEE & MENA.
a. JUSTRI is providing expertise and resources to help local research staff to develop and population databases for epidemiologic research. Support for statistics planning, analysis and writing up projects from these databases for publication and presentation at scientific meetings has been provided though JUSTRI by Dr Colette Smith a senior statistician from London. The large paediatric database at Victor Babes Hospital, Bucharest has gone through this process and analysis is underway for publication this year.
b. A project is being developed to use Fibro scanning and other methodologies to assess liver damage in the paediatric population with the support of the Hepatology and Infectious diseases group at the Royal Free Hospital, London. Local training will be provided as will support for data collection, analysis and publication.
c. Paediatricians form the area will be encouraged to write up case reports for publication in the peer-reviewed on-line journal JN1, four are already published and others in development.
All of this work has been planned and executed in conjunction with local doctors and nurses who care for children and adolescents to promote interaction and learning from each other. Experience is widely varied across SEE and MENA and the focus of the project was to provide support for the front-line care of patients whilst building on the knowledge base and capacity of those who have only a few children to care for. We hope in some small way to be achieving this in a sustainable way by bringing everyone in this field together and building links for future interactions.
This is well advanced and has effectively been in place at MB and VB now for two years under Alina and Robert Fieldhouse form Baseline
To view the Peer to Peer Project report, click on it’s cover below. To save it, right click on the cover and select ‘save link as’ or ‘save target as’ and select a place on your desktop.
Peer to Peer Project Update: Bucharest, Romania
The peer to peer project started in December 2011 and is still ongoing in Bucharest, Romania. In the past two years, the team has undergone some changes.
At the present moment the team consists of: Alina Dumitriu-Project Coordinator, Oana Georgescu-Project Assistant, Cristina Marinescu – Peer Educator, Petrisor Andrei – Peer Educator, Nicoleta Loghinov – Accountant. The responsibilities of each member of the team remain the same. Daniel Ion has left the team in August, 2013 due to lack of time and to another career he wanted to pursue. From an email he sent to all of us, he communicated that „It has been an experience of a lifetime, because answering to them (patients) I managed to answer to myself. It helped me personally with a closer insight on how patients feel and on-site knowledge and professionally with medical routine and terminology for my future work.” . Daniel also left somewhat frustrated on the shortcomings of the medical system and the helplessness he felt at times in the process of peer education. Overall, we were pleased with Daniel’s work and development, especially on a personal, social and interactional level- we believe that his engagement with patients, the supervision sessions and the counseling sessions helped him in that direction.
At the moment, we are pleased with how our peers have evolved and responded to their training and personal development. Since the last report in December 2012, – Cristina Marinescu started working in August 2013 at Victor Babes Clinical Hospital (http://www.spitalulbabes.ro/) where we collaborate with Dr. Luminita Ene, dr. Cristiana Oprea and dr. Erscoiu Simona and their staff.
At the moment Cristina Marinescu has been working in the Victor Babes Hospital while Petrisor has been in training since February 2013 and has been attending once a week as a volunteer the syringe exchange DROP IN Center Colentina, shadowing and helping Alina and the other staff with their work and learning to work with vulnerable groups and their specific needs. . Next week, middle March 2014 he will start working as a peer educator at Victor Babes as well. He has had a previous attempt to start working at „Matei Bals” Institute of Infectious Diseases but, although he was initially accepted as a peer educator to work in the children section, he was later told he cannot go anymore by the hospital adminstration and the situation remains the same to this day.
Apart from their on site work, an integral part of the project is to attend once a week personal therapy to help with their personal development and deal with issues that might arise from their work, attend a weekly two hour intervision meeting with the project assistant and psychologist Oana Georgescu and communicate and meet with Alina Dumitriu for supervision issues or advanced information issues. They are undergoing a continous learning process – they have a weekly learning theme that they receive through email and discuss in the intervision meetings (tuberculosis and HIV, hepatitis and HIV, how to communicate according to the patients needs, social and educational level, how to maintain a peer-patient relationship, mother to child transmission etc., how to work with the other staff in the hospital to ensure access to patients).
For the past year, Cristina has been working in the hospital, two days a week, from approximately 9 until 1 o’clock, offering support and information on treatment and treatment adherence. She has also been very good at bringing to the team’s attention the cases where additional support was needed on a social, emotional or medical level or whenever there were treatment shortcomings or changes in the hospital dynamics – such as the introduction by the hospital psychologist of a psychology student to work as a peer on the section where Cristina works, who confuses the patients with her approach. She attends approximately to 2-4 patients every time she is at the hospital, either keeping in touch with older cases or attaneding to the new ones arrived. Cristina also goes to the DROP IN – Volunteer Testing Center once a week, to learn to interact with vulnerable groups – IDUs, sex workers, street children, homeless adults, co-infected with HBV and HCV, who also live with HIV- and to learn the particularities of each of these groups. Cristina has improved greatly in her work, attitude and knowledge. She shows dedication to her patients and her work, attends all meetings and communicates efficiently with the project coordinator and the project assistant.
Ever since he started this program, Petrisor indicated a need for firm boundaries and reminding of his responsibilities and duties. Although it has been challenging for him, he stayed in the program and has improved in his attitude, accepting authority in a healthier way, assuming responsibility and the consequences of his own actions (reading, attending meetings) and is very excited to start working. We look forward to help him and monitor his progress with the patients. Petrisor will start working next week at Victor Babes, adult section. Dr. Luminta Ene has talked to Dr. Simona Erscoiu who said she needs Petrisor’s help to work with the adults, most of them IDUs who live with HIV.
Both of them have become more involved, dedicated and interested in their work and the people they offer services to. Whereas in the beginning it was hard to keep up interest for reading and information, it is their own personal need and will to address the patients needs correctly and adequately.
SENS POZITIV Project Assistant & Project Coordinator Oana Georgescu & Alina Dumitriu
We have 4 exchange groups working now at JUSTRI, doctors, nurses, pharmacists and laboratories. NURSETRI run by a group of UK senior HIV Nurses is organising bi-directional nurse exchanges for 3-4 days and have already planned one for Romania this year, we have already completed one with the two senior nurses from VB and MB and will be doing further ones each year from now on, Tristan Barber is organising doctor exchange programmes for JUSTRI and Leonie Swaden is doing the same for pharmacists. Dan Webster our virologist has just returned from Macedonia where he is developing lab support for them and has Dan Otelea visiting in June to the RFH, he is very impressed with Dan’s set-up at MB and they are already in discussion about joint research projects. There are the possibilities of PhD students coming under his wing to UCL. We also plan to expand our psychologist support.
JUSTRI has supported 7 doctors so far since 2012 to attend the PENTA training course in Rome. See below the testimonial from the training from one of the doctors.
TRAINING REPORT: PENTA Course, October 2012, Rome By Ruxandra BURLACU, MD
I currently work as an infectious diseases specialist at the AIDS Paediatric Clinic of “Dr. Victor Babes” Clinical Hospital for Infectious and Tropical Diseases, in Bucharest. The hospital provides specialized medical care for pediatric and adult patients from Bucharest and five surrounding counties. It is also the only tropical diseases centre in Romania. Out of 11,000 HIV infected patients in Romania, 2500 were followed-up here. At present, our AIDS Department has an outpatient clinic with around 600 HIV infected follow-up patients and an inpatient clinic with 110 beds.
Romania, a limited resources country, has the largest group of parenterally infected children in Europe – now adolescents – with around 18 years of chronic HIV-infection and 10 years of antiretroviral treatment experience. Providing care for this special population is challenging in many ways and exchanging experience with other groups that have dealt with the same issues is highly important for us.
From a medical and social perspective, this course has enriched my knowledge regarding:
- Reducing MTC transmission for young adults and promoting cooperation with gynecologists for HIV diagnosis in pregnant women.
- The prevention activities primarily MTC transmission as well as nervous system complications.
- Providing pre- and post-testing counseling of all persons at risk referred to our hospital
- How stigmatization and discrimination is addressed in other countries and the means of improving public awareness of the impact of HIV and AIDS.
- The management of multi-experienced patients (new drugs, invigorating our adherence to HAART programs).
- I feel that attending this course was an excellent opportunity for me to add to my experience, and to exchange and share knowledge, best diagnosis, treatment and prevention practices with other colleagues.
As a young clinician and researcher in the HIV area, I hope to be able to use this experience to improve my skills and further develop projects I’m a part of.
JUSTRI has just submitted an EU grant with partners from Romania, Slovenia, Croatia, Malta & Hungary. In Romania we have Senz-Positif, UNOPA, VB and MB involved and the call was to increase testing and entrance into care of vulnerable groups in EU countries. It is a large 3-year project and we are awaiting to see if we are successful. It was a lot of work but even if we don’t get it we have strengthened our NGOP interaction across these countries and we will look for further funding for joint projects. The main core of the project is to produce guidance documents to improve these issues and to pilot test them in the field.
As part of the JUSTRI commitment to children and young adults with HIV, in conjunction with CHIVA, PENTA and UNICEF we brought together experts from the fields of paediatrics, HIV and associated disciplines to provide expert support and a learning environment for those working in the South East Europe region.
All slides from this meeting are available on www.justrislide.com
To see the post made on this report with more images, click on the picture below.
- January 2012 we raised £1,042.60 at a fundraising event in Brighton. Georgie and Sean Nolan (Brighton Friends of Justri) for the funding of this particular project by hosting a fundraising event back in January. CLICK HERE to see the full post.
- May 2012 – Casa D’Or Victor Babes Hospital, Bucharest. Painting the front of building and garden revamping. This project was so much more than renovating the front of a building. It was especially rewarding and vital to have the staff and residents proudly getting involved and helping out and making it a fun experience. >>CLICK HERE to see the full post and images from this project.
- June 2012 – Matei Bals redecorated baby room. We transformed this very basic, functional room with metal cots, plain walls and bare windows into a much warmer, vibrant and stimulating environment for its occupants. This transformation was not just for the benefit of the babies, we could also see how much it meant to the staff at the hospital by the reaction on their faces. >>CLICK HERE to view the full post and see images. >>CLICK HERE to view the full post and images.
- September 2012 – after an appeal from Dr Lumi for life saving medication for a patient suffering from Meningitis we urgently sourced that medication and flew it on the earliest flight to Bucharest where treatment could commence without interruption. >>CLICK HERE to view the full post.
- December 2012 – we shipped 250+ kgs of clothes/toys to Bucharest which was distributed by Alina and volunteers at Magical Little Boxes event. We have been collecting clothes/toys over the course of the year which we take with us each time we visit Bucharest, so this figure of 250kgs is much higher
Donations are used for the following supply of drugs;
- JUSTRI has just supplied rifabutin, an expensive drug used for tuberculosis, to Dr Simona Tetradov, for a newly diagnosed HIV patient with tuberculosis in Bucharest. He is on methadone substitution and had a severe withdrawal syndrome when he was rifampicin, on the only drug of this type available locally. He was switched to rifabutin and is now doing great we will treat him for a year until he is cured of his TB.
- A six year old child was recently diagnosed with HIV in Skopje, Macedonia, she was very sick and only weighed 14kg. There were no paediatric liquid formulations available in the country so JUSTRI bought a two month supply and one of the JUSTRI volunteers took it out to the hospital in Skopje. In the mean time we lobbied the drug company who produce it Abbvie to maintain the supply and after some discussion this will now happen. She also developed anaemia on another antiretroviral and we have supplied an alternative which is working and the child is improving.
- JUSTRI has undertaken to supply on a regular, long term basis, a blood thinning agent called dabigatrin for a young girl with HIV in Bucharest, Romania where this drug is expensive and has to be paid for by the patient ( it is not covered under their health care and she is unable to pay for it)
- JUSTRI has supplied pyrimthamine and sulfadiazine for a patient with Toxoplasmosis with underdosed Septrin (therefore ineffective) for Dr Luminite Ene at Casa Doru clinic , Victor Babes Hospital, Bucharest . They did not have the funds/access to these drugs which were vital to treating the toxoplasmosis. The drugs have been shipped and the patient is doing well.