Twinning update – December 2014
My visit started in Ho Chi Minh City with a visit to two men with severe haemophilia in their homes. Tuan Anh is 25 years of age and he has a 21 year old brother who is studying I.T at University. His brother uses crutches due to a very disabled leg and goes to college by motorbike which apparently he can just about manage. He has a damaged left knee which gives him a lot of pain and bleeds frequently. The family run a small shop selling t-shirts. Their home is nice by Vietnamese standards and has an upstairs. He has to live downstairs as he cannot manage the steep stair.
Next we visited Mr. Vuong who is 29 years of age who has severe haemophilia. He has a longstanding haematoma in his right thigh which has led to muscle damage. His right elbow bleeds constantly for the past 5 months, and he was in a sling. He is an analytical chemist but may have to give up work as he cannot write. His sister drops him to the company bus by motorbike and then collects him. He is from a province 100 kilometres away from Ho Chi Minh City. He moved to Ho Chi Minh City to work and be near the hospital. His sister moved also to look after him.
The following morning there were workshops organised in the hospital for volunteers. These were attended by about 20 people with haemophilia, parents and volunteers. Translation was by a mother of a 5 year old and by a young man. Currently they do some publications, some medical information meetings and some hospital visits. They were interested in doing a conference similar to the IHS. I suggested that they look at this for 2016 after setting some achievable actions for 2015 and deciding on the volunteer and funding requirements. If this is the plan, we can certainly help with organisation of the conference. There were lots of discussion about factor and options and also lot of questions about future and longer acting factor.
That afternoon I took a flight to Hanoi after a productive few days in Ho Chi Minh City.
The following morning I met Professor Tri for breakfast at 6am and we then drove to the institute and then to the city of Hung Yen to visit the Chapter there. We were also to look at some prospects for the employment project. We visited a small factory which makes wooden furniture and wooden religious carvings for temples. The latter is lighter work and more suitable for people with haemophilia. The owner, Mr. Ching has haemophilia. He employs 2 men who do not have haemophilia but he is training some people with haemophilia. The whole village works as a sort of commune so there is also training there (at the wood factory) on how to cut hair, repair phones and electrical work. The training is free and already one person with haemophilia has been trained to cut hair and 2 in phone repair. Professor Tri is keen on this group approach, which seems to be working well.
We then visited a family with two sons with haemophilia. Their father was in the army during the war and was then a coal miner. He died in 2007. Two months later, his older son with haemophilia died leaving a pregnant wife. The surviving son Nhien, who is aged 30 has haemophilia A. The family have 15 pairs of pigeons (bought for them by the Chapter) and need a further 25 for a viable income. They also mentioned they would like to buy a cow. Last year they had 100 chickens but they all got a disease and died.
We then met a large group of chapter members. There are 55 people with haemophilia in Hung Yen. They meet monthly and have 10 board members. Their leader Mr. Hue is very active. Seventy percent of people with haemophilia in Hung Yen are unemployed.
We had a broad discussion about the employment project and about treatment. Professor Tri talked about trying to get much lower co-payment for all blood diseases. (Currently, people with haemophilia have to pay 20% of the cost of their factor treatment). He also spoke about the need to start home treatment which will require advocacy with the insurance companies.
I met with Dr. Mai the following morning and we had a lengthy meeting to plan activities and discuss same before the board meeting the following day, as they also wanted to look at my suggestions for their 2015 action plan.
As previously reported treatment protocols have been approved by the Ministry for Health which include protocols for diagnosis, home treatment, low dose prophylaxis for those under 15 years and comprehensive care. The next step is to work with the insurance companies to allow home treatment. Currently only doctors and nurses are allowed to give IV injections.
They are in the process of producing 3 publications which are based on IHS publications which are dental care, genetics and von Willebrands disease and they plan for their first newsletter to be published in February 2015.
The home adaption project is being rolled out in Hanoi, Ho Chi Minh, Hai Phong and Hung Yen with the basic provisions being crutches, wheelchairs, handrails and chairs for over toilets. Many people with haemophilia do not like to appear disabled so they walk on bleeding joints instead of using crutches.
In relation to the employment project, a pilot group project is planned and if this works we could examine future options.
As most people now learn English at school they now feel that the proposed English classes’ project may not work, and are not required as a priority. Also people would have to travel too far and they are worried about attendance.
We also discussed an action plan for 2015 which include:
- Agreed publications
- Employment project rollout
- To send representatives to our AGM
- Preparation work for GAP (Global Alliance Project)
- Training in Ho Chi Ming
- A full day workshop in Hanoi with chapter leaders and meeting with Executive Board
- Advocacy work on lowering co-payment
On Friday, we had a meeting with the executive board which lasted 3 hours. Dr. Mai gave an overview of the results of our twinning programme for the last 4 years, which was impressive when put together. They credit the programme with:
- Giving them impetus for a new and better governance structure
- Establishing more chapters and groups
- Establishing peer groups
- Teaching them about planning and persevering with plans
- Teaching them how to obtain funding
- Importance of also working outside Hanoi
- Need to develop as a real national organisation as opposed to primarily Hanoi based activities
- Recruiting and using volunteers
We then spoke about the GAP project and I outlined in detail to the board the advantages to Vietnamese Haemophilia Association (VHA) if they are selected for GAP. The VHA Action Plan for 2015 was then presented. Several of our suggestions are included. We now have to work with them on timing and our joint actions for 2015. Following this, the Home Adaptation Project was formally signed by Professor Tri and I. This will now goe to the Ministry for Health.
It was time to leave. The hospitality and friendliness was again evident. My trip was productive, busy and so worthwhile. Until the next time…..
Brian O’Mahony, CEO