“With a dedicated staff and collaboration with partners, anyone, irrespective of which part of this world he comes from, can start a pediatric palliative care unit”
This is the message from Dr Patrick Mburugu, the clinic coordinator at Garissa paediatric palliative care unit.
Established in the year 2011, Garissa paediatric palliative care unit was the first paediatric palliative care unit in Kenya.
This came after a realization of a gap in palliative care as the existing palliative care units at the time were only for adults and the aging.
Dr Mburugu, who is a pediatrician, says with adequate trained staff with the help of Kenya Hospices and Palliative Care Association (KEHPCA), there was no need of him waiting any longer to establish a specialized unit for children. “I received a lot of support from the Garissa Hospital administration under the leadership of the medical superintendent.” Dr Mburugu says.
He says that they are proud to have a fully functional paediatric palliative care unit and they have established a comprehensive child friendly palliative care room decorated in bright colours with a television set, children toys and several childhood games.
Through KEHPCA, Dr Mburugu was able to get funding from Hospice Care Kenya to furnish the pediatric palliative care room with child friendly furniture as well as paint the room with colourful pictures that bring a smile to children they are taking care of.
This customized room, Dr Mburugu says, aims to set a friendly ambience to children admitted in the unit and give them a feeling of hope and homeliness.
Dr Mburugu says it is the responsibility of pediatricians to understand the importance of a child’s surrounding in the development of their social, emotional and intellectual abilities through play, interaction and sensory stimulation.
The paediatric palliative care clinic coordinator says that a child with a life limiting illness is no different from other children when it comes to such needs.
“We currently have 64 children on HIV care and 15 with life limiting illnesses under the watch of our paediatric palliative care providers.” Dr Mburugu says.
He adds that the unit is in the process of creating a children friendly playroom in the paediatric ward.
Garissa paediatric palliative care unit has collaborated with Haslinger Family Paediatric Palliative Care Center at Akron children Hospital in Ohio, USA. They hope to have a fruitful relationship as they learn from each other in the process.
“We will benefit from financial support, visits and exchange programs, mentorship as well as support in home visits from this partnership.
Dr Mburugu says they received a grant award from Hospice Care Kenya and they have done a grant proposal to True Colours as the paediatric palliative care unit endeavors to offer support to more children with life limiting illnesses.
Noting that there is an ever-increasing demand for paediatric palliative care, Dr Mburugu says they are working hard to improve client satisfaction adding that teamwork helps achieve this success.
Despite the enthusiasm Dr Mburugu has to improve paediatric palliative care services in Garissa, there are challenges they have had to deal with.
Weak linkages and referral systems have made them miss out on clients who ought to receive their services.
Though the unit faces a situation of inadequate finances, Dr Mburugu says there are other ways of motivating the staff to keep the services running at the best.
“Most of the dedicated doctors and nurses from the wards multitask or work in shifts to satisfy the demand in health care and palliative care.” This came after realization of the burnout that the staff was enduring that led to KEHPCA, APHIA PLUS and Hospice Care Kenya helping us come up with a complete solution of utilizing the integrated model of service delivery. Dr Mburugu says
He adds that the model has enabled staff to multi task to deliver a range of incorporated services, access grant funding, and KEHPCA has provided 25 staff members with additional training to enable them to become more fulfilled and involved with the work of the Paediatric Palliative Care Unit as well as adult palliative care, which is also provide at the hospital.
“We sometimes refer patients to Kenyatta Hospital for specialized attention but some of them never return to the unit and following up with them is a challenge.” He adds.
The palliative care unit has no problem with morphine as the Ministry of Medical Services currently provides the opiate drug to all Provincial hospitals in the country.
KEHPCA executive director, Dr Zipporah Ali, says they are working with the Ministry of Medical Services to get more morphine supply with hopes that it will eventually provide it to all hospitals and hospices countrywide.
“We need champions like Dr Mburugu to advocate and implement pediatric palliative care services across the country. Paediatric palliative care should be integrated into paediatric services across the country. Any child who needs palliative care services should be able to access it wherever they are. This is our vision. We have been working with the Kenya Paediatric Association as well as the University of Nairobi School Of Health Sciences to integrate pediatric palliative care into the post graduate training,” Dr Ali adds.