Together for Short Lives’ ‘Children’s Hospice Week’ is dedicated to raising awareness and funds for children’s hospices and the babies, children, young people and their families that they support. The week showcases stories from families that illustrate the importance of children’s hospices for children with life-threatening and life-limiting conditions and celebrates the dedication and compassion of hospice staff and volunteers.
This year Together for Short Lives asks what life would be like without children’s hospices? At the moment, there simply isn’t enough money or staff to provide all the lifeline care children who are seriously unwell need. This year’s Children’s Hospice Week looks to increase awareness of the incredible work that children’s hospices do, improve understanding about children’s palliative care while raising much-needed funds for children’s hospices across the UK.
In their recent report ‘Built to Last?’, Together for Short Lives found that families caring for children who are seriously unwell aren’t getting the care they need, because our children’s palliative care sector just isn’t built to last and the extent to which they can access the palliative care they need depends on where they live. All children’s hospices believe that every family deserves the chance to make precious memories with their child – supported by the right care, at the right time, and this shouldn’t depend on their postcode. The report also found that there is a £310m funding gap for children’s palliative care which is just 0.16% of NHS England’s annual budget.
Noah’s Ark Children’s Hospice supports Jana Catlosova, Robert Holland and their two sons, Samuel, aged 5, and Freddie, aged 7, from Enfield. Noah’s Ark Children’s Hospice has been supporting the family since 2020 when Samuel was diagnosed with a chromosomal abnormality called Partial Trisomy 13 which can cause face, brain, heart and growth abnormalities. In Samuel it has caused numerous conditions, including but not limited to, global developmental delay, hearing loss, low muscle tone, eating difficulties and hypoglycaemia. Currently Samuel is having problems with sleep but is generally doing well: ‘Samuel is getting more vocal, engaging more at school and getting more explorative and confident.’ Samuel is now making choices for himself and is communicating those choices about where he wants to go and what he wants to do.’
At the time of Samuel’s referral, the family were accessing most of Noah’s Ark Children’s Hospice’s services, respite stays, specialist care and nursing, Music, Hydro, Art and Occupational Therapies, Family Activities, Specialist Play and their own dedicated Family Link Worker. Now Samuel and Freddie are attending school full-time, Noah’s Ark Children’s Hospice has tailored their services to meet the family’s needs, Robert says: ‘The support that Noah’s Ark Children’s Hospice has provided has adapted and grown and has really kept pace with us.’
Sophie Andrews OBE, CEO of Noah’s Ark Children’s Hospice said: ‘We want to be there for more families like Jana and Robert’s now and into future. To achieve this we need sustainable, inflation-tracked funding that reflects our role in both the community and in relieving NHSE health and social care.’
