LauraLynn children's hospice: 'It's not just about end-of-life support'

Ahead of Palliative Care Week, charity launches satellite service in Mallow to provide additional support for children with life-limiting conditions and their families living in the Cork and Kerry region

Marie Lynch: 'We are hoping to double the number of supports for children by 2024.'

LAURALYNN has launched a satellite service, based in Mallow, which will add an additional layer of support for children with life-limiting conditions and their families in the Cork and Kerry region. The new service will complement the existing supports in the region, offering easier access for families living in those counties.

“Travelling to LauraLynn’s campus in Dublin can be difficult for families living as far away as Cork and Kerry, especially when travelling with a very sick child, so it is important that these services can now come to them as well,” explains Marie Lynch, regional hub team lead, LauraLynn Children’s Hospice.

“The new satellite service will work collaboratively with services that already exist, and will complement those existing services supporting children and families in the region.”

As a hospice for children with life-limiting conditions and residential care for children and young adults with disabilities, LauraLynn employs over 140 staff within its teaching, fundraising, and care provision departments.

Established in 1923 as a convalescence home for children from the inner city, the organisation has evolved to the opening in 2011 of LauraLynn House, a dedicated children’s palliative care unit and award-winning healthcare facility.

Its 3.6-acre site also encompasses Hazel House, Holly Oaks, and Willow View, residential houses providing care for young people with intellectual disabilities funded by the HSE and guided by Hiqa’s key principles of care. LauraLynn is aiming to double the number of children it supports by 2024.

Living as well as possible

Palliative Care Week, running from September 11 to 17, is a highpoint in the LauraLynn annual calendar. This year’s theme is ‘living as well as possible’.

“We aim to raise awareness and increase understanding of the benefits of palliative care and the positive impact it has on the quality of life of a person with a life-limiting condition and their family and carers, across the island of Ireland,” Marie explains.

“Palliative care focuses on the person’s physical, social, emotional and spiritual needs, and also supports the person’s family, carers and those close to them.”

The palliative care team of health and social care professionals works alongside family carers and volunteers to provide supports for the person and their family, tailored to meet their individual needs.

The care provided by the palliative care team endeavours to support the person to live as well as possible, regardless of the person’s age, condition or stage of illness.

Children’s palliative care differs to adults in that children can receive the service for many years throughout their illness.

“At LauraLynn, palliative care benefits both the child and their entire family and does not always have to be medical. Children’s palliative care is all about enabling the child and family to live the little moments and spend time together as a family, living as well as possible.

“For many families caring for a child with a life-limiting condition, doing routine activities like a simple trip to the park, for instance, might not always be possible. Time at LauraLynn allows families to spend time together and to enjoy being a family with the medical needs of their child taken care of.”

Marie highlights that early referrals to child palliative care are beneficial.

“LauraLynn is not just for end-of-life care, but where children and families are enabled to ‘live as well as possible’ right from the point of diagnosis through to end-of-life and into bereavement.

Shattering myths and misconceptions

"At LauraLynn, we are always aiming to break misconceptions and bust some common myths that surround children’s palliative care," she says.

A common myth is that palliative care is only given to children in the last days or weeks of their lives. “Palliative care for children is the active total care of the child’s body, mind and spirit, and also involves giving support to the family. Children’s palliative care may be offered from point of diagnosis, or recognition of a life-limiting condition, right through to end of life.”

Another myth is that hospice care is only for children with a few days or weeks to live.

“The end-of-life care needs of children differ from those of adults,” says Marie. “A child may be diagnosed with an incurable illness as a baby, but may live into late adolescence or beyond. Their physical, emotional, social, and educational needs will change as he or she grows.”

Marie also addresses another myth about working in children’s hospice or palliative care services: “While there may be moments of sadness, at LauraLynn children live the little moments.

We help children with life-limiting illnesses and their families to make the most of the little moments together.

"As a result, it is a very happy and fun place to work, days are filled with memory making moments and laughter.”

The LauraLynn model of care describes its supports within five pillars: Direct care, family support, symptom management, end-of-life care, and bereavement support.

“We ensure all children and their families have equitable access to our palliative care services that are flexible, planned, person-centred and takes account of their physical, emotional, social and spiritual needs. Compassionate care and support is provided in a friendly environment and to facilitate a supportive network for the child and family,” Marie explains.

While 25% of referrals are for children with a cancer diagnosis, LauraLynn also supports children with a wide variety of conditions within neurology, congenital, respiratory, metabolic, perinatal, and circulatory varieties.

Among the key messages of palliative care are: Helping to improve the quality of life of the person with a life-limiting illness to allow them to live as well as possible; and providing a care plan tailored to the physical, emotional, social, and spiritual needs of the individual, their family, carers, and those important to them.

“We provide support not just at the end-of-life, but throughout the illness, from diagnosis and as the illness progresses,” Marie says.