2013 – A Twinning Update

What a week!!! It’s hard, to sum up, the weeks work in a few paragraphs. As was the case last year, when we (Debbie and myself) made our first trip to Vietnam, the hospitality of the VSCBD staff as a whole was unbelievable. We both really appreciated all of the thought, kindness and time that was spent planning our trip and looking after us while we were in Hanoi, last week. From early morning collections, day trips, visits to patients’ homes, our karaoke night and delicious dinners, no stone was unturned and no task too big.
The progress with peer support and education for patients is developing all of the time, new patients are being diagnosed, career options are being explored within each of the chapters – it felt like 5 years work had been condensed into 1!
Each staff member, volunteer, patient and their families came to the meeting and workshops eager and open to new suggestions and ideas. It always amazes me how willing they are to share their story – it is these real life experiences that motivate both Society’s to work towards a better future. The differences made in the organisation, which only a year ago seemed a long way down the road, are really encouraging and so impressive. It is obvious that the medical team, patients and volunteers are ready to put in the hard work to improve the quality of life for people with haemophilia living in Vietnam. Not only were the workshops and discussions hugely beneficial both to the Vietnamese Society and us but the friendships and understanding between the two countries are growing. We were both surprised at how emotional we were saying goodbye to our Vietnamese friends on the last day!!
Sitting in the office here in Dublin, (exhausted but awake none the less!!) I can honestly say that last week highlighted the importance of our Twinning Programme – we had the opportunity to hear of the developments and progress that the Society are making and while there are undoubtedly huge challenges ahead, these challenges will be met and figured out with the complete support of the I.H.S.
 Fiona Brennan

Day 6 – Wrapping Up
Our final day started with an invitation to Professor Tri’s office in the hospital during which he presented us with a gift of some Oolong Tea. We chatted over a cup of tea and he showed us the many lovely photos he has in his office. We both found it surprising that Professor Tri does not have his own secretary, in fact, he does most of his own administrative work, a busy man no doubt!
After this, we had a round table discussion with Dr. Mai, Ms. Hanh, some chapter leaders, some volunteers, and some parents. Our plan today was to discuss an employment project and fundraising.
We spoke about funding for the organisation. It was good news to hear that Novo Nordisk have promised to fund 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. Baxter has now also promised to fund individual specific educational activities.
Both Fiona and I then discussed targeting some of the funding for the various chapters, and wondered for example if a chapter leader gave Dr. Mai a written proposal for projects and activities in his area, would it be possible for this chapter to obtain funding. It was agreed that this would be looked at. Over the course of the week, we both could hear how worried people were about the lack of employment. It was also agreed that if a chapter applied for some funding through a written proposal to start a small employment project, that this could be looked at. 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. Another suggestion was that the VSCBD could support perhaps an individual person with haemophilia with a once off payment to help them start their own business. Dr. Mai will explore this in the coming months, and of course, we will help in any way we can. This is all really good news. We asked the question was there any organisation in the country that assists people to get work. Apparently, there is, however, there are long waiting lists. We suggested that some of the chapter leaders could connect with this association, and if necessary we could support this with a letter.
During our discussion, although it is excellent that the organisation now has a full-time administration person via the hospital, Fiona and I both felt that perhaps another person was now needed, as the VSCBD are striving forward and might need more assistance in the office. We suggested hiring somebody who could be trained up to help with administration, and to outreach to the various chapters, give educational talks to existing members and new members. Dr. Mai felt this was a good idea, and will speak to professor Tri about this and will try and identify a suitable person. This is something that the I.H.S. might be able to help with.
We then had a long discussion in relation to a home adaption 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. We asked would this be something of interest to the organisation. This would be a fantastic project, even a simple handrail would be of so much benefit. We will work together on this project in the coming months, however, we suggested as Dr. Mai is so busy she should try and get the administration person or a volunteer to work on this project.
Next up for discussion was fundraising. We were informed that when children are in hospital some of the mums make tapestries or various other crafts and they are hoping to sell some of them perhaps via their website. This is a good idea. We were also delighted to suggest bringing one of these beautiful tapestries back to Ireland with us, and we hope that our members might support their association by doing a raffle at one of our conferences. Fiona suggested actually setting up a separate website to sell these crafts. I asked if they had a section on their website for people to donate online, they currently don’t have but will set this in the coming weeks. They are also hoping to set up a fundraising committee in the coming months. All in all, this was a very good discussion.
Finally, 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. In the coming weeks, he will discuss perhaps another part-time staff person for the association.
Then it was my turn to say a few words. I mentioned how happy Fiona and myself were to be back in Vietnam and how much the twinning programme means to the Society in Ireland. I praised them for all the hard work and progress made over the last year particularly with the various outreach groups meeting up and staying in contact, and chapter leaders who are doing tremendous work. I mentioned the publication plan, the employment scheme, the home adaption project, and all the hard work Dr. Mai is doing is just great. I thanked them all as they truly treated us like royalty during our visit, and of course, our dear friend Ms Hanh who has minded us so well and translated for us.
Fiona then spoke and mentioned it was great to see the positive attitude of all those members we met during the week and pointed out again to keep up the outreach to members and also education, as this is key. Fiona also spoke about the great volunteers the association have and thanked everyone for being so kind to us during the week.
Dr. Mai thanked us for our support and help and mentioned how much she is looking forward to visiting Ireland again in June for more co-operation and training.
It was hard to believe but our work was done for the week. What a 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, motivating, and great. We also learned a lot. They truly could not have done more for us. 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! The VSBCD 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

 Day 5 – A Visit to Hung Yen
After a very interesting and worthwhile day yesterday particularly listening to chapter leaders and the ideas they have, I was looking forward today to our trip to Hung Yen which is a city approximately 60 kilometres outside Hanoi. We left very early as the traffic is bad in Hanoi. It took 2 hours to get to Hung Yen. It is a very nice city, and yet there is a lot of farming land nearby. We were welcomed by a group of 32 people made up of chapter leaders, people with haemophilia, mothers and fathers and children. They were clearly delighted to see us and appreciated us taking the time to travel to their city. Everybody was introduced and a comment from one elderly gentleman has stuck in my mind all day. He introduced himself and mentioned he has many bleeds, and that the last time he had visited the treatment centre in Hanoi for treatment was 3 years ago, and pointed out that his health was improving.
After introductions, I was asked to give a presentation on the history of the Irish Haemophilia Society. They were very interested and asked many questions, and they were also interested in the roles of our staff and board which I was delighted to talk about. I pointed out that it is important to remember to take small steps and to remember that it has taken the I.H.S. many years to come this far. Fiona then spoke about chapter leader development, and the qualities needed to make a good chapter leader. I then did a presentation on governance and priority setting. During this presentation, I tried to bring them back down to basics and gave suggestions about the tools required to be a chapter leader or board member. I spoke about their priorities as chapter leaders and the tasks they should be looking at doing, encouraging them to outreach in their area to current and new members, and to look at strategies regarding an employment project. I also mentioned that education was also very important. We also agreed during this workshop to work with Dr. Mai on a formal task list or duties list, that these leaders can work off so that there is some sort of structure put in place. Fiona then spoke to the audience about being positive which was very useful.
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 and to share experiences, they exercise, they meet to sing to keep themselves positive, and they all have exchanged phone numbers. They are a very strong group, with a very good chapter leader Mr. Hau who is a young man with haemophilia in his thirties, who is married with two children. Over the last year, they have been 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 at IT. 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 today that this is achievable, they are going in the right direction. I was very impressed today 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 and gave presentations I perhaps thought that some of our information and advice may have been just that little bit early. However, they clearly listened to everything we said during our last trip, as a lot of suggestions we made are already happening.
Following the morning workshops, we had a delicious lunch made up of catfish, crab soup, vegetables and rice which was really tasty. After lunch, we visited the homes of 3 families in the area including the home of chapter leader Mr. Hau who has a small shop where he works at repairing phones. The families were so hospitable and so proud to be visited by Dr. Mai and some of her team and ourselves.
On our way back in the bus Fiona and myself spoke about how touched we were today by these people and the work they are doing. They are passionate, organised, and they will do everything they can to improve the life of people with haemophilia in their province and country.
Debbie Greene

Day 4 – A vist to the Irish Ambassador
Our day started off with an official meeting with the Irish Ambassador, Mr. Damien Cole and his Deputy Mr. Garvin Mc Cann in the Irish Embassy. We were joined by Dr Van and Ms Minh from the National Institute of Haematology and Blood Transfusion Center.  It was a great opportunity to update the Ambassador on our Twinning Programme and discuss the progress being made by the Vietnamese Society, I must say not only Debbie and I but also the Ambassador and his deputy are impressed and encouraged by the fantastic and speedy progress that all in the Vietnamese Society are making.
Next up was lunch with Professor Tri and his team in the hospital – where Professor Tri kindly pre-ordered some European food for the fussy Irish eaters!!
The afternoon began with a workshop on Governance and prioritising activities and plans for the future. With 10 leaders in attendance from the VSCBD organisation – various chapter leaders from several provinces, volunteer leaders and a member of the executive board and also some key staff from the haemophilia centre, the session stirred up some interesting discussions and ideas about the future plans of the Society and its various chapters. Debbie discussed the importance of consistent contact, reporting and guidance between the Executive Board and the various chapters. I then discussed the various characteristics and qualities that the leaders which are nominated should possess. Again throughout this session, it was clear that there were some excellent voices and leaders in the room, who are passionate and ready to make a difference for people with haemophilia in Vietnam. The most enjoyable part of these workshops is, for me, the opportunity to see how determined all of the people involved (doctors, volunteers and people with haemophilia) are to make a difference.
Fiona Brennan

Day 3 – Chopsticks and Scooters! 
One year later Hanoi doesn’t seem to have changed – you still don’t look at the oncoming traffic when crossing the road (against all the safe cross codes!!) and you still pick up peanuts with chopsticks but when we sat down for our first official meeting with the staff and volunteers of VSCBD it seems so much has changed!!! The staff and volunteers in the Society are going from strength to strength. After our meeting with the Directors of the NIBHT, Professor Tri, Dr Kanh and Dr Van we went to the wards to give some small gifts to the in – patients. There are currently 30 in – patients at the moment and everyone is in high spirits (despite the searing heat!!!!) as we meet with them. After a game of Connect 4 (which I lost), it’s down to business. They show us a picture presentation of all of the activities they have organised since our last trip in Hanoi. During the year they held various events with over 200 volunteers spreading the word about haemophilia and the Society which included educational sessions and fun activities. We discussed ways to get more families involved in these days and the difficulties were quite clear – Hanoi, due to the size of Vietnam, can be a long distance for people to travel and financially it can be a huge burden also. Along with these events, there are also several peer support groups that have been set up since our last visit – a mothers and fathers group, a group for young people with haemophilia and a group for older men with haemophilia. These groups of approximately 15 members in each, meet as often as possible and the members have found it a great support.  They really are doing a fantastic job.
In the afternoon, it was time for a marathon session on every aspect of volunteering!! We started the workshop with each person telling the group where they were from and what their connection to haemophilia is. Throughout the workshop we discussed the role and importance of a volunteer co-ordinator, the tasks volunteers could complete in the Society and their individual chapters such as helping children with school work they have missed through illness, career advice and facilitating peer support. All 35 volunteers were then separated into their respective groups and we discussed the main needs of members in their provinces and what the volunteers can do. It was a very informative part of the session with each of the groups reaching similar conclusions the need of very practical help and support to their members in their local areas. I think the session gave the volunteers and chapter leaders a focus for future plans and activities.
Following the volunteer session it was time for a delicious dinner which Hanoi never seems to fail on!!
I am looking forward to tomorrow already!!
Fiona Brennan