PIMS holds educational workshop for patients

The first of a series of six educational workshops for Haemophilia patients and their families was held at the Pakistan Institute of Medical Sciences (PIMS) here on Saturday.

Planned under the Hemophilia Education Project (HEP) launched in February this year, the workshops are being arranged in collaboration with the Haemophilia Centre of PIMS, the Pakistan Haemophilia Welfare Society (PHPWS) and the Novo Nordisk Hemophilia Foundation (NNHF).

The managing director of Pakistan Baitul Mal, Brigadier (r) Sarfraz Ahmad was the guest of honour at the workshop’s inaugural session, which was also attended by the executive director of PIMS Dr. Abdul Majeed Rajput; consultant haematologist and director of PIMS Haemophila Centre, Dr. Tahira Zafar, and a patient Fauzia Kausar, who shared her case history with an emphasis on the psycho-social challenges faced by her.

The workshop was facilitated by Yasmin Ehsan while Dr. Tahira Zafar and Dr. Nadeem Ikram acted as resource persons and mentors for the 50 plus participants.

“The themes for the workshops have been selected from various clinical problems faced by the haemophilic patients, particularly those dealing with psycho-social aspects of the disease, physiotherapy, dental and orthopaedic care, and bleeding disorders,” Dr. Tahira told this correspondent.

The HEP is focused on awareness raising and improved preventive care to reinforce the care offered by medical doctors. The strategy includes developing effective, simple-to-understand educational materials in local language, transfer of skills to patients and families for day-to-day home care and management of emergencies among patients.

The participants were divided into working groups, each of which was assigned a facilitator to invoke maximum dialogue. An Urdu booklet with simple instructions on home care was prepared for educational purposes. The participants read the booklet and discussed its contents for greater understanding. The second part of the session featured a practical demonstration by medical personnel on various home-based interventions for care such as preparing and giving factor concentrates, ice treatment for joint bleeds, and nasal care and treatment to interrupt gum bleeding.

The next session focused on soliciting views on the problems faced by participants during home care, as well as suggestions or remedial measures for management of patients within the family. The Visualisation in Participatory Planning (VIPP) methodology was used for maximum interaction, following which a coherent list of problems was formulated for consumption of health managers and policy makers.

In the end, an evaluation was carried out to make an assessment about the learning outcomes of the workshop. The participants demonstrated a marked difference in their initial knowledge base at the end of the workshop as well as about the materials received.

Earlier, in the plenary session, Brigadier (r) Sarfraz informed the gathering that the Baitul Mal spends Rs250 million on health alone and assured all-out support to haemophilic patients. He also promised to simplify the assistance procedure.

Dr. Rajput thanked Baitul Mal for facilitating the treatment of poor patients and pledged to buy medicines from chemists who give maximum benefit to such patients. He also appealed to the NGOs and philanthropists to participate in the cause. Dr. Rajput also shared details of the rehabilitation services provided to haemophilic patients by PIMS in collaboration with the PHPWS and NNHF.

Professor Dr. Tahira Zafar reflected on the services rendered by PHPWS and the need to educate patients and their families. She said Pakistan has about 10,000 to 15,000 haemophilic patients. Haemophilia is a lifelong bleeding disorder that prevents blood from clotting properly. People with haemophilia do not have enough clotting factor, a protein in blood that controls bleeding. The severity of haemophilia depends upon the amount of the clotting factor that is missing. A person with haemophilia does not bleed faster than anyone else but the bleeding may last longer. The main danger is uncontrolled internal bleeding that starts spontaneously or results from an injury.

The most common type of haemophilia is factor viii deficiency or haemophilia A. The second most common type is factor ix or haemophilia B. Of all registered patients in Pakistan, 80% suffer from haemophilia A. The cause is hereditary and mostly affects males who inherit it from their mothers. It rarely occurs in females or in those without a family history of the disease. The symptoms of disease are bruising and spontaneous bleeding, bleeding in joints with pain and swelling, blood in urine and stool, prolonged bleeding from cuts, tooth extraction and surgery.

Saturday’s workshop concluded with Dr. Rajput presenting shields to Brigedier (r) Sarfraz, Dr. Tahira Zafar, Dr. Waseem Khawaja, Dr. Humaira Qazi, Mr. Islam, Dr. Khalid, Professor Khalid Hassan and Dr. Nadeem Ikram in recognition of their services for humanity.