Abi Polus is the Senior Clinical Physiotherapist – Haemophilia, Ronald Sawers Haemophilia Centre, Alfred Health, Melbourne
The Ronald Sawers Haemophilia Centre (RSHC) at The Alfred Hospital, Victoria, is twinned with the National Institute of Haematology and Blood Transfusion Centre (NIHBT) in Hanoi, Vietnam.
In 2012 I visited NIHBT Hanoi, Vietnam, my first experience of the twinning program. A nurse and doctor had gone the previous year to establish a relationship with the Vietnamese team and work together in deciding what would be of benefit. It was an eye-opening experience for me.
On my first day I worked with the medical staff and physiotherapists from the northern half of Vietnam. I had been asked to tailor a program on the importance of physiotherapy in haemophilia. I gave lectures where I discussed the role of physiotherapy and the need to be active and exercise, even in the environment where very little, or no factor is available. In particular, I discussed the importance of rest after a bleed, and thereafter regaining range of motion, and strengthening muscles to support joints. These were concepts that many of the medical teams and physiotherapists were unaware of. Haemophilia is a haematological (blood) disease; in Australia we have been very fortunate to have relatively recent access to the specialists trained in musculoskeletal management of the manifestations of the disease. In some areas of the world this has not been identified or resourced at this stage. I have only been in my role since its inception in 2010 and I found it immensely humbling and rewarding to be able to pass on my experiences in setting up a service and the knowledge I have acquired.
I then ran two days of practical workshops where Vietnamese patients presented to me in front of an audience of around 50 physiotherapists, and I discussed and demonstrated how I would assess these patients to determine the musculoskeletal issues and determine the appropriate course of management. At that time very few patients with haemophilia ever got to see a physiotherapist, despite their extensive joint destruction. By providing information about what physiotherapists could offer patients, this was something that I hoped to change.
We also participated in a hospital ward round with the Vietnamese medical team and saw how they managed their haemophilia patients in hospital. My background of working in an adult hospital where access to factor replacement is widely available without cost to the patient meant I have not seen patients with such degrees of deformity at young ages. In Vietnam I saw young adults and children with large, swollen target joints and end-stage joint destruction were unable to move or walk. Many of the contractures (fixed bend) in hips and knees were irreversible and will cause permanent disability. It makes me appreciate how lucky we are to have the medical care that we have, in addition to the access that we have to factor replacement agents.
It also highlighted the difference that access to gait aids such as crutches, and early and gentle exercise can make. These patients can receive cryoprecipitate, but it is not as effective, and decisions may be made on what the patient can pay for. Lack of finances also restricted patients from presenting with bleeds that we would usually see early and there was little access to pain relief. Patients who had had huge bleeds and who needed crutches or wheelchairs did not have access to them and had to crawl, be carried, or walk on a very painful limb. I asked one child if he had crutches? “I do”, he told me proudly. “Big ones. I am just waiting until I grow into them!”
What I also found very sad was the presence of three patients on the ward who had spinal-cord injuries with irreversible paralysis of arms and legs, whilst seeking traditional Vietnamese treatments such as massage, cupping and acupuncture around the neck and back spinal cord. These treatments had caused them to bleed around and damage central nerve tissues permanently. It is largely avoidable (by abstaining from such treatments) but unfortunately, lack of knowledge has caused these catastrophic and irreversible injuries.
The people I saw did not complain of pain; they had the most amazing resilience and just got on with life. They really were inspirational.
In 2013, prior to our visit, we found out that our centres had won the ‘Hemophilia Treatment Centre Twins of the Year’ for 2012. This was a big honour and was very rewarding, especially coupled with returning and seeing how the Vietnamese team and our Centre had worked so well together and progressed forward.
At the end of 2013 I returned to Hanoi where I worked with the rehabilitation teams with further workshops and lectures. I also gave a talk to the patients and their families. It appeared that most of the patients had not previously had the opportunity to learn why haemophilia affects joint and muscles and the connection between bleeds and the musculoskeletal issues that they experience. For me the highlight of this trip was witnessing their immediate understanding, and being asked question after question that demonstrated they had understood and wanted to know more.
After two and a half days in Hanoi it had been arranged for us to go down to the south of Vietnam to Ho Chi Minh City (HCMC) as the patients and team in Hanoi had seen the benefits of working together with the twinning teams. As a result they planned to roll out the twinning program to the rest of the country, and we repeated some of the program in HCMC. The haemophilia patients in HCMC are in the general hospitals and a tour of the children’s and adult hospitals there was even more eye-opening than what we had seen at the NIHBT hospital in Hanoi. The overcrowding was apparent; patients were lined up, sometimes three to a bed with a central drip stand in the middle. It was swelteringly hot and humid, and mothers worriedly fanning listless babies. The problems with the prohibitive distances and travel costs that patients had to overcome to in order to present to hospitals in the first place, and the cost of treatment were also apparent.
Being part of the twinning program has been a very humbling experience. The Vietnamese doctors, physiotherapists and other members of the haemophilia team work extremely hard and are extremely resourceful with what they do have and were eager to discuss how to improve services. It has made me extremely thankful for the health system that we have here (warts and all!).
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