Palliative care Aims to achieve best possible quality of life: - - PDF document

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Joint Meeting of the Cross Party Groups in the Scottish Parliament

Dr Mhoira Leng Medical Director Cairdeas

Palliative Care and International Development

Wednesday 8th October 2008 Head of palliative care Mulago Hospital / Makerere University dr@mhoira.net www.cairdeas.org.uk

Palliative care

Aims to achieve best possible quality of life:

controlling pain and other symptoms helping patients and families cope with the

emotional upset and practical problems

helping people deal with spiritual questions helping people to live as actively as possible helping people to live as actively as possible supporting families and friends in their

bereavement

Scottish Partnership for Palliative Care

Appendix 1 - M Leng Presentation Joint Cross Party Group Meeting: Wednesday 8 October 2008

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Need

Palliative care for all individuals in

d i h i i need is an urgent humanitarian responsibility

World Health Assembly 2005

Palliative care and pain treatment is a

b i h i ht basic human right

World Hospice Day 2008

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Need

barriers to palliative care – non-availability of medicines – no opportunity for training or

support

– lack of financial resources

longstanding conflict /

– longstanding conflict /

natural disasters

Global inequality

half the world’s population live on less than

US$2 per day

developing countries have 66% of global

disease but only 5% of resources to control and combat disease

d t / / d

– doctors / nurses / drugs – equipment / funds

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Global health

World health day April 7th 2006

1.3 billion people lack basic health care 4 million shortfall in health care workers worst in sub-Saharan Africa

Chronic disease

38 million deaths per year main causes in 2005

– cardiovascular

30%

– cancer

13%

– chronic respiratory 7%

di b 2%

– diabetes

2%

major cause of morbidity

Lancet 2005; 366 chronic disease series

Appendix 1 - M Leng Presentation Joint Cross Party Group Meeting: Wednesday 8 October 2008

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Cancer

more than 10 million new cases of cancer

every year

6 million deaths 22 million with cancer diagnosis > 50% world cancer burden

in developing countries in developing countries

WHO 2003 World Cancer Report

HIV/AIDS

2007

33.2 million living with HIV disease

worldwide

2.5 million newly infected 2.1million died

huge differences in distribution and access to treatment and support

Appendix 1 - M Leng Presentation Joint Cross Party Group Meeting: Wednesday 8 October 2008

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Access to Morphine

WHO uses national morphine consumption

statistics as rough indicator of programmes to statistics as rough indicator of programmes to improve cancer pain relief

developing world

– 80% share population – 6% consumption oral morphine

global mean 6.58mg per capita

Africa 0 7 Europe 10 93

– Africa 0.7

Europe 10.93

– China 0.1

Latin America 5.66

– UK 19.9

USA 28.9

Access to morphine

less than 0.4% of the one

billion population of India have access to oral morphine

in most countries in Africa

NO-ONE can be given oral morphine; no matter how bad morphine; no matter how bad the pain

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Imagine….

dying in pain, because you have to ration your

pain medicines as your family does not have the pain medicines, as your family does not have the money to buy you any more…

having to walk three kilometres to the nearest

road, carrying a dying child because you don’t know what to do when she cries in pain…

dying of cancer in a place where there is no

palliative care facility within 800 kilometres palliative care facility within 800 kilometres…

patient experiences from Vellore

Palliative care

estimated 60% benefit from palliative care – but estimated 60% benefit from palliative care but

• nly a tiny minority receive this care

family needs even less well supported

• verall >100 million people could benefit from

basic palliative care

denial of human rights

g

Suffering at the end of – the state of the world Help the Hospices 2005

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Public Health Model

Policy Drug availability Education

s i t u a t

• u

t c

• m

Implementation

WHO model, Stjernsward and Foley i

• n

m e s

Palliative care

meeting the need for palliative care is an

enormous, yet vital task

major progress in past 50 years palliative care exists in every continent and

in more than 100 countries

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Palliative care

provision still patchy not available for most of those who need it not fully accepted by the medical profession

in most countries

not a core component of most national

health systems

How can we respond?

‘I still feel that the palliative care service we

have here is like a flickering candle, easy to snuff out but for the patients that we care for, it shines brightly.’

Esther in Sierra Leone

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Principles

partnership developing country leadership local ownership capacity building

– training and education

skills support and mentorship

– skills support and mentorship

sustainability

– cost-effective models – culturally appropriate models

UK government response

The UK contribution to increasing the

number of health workers in Africa through supporting education and training

Report of surveys undertaken in August

2008 in Africa and the UK

S Edj d Ni l C i Susana Edjang and Nigel Crisp 30th September 2008 follow up to Global Health Partnerships http://www.dfid.gov.uk/Pubs/files/ghp.pdf

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UK government response

ensure that the new International Health

Links Centre has a role and funding for coordinating support for education and training

identify priorities

k hi f d i h Af i

take this forward with one or more African

countries.

secure greater NHS and DFID support for

this work if it is to be truly effective

What is being achieved?

individuals networks partnerships government

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What is being achieved?

International Association for Hospice and

Palliative Care (IAHPC) Palliative Care (IAHPC)

– Travelling Scholars (78) – Travelling Fellows (47)

Hospice Information

– newsletter and online resource

Worldwide Palliative Care Alliance International Observatory for End of Life

Care

new training toolkit for palliative care in

resource limited settings

Appendix 1 - M Leng Presentation Joint Cross Party Group Meeting: Wednesday 8 October 2008

13 ‘training the trainers’ in chronic oedema

management; tutors Kenny Ferguson and Gillian Craig NHS Grampian

Master trainers course, Malawi; tutors Dr

Mhoira Leng, Prof Scott Murray, Dr Dorothy Logie from Scotland

Appendix 1 - M Leng Presentation Joint Cross Party Group Meeting: Wednesday 8 October 2008

14 palliative care in Uganda new Palliative Care Unit

– Mulago Hospital

M k U i it

– Makerere University

palliative care in Uganda new Palliative Care Unit

– Mulago Hospital

Appendix 1 - M Leng Presentation Joint Cross Party Group Meeting: Wednesday 8 October 2008

15 urban deprivation in Delhi challenge for palliative care state-wide training in Mizoram, India

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120 140

I benefited PERSONALLY ...

Humanitarian contribution Opportunity to share with international colleagues Spiritual growth

40 60 80 100

Spiritual growth Change in behaviour Renewed vocational commitment Developing self-awareness Opportunity to explore l

20 no little some good excellent

Benefit

values Personal motivation and inspiration Cross-cultural understanding Gaining a fresh perspective

100 120

I benefited PROFESSIONALLY ...

Demonstrating flexibility and adaptability Developing leadership skills

40 60 80

Gaining teaching experience Understanding different models of care Handling conflict Team understanding and working

20 no little some good excellent

Benefit

Sensitising to cultural impact

• f palliative care

Knowledge exchange Research ideas and

• pportunities

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80 90 100

I benefited PROFESSIONALLY ...

Better understanding of global inequalities Strategic thinking

30 40 50 60 70

Health education skills Developing skills in community development and empowerment Improving skills for caring for those from minority groups

10 20 no little some good excellent

Benefit

Achievement of appraisal goals Managing scarce and differing resources

80 90 100

My workplace benefited ...

Better awareness of culturally competent services A f i i

30 40 50 60 70

Awareness of positive news from developing world Development of ‘fair trade’ mentality and ethos Development of palliative care networks Cross cultural adeptness and

10 20 no little some good excellent

Benefit

Cross cultural adeptness and welcome Investment in human resources Appendix 1 - M Leng Presentation Joint Cross Party Group Meeting: Wednesday 8 October 2008

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Outcomes

Encourage international developments

– individuals – NHS Trusts – Hospices – Councils – NGO’s – Scottish government

Outcomes

Win-win

– staff development and training – institutional development – humanitarian and justice work

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Outcomes

Facilitate links

– training and education partnerships – THET – funding support

Government VSO

h

Other

– professional networks – Scottish training

Outcomes

sign the Declaration for palliative care and

pain treatment as a human right

www.hospicecare.com

http://www.hospicecare.com/cgi- script/csFormbuilder/forms/declaration.htm

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Last thoughts

You think you're too small to make a

difference? Then you've obviously never slept in the same room as a mosquito.

African Proverb

Appendix 1 - M Leng Presentation Joint Cross Party Group Meeting: Wednesday 8 October 2008