Presentation to the Parliamentary Committee on Health CHOC Childhood Cancer Foundation South Africa 24 th August 2011.

Presentation to the Parliamentary Committee

on Health

CHOC Childhood Cancer Foundation South Africa

24th August 2011

AttendeesAttendeesFrom CHOCMzwandile Khanya

Parent, whose daughter died of Acute Myloid Leukaemia in 2005.

Chair of CHOC

Francois Peenz

Parent, whose daughter survived Acute Lymphoblastic Leukaemia

CEO of CHOC.

Julian Cutland

Parent, whose daughter survived Aplastic Anaemia.

Former Chair of CHOC;

Former Board Member (2001-8) of the International Confederation of Childhood Cancer Parent Organisations (ICCCPO).

AttendeesAttendeesSouth African Children’s Cancer Study Group (SACCSG)Prof Mariana Kruger

Executive Head of Paediatrics, Tygerberg Childrens Hospital

Continental President for Africa, International Society for Paediatric Oncology (SIOP)

Member of Executive Committee of SACCSG

Prof Alan Davidson

Head of Paediatric Oncology, Red Cross Children’s Hospital

Former Chair of SACCSG

Ms Tiisetso Tshehle

Social Worker

Presentation outlinePresentation outline

• Myths and facts

• About childhood cancer

• What CHOC contributes

• Cultural Challenges in Oncology

• Going forward

Myths and Facts - 1Myths and Facts - 1• Myth: Children don’t get cancer

• Facts: • Worldwide, 1 child in 600 gets cancer before

age 16• In SA, should have 2100 children diagnosed• Actual: ~700 pa reported• Thus > 1000 children go undiagnosed and

untreated

Myths and Facts - 2Myths and Facts - 2• Myth: Cancer is a death sentence

• Facts:

• With early diagnosis and correct treatment, ~75% of children can be cured, and lead full & normal lives.

• Survival rate in SA is lower, especially due to non-recognition and late diagnosis

Myths and Facts - 3Myths and Facts - 3• Myth: Cancer is a “white man’s illness”

• Facts:

• Cancer has no respect for ethnic origin, wealth or social status

• Children with cancer are fully representative of population demographics

About Childhood Cancer -1About Childhood Cancer -1

• Childhood cancers are different from adult ones– in types and frequency– not “lifestyle-related”– not preventable

• Different treatment protocols from adults

About Childhood Cancer -2About Childhood Cancer -2• Proven and accepted worldwide that

children must be treated:– in paediatric oncology units (POUs), – by paediatric oncologists– using paediatric protocols

• Treatment centres in major tertiary / academic hospitals

• SA has world class treatment centres, using international protocols– but struggle with limited resources

About Childhood Cancer -3About Childhood Cancer -3• Treatment consists of combination of

chemotherapy, radiation, surgery

• Treatment is intensive and long (1 – 3 years)– requires regular visits to treatment centre– places a wide range of demands on whole family

• time, financial, emotional, spiritual, information

– extra pressures when child is from “out of town”

• Important to treat the whole child, and not just the illness

About Childhood Cancer - 4About Childhood Cancer - 4• Teenagers and adolescents present

special issues– Proven that they do better on paediatric

protocols in paediatric units– Different social, psychological needs– Trend in many countries for specialist teenage

cancer units• Children should be nursed in wards suited for their

developmental needs and similar age

CHOC BackgroundCHOC Background• Traumatic event to have a child diagnosed

with a life threatening illness

• CHOC is an organisation of parents who have been through this

• Started in Jhb in 1979

• Became a national organisation in 2000– Now have divisions in all major centres

• Emphasis on working with medical staff

What CHOC contributes - 1What CHOC contributes - 1

Provide wide range of services for families

• Psychosocial & emotional support– From other parents; from volunteers– Now have our own social workers

• Funding for transport– To prevent abandonment of treatment for

financial reasons

What CHOC contributes - 2What CHOC contributes - 2

CHOC houses

• A “home away from home” for families from out of town

• For parents to stay when child is being treated, or in hospital

• CHOC owns 7 houses (5 from Danone project), and rent 2 more

What CHOC contributes - 3What CHOC contributes - 3

• Child-friendly wards– Hospitals are frightening places– Age-appropriate decorations, toys, games,

TVs, etc– Volunteers, to support children and parents

• Information– Understanding the illnesses, treatments– And how best to cope with things

What CHOC contributes - 4What CHOC contributes - 4Primary focus on public sector hospitals

• Medical equipment

• Support for doctors & nurses to attend conferences

• Improvements in the treatment centres (eg revamp at Bara)

• Funding staff to maintain childhood cancer registry since 2000

What CHOC contributes - 5What CHOC contributes - 5• Advocacy & awareness

– Medical and nursing; general public– Aim is early diagnosis and effective treatment– Warning Signs from SACCSG – lead to critical

improvement in early diagnosis

• Cooperation with other role-players– Government – NGOs

• Cancer-related; Hospices; Just Footprints; TGO• International connections (ICCCPO)

What CHOC doesn’t contributeWhat CHOC doesn’t contribute

• CHOC does not fund treatment– Responsibility of the Government and Medical

Aids

• But we do a lot of other things to support the children and families!– Major financial support for child to attend

treatment

Challenges of Culture in OncologyChallenges of Culture in Oncology• Cancer is increasing in prevalence and incidence• Most indigenous languages do not include a word

for Cancer• It affects patient’s notion of disease and response to

treatment• The use of tonic and herbs to strengthen resistance

(traditional healing)• Educational attainment and functional literacy (gold-

fish syndrome)• Relationship of culture to health is complex and still

poorly understood• Cancer is associated with social stigmatisation in

some cultures.

Overcoming the challengesOvercoming the challenges• Communication• Listening• Value diversity• Cultural self-assessment• Consciousness of dynamics inherent when

cultures interact• Institutionalise cultural knowledge• Develop programs and services that reflect an

understanding of diversity between and within cultures

• Acknowledge how fears and ignorance influence attitudes, beliefs and feelings.

Benefits of Cultural CompetenceBenefits of Cultural Competence

• Improved therapeutic outcome and relationship• Decline in disparities in medical care • Survival and improved well-being• Effective cross-cultural negotiation • BUT logic and human behaviour seldom walk

the same road (Bar-on; 2001:299).

Going forward 1: What is a child?Going forward 1: What is a child?• SA Constitution - <18 years of age

• Norm: upper age limit in hospitals is 12 yrs– So a child of 13 is often treated in an adult

ward!!– Most under 15 do end up in paediatric units

• Proven that teenagers do better on paediatric protocols, in paediatric units

• All children up to 16 at least treated in paediatric units – Need adolescent units

2: Funding of Childhood Cancer2: Funding of Childhood Cancer• Not all provinces have treatment centres

– Some specialist treatments only done at one centre

• Tertiary grants to provinces to fund various things, including cancer

• In theory, funds paid to province / hospital which provides treatment

• In practice, it doesn’t work

• International patients also a problem

3: National Cancer Control Plan3: National Cancer Control Plan& Policies for Childhood Cancer& Policies for Childhood Cancer

• Move to make cancer a “reportable illness” is a very positive step– No national statistics for cancer since 2000– SACCSG childhood cancer registry – 1987

till current (incomplete data but available)

3: National Cancer Control Plan3: National Cancer Control Plan& Policies for Childhood Cancer& Policies for Childhood Cancer

• “Call for Action” from survivors (May 11)– Burden of cancer not well recognised

• Priority to produce coherent plan (NCCP)

• Policy for childhood cancer must be part of the NCCP

4: UN Summit on NCDs4: UN Summit on NCDs

• Only illness prioritised by UN is HIV/AIDS– Implications on international funding

• Summit on Non-communicable diseases– UN. New York, Sept 2011

• Hope to have cancer as one of illnesses “recognised” by UN as priority– Including childhood cancer

5: Awareness of Childhood 5: Awareness of Childhood CancerCancer

• Lack of knowledge in medical and nursing professions

• Many cases not recognised, or only at advanced stages

• Need to create awareness at primary care level, and up referral chain

• Incorporate childhood cancer into IMCI process (Integrated Management of Childhood Illnesses)

6: Hospital Schools6: Hospital Schools• All children have a right to education

• Children who are hospitalised for a long period lose out on their schooling

• Some hospitals provide good schools in the hospital

• But many have nothing, or of poor quality

• Responsibility of Dept of Education, but not happening well

Concluding remarksConcluding remarks

• CHOC is established as the voice of children with cancer, and their families

• We focus on ensuring that all children are diagnosed, are treated effectively, and are provided with all the support they need.

• We work cooperatively with all role-players

Concluding remarksConcluding remarks

• There is still much to be done

• NEED PUBLIC-PRIVATE PARTNERSHIP between Health and Education Departments and CHOC

Thank you for the opportunity to Thank you for the opportunity to talk to the committeetalk to the committee