Children's Hospice Week

ANNUAL REPORT 2017 CONTENTS WELCOME & REVIEW OUR PEOPLE WHAT WE DO OUR PERFORMANCE HOSPICE SERVICE GOVERNANCE & STRUCTURES DISABILITY SERVICES OUR FINANCES FAMILY HIGHLIGHTS OUR FUNDRAISING Our Hospice and Disability Services increased their reach and range of services this year meaning that, in addition to our adult residents, we cared for more children and supported more families Niall McHugh Rachel Nolan than ever before. Service expansion included the Chairman Interm CEO introduction of our Autumn Leaves Program for parents and pre-schoolers and in hospital visits for hospice service users; plus a volunteer ‘Buddy Programme’, Scents of Reference’ communication programme and social activities programme for our disability service users. LauraLynn is committed to extending hospice WELCOME MESSAGE and palliative care services to more children who need them. Children as young as one-week old FROM THE CHAIRMAN are now accessing the service, whilst our cohort of pre-teens and teenagers has led us to begin development of a Transition Care Pathway to ensure AND INTERIM CEO delivery of palliative care extends seamlessly from our children’s service into adult services when a child reaches 18 years of age. We are delighted to introduce you to our 2017 2017 was a year of recognition of LauraLynn and Annual Report and Financial Statements. As you the work we do. Our disability services received a will read in these pages, it was another fantastic very positive appraisal from our first unannounced year for LauraLynn, that saw continued growth, HIQA inspection, with particular recognition of our team’s knowledge of the residents’ needs recognition and change as well as many special and the level of comfort that residents displayed moments and achievements to reflect on. towards staff. We were honoured to receive special recognition service and at the same time welcome Kevin in the Charity Impact Awards (Community Impact and our incoming CEO, Orla O’Brien, who will and Trustee categories), Irish Healthcare Awards be assuming her post in April 2018. (Excellence in Healthcare Management category) 2018 will be another busy year for LauraLynn and to pick up a winning Repak Pakman Award as we develop our next Strategic Plan. for our battery recycling partnership with WEEE More children and families require our services Ireland. Our representation at national and and this increased demand will bring additional international healthcare meetings was strong challenges for funding and recruiting expert too with 7 LauraLynn poster presentations at staff. A concerted and collaborative effort will be the 3rd International Children’s Palliative Care required to progress the children’s palliative care conference in Farmleigh in November. agenda and we are looking forward to playing Our hospice is hugely dependent on fundraised a leading role in this work. income to cover operational costs and despite the Lastly, we would like to thank and pay tribute economic lift, this year was very challenging as we to our donors, funders, supporters, volunteers, strived to reach our target of €3.5m. Trust in the management team and staff who work so hard to charity sector has been damaged in recent years change lives every day. We feel sure that with your and we would like to pay tribute to our generous continued assistance, LauraLynn is well placed to supporters and reassure them of our commitment meet the challenges ahead and deliver more and to being open and transparent about how we raise better services to the children and families who and spend our money. need us…helping us to achieve our vision, that Following three years of exceptional leadership ‘all children who need us can access us’. we bid a fond farewell to CEO Sharon Morrow this year and to Head of Finance Mike Higgins, who also stepped down as Company Secretary. Board Member Mary Ainscough resigned her position and was replaced by Kevin Keating. We would Niall McHugh Rachel Nolan like to thank them all for their dedication and Chairperson Interim CEO OUR VISION All children who need us can access us OUR MISSION To provide the highest level of children’s palliative and disability residential and respite service to the children and adults in our care OUR VALUES Family Life Care WHAT WE DO OUR VALUES LIFE • We believe in putting life into a child’s day, not days into a child’s life. • Making the most of short and precious lives, celebrating and creating memories to last a life-time. FAMILY • Every Moment Counts • Children’s palliative care is a rollercoaster journey for families. CARE Learning that your child has • Children and families are a condition with no cure in safe hands. is devastating. • We care for children with • It’s a time when families need life-limiting conditions by care, support and information providing planned short break so that they don’t feel isolated. stays, step-down, crisis, home support and end-of-life care. • We aim to keep families together and allow them to be “Mums and • We are deeply committed to Dads” (not nurse, doctor, carer). each child and family as a whole. As their needs change, we provide tailored, expert care in a home from home setting or in their family home. WHAT WE DO SOME PEOPLE WHO HELP MAKE IT ALL POSSIBLE TRUSTEES DIRECTORS INTERIM CEO David Andrews Niall McHugh Rachel Nolan (Chairman) Niall McHugh COMPANY David Andrews Michael O’Donoghue SECRETARY Frances Fletcher Nicholas Quigley Kerry McLaverty Kevin Keating Angie Kinane Denise McDonald Michael O’Donoghue Ann O’Driscoll Tony McPoland Nicholas Quigley OUR JOURNEY SO FAR Jane McKenna LauraLynn House Introduced centralised starts fundraising opens - a purpose Sláinte Healthcare Vitro to build a children’s built children’s computer system hospice palliative care unit Short term convalescence Jane McKenna Clinical Education Hospice Service held its for children with rickets merges fundraising & Research Department first Education & Open Day at Children’s Sunshine efforts with CSH set up to lead the way in for healthcare professionals Home (CSH) Children’s Palliative Care to improve referral pathway. 1925 1970’s 2001 2005 2006 2010 2011 2012 2013 2014 2015 2016 2017 Long term residential Hazel House opens LauraLynn@HOME care of profoundly to extend respite pilot programme disabled children care services commenced CSH Hospice Project Children’s Sunshine begins raising funds Home & LauraLynn House rebrand as Disability Service for a paediatric achieves HIQA palliative care unit LauraLynn, Ireland's Children's Hospice registration WHAT WE DO LauraLynn, Ireland’s Children’s Hospice was formed in 2011 following the merging of the long standing Children’s Sunshine Home and the LauraLynn Foundation, and now comprises LauraLynn Hospice Service and LauraLynn Disability Services. All services are run from our main campus in Leopardstown, Dublin 18 Our Hospice Service provides specialised While our Disability Services are funded by palliative care to children with life-limiting the Health Services Executive (HSE) through conditions and support to their whole family. a Section 38 Provider Grant, our Hospice Service We also offers a range of bereavement care, is mainly funded through fundraised income supports and events. and private donations, supplemented with some statutory funding. Our Disability Services comprises Willow View – a residential care service that is home to LauraLynn is a learning organisation with seven adults with complex disabilities - and a volunteer ethos, with highly trained Hazel House - a residential and respite care volunteers supporting staff in all aspects service for children with complex disabilities. of the organisation’s work. HOSPICE SERVICE Children in Ireland living with a THE IMPACT OF life-limiting LIFE-LIMITING condition CONDITIONS 3,840 Approximately 350 50% children with a have palliative life-limiting condition care needs die each year 720 Up to 1 in 5 in need of specialised 30,000+ hospice care Parents, brothers, sisters, relatives and friends are impacted. WHAT IS 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: b Support for the entire family b Provision of information, (including parents, siblings, support, education and grandparents and extended family) training to carers b Specialist short break care b Bereavement support b Practical help, advice and b 24-hour telephone support information b 24-hour access to emergency care b Provision of specialist therapies, b 24-hour end-of-life care including physiotherapy, play and music therapy 6 COMMON MISCONCEPTIONS ABOUT CHILDREN’S HOSPICES 1 3 5 CHILDREN’S HOSPICES ARE WHERE MOST CHILDREN IN HOSPICES WORKING IN A HOSPICE CHILDREN GO TO DIE HAVE CANCER IS NOT REWARDING Although some children come to LauraLynn in On average, about 7% of the children who attend It’s a privilege to meet the amazing children who their final days or weeks, there are many more LauraLynn have cancer. Other life-limiting or need our care—we call them superheroes—and who are known to us over many years as their threatening illnesses include heart conditions, get to know them and their families. They are life-limiting condition progresses. Children with neurological degenerative illnesses such as going through the most difficult experiences a life-limiting condition and palliative care needs muscular dystrophy, all sorts of unusual genetic you can imagine and being able to help them can be referred to LauraLynn at any stage from diseases and metabolic problems. The range of through those times is hugely rewarding for staff their diagnosis. problems is much wider than those encountered throughout the organisation. in the adult hospice world. 2 THEY ARE SAD, DEPRESSING 4 PLACES TO WORK SUPPORT FROM CHILDREN’S HOSPICES On walking into LauraLynn, people frequently DOES NOT EXTEND TO THE FAMILY say it’s not at all how they imagined it would At LauraLynn we understand that the whole be.

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