A National Budget for Children with Life Limiting Conditions

In Blog, Health by Denis Naughten


Dear Minister Reilly,

As you are aware, at any one time there are roughly 1,400 children in Ireland with life limiting conditions. Their families often face an uphill struggle to try to get the home supports required to ensure that their child can, firstly return home from hospital and secondly remain in the home for as long as possible.   To ensure this happens, parents are reliant on the funding made available through the local Primary, Continuing and Community Care office, which can lead to a number of difficulties, of which you as Minister are well aware.

In the last 12 months the various Primary, Continuing & Community Care offices throughout the Country have spent €8.2m on the home care of children with life limiting conditions at an average cost of €47,292 per child (see attached HSE responses to Denis Naughten TD). To streamline this process and address inefficiencies within the system, I am writing to you to propose that a national home care budget for children with life limiting conditions be established by segregating the funding currently being provided by individual PCCCs and diverting it directly to a single national officer within the HSE who would have responsibility for its disbursement. This proposal has been developed in consultation with LauraLynn – Ireland’s Children’s Hospice and the Jack & Jill Foundation, organisations working directly with parents and their children with life limiting conditions.

This would:

-ensure a consistency of care for children throughout the country, and would not be dependent on the funds available to a Local Health Office or the advocate acting on behalf of the child.

-drive efficiency with regard to the delivery of services by ensuring that most efficient form of service can be provided to children with similar needs. Furthermore, such a system would ensure that the most appropriate equipment is made available, and when the equipment is no longer required it can be made available to another child rather than being put in storage.

-reduce the administrative burden and cost placed on individual PCCC offices in dealing with urgent and crisis situations as they arise.

-ensure that health professionals spend more time in the provision of front line services rather than being tied up with an advocacy role on behalf of an individual child.

-gives the national officer the ability to negotiate on the cost of rental of equipment and other services, thereby driving further efficiencies within the delivery system.

-this scheme could act as a pilot for the roll out of individualised funding for children with life limiting conditions. These children, while being a small cohort, have complex health and medical needs, and the office could trial different models of funding, thereby assessing the most appropriate models for the national roll out of the new funding structure in the wider disability sector.

– ensure that children will not be forced to remain in hospital at Christmas, possibly their only Christmas, because the local PCCC has exhausted its budget for the current year.

-release expensive acute paediatric beds (costing €147k p/a) for children who require hospitalisation.


To date funding of care services for children with life limiting conditions has developed in a piecemeal fashion, with a large variation in the level of support depending on the historic policy in each PCCC/Health Board area. Consequently, groups working in this area currently report massive inconsistencies between regions, both in terms of the funding available and manner in which applications are assessed. A national budget would not only address these issues but would also be in keeping with the Programme for Government’s commitment to a personal budget model “so that people with disabilities or their families have the flexibility to make choices that suit their needs best”. Furthermore, it would support the objective of the money-follows-the-patient system funding stream, which in turn would allow for a more accurate collation of services available to children with a life limiting condition.

While I understand that the current approach addresses each case on an individual basis, I do not believe that the benefits of this approach would be lost by centralising resource distribution and limiting regional variation in service.

Minister, at present care of children with life limiting conditions is provided by a small but dedicated cohort of people who know the realities of caring for a sick child. LauraLynn and Jack & Jill save the tax payer millions each year, yet have to waste valuable man power dealing with the inconsistency between regions.

Our proposal would ensure better planning for children due to be released from hospital to home and would act as an effective pilot to commence the stated Government objective of individualised budgets for people with a disability and life limiting conditions; it would maximise efficiencies within the existing budget and provide these children with the optimal care they deserve. As a legislator and medical professional yourself we know these are goals you share and we hope you see fit to consider the inclusion of such a model in the upcoming budget.


Yours sincerely,


Denis Naughten TD

Senator Mary Ann O’Brian

Jack & Jill Foundation


Philomena Dunne CEO

LauraLynn, Ireland’s Children’s Hospice