Number of Participants: 70
The third meeting of Q1-2015 was conducted for patient and families under the Haemophilia Training and Awareness Systems (HATS) on 31 March 2016 in Seminar Hall, Ward 32, 4th floor, New Medical Block, Lok Nayak Hospital, New Delhi 110002 under the preview of Dr. Naresh Gupta, Head, Haemophilia Centre. The audience consisted of patients with haemophilia (PWH), their family members and well-wishers. Registration process stared at 2:00 PM and awareness folders with information brochure were distributed.
Dr. Naresh Gupta, Director Professor and Head, Department of Medicine and Head, Haemophilia Centre welcomed the audience and thanked for their valuable presence in the awareness meeting conducted by HDCC.
Dr. Sunita Aggarwal, Professor, Department of Medicine, MAMC delivered the first session of haemophilia treatment options. Being a professor and one from the medicine faculty she is well aware the various issues faced by the PWH in day-to-day OPD and emergency hours. Patient concerns and questions often remian unanswered due to the huge patient load. Through this medium of awareness and training a number of questions in the heart of the patients and their family members are answered which also imprints a sense of support and confidence in them. She started with an introductory note on haemophilia, its cause, deficiency of clotting factors and previous family history. The most affected joints such as ankle in minors and knee in adults were the primary targets in haemophilia bleed with pain perception, swelling and restriction of movement was discussed. She advised the patients and their family members to rush for immediate treatment at a Haemophilia centre in such conditions. Utmost care has to be taken if the pain is felt in brain, throat or abdomen, which can be a sign of major and life-threatening bleed. PRICE regimen has to be strictly followed after such bleed and complete rest is necessary. Avoid intramuscular injection in PWH. The PWH should routinely undergo inhibitor testing every 3 months for effective haemophilia management.
Dr. Naresh Gupta addressed the clinical problems in haemophilia. He spoke on the various issues related to the overall well-being, comprehensive care, financial aspects of treatment, and psychosocial issues in workplace / education/marriage. He also advised all the patient to practice physiotherapy on routine basis to strengthen the muscles and minimize the chance of further bleeds. Vaccination of Hepatitis A/B was also advised for all PWH.
Sister Liji and Kavita later demonstrated the self-infusion process using our infusion training kit. In line with our self-infusion programme running its third batch now, we have always insisted our PWH to learn and practice AHF infusion, which not only make their reliable and self-confident but also is a major helping hand in emergency bleed situation well present far away from any haemophilia care centre. In this programme majority of the participants were new and unaware of such training programme conducted in our Haemophilia centre. The demonstration provided a better understanding of the infusion process in a relatively simpler manner. The patient also expressed their support to learn such technique, which also may prove beneficial for other who can purchase or avail AHF under employee beneficiary plan.
Lastly, Dr. Gupta ended the programme with a thanks note. All gathered for a group photograph and later refreshments were served.