A Collaborative Nursing Approach In Childrens Palliative Care Eiln N - PowerPoint PPT Presentation

Working Together: A Collaborative Nursing Approach In Children’s Palliative Care EilÍn Ní Mhurchú Liaison Nurse, Jack & Jill Children’s Foundation, Cork. Siobhan Keane Staff Nurse, Kerry Specialist Care Team, Co.Kerry. Terrie Clarke Team Manager, LauraLynn@HOME, LauraLynn, Ireland’s Children’s Hospice, Dublin. Gail Mc Grath Clinical Nurse Co- Ordinator for Children with Life Limiting Conditions, Temple Street Children’s University Hospital.

AIM To inform and demonstrate the collaborative services available to families of children with palliative care needs in Ireland Each speaker will describe the service they provide and demonstrate the approach to collaborative working through the use of a case study (We thank the parents who gave permission to use their child’s story and photographs) •

WHAT WE DO

Jack & Jill Liaison Nurses Jack & Jill Families

SPECIALIST CHILDREN’S LIAISON NURSE In home respite for children with severe End of life care for children neurological conditions 0-5 years 0-5 years

Darragh’s Story

DARRAGH is born Specialist Re- 1/4/2013 PCT OLCHC referred to 1/19/2016 PHN & GP palliative Referred to PCT-homecare 1/30/2013 homecare 3/30/2015 team Jack & Jill MDT-GP PHN CNS Disability, J&J liaison 6/23/2016 2/22/2013 nurse, CNM Paeds, CNCLLC, Primary Nursing Consultant Neurologist Early Intervention Team CNCLLC Consultant, CNS PCT, Parents 6/23/2016 3/6/2013 10/1/2013 10/1/2014 4/20/2015 DARRAG J&J respite HSE homecare package Nursing Laura Lynn H died 4/1/2013 10/30/2013 12/1/2014 7/14/2015 peacefull y at Nursing Nursing Nursing Nursing Nursing Nursing Discharge from Homecare Team home 4/1/2013 7/1/2013 10/30/2013 5/1/2014 10/1/2014 3/1/2015 9/16/2015 6/26/2016 2016 Jan Jul 2014 Jul 2015 Jul 2016 7/3/2013 10/10/2013 4/25/2014 9/14/2014 1/14/2015 6/14/2015 1/6/2016 6/22/2016 Seizures GORD & Seizures PEG Seizures Seizures Seizures & GORD GIT issues, surgery End of life care 1/25/2013 3/4/2014 7/14/2014 2/20/2015 11/23/2015 6/8/2016 Feeding difficulties & Irritability Seizures Feeding issues & GORD Chest infection Seizures GIT 2/6/2014 6/14/2014 8/18/2015 symptoms - NG fed Seizures & GORD Seizures & Secretions feeding distress 3/10/2015 Acute admission - life threatening 3/14/2016 GIT issues & Pain 11/14/2014 ICU Admission 10/15/2015 Feeding & Seizures & Secretions 10/4/2014 Gastritis & Poor sleeping

Darragh’s Adventures Holidays in Wales Ice Skating Play School Barretstown J&J family camp Fota Christmas Experience Disneyland Paris Horse Riding Communion & Confirmation Late Late Toy Show Holiday In Portugal

Collaborative working Services 9 Health care professionals 25-30 In home nursing support 12

What Darragh’s family said…. We couldn’t have done it without the help and support, we would have spent our time in hospital and I really believe Darragh wouldn’t have lived as long. We Darragh did lots of things in his needed all the help but you Eilín life… you were our sounding board. (Darragh’s brothers) (Darragh’s mother)

Thank You November 2017

Specialist Palliative Care Services in Ireland

Kerry Specialist Palliative Care Team • Day Care Services • Palliative Care Team in an Acute Hospital • Medical reviews with a Palliative Care Consultant • Homecare Teams • Inpatient Unit due to open before end of year

Éanna

Éanna is born Teleconference MDT with parents 9/7/2015 10/27/2015 Discharged Home 12/1/2015 Dermatology and Palliative Care Dermatology & Dermatology CNS Homevisit Consultant Visit Pal Care OLCHC 9/12/2015 12/1/2015 8/10/2016 CNCLLC GP & PHN Teleconference MDT 9/30/2015 12/2/2015 10/13/2016 Debra Ireland Homecare Team Early Intervention Team (KIDS) Éanna passed away peacefully at home 9/30/2015 12/2/2015 2/17/2016 10/25/2016 Jack & Jill Nursing Nursing 1st Birthday Bereavement Visits 10/1/2015 12/4/2015 3/17/2016 9/7/2016 11/30/2016 2015 2017 Sep Nov 2016 Mar May Jul Sep Nov 2017 9/7/2015 1/6/2016 3/8/2016 5/12/2016 8/3/2016 10/25/2016 Wound Care Teething Apnoea episodes Lethargic Irritability & Agitation Pulmonary Congestion & Pyrexia due to Itch 9/7/2015 1/1/2016 4/11/2016 Pain Urinary Symptoms Sweating 7/29/2016 GIT Bleeding 12/22/2015 3/24/2016 Oral Thrush Poor sleeping & GIT Issues 7/26/2016 Photosensitivity 12/10/2015 3/8/2016 Constipation Stridor 6/24/2016 Urinary Symptoms 12/10/2015 3/8/2016 Vomitting Pyrexia 6/20/2016 Blistering to Eyes 2/19/2016 Nasal Congestion & 6/15/2016 Chest Secretions Laboured Breathing 6/14/2016 Abdominal Cramps

Challenges • Geographic Location • Rarity of condition • Uncertain prognosis • Adult services providing Paediatric Care • Education • Resource implications • Co-operation with other teams (O’Leary et al. 2006, O’Brien and Duffy 2010, Quinn and Bailey 2011)

Parents Thoughts “It can be done” “ He knew nothing but LOVE”

LauraLynn Ireland’s Children’s Hospice Terrie Clarke CNM2 – Team Leader, LauraLynn@HOME

WHATIS CHILDREN’S HOSPICE CARE? Children’s hospice services provide interdisciplinary care for children with life-limiting conditions and their families. The aim of these services is to meet the physical, emotional, social, and spiritual needs of the child and family through a variety of services, including but not limited to: • Support for the entire family (including parents, • Provision ofinformation, support, siblings, grandparents and extendedfamily) education and training tocarers • Specialised short breakcare • Bereavementsupport • Practical help, advice andinformation • 24-hour telephonesupport • Provision of specialisttherapies (including • 24-hour access to emergencycare physiotherapy, play and musictherapy) • 24-hour end-of-lifecare

WHO ATTENDSLAURALYNN? Although predominantly Dublin-based (44%), children and families came from 22 counties to avail of the services of LauraLynn in 2016. The exceptions were Counties Sligo, Kerry, Wexford and Carlow. Children of all ages attended LauraLynn’s Hospice Service in Children accepted in Children active in 2016. 2016 2016 Children Children Total 48 153 accepted in 2016 active in 2016 Age Ulster 0-1years 12 17 Connacht Children 2 accepted Children 3 2-5years 11 42 accepted Children 7 Active Children 8 Active 6-10years 14 52 Leinster 10+ years 11 42 Children 34 Munster accepted Children Active 115 Children Total 48 153 9 accepted Children 21 Active Other Children Active 2

Interdisciplinary team Volunteers Health & Social Care Professionals • Planned sessions of care/ • Provide information Short Break Stays • Comprehensive programmes of • Unplanned sessions of care/ family support (family camps, play Emergency Stays sessions, sibling camps) • Step-Down Care Family Reported Outcome Measures • Legacy/Memory-Making • Bereavement Programmes • structured – Memorial Service, Time-to-Grieve • Access to our interdisciplinary programme team 24/7 • Unstructured – phone calls, • Short break stays to focus on visits to LauraLynn House Holistic Needs Assessment symptom management • Detailed symptom assessmen t • Based on family’s preferred location • At home • At LauraLynn House Home Hospice • Hospital In hospital

Paediatricians Friends & Voluntary Relatives Services Social Who Can Parents Worker Refer? GP Schools Children’s Therapists Ward

Tuiren

J&J, St. Francis Homecare & PHN 10/2/2016 Tuiren Cerebral US, Echo & CT Brain Palliative Care 9/29/2016 Consultant MRI Brain & Spine Homevisit 9/30/2016 10/7/2016 Laura Lynn Tuiren passed 10/2/2016 away Nursing peacefully 10/4/2016 10/8/2016 Discharged Home Attended ED 10/4/2016 9/21/2016 LauraLynn & SFH home visit Tuiren is Born Attended ED Attended ED & Admitted 10/4/2016 8/29/2016 9/8/2016 9/23/2016 2016 2016 Day 1 7 13 19 25 31 37 8/29/2016 9/8/2016 9/30/2016 10/4/2016 Vomiting Infected Naval EVD inserted End of life Care 9/24/2016 8/29/2016 Laboured Breathing 10/4/2016 Reflux & Feeding Issues CSCI 9/21/2016 10/1/2016 Chesty & Cough Extubated & EVD removed 9/29/2016 10/4/2016 Intubated & Secretions & Seizures Ventilated 9/29/2016 Hydrocephalus, Dilated Ventricles & Large Right Mass 9/29/2016 Bradycardia, Tachypneoa, CRT 4 secs 9/29/2016 Bulging Fontanelle

Memory Making  Offered at any time during the child’s life and death  Allows family to continue to engage with their child in a meaningful way  Family events and activities can be planned to promote memory making  Can occur in LauraLynn House, at home, or in the hospital

Clinical Nurse Co-Ordinator for Children with Life Limiting Conditions Gail Mc Grath

Map of catchment areas Area 1& 8 Irene O’Brien – OLOL Area 1 – Helen McDaid, Drogheda Letterkenny Area 8 – Mullingar Area 2 – Colette Goonan, Area 9 – Gail McGrath and Alison Galway Cashell, TSCUH Areas 6 & 7 – Laura Flaherty and Alison Cashell, OLCHC Area 3 – Hilary Noonan, Limerick Area 5 – Liane Murphy, Waterford Area 4 – Tyrone Horne, Cork 28