Ms Bríd Carroll:

The Irish Childhood Bereavement Network welcomes the opportunity to speak to committee members on behalf of bereaved children. We have heard about the palliative care of children who are dying, but when we think of bereaved children, we are thinking of children who are actually suffering loss from the moment of prognosis in the family. We cannot think of them outside the family context. We think of children as the forgotten mourners. Very often, we see them in cemeteries, but we do not actually think about them. We might give them a look of pity, but we do not actually follow on to see what happens to them. A child who is bereaved in childhood is bereaved for life. Every milestone of his or her life, including the transitions of First Holy Community, Confirmation, changing school, going to college, getting a job, getting married and having children, will have the shadow of the loss of childhood hanging over it.

From figures from the CSO, with which we had discussions in the past week, we have discovered that, according to widowed parents, 20,886 children under 19 years have been bereaved of a mother or a father. That is a very low estimate because it does not regard many of the children's siblings who are dying in palliative care or other children who have been bereaved.

The network was established only in the past 12 months. It was launched by the Minister for Children and Youth Affairs in July last year. With funding from the Irish Hospice Foundation and the Family Support Agency, we appointed a co-ordinator in March. There has been phenomenal work done since. The vision of the network is the sharing and developing of good practice, including training and resources. By doing so, the care of bereaved children and their parents will be improved across the country. The network has a principle of equity, a belief that all children will receive support they require, depending on the nature of the death. It is not specific to palliative care.

The network represents all professionals working with bereaved children across Ireland. In considering children's grief, we must take on board Dr.O'Reilly's point that children are not mini versions of adults. As professionals, we know that when adults are grieving, it is a case of their getting into the river of grief until they come out on the other side. For children, it is like splashing in puddles. Their grief is intermittent and intense, often caused by triggers that can feature for many years. Professionals believe exclusion and silence are the two most unhelpful phenomena for bereaved children. I refer to exclusion from funeral rituals because it is considered the children are too young to understand. We know from experience that even the youngest of children have stated, "I was there." They may be under four years but presence at the funeral is very significant in their development in the longer term. We need to educate parents in the light of this.

The second phenomenon, silence in the family home, is really detrimental. If there is an attitude of not addressing the subject in the house, children suffer silently. It can actually cause a lot of unfinished business for the children in regard to the loss of the deceased. We know children need acknowledgement and inclusion. The work done for up to 30 years by professionals around the country has been preventative; that was practised wisdom. With this approach, where can the bereaved children look for support? Research tells us that 60% of families can actually work through grief if they have information and a good natural support network. What happens if a child is nine years old and his or her mum and dad are all-consumed with his or her sibling's illness and there is nobody there for him or her? He or she is farmed out to the neighbours or left to fend for himself or herself. What happens if a child's dad takes ill with a brain haemorrhage or heart attack at work and dies within hours outside any palliative care setting? Who will look after the child then? Who will support him or her? From 20 years of practice, I know that 99% of the children I meet say to me that, until speaking to me, they had spoken to no one about their loss. That is a huge number.

Our school systems have a huge influence on children. Professionals believe schools can support the grieving child and notice the difficulties that arise in the classroom. School authorities can bring in parents and talk to them about the matter and can actually make referrals to obtain the extra support both the children and parents require in order to come through. We find that if we put that support in place, we actually enable parents to grieve and support their children simultaneously.

An audit of childhood bereavement services conducted in 2010 showed that services across the country were absolutely fragmented. The study compares with a UK study from 2003. In Ireland we have no standards for bereavement support services for adults or children. Therefore, we recommend the establishment of an agreed network for community, public, volunteer and professional education with respect to childhood bereavement. We recommend an agreed research agenda because we do not yet have enough evidence of the consequences or the services actually provided. We recommend continued support of the networks established and the European networks with which we are working. We recommend the development of existing services and frameworks for child bereavement services.

We use the analogy of the three-legged stool. The child is the seat and the support legs are the family, schools and services. Should any of the three legs not function, the child will collapse, with detrimental effects in the future. The Government, the Department of Health, the Department of Finance and the Department of Social Protection can work with us to realise our vision.