What prompted you to move to Tanzania?
Back in 2006, I was studying for a Masters in International Health and needed to do a thesis project. I found the International Network for Cancer Treatment and Research (INCTR) on a Google search and ended up going to their Ocean Road Cancer Institute in Dar es Salaam, Tanzania for two months to do a needs assessment and look at their clinical outcomes in the previous year.
The outcomes for children with cancer were stark with less than 5% long term survival. The staff in the hospital were fantastic though; easy to work with, desperate for any change that would improve the situation for children in their care and the only doctor there had an amazing knowledge of patients treated through the years, their case histories and their families. The staff just didn’t have access to professional development training and were at a loss to know how to make improvements.
The children and their families are amazing too – truly inspiring people that are so trusting and brave. I’ve had an 18 month old boy look into his mother’s face and hold his arm out to me to have a cannula inserted.
I suggested that we start by implementing plans to deal with fever and low haemoglobin. And incredibly we saw visible improvements to patient outcomes within the first week. We now have 500 children and the one year survival rates have improved dramatically from 10% to 55%.
What was the experience of a child with cancer in Tanzania as compared to Ireland in 2006?
The biggest difference between the experiences of a child with symptoms of cancer in Tanzania compared to Ireland is the speed of access to free health care. In Ireland, a child presenting to their GP with symptoms will be transferred into hospital under the care of a team of professionals within a week and a whole process swings into action.
In Tanzania, when a child in a rural village gets sick and parents need to access free care, they must first go to their village facility and then will need a letter of referral each time they transfer to the next largest facility in the town, district and region. By the time they finally get to us, four to eight months could have elapsed. The children presenting to us are desperately unwell with huge tumours. Parents have huge determination to do the best for their child but it is a real struggle to access free care, and for all those children who eventually end up in our facility getting the care they need, so many must fall by the wayside.
What were the biggest challenges you faced in trying to improve the survival rate of children with cancer in Tanzania?
When I arrived initially, there was no grand vision of what needed to be done. Everything we have achieved has been done in a step-by-step fashion. When I arrived, the facility was basically a shed with cockroaches and rats and three children to each bed. The first step was to get access to drugs and introduce policies for managing fever and blood.
The next step was to access a better facility. We were in a cancer hospital that really focused on radiotherapy and palliative care and was not operational on a 24 hour basis. After two years, we moved to the university hospital where we could access a far wider range of services like 24 hour staffing, medical imaging, piped oxygen and a pathology laboratory.
We starting working with the local Rotary organisation to raise funds for wards designed to children’s needs and to build for a hostel nearby. Many children lived on the ward between treatments because it was too far for them to travel home. It was important that they had access to more suitable living accommodation and supports while there. We set up the first school classroom under a tree but now the newly built hostel has a classroom for the children and a skills room for parents.
Improving staff training was our next step. Many of the doctors from Tanzania that train overseas do not return home to practice medicine. We set up a Master’s training programme in paediatric oncology for local doctors and brought in outstanding people from overseas to teach on the programme. The students do a three month placement in Our Lady’s Hospital for Sick Children in Crumlin, which is where I trained and worked. Now, the first two Masters’ students are in their second year of the programme.
We then looked at setting up a charity to support our fund raising efforts. The first was a local parents associated NGO, Tumaini la Maisha, which translates from Kiswahili as ‘Hope for Life’. An international charity, ‘The Impact Plan’ has now been registered in the United States and hopefully the European registration will follow. It has three aspects – volunteering, donating and an online shop. We have also been helped along the way by Irish charities like Gorta and Children in Crossfire.
Professional support has been another important development and colleagues in Crumlin and Beaumont have provided vital pathology services to really meet our needs. With the help of DHL, they can turn around results in 48 hours for us. Also mobile technology has transformed how we can work. I have been at a patient’s bed discussing x-ray results on WhatsApp with colleagues at home.
#NotBeyondUs is the tagline for World Cancer Day 2015. Does this resonate with the work you are doing?
Not beyond us is a fantastic approach to have. It would be so easy to say ‘what’s the point? – we’ll never make a difference’. But we have and we will. There are so many obstacles and up to now we have achieved a lot by going after the ‘low-hanging fruit’ first.
We still need to get children to us faster, and we need access to microbiology services and other infrastructural supports – like an intensive care unit and a ‘stat lab’. But, we have to keep in mind that this is not beyond us. It is not acceptable that more children die with cancer in Tanzania than in developed countries. Every child’s life is worth fighting for.
Some might believe that African parents are more accepting of death – it’s not true, it just happens more. They grieve as much as any parent who loses their child. These parents become involved in the nursing duties for their children on the wards. They may not have formal education but they have been trained how to collect urine samples, count bags of IV fluid and give oral antibiotic medication. They then become an invaluable resource to the nursing staff and also to the new parents coming onto wards.
What place does research have in the efforts to improve child cancer in Tanzania?
We probably have the largest children’s cancer centre in the world outside of India so there is huge potential for research – clinical and basic research. Other than file reviews to inform us about clinical outcomes, there really has been little to no research done here. The largest cohort we see are children with leukaemia but we have no idea about the genetics behind their disease. We also treat children with infection blindly as we have no access to a microbiology laboratory to determine sensitivities to antibiotics. We also see a large number of children with retinoblastoma and a large cohort with a skin disorder called Xeroderma pigmentosum, a rare genetic skin condition not seen in Ireland. We would be really keen for one of our students to work with a research group and learn how to investigate these conditions.
What will you be doing on World Cancer Day?
I will be back in Tanzania and we will be hosting a party on the ward for the children, their families and supporters to celebrate and launch some new artwork made especially to brighten the walls.
Dr Patricia Scanlon graduated from UCD Medicine in 1997 and received the 2014 UCD Alumni Award in recognition of her drive, leadership, commitment and desire to make a difference on society at home and abroad.
In conversation with Elaine Quinn, Communications Manager, UCD Conway