Capacity Statement WHPCA 2015

Promoting Universal Access to Quality Palliative Care
Worldwide Hospice Palliative Care Alliance
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CAPACITY STATEMENT
Vision - A world with universal access to affordable, appropriate, quality palliative care
Mission - To promote universal access to affordable, quality palliative care in collaboration
with the regional and national hospice and palliative care organisations and other partners
Values - We are guided by the following values:
 Compassion: a strong feeling of empathy for the suffering of others
 Quality: striving for excellence
 Integrity: being honest and upright in character, demonstrating transparency
 Equity: fairness or justice in the way people are treated; and
 Respect: appreciation of and esteem for another’s worth or value.
I. WHPCA- a global alliance of 207 hospice and palliative care
organisations representing 77 countries across the globe.
The Worldwide Hospice Palliative Care Alliance (WHPCA) is a global alliance of 207 national
and regional hospice and palliative care and affiliate organisations representing 77 countries
across the globe. We believe that no one with life-limiting conditions, such as cancer or
HIV, or organ failure should live and die with unnecessary pain and distress. We work with
our members, governments and global partners to ensure availability and accessibility of
quality palliative care for the most vulnerable adults and children. Since our inception in
2008, we have successfully advocated and supported the integration of palliative care into
international policies and health development agendas.
WHPCA is an INGO in official relations1
with the World Health Organisation (WHO). This is
central to our ability to influence global hospice and palliative care policy and bring about
real change. This relationship has invaluable benefits to our members and through this we
1
http://www.who.int/civilsociety/relations/NGOs-in-Official-Relations-with-WHO.pdf

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are able to represent the voice of palliative care beneficiaries around the world at the
highest level of global public health.
In partnership with WHO, we developed and published the, “Global Atlas of Palliative Care
at the End of Life”2
, the first resource to measure the need for and availability of palliative
care worldwide. Globally considered as an essential advocacy resource, the Atlas has helped
highlight the considerable gap between the huge need for palliative care and the limited
availability of services. The Atlas recommended that all countries include palliative care as
an essential component to every modern health-care system in their moves towards
universal health coverage3
.
WHPCA coordinate the yearly World Hospice and Palliative Care Day4
, a unified day of action
to celebrate and support hospice and palliative care around the world. The aims of World
Hospice and Palliative Care Day are:
 to share our vision to increase the availability of hospice and palliative care
throughout the world by creating opportunities to speak out about the issues
 to raise awareness and understanding of the needs – medical, psychological, social,
practical & spiritual – of people living with a life limiting illness and their families
 to raise funds to support and develop hospice and palliative care services around the
world
We are a founding partner of ehospice, the world’s largest hospice and palliative care news
website and free app- and manage the International edition. ehospice is revolutionising
access to hospice, palliative and end of life care news, innovation and good practice.
ehospice aims to improve patient care across the world by facilitating the sharing of
knowledge, promoting networking, encouraging exploration and learning and helping to
build global partnerships. It is aimed at anyone with a professional or personal interest in
2
"The Atlas shows that the great majority of the global need of end-of-life care is associated with non-
communicable diseases such as cancer, heart disease, stroke and lung diseases. While we strengthen efforts to
reduce the burden of the biggest killers in the world today, we must also alleviate the suffering of those with
progressive illness who do not respond to curative treatment.” Dr Oleg Chestnov, WHO Assistant Director-
General for Noncommunicable Diseases and Mental Health.
3
http://www.who.int/cancer/publications/palliative-care-atlas/en/
4
http://www.thewhpca.org/world-hospice-and-palliative-care-day

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hospice and palliative care, drawing on their expertise and experience to create a global
palliative care community5
.
WHPCA is working to promote the implementation of the World Health Assembly resolution
A67.19, “Strengthening of palliative care as a component of comprehensive care throughout
the life course”. WHPCA personnel are supporting the WHO through the ad-hoc Technical
Advisory Group for Palliative Care and Long Term Care. At the country level, WHPCA works
with national palliative care associations to support integration of palliative care into
national health systems. We work to include palliative care in the training at undergraduate
and postgraduate levels for health and social care professionals. Our Palliative Care Toolkit
and Training Manual published in 20086
, and translated into six languages provides basic
palliative care training for health care workers in countries such as Bangladesh, India,
Mauritania and Tanzania.
WHPCA works to leverage resources to directly support programmes to reach poor and
marginalised people with palliative care services. WHPCA’s aim is to access and provide
financial support and programming expertise to national and local partners to reach those in
need of palliative care services including a focus on poor, marginalised and hard to reach
communities. These projects will provide innovative models to show funders and
governments how palliative care works in practice and its value for money in different
settings. There is considerable expertise within WHPCA and member organisations to
provide advice and technical assistance to national associations and to governments to
facilitate the implementation of the WHA resolution on palliative and long term care.
Theory of Change - Using a Public Health Model
We follow a public health model that emphasises policy, education, medication availability
and implementation7
to enable and effect change.
5
https://www.youtube.com/watch?v=f5vvUmVDnsY
6
http://www.thewhpca.org/resources/category/palliative-care-toolkits-and-training-manual
7
WHPCA Strategic Plan 2015-2018

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Policy: Without appropriate policies to support development of palliative care, its provision
is challenging. In many countries there is little or no government support for palliative care.
The key policies that can support palliative care development include: polices that
acknowledge and define palliative care as part of the healthcare system; national standards
of care describing palliative care; clinical guidelines and protocols; establishment of
palliative care as a recognised medical specialty/sub-specialty; regulations that establish
palliative care centres and hospices as a recognised type of healthcare provider with
accompanying licensing provision; and national strategy on palliative care implementation.
Education: The vast majority of health professionals worldwide have little or no knowledge
of the principles and practices of palliative care. All medical professional schools should
include basic training on palliative care and continuing professional education should
include palliative care for existing health professionals. Without these professional
competencies, palliative care integration across the health systems will be challenging.
Medication availability: Essential palliative care medications, especially opioids for pain
control, are required for the delivery of quality palliative care, as noted in the WHO Model
List of Essential Medicines. Access to opioid medication for pain control is an enormous
problem worldwide. 80% of the world’s population lacks adequate access to opioid
medications for pain control. Australia, Canada, New Zealand, the United States and several
European countries account for more than 90% of the global consumption of opioid
analgesic. Access to medications is crucial to high quality and effective pain and symptom
management. Systemic challenges in the supply chain – from ordering to administering –
are compounded by the lack of pharmacists in public health services, and the restriction of
power of prescription to select group of professionals within the medical hierarchy.
Implementation-Supporting Services: Palliative care programme development has been
very uneven internationally and is correlated with Human Development Index levels.
Without policy support for palliative care and funding mechanisms, growth is restricted to
whatever is achieved by pioneers making sacrifices to create hospice and palliative care
services in their communities.

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Our Global Membership Representing 77 Countries
Our diverse and active membership includes 207 hospice and palliative care organisations
based in 77 countries. We have a global membership and a community of experts that can
be mobilised for campaigns to highlight palliative care to national government, regional
networks and organisations implementing health programmes.
Map showing location of our 207 members worldwide
II. Hospice and Palliative Care- Promoting Quality of Life and Dignity
Palliative care improves the quality of life of patients and their families with life-
threatening illnesses, through the prevention and relief of suffering, early identification and
assessment and treatment of pain and other problems.
Palliative care is a holistic approach. It focusses on treating the conditions of those affected
as well as meeting their physical, psychological and spiritual needs.
Palliative care is a human right. People should be able to access it as soon as they are
diagnosed with life-threatening conditions and not just at the end of life.

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Palliative care is provided in different settings, depending on where the beneficiaries are. It
can be home and community based, in hospitals and other health facilities, and in some
cases in prisons. It is provided by a group of compassionate individuals that can include
family members, community carers, doctors, nurses, psychologists and social workers.
Pain treatment is a key part of palliative care as pain is one of the most common and
distressing symptoms that people with serious illness and at the end of life face. We
promote the use of oral morphine in treating pain. It is the simplest, most affordable and
most effective method which is tragically, not available in many countries.
Supporting family members and carers is a key aspect of palliative care. This is to improve
their quality of life and well being, an often neglected area of care.
The Global Challenge
 42% of the world has no hospice and palliative care services and in 32% of
countries, only a small percentage of the population are reached
 Only in 20 (8.5%) out of 234 countries are palliative care services integrated into
the national health care system
 Approximately 80% of the world’s population lack adequate access to the
medications needed for palliative care
 18 million people die in unnecessary pain and distress each year
 Only 7.5% of the world’s population live in countries considered to have adequate
opioid consumption levels
How we work
Advocacy and influencing policy – We are building on our advocacy successes and aspire to
be an effective and powerful advocate globally for hospice and palliative care to develop
and promote relevant policies and laws that support palliative care development. To
address the gap in policy for palliative care, we will continue to identify advocacy
opportunities at the global level and will work with our members to ensure the
implementation of the WHA resolution on palliative care.

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Organisation development - We support the development of national associations and
hospice and palliative care services. We encourage peer mentorship from regional
associations and neighbouring national associations to assist developing national
associations and local organisations through sharing of best practice. We promote and assist
national palliative care associations to integrate palliative care into national undergraduate
and postgraduate health science curricula and healthcare workers’ training programmes
Resource mobilization and programme support - We are working to improve the capacity
of our members to address the palliative care needs in their countries. Our support package
includes training, service delivery, joint advocacy and programme management. We will
focus on the needs of the most vulnerable and will promote a grassroots response to
addressing palliative care. We will work to implement and document different models of
palliative care interventions in various settings. We will engage with donors and supporters
to advocate for the inclusion of palliative care in various health programmes. We will work
to influence them to provide more support to hospice and palliative care globally.
III. Our Track Record
Since inception and in collaboration with other key international partners, we have achieved
a significant degree of success in integrating palliative care into international policies and
health development agendas. At the UN High Level Summit on the prevention and control of
NCD in 2011, we have successfully pushed for the inclusion of palliative care into the
political declaration on the prevention on NCDs. We have successfully negotiated the
inclusion of a palliative care indicator into the monitoring and evaluation framework of the
Global NCD Action Plan. This indicator will help ensure that governments are held
accountable for implementing the NCD declaration. We are leading ongoing advocacy work
at the World Health Assembly with Human Rights Watch and other palliative care partners.
This work has led to the adoption of the palliative care resolution by the World Health
Organisation; 'Strengthening of palliative care as a component of comprehensive care
throughout the life course'.
Based on the International Covenant on Economic, Social and Cultural Rights (ICESCR),
General Comment 14 of the Committee on Economic, Social and Cultural Rights (CESCR)
and statements by the UN Special Rapporteurs on Health and on Torture where palliative
care is declared as a human right, we supported international partners, European

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Association of Palliative Care (EAPC), International Association for Hospice and Palliative
Care (IAHPC) and Human Rights Watch (HRW) to develop the Prague Charter calling on
governments to integrate palliative care into their health systems and health budgets. We
have done important work leading to the inclusion of palliative care in the new WHO Stop
TB Strategy launched in 2012, raising the profile of palliative care needs for patients with
multiple drug resistant TB (MDR-TB).
We have been at the forefront of information gathering and dissemination. Our website has
uploaded global resources on palliative care and has provided members and partners with a
platform to share materials. We have put concerted effort into the development of our
social media platform. As a result, the World Hospice and Palliative Care Day and WHPCA
have a substantial cohort of followers on Twitter and regular updates and ‘likes’ on
Facebook. In 2012, we established ehospice, an online resource that is available via a
website and app (www.ehospice.com). The goal of ehospice is to bring hospice and
palliative care news to those with a personal or professional interest in hospice and
palliative care, as well as new audiences. In addition, the World Hospice and Palliative Care
Day campaign provides greater opportunities for members and partners to interact and
share information and ideas on global campaign activities.
IV. Activities Globally
We are currently implementing and developing projects aimed at improving access to
hospice and palliative care services for the most vulnerable adults and children.
Bangladesh- A Pioneering Urban Palliative Care Project in 2 urban slums. Urban palliative
care services and models for its implementation in Bangladesh, as well as other parts of the
world are scare. In partnership with the Centre for Palliative Care of the Bangabanghu Sheik
Mujib Medical University, we are implementing a pioneering urban palliative project for 100
older persons in two urban slums. With support from the family members, we are training
nurse attendants and community palliative care assistants recruited from the slums. This
project will help inform the development of urban palliative care interventions in other
parts of the world through the lessons we will learn.
Palliative Care Toolkit Evaluation and Revision- We are currently evaluating and revising
the palliative care toolkit, community resource useful for palliative care practitioners

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globally. First developed in 2008, the toolkit has been used all over the world. We are
revising it to include the latest hospice and palliative care information so that it remains a
truly relevant resource. The toolkit can be downloaded free of charge from the WHPCA
website. The revised version will be available in 2016
Supporting the development of projects in:
Ethiopia. WHPCA and Hospice Ethiopia are co-developing a home and community based
care with support the traditional burial societies called Iddirs. Iddir are centuries old
mutual support institutions which were originally for providing financial and social support
around a burial, but are now used for other community issues such as palliative care. Other
project components will include: increasing volunteerism among community members,
training of student nurses in their final year and increasing access to three hospitals and
health facilities including cancer treatment and voluntary counselling and testing, in three
sub-cities in Addis Ababa, Ethiopia’s capital.
Uganda: Improving the quality of life of people with HIV and Cancer in six districts in
Uganda through Palliative Care. This project aims to improve the quality of life of People
Living with HIV and AIDS (PLWHA) and People Living with Cancers (PLCa) in Buddu, Uganda
by improving access to palliative care and strengthening the capacity of partners to deliver
comprehensive HIV and palliative care services. Through the introduction of palliative care,
the project will address the barriers to anti-retroviral therapy adherence for improving the
quality of life of PLWHA and PLCa. The proposed project is in partnership with Kituvo
Mobile.
South Africa- Increasing local capacity in palliative care in the municipality of Msunduzi,
KwaZulu-Natal Province, South Africa. The aim of the project is to improve access to
palliative care for people with life threatening illnesses in the Msunduzi municipality, South
Africa. This will be achieved by increasing the capacity and resilience of two local nurses and
30 community health practitioners.
Uganda- Compassionate Cellmates improving access of prisoners with HIV to palliative
care and HIV services in Masaka, Uganda. This project will target Masaka region, where
500 prisoners, 300 of whom are People Living with HIV and AIDS (PLWHA), have no access to
care and treatment. We will achieve this by working with prison authorities to integrate

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palliative care and HIV activities including the formation of palliative care teams, training of
prison staff and prisoners with the existing health service delivery. Central to this project is
the recruitment and training of male and female prisoners to serve as, “Compassionate
Cellmates”, who will provide care, psychosocial support and friendship to prisoners who are
living with HIV to enable them to have a better quality of life, stop the spread of HIV
infection and battle stigma, isolation and apathy.
Other project proposals from Malawi and Zambia are currently being reviewed for
development.
V. Governance and Membership
WHPCA is governed by a Board of Trustees that is comprised of 13 palliative care leaders
from Africa, Asia Pacific, India, North America, Latin America, Europe and the Middle East.
Collectively, the trustees bring skills and expertise on issues such as advocacy, leadership
and management, cancer care, HIV/AIDS care, law, education and human rights. The
Organisation is registered as a charity in the UK and Hospice UK provides financial
management and administrative support. WHPCA has positive net assets and no debt. The
organisation has tight financial management and internal controls supported by Hospice UK
financial management systems which meet rigorous international standards.
VI. Monitoring and Evaluation (M & E) System
We are committed to the monitoring and evaluation of our projects in order to increase
quality, as well as to inform future strategy development. This is also an important part of
our accountability to our various stakeholders. Our M & E will provide the evidence that will
validate our theory of change and intervention logic.
Our strategies and programme plan form the basis of our monitoring and evaluation. As part
of our programme design, all projects are required to develop a supporting M & E
framework. The M & E framework will consist of a mix of standardised global and local
indicators. A baseline survey is required for each project. This will capture: input, output
and outcome information as well as the number of intermediate and ultimate beneficiaries
reached by the project. Where feasible, data will be disaggregated by gender and other
dimensions of social exclusion. The data generated through the baseline form part of the
vital statistics for each project.

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An Annual Project Review that reflect on overall project progress and effectiveness, and
which are based on the evidence generated through different M&E initiatives throughout
the year including an annual face-to-face stakeholder meeting involving all partners and
beneficiary representatives will be planned for and conducted. The information generated
will be use to adapt project plans to increase quality, effectiveness and impact.
Locally specific M&E, partners are encouraged to undertake additional, locally defined M&E
initiatives that respond to particular needs at the level of project implementation and that
answer key questions set out at the start of during the course of the project. As data-sets
become available, we will monitor trends and compare the effectiveness of various
approaches. We are planning to undertake a global M&E initiative, to establish a body of
evidence that reflects on the quality, effectiveness and impact of our programme. To ensure
the success of our M & E, we are planning to invest in strengthening organisational M & E
capacity.
VII. Charity Registration and Contact Details
Registration Details
Company Limited by Guarantee, Registered in England and Wales No. 6735120
Registered Charity No. 1127569 Charity Commission England and Wales
Fundraising Standards Board
We are a member of the Fundraising Standards Board (FRSB)
self-regulatory scheme. The FRSB works to ensure that
organisation raising money for charity from the public do so
honestly and properly. As member of the scheme, we follow the
Institute of Fundraising’s Code of Fundraising Practice and
comply with the key principles embodied in the Code and in this
promise.
Contact Information
info@thewhpca.org
34-44 Britannia Street, London WC1X 8JG, United Kingdom
Main Switch board +44(0) 207 520 8200 & +44(0) 207 520 8259

Capacity Statement WHPCA 2015

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