In the last couple of years my sole objective has been to improve the standard of patient care at the PATHWEL Thalassaemia Centre. We have been able to create a computerized database of the clinical and demographic profile of thalassaemia patients under our treatment. This gave us a clear picture of the outcome of the treatment that these children had been getting. Unfortunately the picture is dismal. The main reasons for the poor outcome of treatment is the lack of adequate blood transfusions and iron chelation. In addition lack of awareness amongst the parents to get their children transfused before the haemoglobin falls to very low levels is also a contributing factor. The findings of this study were published in a well reputed medical journal and the paper has also been reproduced in this newsletter.
In the last couple of years we have been able to improve the lab by adding state of the art equipment including two cryofuges, four plasma extractors, two blood bag sealers, and a Sysmex blood cell counter. This equipment has enhanced our capability to prepare packed cells. A sine wave 5 KVA UPS has been installed to provide un-interrupted power supply for blood storage. To improve the standard of screening of blood for infectious diseases we have switched over from device testing to ELISA based method. Recently a vein probe has also been added for efficient venipuncture of the patients and the blood donors. We are in the process of installing a mini hormone analyzer for carrying out common investigations like serum ferritin etc.
Blood is the lifeline for patients of thalassaemia. We are trying our best to improve the numbers of blood camps and blood donations. We have also signed MOU with the Rawalpindi Institute of Cardiology for provision of their surplus blood to our centre.
Our efforts to provide free of cost medicines for iron chelation were severely hampered when a major donor for purchase of medicines withdrew its support. As a result we had no other choice but to rationalize the provision of medicines to our patients. At present we have limited this facility to the very young and the poor patients. Hopefully the facility would be restored soon.
In May 2017 the first annual general meeting (AGM) of the Society was held along with the International Thalassaemia Day celebrations. At the first AGM several amendments in the constitution were approved. The International thalassaemia day was also celebrated in May 2018. A large number of children, parents and people from all walks of life attended this function. For a change two patients of thalassaemia were the chief guests at this occasion. We also arranged a mini festival with several games and stalls for the children who thoroughly enjoyed the show.
It is mandatory for all nonprofit organizations working in Pakistan to get certification by Pakistan Centre for Philanthropy (PCP). This requires extensive evaluation of the working and documentation of every aspect of the organization. I took the initiative and compiled a comprehensive Official Handbook for the members and the employees of the Society that contains all types of policies, job descriptions, responsibilities and SOPs. I am pleased to inform that with the help of the members and the dedicated staff of the Society we obtained the PCP certification in Jun 2018. This also provided a strong basis for obtaining the Tax exemption from FBR that was granted in Sep 2018.
Thalassaemia House is a five story building that was built in 2006 due to the efforts of Late Gen Faheem Ahmed Khan. However, the building has mostly remained underutilized. Keeping in view the vacant space available we have rented out the first floor to the Haemophilia Patients Welfare Society (HPWS) who have established a Haemophilia Treatment Centre. Similarly the 2nd floor has been rented to a health care establishment named MEDASK that will run a diagnostic lab and pharmacy. The rental income from HPWS and MEDASK will be used to uplift the diagnostic and treatment facilities of PATHWEL thalassaemia patients.
Maj. Gen Suhaib Ahmed (R) HI[M]