Non communicable diseases (NCDs) and emergencies are an area that can take a back seat when humanitarian emergencies occur. During such emergencies, the focus is on rescue and management of injuries. Yet we also know that the toll from illness such as heart attacks, strokes, lung problems, cancer, diabetes, and kidney disease will dramatically rise in an emergency where stress is everywhere and access to health care and essential medicines becomes impossible. Attending the World Health Organisation (WHO) Executive Board meeting as a representative of the IAHPC gave me an opportunity to explore these issues. As part of the 154th Executive Board of WHO, I read a Constituency Statement on behalf of IAHPC as well as gave an Individual Statement under the Global Health and Peace Initiative.

Across all this is the need for pain control, such as for those with advancing cancer, for those with burns and crush injuries, for women delivering babies, for those at the end of their lives and who need to die with dignity. Underpinning this is holistic care for patients, families, and staff: this is core palliative care.  

Just stop for a minute and imagine being unwell in Gaza right now. There are almost NO strong painkillers like oral morphine available for ANYONE. So many factors lead to the lack of strong painkillers, but it is truly terrible and adds immeasurably to the suffering.

It was a privilege to attend the first WHO High Level Meeting on Non-Communicable Diseases in Humanitarian Emergencies in Copenhagen. So much work has gone into this, not least from the Eastern Mediterranean Office (EMRO) of WHO. It was heartening to see the member states attend (including Uganda) and many side events highlighting specific issues.

A recent report was shared which projected the risk of death and disease from NCDs in Gaza, but also infectious disease as the informal living arrangements are truly terrible. For example, right now in Gaza there is one toilet for 600 people and no clean water.

I took part in the Palliative Care side event and we had speakers either online or in the room from MSF, Vietnam, Haiti, Australia, Bangladesh, Sudan and Scotland (yours truly).

We are beginning to link more about NCD support with colleagues in Gaza, the Ministry of Health and in WHO. However, without a ceasefire the risk remains high for everyone and the ability to offer support is so limited. Oral morphine access is very complicated, but we hear so many stories of terrible pain and suffering which is heartbreaking and demoralising for staff, that we are keeping looking for ways to bridge this gap.

(Dr Mhoira Leng has since travelled with a Canadian team to explore these issues further and offer some clinical support, but most of all solidarity and presence. Another blog will be posted with further updates.) 

The last few weeks have been special for Muslims with Ramadan and for Christians with Easter. As we consider the time with its usual celebration, listen to what Suha, our wonderful oncology and palliative care pharmacist says.
“Like these days in previous years, we were racing to receive Ramadan with decorations, lanterns, and preparing Suhoor and Iftar menus throughout the month.
The streets of Khanyounis were full of people, decorations, crowds, and sounds of Ramadan welcoming songs.
Ramadan comes this year and we can't receive it in what befits it.”

The niece of Dr Amjad adds this, 
“We just wanted the most beautiful month of the year to come while we were in our homes preparing for it at this time. Five months … and our hopes, hearts, dreams, wishes, and finally our future are still destroyed. Thank you, world.”

Please continue to keep informed, be involved in any way you can, and pray. Here is a beautiful prayer from Professor Alison Phipps and a reply from her Gaza colleagues: 
     Bless the helplessness
     Bless the utter helplessness
     Bless the unutterable agony of utter helplessness 
     Bless the endlessness of the helplessness 
     Of a helplessness that still resists death daily
     Even as the helpless are dying for want of help

With the reply from Akram Sobhi Habeeb:
     Bless the help that never ends,
     Bless the endlessness of our friends
     Bless those who defy despair by planting hope,
     Bless the despair that ends with a strong rope,
     Bless those who pray for the end of the war,
     Bless those who keeps trying to open for us the door,
     Bless those who keep praying for our cute kids,
     Bless those who keep trying to make us well fed!

If you wish to donate to Cairdeas, then we are able to direct this to areas most in need.

Meet Cathy Namuto Magoola, the newest Cairdeas Scholar! Last month, Cathy began a one-year Advanced Diploma in Palliative Care programme with the Mulago School of Nursing and Midwifery in Kampala, Uganda. We are pleased to partner in Cathy’s nursing education and appreciate her role with PcERC at their unit in Kiruddu National Referral Hospital (KNRH). 

We first met Cathy nearly two years ago, in April 2022, as a nurse who was assigned by KNRH to work with the palliative care unit (PcERC, that is, Palliative care Education and Research Consortium). As a government nurse, Cathy did not have much prior experience in palliative care but was interested in the field and eager to learn. With the supervision of Sr. Nurse Florence Nalutaaya in PcERC, she soon was providing palliative care to the patients and families at the hospital. 

I have interacted with Cathy on many occasions, and from the beginning, she has always had a kind heart and listening ear. When we sat down for the interview (as the newest Cairdeas Scholar), midway Cathy quipped, “I’m talking too much!” Yet it is good to hear from Cathy and understand her approach to palliative care, with almost two years of on-the-job training with PcERC and new studies in her Advanced Diploma. 

“My mentors are nurse Florence and nurse Berna,” Cathy told me, “And they have not only been my mentors but my models in palliative care. I’ve learnt so much from them. Once, we had a patient who was really struggling on Level 5 in Kiruddu Hospital. His caregiver had abandoned him, and he had no one to help him get anything to eat. He was on oxygen, laying in bed, and too weak to go and do anything. 

She continued, “Nurse Berna found him one morning, trying to negotiate with another patient’s caregiver to help him eat, but that other carer was not taking the time to help! Berna stopped immediately and took time to feed the patient herself. Once he was strong enough to eat on his own, Berna worked with the hospital staff and with PcERC’s Comfort Fund to ensure the patient received food in a timely manner. He has already passed away, but he was very happy with Berna and appreciative of our palliative care team. I learned then that I have to create time for our patients.”

Her time now is stretched between working on the ward and attending classes for her Advanced Diploma in Palliative Care. “We attend class from Monday to Friday, and after the 5th of April, I will be going on a clinical placement for a month” Cathy told me. “Once we come back in May, there will be more classes and end of semester exams. I have been learning such amazing and new aspects of palliative care in class, from our course material to the experiences shared by my tutor and fellow students. These all help me be prepared for what is ahead of me.” 

What are the next steps for Cathy? In the immediate future, she is in an ethical issues course unit and is learning about will writing. “They are teaching us the foundation of palliative care, and we are each also preparing for a research project. I’ve identified my research topic to study on as ‘The Knowledge, Attitude, and Practices of Healthcare Workers in KNRH.’ I was very much interested in end of life care and researching that at my hospital, but they said that was done recently, so I am looking at the healthcare workers instead.”

“I have been very motivated to start this programme so I can be certified in prescribing [pain medication such as morphine]. Often I find one of our patients in pain and yet currently, in my level of nursing, I cannot prescribe anything for them. I have to go and find a doctor to write the prescription – and they are not always on the ward – while the patient waits in pain. With this Advanced Diploma in Palliative Care, I will be certified to prescribe, and be among some of the only nurse prescribers in Uganda.”

Cathy likewise hopes to continue her education in palliative care. “In the next 10 years, I would like to do my bachelor’s in nursing. One day I hope to go into management or tutorship, so I can teach fellow nurses.” When I asked her what she would like to teach, when she is a senior nurse, she quickly vouched for palliative care. “I want to stay in palliative care; the more that I work in this field, the more experience I get, the more I like it actually.”

“Many think that palliative care is for the dying,” Cathy told me. “But no, palliative care is aimed at improving the quality of life for the patient with life-limiting conditions. It needs to start from time of diagnosis; they shouldn’t wait to call in our palliative care unit when the patient is actively dying.” 

She’s communicated about palliative care recently to a surgeon who wasn’t yet ready to refer a patient with stomach cancer to palliative care. (The surgeon compiled, sending the patient and the family to the unit for support as they navigate cancer treatment.) She has been advocating for palliative care in KNRH and even in the other national referral hospital of Mulago. Cathy has well deserved her scholarship support from Cairdeas IPCT, which has supplemented her partial scholarship from the Palliative Care Association of Uganda (PCAU).

We are excited to see what is ahead for Cathy Namuto Magoola and with her work in palliative care, the Ugandan government hospitals will be a better place. 

This blog was submitted by Dr Nahla Gafer, our Cairdeas IPCT lead for palliative care in Sudan.

Almost a year ago, all our worries at the palliative care unit were how to establish home care in a systematic way as to be available to all patients nearing the last phase of their lives. The palliative care unit was formed of volunteers working at the main oncology hospital in the country.  The unit had (by then) completed 13 years since its initiation and had established an outpatient clinic with > 50 patients coming twice a week, in addition to the inpatients and the home care visits.

No one had expected a war, and our world was turned upside down.  I was worried about my colleagues, family, and friends but I was more worried about my patients. GA is a 35-year-old lady with a devastating vulval tumor. She cannot sit straight; in public transport she needs to lie on her side. Her pain was controlled by 6 tablets of 15 mg of morphine every 4 hours. We reached a point of convincing her to try a mild chemotherapeutic agent, after her last chemotherapy treatment, which was 2 years ago, and during which she had severe side effects, and was very reluctant to go back to chemotherapy. At last, we had a promise from her to try this mild chemotherapy after Eid. Then the war came.

AK had multiple ulcers from his squamous cell carcinoma, now running havoc all over his face, neck, back, limbs, etc. It did not help at all that he was albino, and my role was not only to find alternative ways to reduce the disfiguring masses and control the oozing and pain, but also to support him, and help tackle his psychological and social issues. OA is a lovely girl of 12, being informed by her attending physician, that nothing more can be done for her, her mother came to the unit seeking support. Building up her general condition and managing her pain, she was back on tract on active treatment with good response. She went on to speak on breast cancer month, to schoolgirls her age saying that the disease is a test to her faith, and that endurance brings one nearer to God. She thanked her family and treating physicians and really showed how one can really be so strong in spirit inside a weak body. For some months after the war, we lost contact.

Those are a few of almost 1,000 patients we were serving when the war broke out. The first priorities once the war started was to go to a safe area and ensure you have food. There are certain things that are already lost: your property, house, furniture, car, office, whatever you previously had, and your source of income. All forms of normal life, including work, stopped; the internet was so weak that a message sometimes takes a week to get through, and our local internet banking was not functioning. After this was sorted out, we were still so worried about our patients and about our colleagues.

The international community stood by us, and through donations, we were able to mobilise our colleagues and their family members outside of the hot conflict areas. A plan was set with Cairdeas International Palliative Care Trust (Cairdeas IPCT) and SANAD The Home Hospice Organization of Lebanon, to support the team members, some of whom had remained in war zone areas for 3 months. We then created “Sunshine in a Time of War,” a project by Cairdeas IPCT and SANAD The Home Hospice Organization of Lebanon aimed at supporting the palliative care unit. Even before the project was implemented, just the idea that you matter to someone and that someone is ready to help, gave the team members a lot of strength.

Sunshine in a Time of War holistically supported the palliative care team in Sudan. Psychological support to the members of our palliative care unit was very important, and we needed to provide debriefing and psychological first aid (PFA) training. This resulted in multiple contacts with team members from those from SANAD The Home Hospice Organization of Lebanon, who assessed how they were doing, providing debriefing and referral to local services for psychological support, as well as offered training through a video series posted on YouTube. Financial support to the team was also essential, which included providing for their phone and internet assess while working as well as supporting their salaries, organised by Cairdeas IPCT. [Many thanks to the generous supporters and friends of Cairdeas IPCT, who played a large role in supporting our palliative care colleagues in Sudan!]

During the Sunshine in a Time of War project, we faced several challenges. For example, no one could reach the hospital, where we had the computer with all patients’ data, their contacts and their family members contacts. We had to find another way to reach the patients as soon as possible and as many as possible. We collected all numbers we previously had in our smart phones, especially from the nurse who was had the habit of calling patients the second day following on their pain medications. The team members started reaching out to patients through telephone calls, WhatsApp and messenger text and voice messages. The main purpose was to check on their security, advise them with practical issues, as well as check on their disease and what to do about it.

More than 400 patients were reached, all documented nicely in ledgers kept in a make-shift office, in a remote city, in the north. We made sure to record the diagnosis, time of diagnosis, stage, previous anticancer treatment received, current complaints and current situation. The 10 years of work at the palliative care unit made our team very competent in palliative care and in oncology, especially in managing all problems: physical, psychological, social, and spiritual. At times, when there was need for further consultation, myself and another two doctors were reachable by WhatsApp. The palliative care unit were also able to contact SANAD The Home Hospice Organization of Lebanon, for psychological support for themselves, the patients and their families. While the palliative care unit no longer existed as a physical place, it turned into a virtual network connecting 400 patients with 8 Sudanese staff and 4 Lebanese staff, supported by Cairdeas IPCT and SANAD The Home Hospice Organization of Lebanon.

The amount of support we could give to the patients remotely is amazing. Even end-of-life care was conducted remotely. KA had liver metastasis that affected his liver function, but the family was not aware how terminal he was. A series of calls to the family was very helpful in exploring his current complaints, checking the signs of eminent death (examining the mouth ulcers, other complaints, etc.), explaining what was beneficial and what is not through family meetings conducted with the family members in a separate room, and the camera directed to the person who was speaking. Yes, it is possible to conduct virtual family meetings as well as virtually assessing symptoms, discussing with the patient, directing, and even prescribing medications. (Prescriptions were written, photographed, sent by WhatsApp to the family.)

We received several messages of thanks and gratitude from the patients and their family members. Yes, we helped them, they needed us, but also, we needed to preserve the work that we had started; we needed to help our patients. It is part of who we are. This way we are really healing, caring and humane health professionals.