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Uganda is no stranger to dealing with infectious and emerging diseases, with recent experiences of Ebola and HIV. This has contributed to Uganda’s ability to slow down the rate of infection from covid-19 so far, says Regina Mariam NamataKamoga.


Fear and panic gripped Uganda as images of patients in the world’s best hospitals in the developed world were seen struggling for life. The big question was, what would it be like in a resource limited setting with a weak healthcare system with financial, infrastructural, logistical and human resource challenges, which greatly affect access to, and quality of essential healthcare services? Furthermore, a setting coupled with patient level challenges, including a lack of trust in the healthcare system, poverty, low health literacy, poor access to healthcare and burden of communicable and non-communicable diseases.


The fear of worst case scenarios led to a rush to stockpile medicines, taking advantage of the weak regulatory system for medicines and lack of knowledge about medication safety issues and antimicrobial resistance. The warnings from the Pharmaceutical Society of Uganda (PSU) and National Drug Authority (NDA) fell on deaf ears. The measures taken by the Ugandan government intended to combat the spread of covid-19 totally disrupted the supply chain and healthcare service delivery system as all efforts were focused on covid-19. Patients with HIV/Aids, tuberculosis, malaria, cancer, hypertension, hepatitis B, epilepsy, sickle cell, as well as mental health, maternal or childhood conditions, faced an increased risk of complications and death due to an inability to access healthcare because of transport restrictions, curfew, poor ambulatory systems and fear of contracting the virus from healthcare settings


It is important to note that many people in Uganda earn daily wages, so an inability to work due to lockdown was another pandemic in itself. Many families not only found it difficult to afford healthcare costs and buy medicines, but also had nothing to eat. To the poor the hunger threat was even more real than covid-19. The government effort to distribute food was like a drop in the ocean. Scenes with people demonstrating to demand food were common. And cases of domestic based violence and crime escalated resulting in injury and loss of lives. Women and children were disproportionately affected.


Patients with chronic conditions, who rely on medication for their survival and improved quality of life, access, and adherence to medication has been a major problem as they were not able to get their refills, while others could not afford to buy medication due to a lack of income


Patients who had been newly diagnosed with cancer were not able to be initiated on treatment while others missed their three month refills for hormonal treatment. These delayed initiations and interruption of treatment cycles are resulting in increased stress, anxiety, disease progression, recurrence and premature death. Stigma and discrimination at family and community level was yet another issue to contend with as highlighted by Gertrude Nakigudde, the executive director of Uganda Women Cancer Association (UWOCASO).

People with epilepsy have also found that access to regular and affordable medication is a nightmare, affecting their adherence and leading to frequent seizures and inability to live normally. The stigma, discrimination, isolation at family, villages and community levels predisposed them to a state of hopelessness and poor mental health. Women and girls were most affected, as they also experienced sexual harassment, and rape due to their vulnerability, according to Sarah Nekesa, the executive director of Epilepsy Support Association Uganda (ESAU).

The founder and executive director of Sickle Cell Association (SAU), Ruth NankanjaMukiibi, also a sickle cell patient, describes the effects of the pandemic as enormous, citing increased cases due to anaemia, stress, and anxiety. She also said access to prophylactic medicines is a challenge with children particularly hit hard due to finances and inability to access health facilities. The lack of monitoring of patients, particularly those on hydroxyurea, presented a threat of complications.


Efforts by patient organisations to support patients

Covid-19 has affected the way organisations do their work particularly in mobilizing and engaging patients, family, and communities. Nevertheless, they have devised ways of reaching out to them. The members of Uganda Alliance of Patient Organisations (UAPO) and partners have advocated for access to healthcare for vulnerable patients. These efforts have led to easing of some restrictions to allow patients access care, provided healthcare, shelter to victims of domestic violence, raised awareness, counselling using electronic, print and social media, door to door food and drug distribution, transport to healthcare facilities, financial and in-kind support, as outlined below. Community Health And Information Network (CHAIN) worked with media and community health extension workers to emphasize hand hygiene using tippy taps and appealed to them to follow ministry of health covid-19 prevention guidelines. Through use of community loud speakers and moving from village to village, CHAIN reached over 20,000 community members in Bukomero and Busukumasubcounties. They also worked with the NDA to develop messages on medication safety to ensure they are appropriate and meet the needs of the patient.

Sickle Cell Association of Uganda (SAU), with support from The Dansk Handicap Forbud (DHF), was able to support 40 of the most vulnerable sickle cell patients through delivery of medicines using boda-boda (motor cyclists – a widely spread means of transport in Uganda used as one of cheap means of transport) and providing psychosocial support.


Epilepsy Support Association Uganda (ESAU) developed tailor-made, informative, educational and communicative materials about covid-19 for its members and disseminated it through text messages, radio sport messages and talk shows countrywide. It also partnered with 5 faith based health facilities in the West Nile region of Uganda and provided financial support, drugs, domestic items, face masks, hand sanitisers and gloves to 320 epilepsy patients.

Uganda Women Cancer Association (UWOCASO) reached out to its 200 members to find out how they were coping with the situation. Through text, telephone calls and social media they provided emotional support and online counselling. Some patients were supported to receive hormonal treatment, and other basic needs. They also coordinated with Uganda Cancer Institute (UCI) to transport patients who needed urgent attention.


The Infectious Diseases Clinic (IDC) at Mulago National Referral Hospital committed to ensure continued delivery of quality HIV care and treatment services to its patients. The clinic has succeeded in doing so by adhering to the Business Continuity Plan (BCP) which was put in place to guide the institute in maintaining its core responsibilities among which includes continuity of patient treatment and safety as well as staff safety and well-being.

The power of music cannot be overemphasised; it’s a common approach of reaching communities where many are illiterate. Many local artists including school children composed songs to raise awareness about covid-19.

In Uganda, covid-19 has reemphasised the importance and need to strengthen healthcare systems and prioritise health funding to enable the government be more prepared to respond to healthcare and system challenges. National health insurance should be a priority and the need for the government to fast track its implementation is crucial, if only to meet the Sustainable Development Goals (SDG) and Universal Health Coverage (UHC) targets.

Studies show several weaknesses in health care systems of low – medium countries therefore it might be a tall order to expect the system to respond to all the deficiencies immediately to achieve a functioning health care system, but the pandemic has accelerated the process to getting there.

Patient centered healthcare and patient safety

Even amidst a pandemic where patient safety is put to the test and during a bid to find a vaccine as soon as possible, it’s critical that patients are meaningfully engaged and high ethical standards governing clinical trials, particularly for vulnerable patients, in resource limited settings are applied. Patients need to seek healthcare with confidence, without fear of being harmed.


I believe patient empowerment, or lack of, has greatly contributed to how fast or slow the disease has spread in some of the different areas of the world.

With some measures, such as social distancing and quarantine deployed to counter the spread of the virus, patients still need access to medicine and health care. Empowerment of patients to self-manage chronic conditions, especially during such unusual times where they cannot access medical centres as often as possible, has been necessary while emphasising health literacy and telemedicine.

The pandemic has left a number of people with no jobs and heavy salary cuts as companies try to find ways to save on operational costs. It has emphasised the need to build life skills, such as saving to cater for basic need in times of a crisis. Most of the population are low income earners and live paycheck to paycheck, therefore there is need to empower them for the future.

Strengthening of community structures to effectively respond to covid-19, the role of community leaders including political, religious, cultural and community extension health workers in mobilising and engaging community members, is invaluable. The potential of community involvement in the covid-19 response has not been fully exploited.

Deliberate effort by key stakeholders to address the psychological needs of the population in order to mitigate the impact of mental health issues resulting from challenges of this epidemic is required and should be integrated in all aspects of the response.


Mariam Regina NamataKamoga, executive director, Community Health And Information Network (CHAIN), Uganda, and founding member, World Patients Alliance (WPA).

Resources:

This blog has been taken from British Medical Journal

https://blogs.bmj.com/bmj/2020/08/06/covid-19-patient-voices-and-perspectives-in-uganda/


By Penney Cowan, Founder and CEO American Chronic Pain Association


Sleep is the golden chain that ties health and our bodies together.” — Thomas Dekker


Sleep restores our body, allows us to function during the day, think clearly, and enjoy the moments.That sounds wonderful, but as many of us know, sleep and pain are strange bed fellows.It is just not easy getting a good night sleep when pain seems to interfere many of your nighttime hours---those hours where you lie alone hoping that sleep will come quickly, that your body will be able to finally let go of some of the pain and stress so thatyou can escape even if just for a few hours.But as hard as you may try, you just cannot seem to get a good night's sleep.For many sleep is next to impossible.


Sleep disturbance is a common problem for many people.Why is it that after a long day, exhausted as you might be, you can still not get a good night sleep.You even struggle with just falling asleep.When sleep does come, it seems short lived, with far too many moments where you wake up and struggle to get back to sleep.


When Sleep Isn't Sleep

Some people complain that they almost never sleep. When they are studied in sleep laboratories with all-night brain wave recordings, it is found that they actually sleep most of the night.However, their deep, slow-wave sleep is "contaminated" with brain waves characteristic of wakefulness.Thus, their sleep isn't restful, and they are often aware of being awake during the night.


Closed for Maintenance

Sleep isn’t merely a time when your body shuts off. While you rest, your brain stays busy, overseeing biological maintenance that keeps your body running in top condition, preparing you for the day ahead. Without enough hours of restorative sleep, you won’t be able to work, learn, create, and communicate at a level even close to your true potential.[1]

While many people struggle with sleep because of stress, such as the night before a trip, an exam, family issues, or a major event at work, the problem is usually short lived. But living with chronic pain or an ongoing stress like COVID-19 can contribute to a chronic sleep problem. So how much sleep do you really need?

How Much Is Enough?

According to the National Sleep Foundation, a young adult between 18 and 25 and adults up to the age of 64 need about the same amount of sleep: seven to nine hours on the average.But they could be well rested with between six to ten hours of sleep.Older adults need about seven to nine hours a sleep each night.However, it is important to be aware that there is no amount of sleep that is correct for everyone.Some may feel good after five hours while other need as much ten hours of sleep each night.


Melinda Smith, M.A., Lawrence Robinson, and Robert Segal, M.A., Sleep Needs, https://www.helpguide.org/articles/sleep/sleep-needs-get-the-sleep-you-need.htm If you aren't getting the amount of sleep you need, the first thing to do is talk to your health care professional to see if there is a physical reason for poor sleep, such as sleep apnea.

What Can Help?

If everything checks out,there are some things that you can do to help improve your sleep.Below are some helpful hints to improve your sleep.


Exercise: Vigorous physical exercise in the afternoon or early evening (NOT close to bedtime) has been shown to increase the portion of time spent in the deepest stages of sleep. So, you may not sleep more, but you will probably sleep better if you exercise.

Schedule: It is important to set the same time for bed every night and stick to it rigidly. It may help to prepare yourself for bed with a bedtime ritual, such as a bath, a glass of milk, etc. at the same time each night. Then you should set a wake-up time and stick to this, no matter how little you have slept the night before. It's very tempting to sleep in when you've been awake half the night before, but this only increase the chances that you won't sleep well the following night.

Naps: Usually naps increase the problem of insomnia. They should generally be avoided by those with insomnia until their sleep has become regulated. On the other hand, a 20-minute period of napping, meditation, relaxation exercises, etc. can help to reduce the tensions of the day for many and can enable them to resume tasks with renewed energy.

Stimulants: No coffee or tea after dinner. Also, until you're sure you are not affected by them, avoid chocolate (caffeine), decongestants, etc., in the evening.

Don't Fight It: Many people drive themselves into a near frenzy rolling and tossing all night in a futile effort to force themselves to sleep. Make a rule for yourself that if you aren't asleep after 15 minutes, you'll leave the room and do something restful. Knitting is good, as are such things as jigsaw puzzles, or quiet radio shows, but they should not be done in the bedroom. Mystery shows, true crime stories, and action movies are off limits. Not only do they cause adrenal in to flow, but they're hard to leave. Stay off your electronic devices, as well. When you begin to feel drowsy (no human is capable of staying awake forever) then return to bed. If you're still awake in 15 minutes, leave the room again.

Bedrooms Are for Sleeping: And loving. Nothing else. Using the room for paying bills, doing homework, arguing, etc., can prevent the room from being a comfortable refuge in which you can automatically relax.

Avoid Habituation Drugs:Avoid drugs such as tranquilizers and sleeping pills.Most people who have used these drugs for a period of time and in substantial amounts find that it takes as long as six months for their sleep to fully normalize.


1. If you have back trouble, lie on your back and place a small pillow under your knees to take the pressure off your back.

2. If you sleep on your side, allow the leg touching the mattress to extend up and slightly bend the other leg up toward your chest.

3. If you have neck problems, place a small pillow roll under your neck instead of using large bed pillows. This will keep your neck well positioned in relation to the rest of your spine.

4. Try to avoid sleeping on your stomach: it puts strain on your spine.

Of course, pain and pain flairs may always interfere with your sleep no matter what you do to improve it. If that is the case, you need to discuss with your health care professional what they might do to help you obtain a better night’s sleep.

Resources:

Sleep Foundation:https://www.sleepfoundation.org/

How to Sleep Better: https://www.helpguide.org/articles/sleep/getting-better-sleep.htm

Sleep Tips: https://www.mayoclinic.org/healthy-lifestyle/adult-health/in-depth/sleep/art-20048379

Sleep: What you need to know: https://my.clevelandclinic.org/health/articles/13268-sleep-what-you-need-to-know


American Chronic Pain Association : From Patient To Person: First Step, pp. 166-169, © 1987-2016 , ISBN # 0-9673878-3-3

Updated: Jun 20


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 (BMJ)https://blogs.bmj.com/bmj/2020/05/12/patients-in-pakistan-are-actively-participating-in-relief-activities-during-the-covid-19-pandemic/

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