The meeting started with a comprehensive discussion from UNDP on how care and support and protection fit into the post 2015 agenda. From a palliative care perspective, we are clearly seeing the importance of the health discussion and particularly the debate on Universal Health Coverage (UHC) as a potential goal or target. This was followed by a discussion from the World Health Organization (WHO) on Universal Health Coverage and the work currently being undertaken by WHO and partners to build the definition and the monitoring framework on how UHC will be measured. WHO were thanked for their new inclusion of palliative care within the definition.
An update on key achievements from the working group was delivered by Rachel Yates from UNICEF and the progress that has been made in relation to advocacy on palliative care over the previous year was highlighted. However, it was noted that huge gaps remain in provision on the ground. It was also noted that care and support, including palliative care, were still neglected areas of the response and consideration needed to be given over the division of labour of the UN in relation to this issue.
Each UN agency presented an update on their work against the Unified Budget and Results Framework (UBRAF). WHO reported back on the publication of the Integrated Management of Adolescent and Adult Illness (IMAI) adult guidelines, which includes a section on palliative care, and the forthcoming new consolidated Anti-Retroviral Therapy (ART) guidelines. They stressed that the roll out and usage of the IMAI guidelines was reliant on WHO regional and country offices. In relation to the deliverable by WHO laid out within the UBRAF, which states that they will ‘provide normative guidance and technical support for the review and revision of national palliative care strategies and responses’, WHO stated they would consult back with central office on progress or plans. UNICEF and UNHCR also discussed their work on HIV care and support.
In the afternoon, there was an overview on progress in relation to care and support activities. Rachel Albone from the Caregivers Action Network presented on the findings from the Caregivers research which has been undertaken in 4 countries in Sub-Saharan Africa. Palliative care national associations have been engaged in some of this work. Claire Morris presented on behalf of the UK Consortium on AIDS and International Development on the process for reporting back on the Roadmap on Universal Access to HIV care and support published in 2011.
A report was then done on the upcoming Global Atlas on Palliative Care at the end of life, upcoming opportunities in palliative care advocacy, followed by a report by Joan Marston on the ICPCN and UNICEF research to be undertaken in 3 Sub-Saharan countries, to identify the need for palliative care for children.
PEPFAR then delivered a presentation around the strength of inclusion of care and support within the blueprint. It was stressed that while care and support is not clearly included within the headline outcomes that the blueprint was a top level overview and that care and support was recognised by PEPFAR as fundamental and interwoven throughout the strategy. While the Orphan and Vulnerable Children (OVC) guidelines have been released, it is unclear whether there will be guidelines developed on adult and paediatric care and support for people living with HIV.
UNHCR presented on the care and support they are providing to refugees, migrant and displaced populations in humanitarian situations and highlighted that the focus of their care and support work tends to be on clinical interventions which are measurable. It was highlighted that monitoring and follow up of target populations was difficult given the mobile nature of the target group and the lack of effective data systems.
An update was then provided by Roger Drew on behalf of the UK AIDS Consortium on AIDS and International Development in relation to the project on piloting and recommending a set of indicators on comprehensive care and support looking at physical, psychological, legal and human rights, economic and social care and the care of carers. This work includes piloting of pain management indicators in Zambia by the Palliative Care Association of Zambia and in South Africa by the Palliative Care Association of South Africa.
UNAIDS then delivered an update on how care and support is monitored both at the global and national level. It was suggested that a review group needed to look at the National Composite Policy Index (NCPI)which is one tool of measurement for HIV and from which the questions on home-based care and palliative care were removed last year. It was also raised that while the UK consortium piloting work is vital, it would be useful if UNAIDS could look at a more comprehensive piloting of HIV care and support indicators as recommended by the UNAIDS Monitoring and Evaluation Group in 2011.
In addition, there were a number of presentations throughout the two days focussed on building the guidance and evidence on HIV sensitive social protection which has grown significantly in recent years and the livelihoods response. There was discussion around the need for evidence on social protection around treatment and prevention outcomes as well as the importance of programmes developed to the specific country context and the status of the epidemic. It was raised that there was a significant need to look at how the community care and support programmes can help HIV-affected households and vulnerable groups to access social protection programmes, including cash transfers.
Next steps in relation to comprehensive care and support include a technical meeting by care and support advocates with UNAIDS senior staff in mid-March on UNAIDS’ leadership on care and support, the completion of the UK Consortium care and support indicators work, the review of care and support within the NCPI monitoring tool, the monitoring of the roadmap to Universal HIV care and support and care and support within the UBRAF review, the launch of the Global Atlas on Palliative Care at the End of Life and the CAN research as well as driving forward the UNICEF and ICPCN project on paediatric palliative care. In addition, much more work needs to be done on the costing of the care and support response. Palliative care will not included in a costing research project being done by UNICEF on packages of care for OVCs due to the lack of unit costs for palliative care currently available.