2005 – Twinning Update


Twinning Update – May 2005

Margaret Dunne, Anne Duffy, Debbie Greene and Emma Sherlock travelled to Sarajevo on Thursday 26th May. The HABH AGM took place on Friday 27th and this was attended by about 50 members. The meeting was very well organised and very professional. For the first time they included a financial report with details of all their income and expenditure. The lady who was co-opted onto the Board in March was appointed officially.

There were three representatives from the Health Ministry there and one of them addressed the meeting and said how they had increased the amount of factor concentrates they are buying over the last number of years. The Director of University Hospital who we had met on an earlier visit also attended and his brother who is an orthopaedic surgeon in the University Hospital spoke about how they are planning to perform radio synovectomies in the near future. The doctor from nuclear medicine also spoke.

Prof. Haracic also spoke at the meeting. He was due to go to Rome to take up his appointment as Ambassador but there hasn’t been any decision as to who will take his place. There were a number of other doctors at the meeting including the Director of the paediatric clinic.

Ajdin and Almir had asked me to speak about the twinning and our expectations from it. Because of the number of Health Ministry people present I included in my presentation the importance of a designated HTC for Sarajevo and the need to continue to increase the amount of concentrate being purchased each year. I also reminded them that with the designation of a treatment centre there would be more assistance available from the WFH.

In preparation for the Summer Camp I had a number of meetings with Anne, Debbie and Emma. We prepared a programme which included art workshops and an educational quiz for the children with Anne. Anne found working through art and the quiz very good and the children really engaged with her.

Hydrotherapy and physiotherapy for the children and adults was organised with Emma and Debbie. This did not go exactly to plan but nevertheless it was successful as Emma had time to assess each child and to speak with the parents and children about the most beneficial exercises for them. Most of the children already have bad joints, particularly their knees. It is very upsetting to see their fathers pouring cold water over their knees at every opportunity.

There was time also for adults and parents workshops. The parents bought into this straight away but the adults with haemophilia were reluctant at first. We did however have a very good discussion and question and answer session. It didn’t go exactly as planned in the timetable but nevertheless we did get to have time with each group and a major benefit for the members was just being together.

A nurse from the Paediatric Clinic in Sarajevo attended the Summer Camp and took part in all of the sessions. She appeared to have a very good rapport with the children and their parents and most of the adults remember her from when they attended as children. A young woman who will act as interpreter for the children coming to Barretstown in September also took part in the Summer Camp and got to know the children. The nurse will also be in Barretstown as she is the accompanying person for other children attending.

We had sourced some donations of factor for the Summer Camp but there wasn’t sufficient to allow the children as much freedom as we would have liked. They are generally very quiet children anyway and were happy to sit and play with board games. They absolutely loved the swimming pool.

When we got back to Sarajevo we had some discussions with Ajdin and Almir and we agreed that I would write to all of the Doctors and Health Ministry people we met just to keep the pressure up with regard to the importance of having a HTC.

On Tuesday morning before we left for the airport we visited the Paediatric Clinic. We met with the Director who showed us around. We had a small gift for the young boy who suffered major complications following surgery. His Doctor came to meet us and told us that the child was going to die and that there was nothing else they could do for him. They asked if we wanted to see him and of course we declined. This was a terrible shock after all the intervention both from WFH and Barry White who had assisted by sourcing factor and advising the Doctor treating the child. Before we left the hospital the child passed away.

I was really sorry to have to leave so soon after the little boy died because they were so upset. I don’t think that they have ever had to deal with a situation like that before. If I had realised the funeral was going to be so soon, within two days, I may have stayed for that.

Overall, it was a successful visit. I will shortly follow up with letters to Health Ministry people and Doctors.