In the UK, when children die unexpectedly, such deaths are reviewed by a panel of experts. It's not the case here, writes COLMAN DUGGAN
DAVID FOLEY, a 17-year-old boy from Clondalkin, Dublin, died three years ago from a drug overdose, while he was in the care of the Health Service Executive (HSE). He had been placed in a number of emergency hostels from the age of 14.
His sister Linda was quoted in this newspaper recently, saying he had been neglected by the HSE and that an investigation report into the circumstances of his death had not been made available to the family.
Nor had they been consulted in the course of the investigation. Her view is that the HSE has something to hide.
The HSE has not responded publicly to these accusations. David is one of more than 20 children and young people who have died while in the care of the State since the year 2000.
Last week a number of families in similar circumstances organised a protest march to Leinster House. They did so because their young people had been left to drift in emergency care arrangements for long periods, some for several years.
A significant number of the young people who died were cared for by the health service’s out-of-hours service in Dublin city. When a child or young person dies an entire community is moved to tears, because we see it as somehow unnatural and an insult to our hopes for the future. When a child or young person dies in the care of the State, it is a matter of public accountability, whatever the circumstances.
Traditionally, the HSE and, prior to that, the Health Boards, have adopted a position that they are not at liberty to reveal or discuss service users’ circumstances in public. Such respect for the privacy of service users is worthy and appropriate.
However, the question arises: how well founded is such a policy in the circumstances of an unexpected death? What responsibility does the HSE see itself as having to family members of the deceased?
In the case of children and young people who have died while in care, such a policy makes no sense and brings no comfort.
Perhaps if the family of the late David Foley, for example, had been consulted and informed about the investigation and its findings, after his death, they might now be able to grieve and move on with their lives.
If the HSE was to make a statement that could legitimately contradict the family showing that in fact they were consulted and informed, then who could be hurt by saying that in public?
To date no statement has been made. The interests of this family and any other in such circumstances, together with the wider public interest, demands information not silence.
It is part of the HSE’s stated mission to “follow the patient’s journey”. Does following the patient’s journey stop at point of death? Does anyone have a right to deny family members knowledge of what happened in the absence of their loved one?
There is no standardised protocol in the Republic for addressing the deaths of children and, specifically, the deaths of children in care. Before the HSE was established in 2005, regional health boards addressed this issue according to local custom and practice.
Internationally, protocols to address child deaths and deaths in unexpected circumstances on a systematic basis first started in California in 1978. In England and Wales there have been systematic reviews of such deaths since 1991.
Such reviews can usually take the form of statistical analysis or case review. In the UK, finding out what happened when a child dies is now a basic human right enshrined in the Human Rights Act 1998.
There, when a child dies resulting from an established illness or condition, such deaths are subject to statistical analysis, but in the case of unexpected deaths, they are reviewed by professional panels with a range of expertise.
Barry Andrews, Minister for Children, has promised, following the Ryan report earlier this year, that by December this year the HSE, assisted by the Health Information and Quality Authority (HIQA), will put in place a panel of appropriately skilled professionals (both internal and external).
Similar arrangements are to be put in place simultaneously for young people in criminal detention, by the Irish Youth Justice Service. These panels will be tasked to undertake investigation of child deaths in this jurisdiction.
The exacting task and short timescale set out by the Minister, to have these panels up and running, is surely without precedent in our services to children.
Hopefully families concerned can take some comfort from this Guidance and that protocols will provide for consultation and sharing of information with families of such children and young people.
One also hopes that the Minister’s ambitious timetable will be adhered to and that past experience will not in this instance belie raised expectations. Ultimately such Guidance requires to be enshrined in law, as part of a larger address of children’s rights.
- Colman Duggan is a former childcare manager with the HSE