Ms Orla Keegan:

I thank the Chairman and members of the committee. I may not read word-for-word from my script.

We welcome the opportunity to appear before the committee. The theme that we, the Irish Hospice Foundation, will speak about is bereavement in Ireland. It explicitly acknowledges that each of the deaths the committee has heard about has a living legacy. Today alone 80 people may die in Ireland. Eighty people died yesterday and 80 will die tomorrow. Since 24 October, when the joint committee met to begin these sessions, I estimate that 1,200 people have died in Ireland. That makes for many bereaved families, parents, wives, husbands, brothers, sisters, children, grandchildren and friends. They are the people whom members meet all the time in their constituencies. Members will be very attuned to the individual circumstances, stories and complexities behind each death. We estimate that if ten people are affected by a single death then 290,000 people are bereaved each year.

The vision of our bereavement work at the Irish Hospice Foundation is that people experiencing loss and bereavement are met with informed compassion and with appropriate care regardless of the circumstances of the loss. The committee will have heard already the variety of circumstances that may pertain to people's illnesses, including the age at which they die, the age at which people are bereaved, the type of death, and relationships, tradition and culture.

In my presentation I make three points that are further backed up in the written submission. First, good bereavement care begins with good end-of-life care, good palliative care and good communication. Second, bereavement is best supported through developing our communities, which includes our professional communities. Third, we would like some form of strategic framework to guide development.

Research shows us that good end of life care is good bereavement care. We do not have to listen for too long to hear people say this. I was at a conference recently where somebody speaking from the floor said that because her partner died well, she and her children could live well. This is the sort of living legacy we would like to be in the position to make the norm in Ireland.

We call for education and training on the end of life, understanding of loss and the sensitivities members have already heard mentioned. The upcoming palliative care framework praises some of the requirements we propose and we would like education and training to follow up on them. The focus of the education should be on care, but also on communication and how to help assure people that everything that can be done is being done. We are aware that this is not the first time committee members have heard about the need for education, but we should not forget that education on loss is a part of that. Another area of education should focus on the needs and requirements of people working with loss day in and out and the strategies they need to cope with that.

Not all deaths are expected and formal and part-time education courses should be available for the police, emergency responders, paramedics and people who must deal with and break bad news. While education is important, it is not the only solution. We also need to back up and reiterate some of the changes called for in other sessions, such as the availability of care, choice for care, out of hours cover, the quality of facilities and so on. We need all of these in place to ensure the experience is better for the individual who is dying and their families. We have the opportunity to provide they have memories that are ones of solace rather than extra pain, unintended as that might be.

We need to build communities of care. Bereavement is not an illness, but it does have health consequences for people. It is psychologically painful and there are economic implications for them. Given it is not an illness, we need to promote a natural community response. Bereavement care should be embedded into the fabric of society. We are talking about building communities where people do not cross the road to avoid the bereaved and where offers of help last over time. It is important also to think of those bereaved whose loss may not be recognised. Some losses, such as miscarriage, may not have been shared and such losses are more difficult to support. In gay and lesbian relationships that may not have been acknowledged the loss of a partner may not be supported. There are also complex, invisible losses, such as those associated with abortion. All of these are happening in our communities.

Workplace initiatives, such as the compassionate community project in Milford and grief at work initiatives, are a good example of efforts to address bereavement issues. Efforts should also be made to deal with bereavement issues in schools. We should start at the societal level. More structured ways of helping people cope with bereavement are through volunteer bereavement or befriending services. These exist in all of our communities and their trained volunteers provide vital bereavement services. Members will know some of these services, for example, Console, Rainbows, Anam Cara and Bethany. There is scope to harness and develop these services further by helping develop consistent good practice and through shared training. I would like to mention our professional communities and the sort of care people might receive as a bereaved person from hospitals, primary care teams and mental health services. Bereavement represents a serious mental health issue or diagnosable difficulty for up to 7,000 people every year. We need to be able to provide the right care for this group of people.

We would like to see bereavement included in any national strategy framework. Any strategy should ensure there is scope to go beyond the Department of Health and include other Departments.