I thank the Minister of State for coming into the House to address the need for the Minister for Health to put in place a special system to enable the births of babies in need of palliative care to be registered in the hospital of their birth, owing to the unnecessary burden being placed on the parents of these acutely ill children in having to travel to local offices to register the birth and, as a consequence, the delay encountered in accessing State services such as medical cards and nursing supports.
Adjournment Matters
Registration of Births
I thank the Senator for raising the matter, to which I am responding on behalf of the Minister for Social Protection.
We all agree that the care of extremely ill children is of the utmost importance. Parents who find themselves in need of such care for their children must be able to access the necessary State supports as soon as possible. I assure the Senator that the registration of a birth does not delay to access to such services. Although the registration of a birth is a legal requirement, it is not the trigger for the delivery of State supports to that child and should not be a reason for any delay encountered.
Many of the supports provided are matters for the Minister of Health, Deputy James Reilly. I include in my response information received from his Department and the HSE. The care of the child is of paramount importance. If a baby is in palliative care, an emergency medical card may be issued by the Health Service Executive. Neither a birth certificate nor a personal public service number for the baby is needed in order to apply for a medical card. If the baby has been discharged from hospital, provision of nursing care in the home may also be provided by the Health Service Executive.
The provision of palliative care is based on Palliative Care for Children with Life-Limiting Conditions In Ireland - A National Policy, which was published in 2010, which provides the foundation and sets out clear direction for the development of an integrated palliative care service for children and their families across all care settings. Following publication of the policy document, the Health Service Executive established the national development committee for children's palliative care. The committee which is chaired by the HSE has overall responsibility for overseeing implementation of the national policy. Its membership includes statutory, voluntary, professional and parent representatives, the Irish Hospice Foundation, IHF, LauraLynn and - the Senator will be familiar with this organisation - the Jack & Jill Children's Foundation.
In 2012 the HSE regions spent approximately €8.58 million on home nursing services for children with life-limiting conditions. However, it is widely acknowledged that because of how the financial system is set up, that figure does not capture all of relevant expenditure and that the total spend is significantly higher.
It is also acknowledged that children with life-limiting conditions, particularly those with palliative care needs, are prioritised in the HSE regions and every effort is made to care for these children to the maximum extent possible. That includes the provision of home care for the children and their families.
Other State supports are also available and are initiated by the birth notification form through which hospitals fulfil their obligation to inform a registrar of all hospital births. A birth notification form outlines the information to be recorded in the register of births and should be completed by one or both of the parents to guarantee that correct and accurate information is registered. Relevant details in the birth notification form are forwarded to various Departments in order that certain State services are initiated, including the provision of child benefit and the assignment of a personal public service number by the Department of Social Protection.
The registration of births is governed by section 19 of the Civil Registration Act 2004. The registration of the birth is carried out based on information provided by a qualified informant who is required to attend at the office of the registrar to sign the register of births. The mother and father of the child are the main qualified informants. Registration is required to be completed no later than three months from the date of the birth.
A birth may be registered in the office of any registrar of births, marriages and deaths, regardless where it took place or the area of residence of the parents. Some of the larger maternity hospitals have registrars on site and a parent may register the birth with them. Parents are required to attend personally for the registration of the birth. Parents can also contact a registrar and arrange for a specific appointment to register. If the parents are in a recognised marriage only one parent need attend. If both wish to sign the register both must attend.
I hope that information is of use to Senator Mary Ann O'Brien.
That information is of great use to me, and I thank the Minister for her detailed and informative reply. I hope everything that she has said is correct. I raised the issue because of the unfortunate case of a family who had a baby in need of palliative care. They found that the system has changed, that registration in hospital is no longer possible and that they needed to go to the births, marriages and deaths office to do that. As the Minister explained, only one parent in a recognised marriage needs to attend but both parents need to go if they are unmarried. I was contacted because the parents were not able to visit the office of the registrar. As the Minister will be aware, anyone who has a seriously ill child are beyond being able to organise themselves. I welcome her comments and I will take her reply back to my constituents. I will communicate with the relevant Ministers if I find that her information is not correct. The Minister mentioned that an exception can made for someone with an extremely ill child and the application can be processed without the PPS, and that is they key matter.
I also thank the Minister for her comforting words - I was not expecting that - on children's palliative care services. However, the reality is that the Jack & Jill Children's Foundation's services have been cut, and people are not getting the HSE support for nursing their children in their homes because the money is simply not there. The provision of such services may be down on paper, but it is not happening in reality, but that is a matter for another evening's discussion.
There is a registrar present in some hospitals. If there is a lack of communication or information available at places of birth, it would be useful for the Senator to come back and let us know, and we can then ensure that the channels of communication are open.
I will do that. Thank you very much, Minister.
The Seanad adjourned at 8.55 p.m. until 10.30 a.m. on Thursday, 26 September 2013.