“The object of this work is broadly focussed on a generalist palliative care model to reduce the burden of care on hospitals, improve community support and enable better experience of care and quality of life for those nearing the end of life."
The Andrew Rodger Trust Charity
The Andrew Rodger Trust
Vision & work of the GSF Africa Charity
Prof Keri Thomas OBE & Rev Mark Thomas
Formed in 2014, The Andrew Rodger Trust aims to improve end of life care given by generalist frontline care -providers in low to middle income countries (LMIC) with a focus mainly on Africa.
We hope to play a role in relieving serious health-related suffering (SHRS) and improve palliative and end of life care either directly or by enabling others, supporting more people to have a better experience of care and quality of life, and to live well until they die.
To do this we co-adapt the expertise and lessons learnt from 20 years of GSF in the UK and worldwide to their local context. This includes; tools and resources, academic and research experience, advocacy at national policy levels, as well as an integration of spiritual values.
Background Context:
Why is there a need for this work internationally?
Death is part of life everywhere. People die every day in every country across the world, with different conditions and in different settings, and the care they receive can vary considerably, even within one area.
The UK is recognised as having the world’s best care for dying people and specialist palliative care services (Lien Foundation Quality of Death Index 2015). Many resource-poor countries have limited access to expertise in palliative and end of life care and minimal training in this area.
Most care for most people at the end of life is given by generalist frontline care-providers, staff or family carers. Not everyone needs expert specialist palliative care services but everyone caring for a dying person might benefit from some training and support.
So there is recognition of the need to train and enable more people caring for people approaching the end of their life across the world, with a rising need in poorer countries.
The burden of serious health-related suffering is rising fastest in low/middle -income countries (LMICs) and is escalating (Katherine Sleeman Kings EAPC 2019 ).
It is estimated that in future there will be increased demand for palliative and end of life care. As predicted deaths in LMICs rise 80% of the need for palliative care is thought to come from resource poor / low and middle income (LMIC) countries in the future (see Fig 2).
Fig.1 Global Palliative Care Needs Katherine Sleeman.
Kings College London, EAPC 2019 Conference Global Palliative Care.
Fig.2 Global Palliative Care Needs Escalating in LMICs
Katherine Sleeman Kings College London, EAPC 2019 Conference Global Palliative Care.
Outline of the Charity's Work
What we can provide;
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Training programmes for generalists in palliative/ end of life care, based on GSF.
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Research, evaluation studies and academic collaborations
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Spiritual and religious support and training
1. Training programmes for generalists in palliative/ end of life care, based on GSF
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Experience of UK grass roots movement and programmes (from National GSF Centre in End of Life care UK) plus access to resources developed in UK context from which to adapt to local cultures e.g. teaching programmes, metrics, tools etc.
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GSF tools, training, resources and support enabling proactive person-centred co-ordinated care including multiple tools, films, resources, power points slides, training and accreditation processes, metrics and learning from 20 years of use.
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Strategic big picture, high impact approach at scale with a ‘can do’ approach, energy and experience that has had an impact on development of strategic national policy in UK and government / political support.
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Advance care planning with a focus on clarifying goals, needs and preferences.
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An approach of co-creating to ensure local personalised adaptations (adopt and adapt approach) not a top down or ‘imperial’ transfer.
2. Research, evaluation studies and academic collaborations
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Academic rigour and research ability with a history of evidence-based research and publications giving credence and validity on a world stage.
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Ongoing Quality Improvement methodology with practical experience of detailed evaluations at various levels i.e. individual person, team, community, national / regional.
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Experience and development of metrics to improve measures for improvement and measures for assessment i.e. processes of Accreditation and presentation with the GSF Quality Hallmark Awards.
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Network of academic and clinical connections in the UK and internationally.
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Some limited internal funding plus ability to apply for larger grant funds, e.g. THET.
3. Spiritual and religious support and training
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Awareness of the importance of spirituality in living in the context of our dying.
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Recognition of the importance of spiritual care in the care for people facing the last stages of life, and awareness of varying spiritual and religious needs.
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Spiritual holistic approach to all, including staff, care providers, family and other carers.
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Recognition of the importance of bereavement support and readjustment to new realities after the death of a loved one.
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An on-line GSF Spiritual Care Course, with resources and workshops/ webinars plus guidance to spiritual leaders.
GSF’s Relevance to Resource Poor Countries / LMICs
Generalist palliative care is the leading way to deliver palliative care in low-income countries. With a respectful approach to context and culture of care, many of the GSF training, tools and learning are transferable and could be of use in LMICs.
The palliative care speciality needs to be enhanced and developed across the world , including specialist training and access to drugs such as morphine. But GSF has a different role . As well as developing some few experts delivering specialist palliative care, the focus of GSF is in enabling the majority of care providers to be upskilled and informed. Adapting GSF to an African context is likely to expand the scope and scale of effectiveness of this work.
How does the charity operate and what is its activity so far?
The Andrew Rodger Trust (ART) charity was established in 2014 and registered with Charity Commission, Charity Registration number 1160141
So far, the charity has funded initial travel and subsistence for attendance at 2 African Palliative Care (APCA) Conferences - Uganda 2016 and Rwanda 2019 , THET and Edinburgh Global Palliative care conferences 2018, and early work in South Africa.
We are now developing further potential projects in Africa. Since 2019, we have been delighted to be working with Dr Emmanuel Luyirika and the team at APCA to develop 2 pilots for adapted GSF in Africa, and we are seeking further research and grant applications.
For more details do contact us and share your ideas. If you are interested in researching this area, do please contact us also.
This work is dedicated to the memory of Andrew Rodger who died in 1982 ,aged 24, whilst in Africa.
To see the personal motivation for this work in Africa and the history of the Andrew Rodger Trust click here
