The way that the Pakistan government have collaborated with patient and community organisations during this pandemic sets a great example for other countries,
says Hussain Jafri
The covid-19 pandemic has affected billions of people around the globe and exposed limitations and deficiencies in all health systems. The impact has been particularly devastating in low and middle income countries due to relatively weak health infrastructures and fragile economies. Pakistan, falls into this group.
In 2019, the country was ranked 152 out of 189 on the Human Development Index. Health inequalities are high compared to the average in South Asian countries. The covid-19 pandemic has devastated the economy and the country’s health system is being hugely challenged. In response to the crisis, patient advocates and community organisations have come forward to help the government in a variety of ways including the following:
Telephone helplines: patient organisations have collaborated with different universities and other professional organisations to establish telephone helplines for patients and families during the ongoing lockdown. The objective of establishing these helplines is for patients and community members to call and seek psychological counselling and any other help they need during this time of stress and isolation. One example, is Alzheimer’s Pakistan, who together with with Government College University, has launched a nationwide helpline for people with Dementia and their family caregivers.
Social media campaigns and support groups: patient organisations have been very active on social media during the current pandemic and have set up campaigns to provide their communities with advice and guidance on how to cope with the current situation. Facebook and WhatsApp are actively being used to create awareness and provide ongoing updates on covid-19. Some patient organisations have formed WhatsApp support groups for patients and caregivers through which they are able to provide ongoing support.
Support for non-covid patients: as health systems focus almost exclusively on the prevention of covid-19 and the management of those affected, this is having a negative effect on other patients with non-covid related health problems. These people are facing great challenges for getting the care they need. An example of this is patients with beta thalassemia, an inherited anemia, who are facing serious obstacles to obtain the one or two monthly blood transfusions they usually require due to a decline in voluntary blood donations. The Thalassaemia Federation of Pakistan, the national umbrella organisation of thalassaemia charities, has set up an awareness and advocacy campaign through social, electronic and print media highlighting the shortage of blood for this group of patients. This campaign was extremely successful. The President of Pakistan and the Health Minister participated, and following meetings with the Thalassemia organisations, have taken steps to ensure the supply of fresh blood at public sector hospitals through a donation campaign run by the health department’s blood transfusion authority.
Development and dissemination of information: access to comprehensive, appropriate, and simplified information about the diagnosis, prevention, treatment and other services related to covid-19 is vital. But information developed by health professionals tends to be difficult for patients and the community to fully understand. Patient organisations in Pakistan have been actively involvedin the voluntary coproduction and dissemination of information. Their involvement has supported government and healthcare systems to convey accurate and understandable information to communities.
Support for patients with special needs: patients with disabilities and special needs are often ignored in times of humanitarian crisis like the current pandemic. Previous experience of dealing with emergency situations in Pakistan and elsewhere show that the health services tend to overlook their essential requirements. To counter this, the Pakistan Patient Safety Network has advocated for patients with special needs such as mental illness, disabilities, and other chronic conditions. As a result of this campaign, the health minister ordered that all patients with covid-19 disease should be fully assessed and their special needs recorded and responded to.
Distribution of food: the economic cost of covid-19 is huge and for a developing country like Pakistan this presents daunting problems. The country has been under lockdown for many weeks and most people are experiencing severe financial hardship. Those who are in informal employment and are paid on daily basis such as labourers, construction workers, carpenters, waiters, small vendors, shopkeepers, rikshaw and taxi drivers are the worst hit. Many have been unable to afford food. The Jahandad Society for Community Development is currently working with the City Government Lahore to establish a network of charity organisations to distribute food ration packs to daily wage earners. To date, this network has already distributed food rations to more than 90,000 families comprising of over 550,000 people. Some patient organisations, such as Alzheimer’s Pakistan, are providing food rations packs to needy patients in their own communities. Similar public and private networks, comprising of patients and community organisations and local governments, are established all over the country.
Free medicine: the economic downturn has also affected patients with chronic conditions as they are no longer able to pay for their medicines. Providing people with the medicines they need for free is a huge task, but patient organisations are playing their part again. For example, the Thalassaemia Society of Pakistan is providing free medicines and treatment to all the 3000 patients with Thalassaemics registered with their organization.
Corona relief tiger force: the Prime Minister, Imran Khan, has established a voluntary task force to assist the Pakistan government in providing food and essential commodities to the areas under strict lockdown. So far around one million people from all walks of life, including patient advocates, have joined this task force and are working alongside armed forces and civil administration to deliver people the food and other essential supplies they need. Despite being a low resourced country, Pakistan has so far been able to meet the challenge of the covid-19 pandemic. Reported death rates are low compared to many other countries. One reason for this may be due to the way that patient and community organisations have joined hands with the government during this crisis, and provides a great example of collaborative action which other countries can learn from.
Hussain Jafri is the founding Director and chair elect of World Patients’ Alliance. He is also the vice chair of the Advisory Group of the WHO PFPS program.
Reference: This blog has been taken from British Medical Journal