Toolkit Brings Care To Terminally Ill In Resource-Limited Settings, UK

Main Category: Public Health
Article Date: 10 Apr 2008 - 3:00 PDT

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Millions of people with terminal illnesses continue to suffer unnecessarily because of the lack of palliative care in much of the world. Today a new initiative is announced to equip, empower and encourage the health professionals and families who care day in, day out for the terminally ill in places where the palliative care "gap" is most evident.

The Palliative care toolkit: Improving care from the roots up in resource-limited settings has been produced by Help the Hospices on behalf of the Worldwide Palliative Care Alliance.

Palliative care seeks to relieve the suffering of those whose illness cannot be cured by controlling pain and other distressing symptoms and by giving good psychosocial support. The greatest need is often in those countries where health resources are most limited and palliative care remains inaccessible to millions. People with advanced disease often have to remain in hospital because there is not sufficient care to support them in the community. Home-based care has developed in response to this crisis but due to a lack of knowledge about pain and symptom control, and the psychosocial aspects of care surrounding terminal illness, it is often an inadequate service.

The Toolkit offers a positive can-do approach in order to make palliative care accessible to those working in the community be they a nurse, doctor, counsellor or family member.

Dr Vicky Lavy, lead author of the Toolkit, said: "We set out to show that good basic palliative care doesn't have to be costly or complicated. On the contrary, it can be delivered within existing community and health structures by health workers without specialist training, and family members and other members of the community can be involved too. The reality is that the vast majority of healthcare workers the world over have little or no training in palliative care. This Toolkit has been designed to start to address this gap and to give people faced with overwhelming need confidence that there is a lot that they can do to help."

The essentials of pain and symptom control, communication skills, emotional and spiritual support are all included but the Toolkit goes further with a chapter addressing the special needs of children and 18 'tools'. These are ready-prepared forms, charts, teaching aids and advocacy materials enabling the user to integrate palliative care into their existing service be it in the home, hospital or in a clinic.

The Toolkit has been written by two doctors and a nurse with extensive overseas experience and awareness of the need for palliative care to be scaled up urgently. It was developed following extensive consultation with palliative care providers in Sub-Saharan Africa and India. A related Training Kit to support its implementation will be published in the autumn. Training grants will also be available to facilitate the roll out of the Toolkit and the practices it outlines. It is hoped that translations of the Toolkit and Training Kit will follow in the future.

Mary Opare, founding member of the Ghana Palliative Care Association and deputy director of Palliative Care Ghana, said: "I see the Toolkit as a practical tool for health workers in the front line and to help those who need it most. This will be incredibly useful for us. I see the Toolkit as a way of increasing people's understanding of palliative care and as a way of getting it into health services."

The Toolkit will be launched* at London's County Hall on Friday 25 April and copies will be available from Daniel Ward, Help the Hospices, d.ward@helpthehospices.org.uk, +44 20 7520 8200. A pdf version can be downloaded from 18 April 2008 here.

About Help the Hospices

Help the Hospices is the UK hospice movement's national charity, supporting over 240 local hospices in their vital work on the front line of caring for people who face the end of life. Since 2001 it has developed an international programme which includes collaboration with and support of national hospice and palliative care associations in other countries; the advocacy of palliative care globally; information provision; publications and an annual programme of grant giving for palliative care projects in resource-limited settings. An International Palliative Care Reference Group advises its activity.

Help the Hospices also provides secretariat support to the Worldwide Palliative Care Alliance (WPCA) - a global network of national hospice and palliative care associations. It organises the Global Summits of the WPCA, and leads on WPCA's advocacy work, including World Hospice and Palliative Care day (an annual event incorporating around 1,000 awareness-raising and fundraising events worldwide).

Help the Hospices