HAEMOPHILIA AWARENESS AND TRAINING PROGRAMME HATS LEVEL IX- Patients & Families,Conducted on: 12th September 2015

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Number of Participants: 169 Haemophilia awareness and training programme for patients and families was conducted on 12th September 2015 at Ahilya Bai College of Nursing (ABCON) and Maulana Azad Medical College (MAMC), New Delhi, India. After HaemoUtsav (annual Haemophilia Day celebration), this was a first kind of patient meet that exceeded our estimate for the number of haemophilia patients, their families, relatives and well-wishers. Audience welcome and registration started at 10:30 AM. The patients and their relatives were seated in the spacious auditorium of ABCON with programme schedule and haemophilia awareness information brochures. The main objective of this meetings was to felicitate the second group of selfinfusion trainees (SIT) who successfully completed their learning and practice modules. At the same time we felt it necessary to associate their parents and other patients from haemophilia community to make them aware of such training programs. This would not only create a self-infusion learning opportunity but will also boost their confidence and making them self-reliant. At 11:00 AM, Ms. Shikha welcomed all eminent faculties with flower bouquets followed by Saraswati Vandana (prayer for well-being) by the nursing team of ABCON. Dr. Naresh Gupta welcomed the audience with warm greetings. He thanked for the long association and cooperation shown by the Patients with Haemophilia (PWH) at our comprehensive Centre. Dr. Gupta introduced the Chief Guest on this occasion, the current Medical Superintendent (MS) of Lok Nayak Hospital (LNH), Dr. Y. K. Sarin, who inaugurated the ceremony. Unfortunately, due to some administrative meetings the MS had to leave early and therefore the felicitation of SIT’s was pre scheduled. Mr. Rajesh Tomar who had been heading the training programme called up individual trainees onto the podium. They were awarded by the MS and Dr. Gupta with completion certificates and a patient utility kit as a souvenir to help them take better care of themselves. The SIT members were asked to share their personal experience or any observed benefit gained after the SIT program, for which the replies were interesting. Munna Rai and Dipender aged about 13 years suffered from knee bleed and were taken to their local hospital for treatment. At the emergency they waited for 30 minute aching in pain due to severe patient load. It was the little Munna who requested the sister-in-charge to provide him anti-haemophilia factor (AHF) for administration. It sounded strange to the sister initially, but he assured that he is well competent to self-infuse the AHF and also to his other friend. The sister waited by his side to watch him infuse, and shocked to see that the infusion was near perfection and clean. Shivank’s mother shared after SIT, his son would come home and practice venous access on potato looking quite motivated and confident. A 56 year old PWH named Liaquat Ali expressed his overwhelming impression of such medical facilities and patient oriented training programme. He reminded of his childhood when he suffered tremendous difficulty to avail bleed with sparse knowledge among the practitioners. Deepak Khilwani, a young and enthusiastic PWH and also a member of the Self-help group (SHG) member revived the SHG activities. He spoke about the various programme under taken during the haemophilia and awareness-SHG meetings, where a PWH such as the secretary or other SHG members can present the collected problems on behalf of the groups of PWH from our Centre, may be related to patient care, physiotherapy, surgical procedures, institutional/ work place problems or family concerns. He also told them how SHG is a better method to directly communicate with specialist faculty and medical practitioners. Attending such meetings will allow an individual to share his knowledge and put aside his doubts or anxiety. He reminded the SHG slogan “Feeling free, scoring high”, before he left the stage. Over all it was a great experience to learn their everyday stories which also make you feel sad, but on the higher side it also proves the strong determination and effort of these patients and their family members who take a tough stand in life irrespective of their medical condition. The MS was touched by the programme and the participants. He inspired the PWH, that every successful person in this universe has faced immense pain, distress, failure, poverty or rejection but in the end all it matters is that are you still fighting? If yes, you are a winner and will prove one day. He requested the young PWh never lose hope and be optimistic in life. “Don’t let the spirit go” were his last words before leaving the session. Later part of the session consisted of presentation by the faculty members. The topics highlighted under these sections were kept simple and precise owing to the non-medical audience. Duration allotted for each presentation was 15 minutes. Dr. Ashok Kumar Mittal, Nodal-Officer for Haemophilia delivered a presentation on the preventive care in haemophilia, followed by a lecture on Home therapy in haemophilia by Dr. Sandeep Garg, Professor, Dept. of Medicine, MAMC. During open house hour various queries related to disease state and prevention were asked, which have been summarized below. 1. Munna Rai was worried about recurrent bleeds in his right knee and asked the way forward. 2. Jagdish a middle aged hindi translationist was curious to know that inspite of any transfusion or AHF administration except once, how did he develop inhibitors? 3. Kamlesh queried whether physiotherapy has any significant contribution in managing haemophilia on the long run? 4. Gaurav asked if there is a standard dose for all the haemophilics? Finally by lunch time the programme was wrapped up and Dr. Gupta delivered warm regards to everyone for their presence and participation in the programme. All the audience gathered for a group picture after which they were served with refreshments. It is always delightful to listen our feedback, which was supported by almost every PWH and committed to be a part of such programs in future.

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