Ms Karen Charnley:

I am grateful for the opportunity to address the joint committee on the work of the All Ireland Institute of Hospice and Palliative Care. Unfortunately, the institute's director, Mr. Paddie Blaney, cannot be here and has asked me to pass on his apologies.

The institute was established in 2011 as an all-island consortium of partner organisations, including health agencies and universities, with the aim of improving the experience of palliative care on the island of Ireland by developing knowledge, promoting learning, implementing policy and shaping practice. The institute received the bulk of its funding from Atlantic Philanthropies, with additional funding from a range of sources, including our consortium partners, the Irish Cancer Society and the Irish Hospice Foundation. Our initial funding package runs from 2010 until the end of 2015. Our work focuses on education, research and policy, and practice, with cross-cutting themes of ensuring the meaningful involvement of users, carers and communities, developing a coherent and collaborative palliative care community, supporting the delivery of innovative and high quality education and research, and using knowledge and learning to influence palliative care policy and improve practice.

I will take the opportunity to outline briefly some of our areas of work. We have established a palliative care research network with the aim of offering all-Ireland palliative care research community opportunities to engage in a collaborative environment which supports the development of high quality, clinically relevant and innovative projects aimed at advancing palliative care. Current research strands include the pathways towards social justice, understanding equality and inclusion in palliative care project; and the measurement and evaluation of outcomes of palliative care. These strands are being investigated by academics across both jurisdictions, including researchers in UCD and TCD. The research network has attracted health funding, most significantly from the Health Research Board in the Republic of Ireland, while other research projects have been funded by the research development office of the Public Health Agency in Northern Ireland and the Irish Cancer Society. The network continues to grow and expand.

Our second major initiative is the education network. We have established a network of approximately 50 organisations, including education providers, funders and commissioners, that come together to ensure palliative care learning opportunities are accessible and of the highest quality. Through the education network, we have engaged with palliative care educators to develop online learning resources to educate health and social care professionals, people with palliative care needs and their carers.

As part of our voices for care initiative, we recruited a panel of people with palliative care needs, their carers and citizens with an interest in palliative care to help oversee and inform our work. The panel is consulted by means of face to face meetings and electronic communications. In 2014 we co-ordinated the Let's Talk About survey, an innovative approach to finding out the views and lived experiences of service users and their carers in both jurisdictions. What we have learned from phase one is being fed into relevant agencies, including those in the statutory sector. A second stage survey and ensuing report will be developed in 2015. The palliative care awareness week initiative was developed by the institute and ran from 6 to 11 October 2014. The campaign aimed to inform people about palliative care and how it could help to improve quality of life for people with serious or progressive conditions. There was major stakeholder involvement in the campaign which secured extensive national, regional and local media coverage. Initial results from the evaluation of the campaign suggest it was successful in educating the public about palliative care.

The final area of our work is the palliative care hub which aims to be a gateway for palliative care information for the entire community. The hub has four major components. The children and young people palliative care hub was launched earlier this year by the Chairman. I am grateful also to Senator Mary Moran and Deputy Michael P. Kitt for attending the launch. The children and young people palliative care hub is a website which provides a portal to information on palliative care for children and young people on the island of Ireland. It is primarily aimed at assisting parents, guardians and carers in understanding children's palliative care and seeks to filter the wide range of information available on the Internet. The site was developed on foot of the needs identified by health and social care professionals and owing to the difficulties parents faced in finding reliable information at times of great stress. Its development was overseen by a working group which included children's palliative care organisations from across the island such as Northern Ireland Children's Hospice, the Jack & Jill Children's Foundation and LauraLynn which had come together to steer our work.

I will highlight two important areas of the site, each of which has input from professionals who offer their experience and advice on caring for a child and contains links to further relevant information sources. The first area describes the palliative journey, and breaks into very broad terms the stages a family and child may go through during their time within palliative care services from diagnosis and prognosis onwards. The second area contains personal stories from parents and families whose children have received or are receiving palliative care. It is hoped that the shared experience of these stories will give other families in a similar position insight into palliative care. Initial feedback from parents tells us that the personal stories section is their favourite section of the site. The site also provides links to condition-specific organisations, support services and Government agencies available in both jurisdictions. Over time, the site will continue to develop to continue to meet the needs of parents and we will work to market the site with the aim of ensuring parents and families who receive a diagnosis of a life-limiting condition can access the information they need.
The institute has developed the Palliative Hub learning platform with the overarching goal of providing an online learning environment for professionals and the public to learn about palliative care and build on their knowledge. The platform contains a number of palliative care online education programmes targeted at those groups. The institute continues to engage with palliative care educators regarding the development of further modules with the aim of ensuring the learning platform is the focal point for palliative care education on the island.
The professional, academic and research site is under development and will provide resources for health and social care professionals and researchers involved in palliative care. A group of senior nurses from both jurisdictions has developed the first component of the site, nurses-grapevine.com, which provides a virtual network for nurses working in palliative care to come together to share ideas and exchange information. The adult and public site is also in development and will provide information and resources for people who have palliative care needs, their carers and the wider public. The site will be similar to the children’s site as it will be a portal with links to existing resources and services while providing valuable information.
I thank the committee for the opportunity to speak about the institute, its work and its efforts to support collaboration across the island.