The recent appointment of a Palliative and Life Limited Services Nurse in an acute setting in Northern Ireland is the first of its kind.
Northern Ireland Hospice has been working closely with the Strategy for Children’s Palliative and End of Life Care, set out by the Department of Health in 2016, which has led to the first professional, Rosie Hanna, being appointed to the role.
Rosie was formerly an A&E staff nurse at the Royal Victoria Hospital for Sick Children before becoming a staff nurse at Northern Ireland Children’s Hospice.
Known as the ‘PALLS’ or ‘Coming Home’ service; Rosie has been in the post – which is 50 per cent funded by the Health & Social Care Board until April 2020 – for approximately 15 months and is hugely encouraged by the growth in referrals and importantly, educating fellow professionals about the holistic approach the hospice can offer families and children.
The Coming Home service offers a dedicated palliative care cot or bed for children coming from the Royal Hospital for Sick Children or the Royal Jubilee Maternity Hospital. However, it is a ‘virtual service’, that is, the care and support provided with the bed can be provided within the family-centred environment of Horizon House or, where possible, it can be provided within the child’s own home.
The Coming Home virtual bed allows children’s palliative to be delivered in any setting.
A bed in Horizon House will be immediately available should it be decided that the child’s best interests are better met in the hospice environment to access specialist equipment or care.
What is the Role of a PALLS Nurse?
Rosie Hanna: This role allows me to meet and support families and children who have either been diagnosed with a life-threatening or a life-limiting condition that means they will need palliative care support.
We know that annually we care for more than 300 children per year at Northern Ireland Hospice but we are also aware that many children were not known to for various reasons like professional education and awareness.
The thought process was that by putting a nurse into that acute setting the aim would be that more children could receive palliative care via the Coming Home bed in any setting, hospital, home or hospice.
Did You Discover Any Challenges?
Rosie Hanna: You would be surprised at how many professionals did not know about children’s hospice or even that there was one in Northern Ireland.
Some professionals would say that while they did know of a children’s hospice in Northern Ireland, they did not feel, for a number of reasons, that it was appropriate to bring it up with a family. There was also a concern for professionals that having cared for a child for a period of time, they were reluctant to refer them to an environment outside of hospital that they have limited knowledge of.
We have known for some time that a fraction of children in need of palliative care were being referred to us. We knew there were children dying in hospital and dying in the community and while the support they were receiving was good enough, that was, unfortunately, not being followed up with bereavement care and support.
That’s an important thread on any family’s journey. We are also now positioned to educate professionals so that they can identify children who can also be using our services. It’s also about meeting more families and meeting them earlier.
Perception is another issue that we have had to challenge – the belief that palliative care equals end-of-life care is something we need to differentiate – that’s the case for professionals and families.
It’s normally the case that when palliative care or hospice care is mentioned that a family will gasp.
My position is to explain to professionals and families really what palliative care and what outreach services can be made available to them.
Is the Role Working?
Rosie Hanna: The role is absolutely working. We are seeing families availing of children’s hospice and are very appreciative of it. We have needed this role in Northern Ireland for a long time.
I worked in A&E in Children’s Hospital before joining the hospice and I know the professional communication challenges being in that setting also. To have that link between hospital and hospice, we are now seeing things move much faster.
For more information about the ‘PALLS’ or ‘Coming Home’ service, visit www.nihospice.org.