A lesson in priorities

Volunteering in haemophilia in India

PENNY MCCARTHY

Penny McCarthy is Clinical Nurse Consultant at the Ronald Sawers Haemophilia Centre, The Alfred hospital, Melbourne

In 2013 Subbi (Sulochana B) was awarded an International Hemophilia Training Centre (IHTC) fellowship from the World Federation of Hemophilia (WFH) to the Ronald Sawers Haemophilia Centre at The Alfred in Melbourne for haemophilia nursing experience.

From the outset the team at The Alfred knew Subbi was an amazing character. She is a very well educated nurse; a Professor of Nursing working as a full time academic at Manipal University in India. To our surprise we learned that she volunteers her time in haemophilia care!

HAEMOPHILIA CARE IN MANIPAL

Subbi is the haemophilia nurse co-ordinator at the Hemophilia Society, Manipal (MHS), which is a registered chapter of the Hemophilia Foundation India, New Delhi and affiliated to the WFH. The MHS functions from Kasturba Hospital, Manipal, Manipal University (www.manipal.edu), Karnataka, India. The Manipal University supports the MHS in its various activities for the care of patients with haemophilia and other bleeding disorders.

Each year since her return to India Subbi has invited me to speak at a workshop for nurses and to participate in the family camp which was being run by the MHS. I finally was able to attend in April 2016.

What an experience! It took 22 hours to travel there, with three plane trips and a long car drive.

I was very fortunate to be travelling with Tim Marchinson and his team Ben and Ash from Purple Soup, an Australian-based adventure therapy company who had also attended the family camp at their own expense as volunteers.

Manipal University is a private institution with fee-paying students. It is well respected and it is enormous: it has 25,000 students living on campus. It also has a couple of associated teaching hospitals, one being Kasturba Hospital. One paediatric ward we visited had 120 children plus a parent or two. They were cared for in one large room, but remarkably it was really quiet – until the Purple Soup team entered and had pirate sword fights with every child!

I was very impressed by the level of care the fee paying patients received. I enquired about what happens if they can’t pay and was told, “Don’t worry! We still care for them.”

Subbi and Dr Annamma Kurien do an amazing job to provide haemophilia care. Dr Kurien, a medical pathologist and academic at the University, is also the President of the MHS and dedicates a lot of her time to haemophilia care. They are backed up by the local hospital staff including a paediatrician. The nearest haematologist is an hour and a half away. The Haemophilia Treatment Centre appears virtual: it is actually a mobile phone that runs hot 24 hours a day. Subbi takes the call from a patient or a hospital doctor and advises them which hospitals currently have factor available.

HAEMOPHILIA WORKSHOP AND FAMILY CAMP

In addition to her regular teaching commitments, Subbi organised a hands-on workshop for 30 nurses working with patients with haemophilia from different hospitals. This was a substantial feat and received a lot of publicity: the media came and there was an article in the local newspaper. Subbi and Dr Kurien were dynamos: they ran the nurses workshop on Friday morning and then ran the family camp that started Friday afternoon and continued all weekend. Subbi had multiple roles over the weekend camp: she stayed overnight at the camp to provide haemophilia care, was the camp co-ordinator, the swimming pool life-saver, and swimming teacher – and the tour leader for the visitors! On the Monday morning we returned to the hospital and I gave a talk to about 150 nurses about the essentials of haemophilia care.

The team is incredibly dedicated to their volunteer work with haemophilia. They constantly think their way around barriers and use their knowledge and contacts from their academic work, for example, working with the Manipal University Innovation Centre to create jobs that people with haemophilia can do at home. There was very little funding for the camp so most things were donated. It was held in a school building which the hospital cleaners prepared. The hospital sent 100 mattresses and sheets which were set up in the class room. Caterers arrived with massive pots of very aromatic Indian food for each meal.

The camp was great fun, and we overcame the language barrier with lots of laughing, and hand waving, but we were grateful for the few interpreters we had. These were predominantly university students who volunteered for the camp.

These experiences make you reflect on the challenges faced in other countries. I was so humbled during the opening welcome when Dr Kurien said to the families, “The camp offers you two days a year to put aside your troubles and let the children and adults with haemophilia play and participate. If they bleed we will take care of them.”

My visit to India was inspiring – a real lesson in priorities. As Subbi said to me, ‘We focus on what we have, not what we don’t have.’