Submission to Government ahead of Budget 2013
What we do
LauraLynn is a voluntary organization dedicated to the development of a comprehensive service for children with life limiting conditions who require palliative care through the delivery of 24/7 care and support to families as follows:
- Respite care – short planned breaks for the child and family
- Crisis care – in the event of a family needing sudden unanticipated care
- Transitional care – providing step down services from hospital to home
- End of life support – where families cannot manage this phase of their child’s illness alone
- 1:1 nursing/healthcare support – where required either in the family home or at LauraLynn House
- Bereavement and counselling support – to the family before, during and after the death of a child
Since 2008 The Children’s Sunshine Home has seen funding cuts of 19% from the HSE. In the same period the number of children and families in our care has increased. The Children’s Sunshine Home was traditionally a 30 bed unit with little movement of children admitted or discharged. Since 2007 we have not admitted any children into residential care so that we could concentrate on supporting more children and families over time. In preparation for the opening of LauraLynn house in 2011, we have increased our capacity to now accommodate over 100 children. Since September 2011 we have supported 147 children and their families. Sadly 14 children have also died during that time.
Right now there are approximately 350 child deaths a year and more than 1,400 children living with life limiting or threatening conditions in Ireland. In recent research from the UK by Fraser1, it has been estimated that this figure could be at least doubled.
In the Needs Assessment2 into respite services for children with life-limiting conditions, published in 2011, it was estimated that there were 411 children in Dublin – Mid-Leinster and Dublin/North East who had an active palliative care requirement, this figure is estimated to increase to 479 by 2021. A full needs assessment for the remainder of the country – west and south regions of the HSE, is due to be published in December 2012.
While 80% of the children in our care are referred from the Dublin – Mid-Leinster and Dublin/North-East regions of the HSE, we also support children and families from all over Ireland. Many of these supports are very practical such as facilitating appointments at the Children’s Acute Hospitals so that parents can stay the night before or after their appointment when they live long distances from the hospital.
The family accommodation available at LauraLynn House makes life a little easier for these families when the burden of care for a sick child is so great, often as much as a good night’s sleep and assistance with the very basic aspects of care, which can be exhausting 24/7.
The organization has increasingly relied on voluntary fundraising to sustain itself in this period in terms of current expenditure and also to further its capital programme. Despite its extraordinary efforts in the fundraising area, the organization had a €1.4million deficit in 2011 and the projected deficit in 2012 is €1.4million also. This rolling deficit is currently being met by fundraised donations. We project that this deficit will continue into 2013 and we urgently need to have HSE assistance with this as promised in 2011.
This a very difficult situation that we fear would be badly exacerbated by any cuts in funding arising out of Budget 2013. Further cuts would seriously jeopardise the sustainability of our frontline care. Additionally, any curtailment in LauraLynn services would cause a far larger increase in costs for the HSE in other areas.
LauraLynn services = savings to the HSE budget
LauraLynn has always aligned its services to HSE/DOHC policies to provide respite, home support, transitional care and end of life care. This alignment means that LauraLynn compliments services in other areas of the HSE and provides a reservoir of support to the health services generally.
The provision of respite care for children with life limiting conditions is clearly stated as a necessary service for children and their families in the National Policy – Palliative Care for Children with Life Limiting Conditions in Ireland – A National Policy (DOHC 2009). We advocate that children should be cared for at home and where that is not possible that suitable alternative supports such as out-of-home respite care and crisis care be provided in a home from home environment at LauraLynn House. This Policy also clearly states that children should not be provided with respite care in a hospital where there is no acute admission.
Should LauraLynn not continue to support children with life limiting conditions, children will not be in a position to transition home in a timely manner and be provided with that vital respite service they need so badly.
The costs of care at LauraLynn are in keeping with the projected costs as outlined in the needs assessment carried out in Dublin- Mid Leinster and Dublin/North East for out-of-home respite care. LauraLynn is the only service that offers such a service to children and their families in the community.
It follows from this that any cuts in our budget will cause overruns elsewhere in the HSE. Further it will undermine future efficiencies in this area of health care at a time when the needs requirement in this area is increasing year on year.
Our objective at LauraLynn is to extend our respite, home support, transitional care and end of life care services to cater for the significantly increased need in this area. Meeting this objective we argue will provide necessary and irreplaceable services at optimum efficiency to the state.
The National Federation of Voluntary Bodies
LauraLynn is a member of the National Federation of Voluntary Bodies (NFVB). The NFVB this year submitted a separate pre-budget submission http://www.fedvol.ie/ on behalf of all the member groups that we fully support.
For further information contact:
1Fraser, Lorna K, Michael Miller, Richard Hain, Paul Norman, Jan Aldridge, Patricia A. McKinney and Roger C. Parslow. Rising National Prevalence of Life-Limiting Conditions in Children in England J Pediatrics 129,e923; originally published online March 12, 2012; DOI: 10.1542/peds.2011-2846
2 The Irish Hospice Foundation, The Children’s Sunshine Home. Respite Services for Children with Life-Limiting Conditions and their Families – A Needs Assessment for HSE Dublin/Mid-Leinster and HSE Dublin/North-East. 2011.