Janet Mbuguni – Director of TLM & Member of FoCC.
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Janet Mbuguni – Director of TLM & Member of FoCC
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Transcript of Janet Mbuguni – Director of TLM & Member of FoCC.
Janet Mbuguni – Director of TLM & Member of FoCC
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 Tanzania3.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 hospitalDaily School programme for children in the hospitalTherapeutic Play Therapy ProgrammeFamily 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-CiC, MoHSW, TLM & FoCC• 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)• 3months to 1 year stay in the hospital
11 Bedrooms for 22 families.
From Feb- Dec Accommodated more
than 80 families
PROGRAMMES
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 2children 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 regarding cancer as the disease and treatment
106 children and adults have attended counselling classes . This has created 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
Tumaini La Maisha: Successes and ChallengesProgramme Successes
(what has worked well)Programme 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 amongst communities to improve diagnosis and referral procedures.
Assist in development of a strategy and link age with MoHSW/NCCP/MCDGC/MoEVT and 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 Paediatric Oncology Services across Tanzania
Guide TLM and linkage with policy makers, 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 Objective1.To raise awareness of childhood cancer in Tanzania2.To support the work of TLM3.To fundraise for the needs of children with cancer 4. To mobilize donation for the children with cancer5. 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
