2013 – A Twinning Update

Twinning update – May & June 2013

My colleague Fiona Brennan and I travelled to Vietnam during May this year to continue our collaboration with the Vietnamese Association. With a busy schedule planned for the week, we were determined to make full use of our time in Vietnam.

Our first meeting was chaired by the Director of the National Institute of Haematology and Blood Transfusion Centre in Hanoi, Professor Tri. During this meeting, we were updated on the progress of the twinning programme, and indeed they have progressed extremely well. Although not a lot has changed with the factor situation and the percentage that the patient has to pay, nevertheless a lot of work has been done which will become clear as you read this article.

Later in the day a workshop took place on volunteering. Fiona arranged to have all 35 volunteers separated into their respective groups to discuss the main needs of members in their provinces. The conclusions were similar: they need practical help and support for their members in their local areas. This session certainly gave the volunteers and chapter leaders a focus for future plans and activities.

The following morning we met with the Irish Ambassador Mr. Damien Cole and his Deputy Mr. Garvin McCann. This was a good meeting; the Ambassador is clearly very interested in this programme and offered assistance to us with some advocacy work in relation to the availability and cost of factor.

The afternoon began with a workshop on governance and prioritising activities and plans for the future. This session stirred up some interesting discussions and ideas about the future plans of the Society and its various chapters. I discussed the importance of consistent contact, reporting and guidance between the board and the various chapters. Fiona then discussed the qualities that their leaders should possess. There are some excellent voices and leaders in the organisation, who are passionate and ready to make a difference for people with haemophilia in Vietnam.

The following day we travelled to Hung Yen which is a city approximately 60 kilometres outside Hanoi. We were welcomed by a group of 32 people made up of chapter leaders, people with haemophilia, parents and children. They were clearly delighted to see us, and appreciated us taking the time to travel to their city. This chapter is doing excellent work. In November 2011, they had 7 members, today they have 60 members. They meet on a monthly basis to chat, share experiences, exercise and to sing, which helps them stay positive. They all exchanged phone numbers to maintain contact.

They are a very strong group, with a very good chapter leader Mr. Hau who is a young man with haemophilia in his thirties and is married with two children. Over the last year they have be able to help 3 men with haemophilia gain employment. This chapter is still very young, and clearly they are so keen to learn. They want to be educated; they want to get on with it as much as they can. They stay close and support each other. Some of them have been through college, which is great and they also mentioned some of the challenges that came with being a young man with haemophilia going to college in Vietnam. One young man is a teacher, another works at repairing phones, another is a hairdresser, and others work in I.T. Mr. Hau spoke about his dream to help patients get jobs, to be educated, to obtain home treatment and to improve their lives as much as they can. I truly believe from what I heard that this is achievable, they are going in the right direction. I was very impressed by this chapter; they seem like a great group of people, they are very positive and focused. Previously when I visited Vietnam and when we spoke to chapter leaders I perhaps thought that some of our information and advice may have been just that little bit early for the organisation. However, they clearly listened to everything we said during our last trip, as a lot of suggestions we made are already happening.

The following day we visited Professor Tri in his office for a short discussion. Afterwards, we had a round table discussion with Dr. Mai, Ms. Hanh, some chapter leaders, some volunteers, and some parents in relation to fundraising and a possible employment project. We spoke about funding for the organisation. Novo Nordisk have promised funding on various projects up to the year 2015 to include projects in the whole country, in areas like improving a registry of people with haemophilia, education and training for people with haemophilia, and their families, and for outreach across the country and training also for the medical profession, and publications. Baxter has now also promised to fund individual specific educational activities.
Over the course of the week we both could hear how worried people were about the lack of employment. Some jobs are advertised on their website but sometimes they are not suitable for people with haemophilia so the uptake isn’t great. However, in the chapter of Hung Yen which we visited the previous day, they seem to be doing an excellent job trying to find work for people with haemophilia, so we suggested expanding this to other chapters.

We also had a discussion in relation to a home adaptation project for people with haemophilia. Fiona mentioned items like handrails and equipment for homes would be of great assistance to some members with mobility difficulties. This would be such a worthwhile project; even a simple handrail would be of so much benefit to a lot of people with haemophilia. This will also be explored in the coming months.
Our conclusion meeting was made up of speeches, photos and gifts. Professor Tri thanked us very much for sharing our experiences, knowledge and enthusiasm. He thanked us for coming to his country and for our positive and friendly attitude, and our professionalism. He said haemophilia care is improving in Vietnam and in the coming years it will be even better. He thanked us for our friendship, and appreciated us sharing their culture, food and music during the week. Dr. Mai was also very appreciative of our visit and our assistance.

It was hard to believe but our work was done for the week. At times we really struggled with the heat (I won’t mention one of the days it was so hot we lay down on the floor in the board room after lunch – true story as Fiona says). The week was intense, encouraging, and motivating. We also learned a lot. Everyone treated us so well, in fact at times like royalty. I think it was a very positive week with many good things happening. We had some very interesting discussions and debates, but we also had some fun particularly with some lost in translation moments, me nearly faintly eating a chilly one evening, and me finally mastering the art of using chopsticks!

On Wednesday 26th June we were delighted to welcome our twinning partners’ to Ireland for a short visit. For Professor Tri this was his first visit to Ireland.

A lot was packed into the 3 days which started with Brian O’Mahony accompanying our visitors to the National Centre in St. James’s Hospital. The Centre Director Dr. Barry White, Dr. Kevin Ryan (Consultant Haematologist), and Dr. Vince Jenkins (Chief Molecular Biologist) welcomed our visitors. Many things were discussed during this visit including protocols on home treatment and genetics. It was then onto Our Lady’s Children’s Hospital, Crumlin where Dr. Beatrice Nolan (Paediatric Consultant Haematologist) gave our visitors a tour of the laboratory, bone marrow unit, haematology and oncology day ward, and St. Michael’s ward, following which Dr. Mai gave a talk to the haemophilia team on haemophilia care in Vietnam. I think the team found the presentation very interesting.

A tour of the Irish Blood Transfusion Service (IBTS) had also been arranged. The IBTS Director met our guests and the tour was organised by the Chief Scientist. Being Director of the National Institute for Blood Transfusion in Hanoi, Professor Tri was extremely interested in this tour and asked many questions.

We also arranged a Twinning Reception for Professor Tri and Dr. Mai in the office. Speeches were made by Professor Tri and Brian O’Mahony, after which a cake was cut to celebrate our twinning partnership being awarded the World Federation of Hemophilia Twin of the Year Award for 2012.

On the last day Brian O’Mahony, Anne Duffy and I had a very good meeting and discussed the new governance structure. Professor Tri mentioned that he is currently looking at a second staff person for the organisation, this is very encouraging. Sponsorship for various activities from Novo Nordisk and Baxter were discussed, as was the plan for Brian O’Mahony’s visit in November. It is hoped that during Brian’s visit a meeting can be set up with their Ministry for Health in relation to the factor situation in Vietnam and the percentage that patients must pay. Dr. Mai informed us that the Vietnamese organisation are also bidding to host the World Federation of Hemophilia Congress in 2020, and we wish them the very best of luck with the bid. We also discussed extending the twinning programme after 2014, as the Irish Haemophilia Society feel that this is a long-term partnership, which has and is benefiting both organisations. We are very keen to continue with the twinning programme. We also spoke about the employment project that Fiona and I discussed during our visit to Hanoi in May. Although the visit was short, it was a very enjoyable visit, very worthwhile, and we hope that next year our twinning partners will visit Ireland again and perhaps stay for a longer visit.

The VSCBD is progressing in the right direction; it’s great to see how far they have come in a year. We will continue to work and co-operate with our friends and colleagues in Vietnam and hope that when our twinning programme finishes that we will extend the twinning programme for many more years to come!

Debbie Greene, Administrator