HAEMOPHILIA AWARENESS AND TRAINING PROGRAMME HATS LEVEL VIII – For Creation of Haemophilia Self Help Group,Conducted on: 11th September, 2013

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Number of Participants: 35

As an important objective in creating public awareness, under the preview of Dr. Naresh Gupta, Director Professor and Head, HDCC, Dept. Of Medicine, MAMC & LN Hospital, New Delhi on 11th September 2013 an initiative was launched at Haemophilia Day Care Centre to unite the haemophilic patients registered at the centre. The primary purpose was to identify a group of Haemophilic community who could take up issues as per the objectives proposed under “Haemophilia Self Help Group; H-SHG” (vide-infra).

Welcome and registration: All invitees were escorted to the seminar room at LN Hospital followed by a registration process. Patient and relatives were welcomed by Dr. Naresh Gupta and Dr. Sandeep Garg, Associate Professor, Dept. Of Medicine, MAMC & LN Hospital, New Delhi at the seminar auditorium by a warm speech explaining the objectives of H-SHG. The awareness programme conducted on this occasion was more people and patients oriented rather than an explanatory one, and while inviting the participants, a prior screening of the patient registry based on illiteracy status, availability to the centre, socio economic status, magnitude of community influence and most importantly to promotes the objectives of SHG was performed to make sure that the impact was influential in uniting and describing the goals of SHG.

A clinical introductory lecture was delivered by Dr. Sartaj Ali, Medical Officer, Lok Nayak Hospital, New Delhi to acknowledge the public and confirm that the terms Haemophilia and associated topics such as severity, factor replacement therapy, arthropathy and prenatal diagnosis, vaccinations for Hepatitis, FFP were synonymous with the audience.

A feedback form was provided along with the folder material which was being used to collect the audience’s view about HDCC and in which ways can the present treatment and comprehensive care could be modified to benefit the patients more.

Below is a list of patient and relative reviews as obtained through feedback forms, and sorted according to relativity and subject to consideration.

  1. A multi-specialty treatment facility was requested to be established which would consist of pediatrics, orthopedics, X-ray diagnosis all under one roof.
  2. Does in any way Vitamin D leads to improvement in reducing bleed episodes?
  3. Admission paper was requested to be made at HDCC itself in order to reduce the burden of waiting in the queue and receive immediate treatment.
  4. A more patient friendly atmosphere was to be established.
  5. Request to form a Haemophilic community on an internet domain or social networking sites was put forward, to make an interactive and modern approach to reach out the pateints registered at the centre and extending nationally.  
  6. To initiate a training program to teach factor infusion for self-administration and parent education, so as to help prophylaxis in regular livelihood and emergency situations.
  7. Few patients requested to avail AHF to them during examinations since the centre was located far away from their location.
  8. Regular physiotherapic session was requested to be advised to the patients.
  9. An identification card was demanded by the patients, which would allow medical practitioners to assess necessary information about the patient’s medical condition prior to treatment in emergency situations.
  10. Information on social and economic benefits for haemophilic patients were questioned.
  11. Questions on prenatal diagnosis and genetic counseling were most frequent.

Defining the objectives and Impact of Haemophilia on individual and nation: The topic covered the most essential part of the meeting where in Dr. Naresh Gupta, laid emphasis in defining the objectives of the SHG. A focus on the impact of haemophilia on the Indian scenario was also put forward to broaden the knowledge of the patients, in respect to the present treatment available across the country. Active participation was invited amongst the audience who would willingly dedicate time and desire to help others through effective communication for a group of certain haemophilic patients and convey their treatment related problems to the centre.   

 General outlooks of the objectives of SHG meet are listed below:

  1. Creating a Haemophilic self-help group to improve haemophilia services.
  2. Creating a group created for the same purpose shall bear the responsibility of conveying messages and spreading awareness on behalf of the centre and vice-versa between the hemophilia community.
  3. To take a wide view of the problems both medical & non-medical faced by the haemophilia community at large.
  4. To document the prevailing needs of the haemophilia community.
  5. Based on (iv) suggest local ways for ushering in the requisite changes for the betterment of services.
  6. Uniting and promoting interaction between the haemophilic patients both registered at the centre and indirectly reaching out the non-diagnosed patients in remote locations with insufficient knowledge about the disease.
  7. To assess the areas of improvement in the treatment and therapeutic procedures, reaching out the public and understanding their board issues to enhance the quality of care at the centre.

Based on the above interactions in this meeting and the previously collected knowledge combined together, the following persons with haemophilia shall constitute the 1st H-SHG.

List of PWH:

  1. Liaquat Ali
  2. Sagar Sharma
  3. Deepak Khilwani
  4. Vimarsh Gauba

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