Janet Mbuguni Director of TLM Member

Janet Mbuguni – Director of TLM & Member of Fo. CC

Tumaini La Maisha: Overview Tumaini La Maisha Tanzania is the first and only NGO dedicated to improving the wellbeing of children with cancer in Tanzania and directly supports the Children’s Cancer Ward at Muhimbili Hospital. Founded in November 2011 by a group of committed parents and supporters, Tumaini La Maisha has a range of activities to directly support children with cancer and their families, as well as creating awareness of children’s cancer across Tanzania. The primary focus of the organisation is: 1. To provide non-clinic support services directly to children with cancer and their families. 2. To advocate for improved access and quality of Paediatric Oncology Services across Tanzania 3. To increase awareness of cancer in Tanzania amongst communities to improve diagnosis and referral procedures.

Tumaini La Maisha: Overview Location: Muhimbili National Hospital- Dar es Salaam Tanzania Size: 13 staff and volunteers Areas of specialisation: Provide non-clinical support to children with cancer and to raise awareness of childhood cancer in Tanzania. Programmes: A hostel for long stay children and parents at the hospital Daily School programme for children in the hospital Therapeutic Play Therapy Programme Family support programmes Counselling services

Programmes Cont. . • IGA for carers/parents • Childhood Cancer awareness campaigns • Advocacy for improved access and quality of Paediatric Oncology Services across Tanzania. • Advocating for investment in Paediatric Oncology in Tanzania’s National Cancer Plan • Monitoring resource allocation to Paediatric Oncology in Tanzania

Life on the ward

Snapshot of Childhood Cancer in Tanzania • • • Government - Free Cancer treatment MNH – Public Paediatric Oncology ward (Free) MNH treats 350 -400 new cases per year (2012) BMC treats 200 new cases per year (2012) BMC - Cost Sharing – Paediatric Oncology beds TZ- Expected 2300 new cases each year Stakeholders-Ci. C, Mo. HSW, TLM & Fo. CC Linkage with hospitals –CCBRT/KCMC/Bugando/Mbeya/Baylor Survival level from 12% 2009 to 55% 2012 (MNH) Survival level -70% 2012 (BMC)

Challenges facing Childhood Cancer in Tanzania • • Lack of Childhood Cancer awareness Late presentation – 3 -6 months delay Lack of Specialist drugs, medicine & supplies Shortage of specialist staff (Nurses, H. A) No Tanzanian Paediatric Oncologist to date Limited non clinical facilities (family support) 3 months to 1 year stay in the hospital

PROGRAMMES 11 Bedrooms for 22 families. From Feb- Dec Accommodated more than 80 families

Classes Sungura Tembo

Outside space for playing

Ubunifu (Creativity) Room Income generating room/Recreation Room Outside Playground

Tumaini La Maisha : Results Achieved Outcome Results Achieved Children with cancer have participating in play therapy and education programmes 367 have accessed our education programme. 21 children are now able to speak standard Swahili and 2 children have passed primary education exams in flying colours with TLM assistance from education program Caregivers have been trained in income generating activities skills and Training in entrepreneurship skills 65 caregiver have participated in IGA, 6 families have been awarded with starter packs and have launched the activities as their income earning to their social life. Children and carers have received counselling 106 children and adults have attended regarding cancer as the disease and counselling classes. This has created treatment awareness of childhood cancer Children and their families have been accommodated at the Long Stay Houses 83 families accommodated. An improved wellbeing of children receiving cancer treatment lived at the house

Tumaini La Maisha : Results Achieved Outcome Results Achieved Life skills training for the caregiver 57 carer attended the training and received education on caring for the sick children Family support programme 32 families have been supported with transportation to go home/to come to Muhimbili

Programme Successes Tumaini La (what has worked well)Maisha: Programme Challenges Successes and Challenges (what has not worked well) Education Programme Unpredictable participation children in the programs due to the nature of treatment/medication Long stay hostel for the families Never been in fully capacity due to the nature of the families and treatment Income Generation Activities (training) Unpredictable participation of caregivers in the programme due to the nature of treatment Family support programme (transport) Unpredictable children conditions which changes all the time. Eg death, critical condition

Tumaini La Maisha: Inputs for future planning Partner ideas: How can you support our work: To increase awareness of cancer in Tanzania Assist in development of a strategy and link amongst communities to improve diagnosis age with Mo. HSW/NCCP/MCDGC/Mo. EVT and referral procedures. other partners TLM to become financial sustainable with multiple funding channels By building TLMs capacity and training to strengthen our systems (funding) Advocacy for improved access and quality of Guide TLM and linkage with policy makers, Paediatric Oncology Services across Tanzania partners and government Improve Income Generation Activities Assist sourcing markets for the products

Friends of Children with Cancer-Overview It is a network of friends to support the needs of the families affected by childhood cancer in Tanzania Key Objective 1. To raise awareness of childhood cancer in Tanzania 2. To support the work of TLM 3. To fundraise for the needs of children with cancer 4. To mobilize donation for the children with cancer 5. To follow up on all the children during and after treatment

Friends of Children with Cancer - Programmes • • • Chapter in Mwanza Chapter in Dar es Salaam Chapter in Mbeya Daily School for Cancer children in BMC Home visits Awareness raising campaigns

BMC - School Educational Programme Tembo & Sungura

Way Forward JOIN US TODAY To save lives & give hope to the families affected by childhood in Tanzania

Early Warning Signs of Childhood Cancer • Headaches/signs of haemorrhage(bleeding). • Eye changes – white pupil, new onset squint, loss of vision, swellings. • Lumps or swellings – especially if painless • Pallor or fatigue, weight loss • Fever – persistent and unexplained • Unusual - nausea or vomiting (especially early morning or worsening over days), changes in speech • Limb or bone pain, limp, bones breaking easily

QUESTIONS & ANSWERS-DISCUSSION

Janeth Mbuguni Cell: 0754 – 747999 Email: jmbuguni@tumainilamaisha. org walter@focc. or. tz