{"id":45656,"date":"2019-09-17T12:23:46","date_gmt":"2019-09-17T11:23:46","guid":{"rendered":"https:\/\/blogs.bmj.com\/bmj\/?p=45656"},"modified":"2019-09-17T12:39:11","modified_gmt":"2019-09-17T11:39:11","slug":"hussain-jafri-fighting-for-patient-safety-and-advocacy-in-pakistan","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/bmj\/2019\/09\/17\/hussain-jafri-fighting-for-patient-safety-and-advocacy-in-pakistan\/","title":{"rendered":"Hussain Jafri: Fighting for patient safety and advocacy in Pakistan"},"content":{"rendered":"

Partnership is key to bringing patient centred healthcare to Pakistan and the world, says Hussain Jafri
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\"\"My journey in patient safety and advocacy started in Pakistan in the early 1990s, when my grandfather developed Alzheimer\u2019s disease. As he began to develop symptoms, my family did not understand what he was going through. It appeared to us that he was behaving unexpectedly. Initially we thought he was joking, but then we realized that he was not well.\u00a0<\/span><\/p>\n

I took my grandfather to a doctor, and the doctor said he was fine and there was nothing wrong with him. Because we never questioned the doctor\u2019s opinion, the problem continued. I then took him to a specialist, but the specialist also said that there was nothing wrong.\u00a0<\/span><\/p>\n

It took more than two years to get a diagnosis and discover that he had Alzheimer\u2019s disease. I remember, I could not even pronounce the word Alzheimer\u2019s at that time. The doctor told me that there was no treatment for this disease, no information on how to look after my grandfather, and that he would die in four to five years. My family thought that I had made up the story about his disease to justify my grandfather\u2019s behavior since they did not believe there could be a disease for which there was no treatment or information available.\u00a0\u00a0<\/span><\/p>\n

During this time, while in college in Lahore, I started to do volunteer work for an organisation that was looking after patients with Thalassaemia. I saw that the patients were facing many problems and were not given the required standard of treatment and services. For example, up to 90 percent of the patients were either Hepatitis B, C or HIV positive because of the unsafe treatment provided to them. They were not surviving into their 20s whereas in western countries, patients with thalassaemia with good care, had a normal life expectancy.\u00a0\u00a0\u00a0<\/span><\/p>\n

Pakistan is the sixth most populous country in the world. The literacy rate is relatively low and human rights are low on the government\u2019s agenda. The public sector only provides 25% of healthcare, whereas the private sector caters to 75% of healthcare. There is minimal accountability in both the public and private sectors. There is a lot of quackery and any unqualified person can rent a room or shop and start treating people. All medicines are available over the counter and patients have no awareness of their rights.\u00a0<\/span><\/p>\n

This situation and my grandfather\u2019s personal experience led me to think about doing something to change the grave situation patients were facing in my country. During this time, I learned about the Alma Ata Declaration, which states that \u201cpeople have the right and duty to participate individually and collectively in the planning and implementation of their healthcare,\u201d something that was not being done in my country. Therefore, I started a group of patient advocates and initiated my fight for patients\u2019 rights in Pakistan.\u00a0<\/span><\/p>\n

In 2005, I was fortunate to be among the 21 patients who attended the inaugural <\/span>WHO Patients for Patient Safety<\/span><\/a> workshop in London. The meeting was eye opening. I met patient leaders from all over the world and learned from their experiences. We developed the London Declaration during this meeting, which aims to empower patients and families to build a global network, partnering with health professionals and policymakers to make healthcare services safer, more integrated, and more people centred.\u00a0<\/span><\/p>\n

When I came back to Pakistan after this meeting, it was like returning from the moon to earth. I did not know what to do or how to do it. There was no recognition of patient advocates in the country and the system did not recognize the need for patient engagement.\u00a0 Patients lacked advocacy skills and they feared they would be victimised if they spoke up. It took me a while before I figured out what to do and where to start.\u00a0<\/span><\/p>\n

The solution was \u201cpartnership.\u201d I realized that I could not do anything just on my own. I needed to make others partners so that they would be sympathetic toward the patients\u2019 cause. So I gathered a group of people that included people from all walks of life, including patients, medical professionals, NGOs, lawyers, people in the media, government officials and social workers. In 2007, we established the Pakistan Patients\u2019 Safety Initiative (PPSI) with the aim of promoting patient safety and advocacy in Pakistan. The objective of this initiative was to create awareness of patients\u2019 rights; carry out patient safety initiatives; and help patients through the medical legal system.\u00a0<\/span><\/p>\n

Over the succeeding years, PPSI has brought about change in the healthcare culture of Pakistan. Some of our accomplishments include:<\/span><\/p>\n