Tebello Malichaba Lepheane, the Palliative Care Nurse now based in the United Kingdom (UK) has always had a heart to alleviate Basotho from ‘life limiting and life-threatening’ diseases. Having cut teeth in a nursing career in Lesotho has provided her with a unique perspective and allowed her to recognize the disparities in patient care between the two kingdoms.
Her compassion for chronic patients and their families continued to grow, and she could not ignore the stark care gap that existed in Lesotho. This realization triggered her to take action in her own way.
She then vowed to bridge the care gap and alleviate the suffering experienced by chronic patients and their loved ones in Lesotho. Armed with her expertise in palliative care, she is determined to bring the same level of compassion and care she has witnessed and is practicing in the UK back to her homeland.
Our reporter, Thoboloko Ntšonyane, talks to her in this interview. Below is the excerpt of the interview.
Could you take us through your professional background in relation to palliative care and the work of your organization.
Our charitable organization is called Starlight Oasis of Hope Hospice (SOHH), we are registered in the United Kingdom and in the Kingdom of Lesotho with the aim to establish palliative care across our beloved Kingdom and provide quality care for patients with life limiting conditions such as cancer.
SOHH is established by a Mosotho for Basotho and we urge the nation to have that sense of ownership as this is an organization intended to serve any Mosotho with palliative care needs.
I felt the need in my heart 13 years ago but I was very scared by the vision. However, about seven years ago I was divinely given a strategy of how to go about this vision.
With all humility, respect and great appreciation I had great support from my family and close friends and I made a move to register the organization Starlight Palliative Care Services (SPCS) in 2017, which gave birth to Starlight Oasis of Hope Hospice (SOHH).
We are very grateful to our trustees across the two Kingdoms (UK and Lesotho) who are working tirelessly to ensure systems and policies are in place.
We are also encouraged by the support and pledges we receive from different individuals, organizations, government ministries, financial institutions, religious organizations, just to name a few. Their support will enable us to establish a physical presence on our land in Maqhaka and start serving patients and their families.
We continue to raise awareness and advocate for cancer patients within the country, regionally as well as internationally. Our services are anchored on four pillars: Advocacy, Education and training, Care and support and Treatment.
We are currently busy preparing for the virtual training for health care and social care professionals from all the 10 districts including the health institutions. The first batch will commence on July 11th and will run for 7 weeks after which Batch 2 will be for the same length of time.
Each batch will have 100 participants; doctors, educators/lecturers from various health institutions, nurses, pharmacists, social workers, spiritual counsellors, pastors etc. This is multi-professional training and a core fibre of palliative care.
Can you unpack the concept of palliative care? What does it entail?
Palliative care is a specialized care rendered to individuals with life limiting and life-threatening illnesses such as cancer. This care focuses on the person holistically, that is, taking care of their physical, spiritual, psychological and social needs.
Palliative care embraces multi-professionalism as it promotes various professionals to come around the table to discuss complex challenges of the patients and deliver a collaborative plan of care in one place. This will minimize the distress which patients often experience during their disease journey.
Palliative care promotes good pain management and also addresses other symptoms which are distressing to the patient.
One needs to be qualified in order to become a palliative care practitioner. However, due to limited numbers of people with such expertise, there is an ongoing decentralization of knowledge to empower health care professionals with the basics of palliative care hence Project ECHO is a great platform for us. So, our training theme is ‘Introduction to Palliative Care in Limited Resource Settings’.
How common is this phenomenon in Lesotho?
Palliative care is still a new concept in Lesotho. However, the awareness about this model of care is increasingly growing as SOHH continues to advocate nationally, regionally and internationally.
We are grateful to various media houses who have always been receptive and supportive of our initiative and sharing our messages to inform the public about this way of serving those we care for. Since 2017, we have been graced with many opportunities to share awareness campaigns about cancer, palliative and hospice care on various newspapers, radio stations and even on our national Television.
We also share awareness and updates about evidenced based practice on our website and social media handle e.g. Facebook page etc.
How do you prioritize and allocate limited resources when providing palliative care?
We are encouraged to maximize quality of care with limited resources and one way of doing that can be to utilize quality painkillers which are easy and cheaper to access such as liquid morphine which we so much need in the country to address the debilitating pains which cancer patients often experience.
We are working with relevant authorities and international bodies in order to improve access to essential medicines as recommended by the World Health Organization.
Speaking to patients and families in a culturally sensitive, clear and compassionate way does not need money but it is a skill which forms one of the great pillars of palliative care provision.
So, we can still provide quality care to patients and their families as long as we attend to their priorities which for some patients might be strong pain killers, to some can be mobility challenges or loss of income due to disease progression and not being able to work anymore.
Then what palliative care can do, will be to liaise with other departments and stakeholders in order to source timely support for the patients by applying good referral systems.
How do you ensure that patients and their families receive comprehensive support despite limited resources?
Good communication is the basis for good care. As health and social care professionals, we are urged to speak to patients and their families in a sensitive way, allowing them time to express their challenges and therefore be able to collectively prioritise their care in a holistic way.
The comprehensive care will include attending to the physical challenges such as pain, issues with wounds which may need dressings and also attend to the emotional, spiritual and social issues.
The role of palliative care workers should never be underestimated as they play such a big role in assessing the social needs of the patients and their families and ultimately attend to such challenges. Hence palliative care advocates for health services to have clinical social workers as well as counsellors.
Can you say enough is done to educate and empower patients, families, and local healthcare providers about palliative care in settings with limited resources?
The journey has already began to address these knowledge gaps. We are empowering healthcare and social care providers and will work with the academia community so Lesotho like other countries can have palliative care integrated in our existing health programs.
Our training program will be cascaded and stepped down to all relevant cadres in the care services including training village health care workers, patients and cancer survivors.
We are delighted and thankful for this fruitful collaboration with health and social care providers, relevant stakeholders and Ministries as well as cancer survivors and other cancer support organizations.
Please name the organisations that you will be collaborating with to provide the training.
Under our education and training pillar, one of our main goals is to empower the professionals with basics of palliative care so that their practice can respond to the complex challenges which cancer patients experience during their disease journey. Therefore, education and training is a tool to enable such change to happen. We are very grateful to our local, regional and international collaborators as we shall finally hold these virtual sessions training about 100 professionals in each batch. Face to face training will be held later in the year.
As a matter of fact, we have great support from our Ministry of Health and they are our main collaborator as we have had a working relationship with them evidenced by our Memorandum of Understanding since 2018.
We have also been privileged to collaborate with regional and global organizations in the palliative care arena. The Ministry of Social development is very much in support of this training as social workers are key in addressing the social distresses which patients and their loved ones often experience.
African Palliative Care Association (APCA);based in Uganda which it is an umbrella organization for our African continent, supports nations to establish and provide quality care for those with chronic and life limiting conditions.
PallCHASE (Palliative Care in Humanitarian Aid Situations and Emergencies);this is a global organization, based in the United Kingdom and we have their support through their office based in Kenya.
Palliative Care Works (PCW);this is a UK based organization with the mandate to train and mentor professionals in Low to middle income countries. They have supported many African and South East Asian countries to establish palliative care.
Project ECHO,which stands for ‘Extension of Community Healthcare Outcomes’, this is a USA based organization which has many hubs across the world. We have collaborated with their hub based in India.
Project ECHO is an innovative and new way of learning in healthcare. ECHO is an online tele-mentoring network which brings healthcare organizations together via video link, to form an online community, share best practice and support each other.
Project ECHO enables:
- Specialist training to be delivered free of charge
- Sessions can be attended by staff without having to leave their place of work
- Opportunity for staff to discuss challenging cases with specialist teams and other colleagues in similar organizations
- Improvement in the competency and confidence of staff in managing challenging situations
Our International Faculty members – are representatives from and working in Lesotho, South Africa, Rwanda, Kenya, Uganda, Nigeria, Angola, UK, Netherlands, US, and Canada.
What is the purpose of this Training? What does it aim to achieve?
These training is the first of its kind to gather so many health and social care professionals from all settings with a common goal to improve knowledge and awaken us to become more compassionate caregivers and apply dimension of “Total care” model as we care for the nation: by attending to their physical, psychological, spiritual and social care needs as we continue to observe multi professional approach.