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Joint Committee on the Implementation of the Good Friday Agreement debate -
Thursday, 11 Dec 2014

Role and Functions: All Ireland Institute of Hospice and Palliative Care

I welcome the new members of the joint committee, Deputies Dinny McGinley and Maureen O'Sullivan. We look forward to working closely with them on all aspects of the Good Friday Agreement.

I am pleased to welcome Ms Karen Charnley, programme manager, All Ireland Institute of Hospice and Palliative Care. The institute was established in 2010 and has four main programme areas, namely, research, education, policy and practice, and communication. Ms Charnley is here to inform us about its work on an all-island basis to improve the experience of palliative care for individuals and families. I had the pleasure of launching its children's and young person's website in late October. The website is primarily aimed at assisting parents, guardians, carers and the wider public in understanding the nature of palliative care for children by filtering the wide range of information available on the Internet. This is just one example of the work being done by the institute across the island of Ireland. Members of the committee are supportive of efforts to utilise resources on an all-Ireland, cross-Border basis in key strategic areas. Organisations such as the All Ireland Institute of Hospice and Palliative Care make sense in this regard and I look forward to hearing what Ms Charnley has to say about the cross-Border aspects of her work.

By virtue of section 17(2)(l) of the Defamation Act 2009, witnesses are protected by absolute privilege in respect of their evidence to the committee. If they are directed by it to cease giving evidence on a particular matter and continue to so do, they are entitled thereafter only to qualified privilege in respect of their evidence. They are directed that only evidence connected with the subject matter of these proceedings is to be given and asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against a Member of either House of the Oireachtas, a person outside the Houses or an official by name or in such a way as to make him or her identifiable. Members are reminded of the long-standing ruling of the Chair to the effect that they should not comment on, criticise or make charges against a person outside the Houses or an official by name or in such a way as to make him or her identifiable.

I invite Ms Charnley to make her opening presentation.

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.

I thank Ms Charnley for her interesting presentation. I was not familiar with her institute. From where did the initiative to establish the organisation in 2011 come? What are its sources of income? Is the institute engaged in research on how we can improve care rather than in providing care? What percentage of the institute's work is done North and South of the Border?

I welcome Ms Charnley. Could she give some practical examples of the cross-Border elements of her work?

I welcome Ms Charnley and thank her for her presentation. The Chairman launched the report and I was honoured to attend the launch, where the emphasis on children came across. There are issues with regard to funding the services that the institute provides for children on an all-island basis. I presume this has been asked about. How do children's services differ from adult services? The issue of front-line services came across in the presentation.

I, too, am familiar with the institute's excellent work and I know one of the parents actively involved in it, who has been a mainstay. Like Deputy Kitt, I was at the launch and I congratulate Ms Charnley on her work. Could she speak about funding? I ask her also to talk about reaching out into the more rural areas of the country and the support the institute provides there, from Donegal to Cork and in the Border region. Does she find any barriers along the way?

The presentation was very interesting. How many staff does the institute have? What is the extent of its links with hospice care? Much of the work is online. There is a danger that people may self-diagnose online, and I wonder about the extent of person-to-person engagement by the institute, particularly regarding people who have mental health issues.

Ms Karen Charnley

The institute was developed when Professor David Clark was invited to visit Ireland around 2009 and 2010 to undertake a study into the future development of the palliative care sector. From his work it was proposed that an institute was needed to bring together organisations interested in palliative care across the island. Our partners, including the hospice education providers and universities, undertook work to develop the model for the all-island institute.

We were fortunate to receive a substantial grant from Atlantic Philanthropies. We also receive funding from the Irish Cancer Society, the Irish Hospice Foundation, the Public Health Agency and the Health Research Board, among others. While we receive funding for specific projects, our main funding came from Atlantic Philanthropies.

We have partners from both the North and South of Ireland. We work with six hospices, Marie Curie Cancer Care and Northern Ireland Hospice in Northern Ireland, and in the Republic, St. Francis Hospice, Our Lady's Hospice, Milford Care Centre and Marymount University Hospital and Hospice. We work across three main themes, namely, education, policy and practice, and research. We always work across both jurisdictions and seek to collaborate with organisations. For example, on the children's and young people's Palliative Hub site, we sought to link in with the active organisations involved and professionals working in the different health systems, such as consultants, nurses and different leads.

The children and young people's Palliative Hub is a good example of our North-South work. Our head of research works part time for us and also works within University of Ulster. We have leads for the different research areas from University of Ulster, Queen's University, UCD, Trinity College, Maynooth University, NUIG, the University of Limerick and UCC.

We are very much linking with the different centres in universities and the researchers in them to take forward the palliative care research agenda. That is one example of how we are collaborating on a North-South basis.

Deputy Kitt asked about funding. As one member rightly said, we are not a front-line service provider but we very much link in with the palliative care sector and those who provide a palliative care approach in hospitals and front-line services and those providing specialist palliative care in hospices, homes and day care centres in hospices. We aim to support them by giving them resources such as online learning and new research that will impact on their practice. I outlined our funding models and we support palliative care providers to source additional funding for their services.

Senator Moran referred to rural areas. We have recently undertaken a project to identify community learning needs with the Carers Association and Carers Trust Northern Ireland. The project undertook focus groups and has a working group of carers who have experienced palliative care services. The project aims to give us a clear steer on how we can meet the community learning needs relating to palliative care both in terms of online resources, for example, videos and paper resources. We are conscious that everything cannot be delivered online. The project will give us recommendations, which we will then go forward with to look at ways in which we can engage with, for example, rural communities. We are also conscious of the barriers in terms of online learning and the provision of online resources and, therefore, it may be that with the children's site, we will produce a paper edition with relevant information that can be handed to people if they do not have access to the website.

We aim to support our hospice partners in supporting rural communities. One example is Foyle Hospice. We have education fellowships which will enable professionals to go on a site visit to learn about best practice. One of the members of the team in Foyle Hospice visited a Compassionate Communities project, which operates out of Severn Hospice in Bristol. That project looks at getting the community to support people with palliative care needs. A similar project operates out of Milford Care Centre. We supported the professional to do the site visit and the Foyle Hospice is looking at rolling that out as a pilot project in its area. We are very much trying to facilitate and develop capacity within the sector.

Deputy O'Sullivan asked about staff numbers. We are a small team of approximately eight members. We are small in number but, hopefully, powerful. We have good links with all the hospices across the island. Six of the hospices are our partners but we also engage with other hospices that are not direct partners. For example, we have a senior nurse network, of which nurses from those hospices and hospitals are members and there are representatives from the majority of hospices on the island on the education network and they guide our work in terms of education. We are conscious of online education. We want to make the learning platform as easy as possible for people to log on to and access materials. If people have difficulties, we have telephone numbers and e-mail addresses through which they can contact us to provide them with support

It is nice to hear about examples of cross-Border co-operation. Could projects and so on be improved by the governments?

Ms Karen Charnley

We are very much limited by our size. There is more that we could progress if we were a larger organisation but we try to prioritise our efforts. One example is the Palliative Care Awareness Week. The institute provided significant funding for that last year and we received good coverage in national, regional and local media. That is something we would like to run again but we are constrained by our limited funding. That is one example of where additional funding could be required.

I work on the palliative hub in the institute. We want to ensure it is sustainable in the long term and that the resources can continue to be developed and added to make the sites live and keep them interesting.

There is a successful hospice in Letterkenny, County Donegal, which was built on voluntary contributions, and there is one in Derry. I am aware from listening to obituaries and so on that Donegal people go to the Derry hospice and vice versa and, therefore, there must be an element of co-operation. There is also a hospice in Sligo in the north west. There must be a cross-Border understanding. The Foyle Hospice was established by a Donegal doctor who has my surname, although he is not a relation. I am aware of how successful these facilities are where full-time care is provided on an institutional basis and how comforting it is not only for the patients, but for their families as well. It is a tremendous movement.

Does the institute lobby for additional hospice care services? There was a significant gap in services for children in need for hospice care and the LauraLynn foundation filled it. When the institute identifies a need in a particular area, does it become part of a lobbying group to secure funding or to bring it to the attention of people who might be in a position to do something?

Ms Karen Charnley

We aim to support the various providers to lobby through policy work but it is more about supporting them to lobby the relevant agencies.

Ms Charnley mentioned the institute's links with hospices and hospitals. Is there an outreach service for rural areas? I refer, in particular, to home care packages, which I acknowledge are expensive, but there has been a great deal of lobbying about them. Hospices are sometimes more concerned with facilitating visits rather than providing beds. Does any aspect of the institute's work address that in the context of rural areas?

Ms Karen Charnley

If it is okay, I will come to the Deputy with further information about this. The institute supports having social care providers who deliver home care or who use a palliative care approach in hospitals in order that all the care is not necessarily delivered by specialist hospice-based services. We look to support them in the development of their practice and via educating the professionals who do the visits and to use that approach to meet people's physical, social, emotional and spiritual needs as part of the care.

We would seek to support them in the development of their practice and, via education of the professionals who are doing the visiting, in using that approach in terms of supporting people's physical, social, emotional and spiritual needs as part of the care.

Further to the point about gaps in the services nationwide and across the Border, are there specific examples where improvements could be made? I refer in particular to the cross-Border element and regional or marginalised Border areas. Is Ms Charnley aware of a need for enhanced services along the Border region at present? Is there anything the committee can do to try to advance and lobby for an improvement in service in those areas? Given her networking and conversations with the hospices across both parts of the island, what is required? Is there a specific gap for adults or children in any of the Border regions?

My question is similar. It is specifically about my area of Dundalk and the work with the North Louth Hospice, which provides an excellent service. There is also a service in Newry, which I have visited on many occasions. It, too, provides outstanding care. However, what is the situation for children in that area?

Ms Karen Charnley

I might refer back to Deputy Conlan with further information on the cross-Border area. Senator Moran referred to the North Louth Hospice in Dundalk and the area hospice in Newry. I will refer back to the committee on the gaps across the services. In Northern Ireland, the Transforming Your Palliative and End of Life Care programme, which is being run from Marie Curie Cancer Care, is looking at that in terms of what the gaps are and specific projects that can be taken forward in Northern Ireland to improve the services. Obviously, there is work within the Republic, but I will refer back to the members with more detail.

Will Senator Moran repeat her question?

It was similar to Deputy Conlan's. I asked specifically about my own area between Dundalk and Newry, which are the two hospices that are closest to me. I am also curious about the care for children.

Ms Karen Charnley

The Northern Ireland Children's Hospice provide hospice beds and I understand there are some beds in the western trust as well. Obviously, children's palliative care is an area which continues to develop. There is consideration of the gaps and within Northern Ireland the palliative care review is due to be published in the near future.

In the case of children in the north Louth area, is that provision open to them to avail of services across the Border?

Ms Karen Charnley

I do not believe it is.

Perhaps that is something on which we could work. For people living in the South in Border areas, it might be closer to go to the North than to travel to LauraLynn or the like in Dublin.

I suggest that the committee send a letter to the Minister for Health, the Minister for Education and Skills and the Minister for Children and Youth Affairs with a transcript of the meeting and seek a response to the issues raised that affect their respective Departments. That would be helpful.

I thank our guest, Ms Karen Charnley, for meeting the committee today. The discussion has been informative and inspiring, and we wish you well in your future work. Again, I thank you for the great day on which we launched the website.

The committee will adjourn until 15 January 2015. I wish all of you a happy Christmas and a peaceful new year, and thank you for your commitment to the committee throughout the year.

The joint committee adjourned at 11.15 a.m. until 10.10 a.m. on Thursday, 15 January 2015.
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