How funders’ perspectives have helped to shape the field

a reflection

Paediatric Palliative Care Funders’ Meeting

Rome

1st December 2012

Outline

• Short Introduction to the Fund and the Palliative Care Initiative

• How much influence have funders had and is this a good thing?

• The Initiative and children’s palliative care• The importance of collaboration: the Funders’

Collaborative for Children, Malawi and the Waterloo Coalition

• How far are the funding lessons from Africa applicable globally?

The Fund

• The Diana Princess of Wales Memorial Fund is a spend-out foundation focused on social justice– The Palliative Care Initiative in sub-Saharan

Africa– Refugees and Asylum Seekers– Prison Reform and the ban of cluster

munitions

The Palliative Care Initiative

• Established 2001 with a focus on seven countries in sub-Saharan Africa

• Overall objective to establish palliative care as part of the continuum of care for people with HIV/AIDS, cancer and other life-limiting illnesses

• Areas of activity: education, support of pc organisations, advocacy, research, access to medicines

• Learning through evaluation

Funder Influence – a good thing?

• Yes! if the influence is the result of an evidence-based strategy

• Consciously sought to influence at policy and practical level with a strong belief that a strategic and outcome focused approach is best

• Why is this important?

- Better result for people requiring palliative care

- Sustainable change

Children’s Palliative Care

• Came later to this area of work

• Focus on education

• Chose to confine work to South Africa, Tanzania and Uganda for Children’s Beacon Centres and Kenya and Malawi for the Waterloo Coalition

Beacon Centres

• Three countries

• Establish as centres of excellence South Africa, Tanzania and Uganda

• Teach nationally and then regionally

PCI Children’s Palliative Care (CPC) Development

RESOURCE DEVELOPMENT2

CPC CURRICULA 1. Children’s Palliative Care (CPC) course

3 levels: Academic –

o Post Grad Diploma @ UCT (12 months) o Msc Research Training (24 months)

Vocational – o Certificate course (2 wks & 2 wks

placement or 8-10 months) E-learning –

o ICPCN bite-sized modules/ web learning resources

2. Training of Trainers (ToT) course OTHER CPC PUBLICATIONS

3. Paediatric Palliative Care Toolkit 4. Children’s Palliative Care in Africa Textbook 5. Training Package on home-based palliative

care for children under seven with HIV and their primary caregivers (Alan Stein, Oxford Uni)

E V A L U A T I O N

TBC

HPCA South Africa4

1 Champion P/T5

To train:

100 people - Yr 1 100 people - Yr 2 100 people – Yr 3

3 yr grant

TBC

Mildmay Uganda3

2 Champions5

To train:

60 people - Yr 1 60 people - Yr 2 30 people - Yr 3

3 yr grant

TBC

PASADA Tanzania3

2 Champions5

To train:

60 people - Yr 1 60 people - Yr 2 30 people - Yr 3

3 yr grant

BLUE = PCI DEVELOPMENT GREEN = PCI GRANT FUNDING

C O R E

G R O U

P1

DELIVER TRAINING IN OWN SETTINGS

ToT TRAINING AND DEVELOPMENT

OF CPC CENTRES

CPC TRAINING & CLINICAL EXCELLENCE CENTRES

Wider Links International Children’s Palliative Care Network6 * APCA Clinical Handbooks * Coalition on Children Affected by AIDS (ICPCN) (CCABA)

Teach CPC Course

TeachToT Course

Post Training Support

Resource Development

EXTERNAL

Review of current CPC in sub-Saharan

Africa (Baseline) –

Richard Harding, King’s

CPC training needs analysis & assessment of CPC training

course- Godfrey

Agupio, HAU

Overall Evaluator

(TBC)

INTERNAL

Ongoing Monitoring7 & Evaluation -

Justin Amery &

Joan Marston, HPCA

Resources

• The aim: ‘surround the child' with care, ensuring access to a range of high-quality services which will provide a foundation on which a child can thrive as a child and then as an adult. Its strategy is to strengthen local and district level systems, develop effective referral processes and promote improved collaboration at all levels, between projects and local civil society, regional districts and national government

The benefits of collaboration

“In my experience these kinds of initiatives are borne out of people who have the courage to look at familiar problems in a different way, and who can engage others to come on board. There were key individuals associated with each of the four funding agencies who instinctively knew that existing approaches to tackling HIV simply weren't delivering well enough. The conversation between these individuals evolved over a period of time until we had some sense of what a different approach might look like.” Richard Graham Comic Relief

The Waterloo Coalition

• In 2011, The Fund and The True Colours Trust each provided £300,000 towards a time limited initiative to significantly improve access to palliative care in Malawi and Kenya, to help strengthen government health systems to deliver sustainable palliative care.

• Other members of the Coalition: the African Palliative Care Association, the Global Access to Pain Relief Initiative, the International Children's Palliative Care Network and the Worldwide Palliative Care Alliance, each of whom provided technical support and expert advice.

• The Coalition funded the Kenya Hospice and Palliative Care Association (KEHPCA) and the Palliative Care Support Trust in Malawi led by Umodzi

Integration at local structural level

• “There are many different priorities for us and not many resources. Being shown what palliative care is and why this will help make services better is good. We need to know how palliative care can be offered without using a lot more resources and how doing this will help the local people.” (senior manager)

…and national level

•“STEP UP is helping us get things done faster. They are our friend. Instead of doing things slowly ourselves, STEP UP is helping us go quickly… We work together.” (government official from Malawi)

Advantages

• Potentially game-changing• Can take a more holistic approach which is

needed due to the complexity• Working at scale, gives an ability to influence

the bigger players• a wealth of knowledge, experience and contacts

within a collaborative that can make the whole greater than the sum of its parts

• it makes it easier for grantee organisations only having to deal with one body

Limitations

• Need to have good in-country partners

• Capacity

• Political and economic environment

• Cannot move more quickly in most areas than its partners

• May not always agree with partners on the strategy

Global Lessons of this approach

• Benefits of a strategic approach

• Need to work with existing structures

• Choose the right partners

• Look beyond pc for partnerships and allies

• Be tenacious and persistent

• Use your advantages as a funder

• Resource it

Thank you

www.theworkcontinues.org www.truecolourstrust.org.uk